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Moose here - again. Following on from my epilepsy thread.

(639 Posts)
moosemama Thu 14-Mar-13 16:45:40

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

moosemama Thu 14-Mar-13 16:47:23
LeonieDelt Thu 14-Mar-13 16:56:20

thanks for this moose.

your posts are teh highlighted ones yay!

moosemama Thu 14-Mar-13 16:58:24

What's this about highlighted posts?

No-one is highlighted on mine - is that because of the MN view I have? confused

LeonieDelt Thu 14-Mar-13 16:59:55

getting a bit above her fucking station telling the neuro to haul me in for ambulatory monitoring? That's for people they think are psychogenic /faking it / putting it on.

LeonieDelt Thu 14-Mar-13 17:14:28

could be, moose. i have mine set to highlight the OP's posts - that's how i can easily tell yours from couthy's...

moosemama Thu 14-Mar-13 17:20:31

Did the GP actually put that in her referral letter! shock angry

I hope she is suitably cowed by his response.

LeonieDelt Thu 14-Mar-13 17:38:28

i havent had the referral letter, but the responses are telling.

He replies to her that "I dont think there is any clinical reason for doing an ambulatory EEG."

- therefore she must've requested it in her referral letter.

and "I have to admit that the history i got today was entirely consistent with complex partial seizures rather than a panic disorder."

- therefore she must've suggested it in her referral letter.

She wont let me have a copy - she claims the surgery manager must approve it and she's on hols for two weeks.

LeonieDelt Thu 14-Mar-13 17:39:32

i have pain in my neck for the first time in 9 days.

What the fuck kind of choice is this, my immune system blowing up OR going back to chronic pain, nevermind seizures?

moosemama Thu 14-Mar-13 17:40:01

I am stressy tonight.

The panel met yesterday to decide if they are happy to meet the funding band that the indie want for ds1. Statementing Officer was off yesterday and in a meeting all day today (we knew this in advance) but said she would try and get back to the office and email us the outcome if she could, if not we will have to call her tomorrow.

No email today. sad

Ds1 is an absolute wreck and he doesn't even know that his place isn't definite.

I had him up sobbing for hours last night because he just can't cope with the thought of leaving his primary school. He was inconsolable. sad Then he was up half the night with nervous tummy and late this morning, because he was sat on the toilet again.

His TA sent me a note today asking when he will be going to visit his school again because she wants to start transition support, but I can't tell her.

If they ever bloody finalise the details and name the school I want to call an emergency AR and bring in the indie to be heavily involved, because at this rate he's not going to make it that far - he doesn't just need transition support - he needs holding up and carrying through the process. I am worried sick about him.

Distracting myself in the morning with a haircut. Having several inches off and a full fringe - hoping to hide some of my wrinkles! blush

moosemama Thu 14-Mar-13 17:41:05

Oh Leonie, I hope they can find a good alternative for you quickly, you were doing so well. sad

LeonieDelt Thu 14-Mar-13 17:42:39

DD1 is also going to react the same way wrt schools - she's already worrying and she's in Y4 fgs.

I hope they hurry the fuck up for your DS. your LA is even worse than mine, and that's telling!!! sad

moosemama Thu 14-Mar-13 18:00:00

My LEA have a rep that goes before them. IPSEA can't stand them.

He just opened a letter he was given to him at school today. It was from the 'looked after child' who was moved to an EBSD (sp?) school last week. Lovely boy, I really liked him, but he was always getting himself into, often dangerous, scrapes through his curiosity, zest for life and lack of impulse control. Ds was heartbroken when he left, but he came in today to say goodbye and gave ds a letter thanking him for being such a good friend and asking him to keep in touch. Ds was so pleased. smile

It really backed up what I told him last night about how his true friends will want to keep in touch and they will find a way to stay friends, be it email, writing letters, phone calls or regular meet-ups.

LeonieDelt Thu 14-Mar-13 18:52:57

aww, your DS. too sweet. Its lovely when friends stay in touch with them outside of school - its hard for DD1 for this reason, her best friend doesnt go out much (cultural/religion i guess) and DD1 struggles to get any outside contact. and face it, a 4 1/2 year old autistic sister isnt much for companionship when you're 9... they love each other to bits, they really do, but sometimes DD1 just needs that bit more, you know?

LeonieDelt Thu 14-Mar-13 18:54:18

his true friends will want to keep in touch

exactly. this is so hard for them moving upwards but so true. bless him.

moosemama Thu 14-Mar-13 19:17:37

Ds rarely sees his best friend outside of school, but I've promised we will arrange regular contact/meet-ups when they are at separate secondaries. He lives within walking distance and has promised he will walk over to ours regularly. We can't allow ds to do the same, but I've told him I will follow him to his friends, a hundred yards or so behind with the dog, so it doesn't look like I'm 'with him'. I can then make sure he get's there safely and can do the same in reverse when he wants to come home.

We're getting him a mobile before he starts secondary as well, so that will help.

LeonieDelt Thu 14-Mar-13 19:22:26

Mobiles are cool. DD1 has one, but she doesnt use it much! argh.

LeonieDelt Thu 14-Mar-13 20:23:10

I hope Couthy's ok. Beetlejuice!

LeonieDelt Thu 14-Mar-13 22:35:47

I may finally have the rash. O.O

MerryCouthyMows Thu 14-Mar-13 23:56:31

Oh god, Leonie, your GP really is a douchebag, isn't she?!

Am ok-ish, pain hit a high that had me sobbing in a taxi on the way home from Tesco this morning (after a barney with twat ex). Ex did carry bags in the end, but I got hurt packing the trolley in Tesco, hence the row (he got distracted by DS2 who was off school sick bloody vomiting bugs can eff right off now ta ).

Then took naproxen on pharmacists advice. Helped lots, left me feeling half pished though.

Then took a call asking for a home visit tomorrow from a housing officer because I might be being given a full size 4-bed+ dining room house just up the road, where I need to be, with room for everyone.

Only problem? Visit tomorrow + Skaggy house = tidying up when I should have my feet up...

Ex then redeemed himself by being significantly less twatty than usual and did most of the tidying, just letting me direct him. Which NEVER happens. But it did. So I am most thankful for him suddenly being UN twatty!!

House ok -ish now, and 4-bed+ dining room house that I'm being interviewed for will be ready in 8-10 weeks if I get it...

<<crosses any body parts that haven't recently been burnt away...>>

MerryCouthyMows Fri 15-Mar-13 00:01:21

I have the opposite problem with schools - DS1 is sobbing that he still has to wait till July to get the fuck away from the school that he's IN.

Mostly because he is so unsupported there. This is a child that HATES change, would wear the same clothes for 30 days in a row if it meant not having to run the risk of wearing less comfortable clothes etc, a child that hates going out at the weekend unless it has been planned for 3 months in advance...

But he so NEEDS to be out if this school where he is so unsupported.

I need to go order some rice milk chocolate substitute so that I can make DS3's Easter eggs, but I shall return...

MerryCouthyMows Fri 15-Mar-13 00:02:45

I'm getting really worried about you, Leonie. If you have the rash, please go to A&E, your GP isn't taking you seriously, and I want you to get seen by someone who will take you seriously.

NoHaudinMaWheest Fri 15-Mar-13 00:09:15

Couthy good luck for tomorrow. Crossing everything for you too.

LeonieDelt Fri 15-Mar-13 07:17:19

I have four bumps around my buttom, mucosal type skin. Last night they were like pimples but when i touched them they popped.

Today they are flatter and broader with a red ring around them.

If there arent fewer of them by the weekend, i will go to A&E cos the fucking GP isnt believing me, and it is just too coincidental to get these spots THERE, where i NEVER get spots, you know?

Good luck to everyone for today xx

LeonieDelt Fri 15-Mar-13 08:19:40

i've never been spacy off naproxen - just heartburn, and lots of it!

i hate NSAIDS anyway.

LeonieDelt Fri 15-Mar-13 09:50:37

my body hurts today - my left hip feels like the joint is giving out, my right calf is tight like i pulled it in my sleep, my tongue is sore, and i have no idea what any of it means, what i should DO about any of it with a GP who doesnt believe me...

lamotrigine's half life is something like 30 hours - my temp is finally back to normal and the tops of my thighs are almost normal, my knees are still a bit swollen, but in reality, i took my last dose on Weds morning at 7am - with a 30 hour half life, i'm only down just over 1 half life, which means i still have almost half of it in my system, and its still affecting me. Until 5 half-lives pass, it'll still be affecting me...

its DH's 40th birthday and i'm tryin not to ruin it with my issues sad

LeonieDelt Fri 15-Mar-13 09:54:45

i feel like a soap opera today. a train wreck. this much bad shit couldn't possibly happen to me, could it?

LeonieDelt Fri 15-Mar-13 10:21:17

Consultant's sec rang, new drug time but they want to see me first? So i have an apptmt for monday morning.

Oh, and he wont authorise the secretary giving me a copy of my eeg and MRI. ???

MerryCouthyMows Fri 15-Mar-13 11:03:19

Too expensive to copy the MRI is my guess, though no clue on the EEG, that's easily photocopy able.

House is as good as it's going to get, which isn't great, but it's not exactly the ideal time for this.

Happy 40th to Leonie's DH.

I am really concerned that nobody wants to see you, or believe you, when you even have a yellow card.

Then again, it always seems to be the case with epilepsy - never taken seriously and expeditely. It's why I lost my peripheral vision, because the Neuro left me over a weekend on Topamax.

Really pisses me off tbh.

I really hope it starts to get better, not worse. Hopefully by Sunday afternoon / Monday morning you should feel a bit better?!

It took about 4/5 days in total for the Topamax to totally leave my system.

Do you know the worst of it? The only time I had full control of my seizures was when I was ON Topamax, despite the horrific side effects!!

LeonieDelt Fri 15-Mar-13 11:38:15

i didnt want the mri copied, i just wanted the interpretations of the mri/eegs. you know, the paper printouts.
i'll ask to look at them on monday, if i remember. if i dont, then i dont. its more aggro than i have capacity for right now.

i'm beginning to feel like i've made a majour mistake tbh. maybe i overreacted? Maybe now consultant thinks hmm, maybe that GP was right about panic disorder?

that said, i let slack on the piriton yesterday and my hip is burning toda and the back of my right knee has gone red again, so i know that if i dont keep up the symptomatic stuff, i'll still have the problems...

i'll see a different member of consultant's team on monday, which is fine. I guess they need to "see" me so they can find out what kind of reaction i had, so they know which pills to go for next??

i dont know that its the epilepsy that is the problem, i think its the damn "panic disorder" that must clearly be in my referral letter! sad It must be that which is keeping everyone from taking me seriously? sad

WHY did i react to it this time and not 12 years ago?

All i did was report symptoms as it said to do in the leaflet sad

LeonieDelt Fri 15-Mar-13 11:40:04

oh couthy, i felt so GOOD on lamictal! sleeping 10 hrs a night (and enjoying it), calm during the day, hardly hungry, most of my "worries" were gone, racing mind was calm, etc etc... i only had 3 seizures in 9 days and they were al on the same day so they count together iyswim... no headaches, no chronic neck pain, i could lay on my back for the first time in my life...

so i know what you mean about the topamax, its a damned shame!! gutted utterly.

LeonieDelt Fri 15-Mar-13 11:47:40

even if it isnt an allergic or hypersensitivity reaction, the burning is almost intolerable... it makes it so hard to walk, and pulling my trousers up and down to use the toilet or get dressed is very painful.

surely to god i didnt overreact in telling someone about that?

moosemama Fri 15-Mar-13 13:14:36

Gosh, I go out for one morning to get a much needed haircut and I'm really behind the thread.

Couthy, sorry you are in so much pain. I have Naproxen for the CRPS and it does make me woozy. If I take it with cocodamol I sleep like the dead for hours and hours on end.

So pleased for you re the new house, it's about time you caught a break with something. Glad ex finally manned up and decided to help as well.

Leonie, you are more likely to react to a drug if you have a break from taking it and then go back to it - for the same reasons as no-one reacts to a wasp or bee sting the first time, but can then go anaphylactic on the second sting. It's because the system has already created antibodies to the perceived invader and they go into overdrive when the meet the same invader again.

The hospital will be aware of this and they do want to see you, knowing that you've already stopped taking the drug, so they are taking it seriously.

As for the MRI and EEG copies, don't worry about what they are thinking about you having asked for them, just tell them it's standard practice in the USA, so you just assumed you'd get a copy and thought it was an oversight.

Happy 40th to your dh. smile

moosemama Fri 15-Mar-13 13:18:27

... and in my news ....

Ds got his funding for the indie school! grin

Dh called this morning and they confirmed that the statement is being reissued today with the indie school named, they have done an internal transport request and the Officer says it's pretty much a foregone conclusion that he'll get transport.

I feel like a massive weight has been lifted off my shoulders.

Have IEP review next week and I shall take such pleasure in informing the SENCO that he has had his place confirmed, because she was so snotty about it a couple of weeks back.

LEA Officer also said the school should call an immediate AR, inviting the new school, to discuss transition arrangements and sort out his orientation visit. If they don't say they are going to do so asap at the IEP meeting I will call an emergency AR myself, based on the state ds is already in re transition.

I am a leetle bit in shock I think. I can't quite believe it's actually happening! grin

Oh - and other news - I actually like my haircut for once. blush

LeonieDelt Fri 15-Mar-13 13:21:57

moose, thank you. I'm feeling very weepy today. I expect its the cold turkey off the meds and the return of all the pain.

gutted that lamotrigine hasn't been the magic bullet I needed, very sad that I felt so good and can't keep it, scared that they'll think I'm overanxious and inventing symptoms in my head, and angry at my Gp form bring s first class cunt.

and worried I'll never find a med I can live with.

LeonieDelt Fri 15-Mar-13 13:22:58

MOOSE!!!!!!!!!!!!!

omg that is the best news ever! I am so, so so happy for you and your Ds!!!

what a wonderful bit of news. wowee. so glad they finally saw sense.

LeonieDelt Fri 15-Mar-13 13:22:59

MOOSE!!!!!!!!!!!!!

omg that is the best news ever! I am so, so so happy for you and your Ds!!!

what a wonderful bit of news. wowee. so glad they finally saw sense.

LeonieDelt Fri 15-Mar-13 13:23:17

damn, I'm so excited I posted twice! whee!

LeonieDelt Fri 15-Mar-13 13:23:47

couthy I hope the pain starts to head off and you have a better day,

and that new house would just be amazingly awesome.

moosemama Fri 15-Mar-13 13:32:56

Thanks Leonie, I hope we get similar good news when it's your dd's turn - then our dcs will be at school together! shock

So sorry you are so low, it's not surprising, but it's totally unfair on you.

I will keep everything crossed for you that the next drug they try you on will be 'the one'.

((hugs)) x

MerryCouthyMows Fri 15-Mar-13 13:35:38

House lady is running late - I'm going to have to go to my GP appointment (about my joints & trying to get a referral somewhere, because even if it's not Rheumatoid arthritis, it's still some kind of arthritic pain.).

Can't miss it as GP is coming in early specially for me.

House lady has rearranged to come out at 3.30pm, which is going to he very 'tight' with the school run by bus...

Always the way with me - book appointments that don't even overlap (11-1 & then 2.15), yet something always goes wrong...

And yes, I HAVE discovered that while naproxen makes me woozy, if it's combined with cocodamol I sleep like the dead. Which in my case is probably more to go with the cocodamol because that names me sleepy on it's own!

MerryCouthyMows Fri 15-Mar-13 13:37:39

OMG, Moose! YAY!!

I'm so glad for you & your DS that things are working out with education.

That has made me cheer up! grin

LeonieDelt Fri 15-Mar-13 13:38:51

well my biggest hope is that the consultant isn't mad at me for this. ep action just told me absolutely did the right thing stopping the lamotrigine and should really have stopped it Monday instead of waiting til Wednesday, which I kinda knew anyway. she also suggested taking photos of any rashes I get, so I'll see what I can manage there.

I just don't want to lose my diagnosis or have it changed to 'psychogenic'.

and cold turkey off of lamotrigine after only nine days is not funny. no physical six, just a lot of emotions.

LeonieDelt Fri 15-Mar-13 13:42:07

six means sx

overlapping appointments is the story of my life. hope you manage to find out what causes the pain, couthy xx

imagine our kids in school together moose! we're still not sure what to do wrt schools - I've had so much epilepsy battle to do, i've had to let go of the school battle for six months - not good really. dd2 isn't getting the salt therapy finalised in her statement six months ago, dd1 is almost finished with y4 and we still don't know where to look, etc.

moosemama Fri 15-Mar-13 13:49:24

Leonie - we can be on the PTA together! <fails to admit I have never been on a PTA in my life>

We have had to just give in this year re ds's current school. He's not getting his statement provision, despite the school being caught out in front of the LEA Officer - they are filling in forms and ticking boxes, but not giving the support and his bloody TA keeps upsetting him with her size 10 boots and total inability to understand ASD.

You have plenty of time to check out schools for dd1. Most people start in Year 5 and visit the school open days in the autumn term, which are actually designed for the current y6, but it helps to do it early, so you know what to discuss at AR. We missed the boat on all that, because ds's statement was only finalised in the summer holidays between y5 and y6. Ellen is a good one to speak to about all this stuff. Might help you to hang out on this year's secondary transition thread as well, as we/they've all just been through the whole process.

LeonieDelt Fri 15-Mar-13 14:14:14

ooh good idea re the thread. will look later.

imagine us on the same PTA - the PTA wouldn't know what hit em! wink

MerryCouthyMows Fri 15-Mar-13 16:40:47

House is too small, so they won't accept he for that one. However...I have passed the tenant check, so I won't need to go through that again, and she has given me some 'inside information' on the two 4-beds that are coming up in the next few weeks.

So it's looking hopeful, to a certain extent.

The only issue is that my medical needs forms were considered at the last panel, they asked my (very slow...) GP for some further information about mine & the DC's issues, and they are going to decide whether I move up to the top band for bidding at the next medical panel.

If I move up, one of these 4-beds will likely be mine. If I don't, they might not be.

So as the first 4-bed will be up in either next week or the week after's bidding cycle, and the other the week after, it all hinges on when the medical panel next meets. Which I won't know until Monday.

<<Tears hair out>>

I REALLY need one of these two houses. If I miss out and then get put up a band literally just after they are let, I will be steaming angry, because it is unlikely that any more will he coming up where I need to stay for months, maybe even years.

Aaaaarrrrggghhh!!

I'm holding onto the fact that I passed the tenant check, because that's one hurdle out of the way!

moosemama Fri 15-Mar-13 16:52:49

Oh what a shame. It does sound like the wheels are starting to turn in your favour though. Will keep my fingers crossed that the right house comes up for you soon and they pull their fingers out re getting you put onto the top band.

I hate all this waiting around for panel meetings and then having to go through the rigmorole of trying to find someone who can tell you what the outcome was. I honestly think they spend so much time in these meetings, they actually forget why they are there in the first place. hmm

LeonieDelt Fri 15-Mar-13 16:57:32

Yay for you passing the tenant check, that's half way there xx

LeonieDelt Fri 15-Mar-13 17:10:10

i talked at length to my favourite charities again, cried at them, etc. (Ep society and ep action) and they said that yes, lots of people don't get on with the first med bungled at them, and your body changes, reactions are gonna change, etc. Dont think the consultant will be upset at me.

I think its the drugs talking, i really do, cos i'm about to cry right now just typing it out. How silly is it to worry he'll change my dx to "psychogenic" because i didnt do well with lamotrigine? But i can't help but be afraid. Think how smug that GP would be if i lose my dx? Terrifying.

I gotta let it all go this weekend - family trip and celebration of birthdays etc. My hip is still hurting (paracetamol helped it) so i still need to take the piriton for a few more days i think.

Sometimes its so hard to know which way is up, when you feel like you keep getting knocked down, over and over.

MerryCouthyMows Fri 15-Mar-13 17:28:00

I know that feeling, Leonie, I really do. sad

MerryCouthyMows Fri 15-Mar-13 17:29:42

And since they've upped my dose of Gabapentin on Wed/Thurs last week, I have been unable to do anything except stuff my face with excessive quantities of carbs.

I've put on 4lb in a bloody week.

Getting even fatter and blobbier...

LeonieDelt Fri 15-Mar-13 17:36:40

I will live with the seizures rather than put on weight. I lost 40lbs last year and i do NOT want it back.

Seriously. mine are so mild compared to yours anyway, that unless they start throwing me on the floor, i will make my feelings known on monday. Dont care how stupid the med makes me, if it adds weight, i will refuse it.

that means no valproate, no gabapentin, probably no lyrica, etc.

I've read the BNF on what they'll offer, its not the biggest of lists and each med has a drawback.

Sadly, tegretol/carbamazepine is more likely to cause that rash/reaction now that i've had it with Lamictal. No idea if they'll offer it or not.

I know topamax makes you dumb and blind to boot. i know keppra makes you scream like a banshee with fury and rage.

The BNF's entry on seizures like mine:

"Carbamazepine, lamotrigine, oxcarbazepine, and sodium valproate are the drugs of choice for focal seizures; second-line drugs include clobazam, gabapentin, levetiracetam, pregabalin, tiagabine, topiramate, and zonisamide."

LeonieDelt Fri 15-Mar-13 17:48:42

another thing i find peculiar and odd - he didnt give me the name of an "epilepsy syndrome" - just a diagnosis of the kind of seizures. Wonder why?

I dont have "TLE", i just have a dx of complex partials.

moosemama Fri 15-Mar-13 17:53:40

Couthy, if it helps, the weight will be water retention from the carbs. You would have to eat a few thousand extra calories to gain 4lbs of actual weight/fat in a week.

moosemama Fri 15-Mar-13 17:54:59

I read somewhere they have changed the way they categorise epilepsy, so you wouldn't get a dx of TLE, just a dx of the type of seizures you have.

Can't remember where I saw it now though - frustratingly.

LeonieDelt Fri 15-Mar-13 17:55:45

oh, that's very interesting, moose.

what about oxcarbazepine, couthy? Ever had that one?

moosemama Fri 15-Mar-13 18:04:22

Just had a quick google but can't find where I read it, sorry.

I have found references here and there suggesting the guidelines are/were changing, but not what to, iyswim.

I'll have another look tomorrow if I get time, have a humdinging headache at the moment, which isn't helping me search.

LeonieDelt Fri 15-Mar-13 18:08:38

rest well moose xx

LeonieDelt Fri 15-Mar-13 21:42:07

I miss my lamotrigine sad

seriously. my head was so much better. the pain is incredible, how it runs and ruins my life... I didn't miss it despite the burning legs and fever...

sorry for the pity party. I've spent my evening reading the nice guideline on epilepsy. it was kinda boring, all that qaly stuff. but tbh, it sounds like I might be trying carbamaz next, despite the stupids. if I don't cross react.

the Gp laughed when she mentioned the futility of 'getting all this proven again, officially on the nhs, cos the med merry go round is unpleasant...'. fucking woman. she's right though, the med merry go round is unpleasant.

goodnight you guys. I wish you all a fabulous weekend where possible. moose I hope you're downing a big bottle o red tonight, you've earned it. congrats again xxx

MerryCouthyMows Fri 15-Mar-13 22:03:01

It IS an unpleasant merry go round...

(((Hugs)))

I haven't tried Trileptal / oxcarbazepine before, no.

My meds have been :

Lamactil / Lamotrigine.
Epilim / Sodium Valproate.
Tegretol / Carbamazapine.
Topamax / Topirimate.
Gabapentin / Neurontin.

I'm guessing that my next med (after a chat with the GP, he's still waiting to hear from the Neuro, I have to see a different GP about my epilepsy to the one I saw today for my joints), is likely to be Frisium / Clobazam OR Keppra / Levetirazetam.

I'm VERY concerned about the Keppra rage though, so my preference would be Frisium.

MerryCouthyMows Fri 15-Mar-13 22:04:07

That should have read 'levetiracetam'. Fat fingers.

LeonieDelt Sat 16-Mar-13 07:35:03

yeah, the rage concerns me too. and frisium is just like clonazepam, ineffective in the long run tbh.

my god the pain in my head this morning. damnit. damn it all. were the legs really that bad? could I have tolerated it a little bit longer?

fucking hell what a choice.

MerryCouthyMows Sat 16-Mar-13 08:16:51

sad. I know, it's a choice between crappy seizures, or crappy side effects.

Sometimes I really hate it...

I wouldn't be looking at the frisium as a stand alone med - it would be as an adjunct, as I've had to finally accept that my epilepsy is currently bad enough to warrant an extra med in the week before my period.

I would still be on the Gabapentin. The only issue I've found with the Gabapentin is that I almost seem to develop a tolerance to it.

So 600mg/ day dealt with the majority of my seizures for about 3 months, then I started having breakthrough sz. So they have upped my dose.

But the same thing will happen, and if & when I hit the maximum dose (and have turned into someone with the brains of a jellyfish), I won't have any sz control again.

I need to do some research to find out if that's common when using Gabapentin as an AED.

When I have time...

MerryCouthyMows Sat 16-Mar-13 08:18:31

Right now, since they upped my dose to 1500mg/day, (touch wood), I don't think I've had a single sz.

I'll know when my dose needs raising again...because I'll have sz.

LeonieDelt Sat 16-Mar-13 08:27:31

i've read gabapentin doses up to 43600mg in the BNF - so you have a ways to go before you hit max. not that you wouldnt be a hugely hungry vegetable by then (!!!)...

by my rough calculations, i'm down to 1/8 of the lamotrigine now. I dont need the piriton any more, my temp is 36.6, i feel "normal" - i'm back to normal. my knees look normal, my legs look normal. No more burning.

I'd almost trade the burning for the pain in my head this morning. who wakes up like this fgs? We have a birthday weekend with family in a caravan in a remote worcestershire location and for the love of god i'm wanting to stay home and not go, my head hurts so much and sleeping in a fricken caravan will only make it worse, even if i take my pillow...

LeonieDelt Sat 16-Mar-13 08:28:19

not 43600, 3600mg, 3.6 grams.

i also suffer from fat finger syndrome ;)

MerryCouthyMows Sat 16-Mar-13 09:25:01

I know, Leonie. It's a very particular sort of headache too, isn't it? Feels like your head has been squashed in a vice whilst simultaneously being burnt from the inside out...

I feel bad saying that since they jumped my dose up, aside from the side effects of getting even lardier, I'm now nearly 13 stone when my usual weight is just over 10, I feel better than I have in ages. blush

If it wasn't for the residual pain in my foof, I'd be painting my front room!!

I do think it IS a massive case of trial and error when it comes to finding the right AED at the right dose for each individual with epilepsy.

MyGranny has been fine on Tegretol for decades, and is 98% seizure free unless under severe stress or driving at normal speed over a particular bridge...

Yet Tegretol made my liver start to fail.

Gabapentin seems to work ok for me, until my body gets used to each dose except for the week before my period.

I think you WILL find an AED that helps, but it may take a while - I was dxd in 2003, and it wasn't until 2008 that we hit upon the Gabapentin for me. So it took 5 years.

And then I had a med break for 2.5 years from 2009-2011. Went back on the Gabapentin, and dose rises each time szs break through.

It just takes time - each person has their own body chemistry, and so different AED's work better for different people.

I know of 3 people on Keppra - 2 get the rages, 1 doesn't...

Are you getting enough sleep? <<Nag, nag>>

I always find that lack of sleep is a MASSIVE trigger. You do NEED to be aiming for 8 hrs a night. Every night. I don't manage it, some nights I'm lucky to get 2 hrs, but that's down to DS3!

MerryCouthyMows Sat 16-Mar-13 09:28:13

wink GP has basically told me that he will rise my dose of Gabapentin each time my szs break through, until either the breakthrough szs stop, or I hit 3600mg/day.

Though apparently a Neuro can prescribe up to 4800mg/day. I wouldn't want to take that much though - I'd rather they added an adjunct.

I'm already a space cadet, I can't imagine how dippy I'd be on 3600mg/day+!!

LeonieDelt Sat 16-Mar-13 09:46:57

Yes, its that sort of a headache, up the back of my neck and boring into the front of my head.

i go to bed between 9.30 and 10, dont have to get up til 7. I cant lay down til the painkillers kick in, so i usually sit in bed and read until i cant keep my eyes open, then i lay down and pass out. Then i wake up around 2, swallow a propranolol LA (the time keeps getting pushed back, dunno why) and then wake up again around 4 or 5 for a pee, and then wake up randomly and several times before i have to get up at 7. The pain gets me up - i can't lay down unless i have pain relief (or lamotrigine, how did it fix this?? i need to know if any other med can do the same thing!)...

This is not counting random children-shaped interruptions, which usually my husband handles but it does disturb me one way or the other.

They use much higher doses of almost every drug in the states than they use here. it seems silly - people are on up to 800mg of lamotrigine in the USA, here the max is 200mg in the BNF, up to 300mg if a neuro says so... weird isnt it. I think the insurance is a lot more lax in the US, giving more credit to a doctor using his/her own judgement than in the UK - everything seems so tightly dictated here, even a GP can't start you on AED meds, a specialist has to do it, etc...

LeonieDelt Sat 16-Mar-13 09:51:00

Hit post too soon - i meant to say that i am SO PLEASED for you that you have a med that is working and that you feel okay - its that sort of thing that gives me hope! Dont be blush about it, be grin about it because you deserve it!

Imagine the GP asking me if i really wanted to pursue it for real. What she was trying to say was "i think you're lying so do you really want me to have to write that down in your notes?" The more time that passes (and the more mood stabilising lamotrigine leaves me), the more angry i get with her, you know?

MerryCouthyMows Sat 16-Mar-13 14:00:08

I have my bus pass!!

AND, and and and...after EIGHT years of waiting...OT have FINALLY called me about getting a wet room fitted, I will have an assessment in the next 4-6 weeks. That will also help me with my housing, because they won't do it till I've moved, so it will push me up the list by necessity!

gringringrin

On the downside, I got my Council Tax bill that tells me that I'm going to have to start paying £3.80/wk from the 1st April.

And the ASB case against my neighbour (playing music so loud it shakes the house till 3-4am every weekend) seems to have been dismissed by my Housing Officer after she spoke to them - all I've been told is that 'The tenant denied the allegations and have an explanation that at this moment in time I am satisfied with'.

But this neighbour has had ASB complaints from OTHER people in our street too. So how can the Housing Officer be 'satisfied'?!

Just takes the piss. I bet she whacks the music up extra loud tonight because she knows she can get away with it. And I just have to put up with it.

What's the point of putting it into the tenancy agreements that the tenant is responsible for anyone making noise in their property if the HA don't actually MAKE the tenant responsible?

angryangryangryangry

LeonieDelt Sat 16-Mar-13 17:22:27

I just sent off for mine on Friday - our council / centro are pretty quick about it...

the neighbour thing is just a pisstake, grr for you angry angry angry

LeonieDelt Sun 17-Mar-13 12:16:17

I am finally feeling like me again... I had at least two seizures yesterday, while talking. its difficult to bluff my way through those, very hard to hold a conversation when I hit them 'um er' part...

and started my period while sleeping in a caravan, and dd1 threw up all over it at 2am, ugh, and the kids were up w the chickens, argh.

will be surprised if it doesn't happen today too, actually, as wrecked as I am!

MerryCouthyMows Sun 17-Mar-13 12:38:30

Ugh. I didn't sleep well last night, and keep crashing out today.

And I can't stop myself from eating horrific amounts of carbs.

Is there anything I can eat that will fill me up like carbs but won't make me fatter? I can't not eat carbs right now - the hunger is do intense, and bready things are the only things I've found that remotely help.

I have had two bowls of cereal, and 5 slices of fruit loaf already today - and I'm still starving. The hunger is making me really short tempered too...

LeonieDelt Sun 17-Mar-13 12:50:00

ugh couthy, tbh, I hated that med and valproate for that reason, the constant eating was devastating to my self esteem...

I don't know of any solutions sad

moosemama Sun 17-Mar-13 12:53:36

Couthy, you need complex carbs, basically wholegrains, as they won't be converted to sugar as easily in the body. Wholemeal toast with a scrape of peanut butter, potatoes only in jackets, brown rice, wholemeal hot-cross-buns? Malt loaf is a good one as well, v low fat and great for b vits - much better than fruit loaf and more filling with much smaller portions.

A huge bowl of porridge with fruit in might help a well. Make the porridge with water and if you want it extra tasty add a finely chopped or grated apple and half a tsp of cinnamon - then put a splash of milk on when it's ready - low cal and it tastes like apple pie.

I am having a really strange weekend. Been trying to rest up as I have a horrible week next week. Dh is away for two long days, I have my neuro appointment, ds1's IEP and a meeting re SATs at the school. hmm

Had a glass of red wine and some cocodamol both last night and the night before and slept really well, so no more night time episodes. They definitely seem linked to lack of sleep and exhaustion in general. The more nights of decent sleep and not too much daytime activity and stress the fewer I seem to have.

Dh is downstairs as I type, watching the dvd with ds1. We thought we weren't going to be able to get him to watch it, as he's been a nightmare all weekend and flatly refused to watch it before his friends, but dh insisted, so fingers crossed it's going ok.

I am sitting on my bed, still in my pjs, packing ds2's case for his outward bound trip next weekend. It's very strange. I literally worried myself sick about ds1 going, even had a thread about it on here, but now he's been and loved it and because ds2 doesn't have the same difficulties I am remarkably calm and unruffled about him going. I need to go through the activity list with him, as the SENCO wants me to give them a list of anything he feels he might not be able to do due to his hypermobility as well as those things he'd like to do but might need extra help with. I'd completely forgotten she'd asked for it, so have to send it in tomorrow.

Anyway, am off to the Sports Direct website to order him some thermals (which he says he won't wear hmm) having seen the weather report for this week.

Sorry you are both having difficult weekends. I feel really guilty, because, ds1's mental state aside, I have had quite a relaxed and restful one.

Hope today is better for you both. x

moosemama Sun 17-Mar-13 12:55:34
LeonieDelt Sun 17-Mar-13 14:14:47

tbh I'm handling the lack of sleep pretty well. I think knowing I'm gonna see someone and get a new start tomorrow makes it just seem like time to kill.

the stay w family has been fan, even if dd1 hasn't been herself today.

couthy, moose's suggestions seem v sensible to me wrt eating. I hope I don't end up fighting the same beast myself. 11st 7 this morning and I don't want to go back up past 14 St like I was at Christmas 2011... I remember I was 15st in 2000 because of valproate and gabapentin the first time, ugh.

LeonieDelt Sun 17-Mar-13 17:44:52

simple after simple on the side home, ugh.

glad to be home though. i still smell faintly of chicken shit.

LeonieDelt Sun 17-Mar-13 17:46:12

side home? RIDE home.

LeonieDelt Sun 17-Mar-13 18:36:37

going in mind wide open tomorrow except for weight gain meds... think I'll get by with it?

I need lamotrigine with another name that doesn't make me sick. tall order?

am kinds nervous. didn't expect lamotrigine to backfire so spectacularly. didn't expect consultant to refuse me copies of my tests?

LeonieDelt Mon 18-Mar-13 08:24:41

i have nothing to be sorry for, its not my fault, and i didnt overreact - if nothing else, the burning legs was enough to seek help over.

i must keep telling myself that, anyway

MerryCouthyMows Mon 18-Mar-13 12:40:40

I'm in bits here. They've done a 'reconsideration' on my DLA award and stopped my DLA totally.

Apparently it was a letter from my GP that stopped it.

He told them I wasn't having fits or blackouts - well why the FUCK is he prescribing 1500mg/day Gabapentin for fucking fits then? Why the FUCK would he tick & sign a form for my buss pass SAYING that I will not get a driving license due to fits or blackouts?!

It makes NO fucking sense.

Apparently I have NO mobility issues...yet on Friday another GP at the surgery told me that I DO have mobility issues, and he is sending me for X-rays and blood tests, and has prescribed naproxen to help with the pain.

How can they pay me ONE months money & my back pay and THEN say that I'm not entitled to DLA?!

There are around 15 things on this letter that they SAY I can do without help that I CAN'T do without help.

I'm in bits, I just can't cope any more.

It's a daily thought for me that maybe my DC's would be better off in care, because obviously I'm fucking imagining the pain I'm in, obviously I'm imagining the seizures that even my Gynae consultant saw.

I can't fucking fight any more. There's nothing left to fight with FFS.

I can't go on like this with no help.

LeonieDelt Mon 18-Mar-13 13:06:00

oh shit Couthy!!!!!! omg.

what can i do? Is there someone you can phone?

wtf is it with these obstructive GPs? Can you complain?

Can i make some calls for you? Is there anything at all i can do to help? Please email if there is.

(consultant gave me topiramate AND wants my clonazepam boosted double in the week before my period. lovely man, listened, confirmed it is indeed epilepsy, that's the diagnosis, it's all good)

moosemama Mon 18-Mar-13 13:12:30

OMG Couthy!

My younger sister is going through a very similar thing with her GP and DLA at the moment, so I know how awful it is.

I can email her and ask about how she got her appeal started if you like.

It sounds like a breakdown in communication at the GP's end - can you call the GP you spoke to on Friday and find out who completed the form?

Can't remember if you have a SureStart centre near you - but if you do, my niece has had a lot of support from them re fighting benefit cock-ups - so that might be worth a try.

Let me know if you want me to contact my sister for advice for you - she used to work supporting people in similar situations herself so has a lot of knowledge.

moosemama Mon 18-Mar-13 13:22:44

Leonie, I told you there was nothing to worry about. Glad he was able to put your mind at rest.

I have had the wind well and truly taken out of my sails today. After a whole week of no episodes and starting to feel better, I stupidly stayed up until gone midnight after resting all weekend and ended up having a massive cluster of them between 5.20 and 6.00 am this morning. They were short lived, not as severe as some of my worst ones and didn't get as far as the blinking stage, but they just kept coming. Every time I thought it was over it started up again. Three medium sized ones back to back then loads of really quick short ones.

I discovered that I seriously cannot stand to be touched when it's happening. Dh, bless him, kept trying to put a reassuring hand on my back/shoulder etc and I couldn't stand it at all. I woke him as soon as I woke and felt the dread building, so he was awake for the first three, but then I thought it was over and he went back to sleep and I didn't bother disturbing him for the endless mini ones. I concentrated on trying to be 'mindful' and remain calm while it was happening, so tried to breathe steadily - which is not easy when you are yawning really deeply incessantly without being able to stop and your eyes are literally pouring. hmm By doing that I was able to ascertain that I am in no way panicking or stressed, what is happening is beyond my control and I can't stop it - whatever it is.

As a result I am zombie girl again today. Have gone from feeling almost normal by the end of last week to being totally exhausted, unable to think straight, feeling a bit like I am just outside of my body, rather than actually in it and in control, iyswim confused and am left with residual burning hand and foot on the left side.

Am really p'd off about it, as I was daft enough to think I may have turned a corner. sad

Neuro appointment is tomorrow, but I really don't know what to expect. Different/locum neuro, so haven't a clue what he's like or if he'll even listen - if I am brave enough to speak up and explain what life has been like for me for the past few months. Dh is coming along, but he's hopeless at medical appointments, so not much help really.

LeonieDelt Mon 18-Mar-13 14:13:27

this new consultant is the one who is responsible for seeing epileptic patients at City anyway, seeing the head cheese seems to have just been a stroke of luck. Head Cheese is away in America this week anyway! He's a busy man.

Its interesting isnt it? When you know you're not panicking but they're all telling you its a panic attack. I'm sorry you feel like shit though - that's post-ictal :/

I really would write it all down. It makes life so much easier when you can just hand them a piece of paper. The consultant today was impressed with my "slightly anally retentive) (my joke) note taking, and logs and whatnot - cos i is OCD like that. Because when he asked me "how many" i was able to not only say how many, but when, where, what happened, what time it was, etc etc...

He was going to give me Frisium (!!!) but i told him i already have clonazepam, so he said to double it around my periods. He thinks between the topiramate and the clonazepam, we can get back some degree of control.

god couthy, i wish there was something i could do. i feel like it shouldnt be going okay for me, cos it isnt for you sad

moosemama Mon 18-Mar-13 14:21:55

I have everything from the past fortnight written down in a diary I bought to keep records of episodes. Other than that I would have to go back through our threads and find where I've mentioned having episodes and I know I haven't always been on and recorded them on here, so it's a bit hit and miss really.

I reckon I'm going to get the usual "We'll keep an eye on you - see you in 6 months." line - if anything.

Ds was clear that he didn't think I was panicking at all as well and he has seen me have panick attacks in the past - a very long time ago - so he knows the difference. Hoping an independent witness might help.

LeonieDelt Mon 18-Mar-13 14:39:55

It does - just being able to tell them what others have told you they've seen seems to add a LOT of weight. I have a friend who was able to corroborate me stumbling over words, and this is significant to both the head cheese and the guy i saw today. as is the bitten cheeks (!!!) - the guy today was quite concerned about it!

MerryCouthyMows Mon 18-Mar-13 14:58:42

Don't feel like that, I'm glad things are wworking out for you.

LeonieDelt Mon 18-Mar-13 15:05:36

lol, well, i have a new pill and a plan, anyway - IF the GPs dont scupper it.

I had to take an envelope with "Prescribing Advice" written on it in big letters to my GPs today from the consultant, he didnt give me the script himself this time. - Which means i have to wait until tomorrow afternoon at best to even get ahold of the meds.

And then i have to not get the glaucoma or the kidney stones or the metabolic acidosis, and be able to stand the tingly hands and the fizzy drinks that taste off and the stupids...

Fingers crossed for me.

Thinking aloud, who triggered the reconsideration of your DLA? Was this on your request or something they did internally? File an appeal NOW, you can even do that verbally over the phone, TELL THEM that whatever letter from your GPs does not fit the facts, and they will do another reconsideration before taking it to appeal stage. It gets the ball rolling anyway.

I had to appeal DD1's DLA the first time - it was refused outright, and then reconsidered and awarded hrc.

MerryCouthyMows Mon 18-Mar-13 15:48:03

What happened was was that my GP sent them a letter on 16/01/13, obviously telling them I don't have fits (yet he's prescribing me AED's personally...) or mobility issues.

Then the DLA medical officer came out to see me on 21/01/13. She obviously told them I DO have epilepsy & mobility issues.

Then DLA made a decision in mid-February, based on all thus evidence, and decided to award me LR mobility & MR care from 09/10/12 - 08/10/14.

Then they paid me my back pay & first payment on 5th March.

Then on 13/03/13, they posted out a reconsideration letter telling he that they had decided that I wasn't entitled to DLA because I have no fits and no mobility issues...

I received that letter today, so I rang them. They told me that they had reconsidered my award based on my GP's letter WHICH THEY HAD BEFORE THEY MADE THEIR FUCKING DECISION IN THE FIRST PLACE!!!

They have lodged for a reconsideration based on my phone call, and they are going to send me out a copy of my file.

I can't wait to see what it says...

MerryCouthyMows Mon 18-Mar-13 15:53:59

For once, my useless Mother actually had a point - if the GP doesn't think I'm having fits, blackouts or seizures of any kind, then surely it's illegal for him to be prescribing me Gabapentin for the last year, for a disability he doesn't think I have...

And surely if I don't have any mobility issues causing me pain, another GP in the surgery shouldn't be prescribing me naproxen for painkillers...

So either I DO have epilepsy and mobility issues, OR I don't, and the GP's are prescribing me medications I shouldn't be taking...

She's usually useless, but for once, she actually has a good point!!

MerryCouthyMows Mon 18-Mar-13 16:07:40

Oh FFS with MN eating my posts.

MerryCouthyMows Mon 18-Mar-13 16:12:36

I'm just one person and I think I'm broken.

If I'm imagining the seizures, if I'm imagining the pain I'm feeling, if I'm imagining my mobility issues, then I MUST have done sort of MH issues, which surely should be being addressed?!

I have other people that have witnessed me having seizures - my DC's, my Ex, my friends, the staff in my local Tesco, the Gynae consultant and the nurses that looked after me when the multiple seizure thing happened.

If all these people have seen it, how the hell can I be imagining it?!

I'm starting to think I'm Alice in fucking Wonderland, because nothing seems to make sense any more!

If I aren't having seizures at all, then why am I addling my brain and taking so much Gabapentin? Why would the GP prescribe that if he didn't think I was having fits?!

Nothing makes fucking sense in my life any more. Feels like I'm in the effing Labyrinth or something.

LeonieDelt Mon 18-Mar-13 16:14:35

Clearly they made a huge fucking mistake, looked at the wrong file or summat. there's no way they genuinely believe what's been written. No way.

LeonieDelt Mon 18-Mar-13 16:16:08

its just more stress you dont need - and then they wonder why you have those imaginary seizures. headdesk.

MerryCouthyMows Mon 18-Mar-13 16:16:16

D'ya know what? I'm going to ring my GP's surgery, and ask them WHY I'm being prescribed Gabapentin as an anti-seizure medication if the prescribing GP doesn't believe I'm having seizures.

And I'm going to ask if I should stop taking them. Because obviously if I'm not having seizures, then I don't need anti-seizure medication...

Lets see what they say!

<<Evil>>

LeonieDelt Mon 18-Mar-13 16:18:44

Do it, tell us what they say!

MerryCouthyMows Mon 18-Mar-13 17:07:40

They've booked me a telephone appointment with the prescribing GP for this evening.

The receptionist said that I was asking a 'very pertinent question'...

LeonieDelt Mon 18-Mar-13 17:32:11

lol, indeed! Go Couthy, hang in there xxx

moosemama Mon 18-Mar-13 17:40:52

You go Couthy!

Let us know how you get on.

LeonieDelt Mon 18-Mar-13 21:14:14

hope couthy's had some success.

MerryCouthyMows Mon 18-Mar-13 21:58:22

Nope. Stupid GP sent the letter from the Neuro I saw last, in 2008, that said I had NEAD. (Though surely having non-epileptic seizures still MEANS that you ARE having 'fits, seizures or blackouts' for the purposes of DLA?!?

The GP wrote that he had asked for witness statements that had, as yet, not been provided.

Well, twat end GP, that might just be because YOU didn't come up with an adequate answer as to how I was meant to get a (then) 14yo with SN's to provide a written account, or my 10yo with behavioural problems to provide a written account, or sonehow 'MAKE' my Ex do a written account when he had been asked to for 6 effing months.

(What was I meant to do, hold a gun to his head until he did write a written account, when he's severely dyslexic and has Autism himself FFS?!)

The only other witnesses were the staff in my local supermarket.

What am I meant to do? Go up to them and say here's my club card, oh, and could you also give me a written account of what you saw on the two recent occasions that I had a seizure in your store?!

Or there's the Gynae consultant and nurses that helped me when I had multiple seizures after my aborted colposcopy under local.

Problem is, when the Gynae consultant wrote to the GP about me needing it done under general, all the letter spoke about was how the procedure was aborted as I was 'screaming in pain'. According to my Ex (and what I thought), there WAS no screaming - just groaning and clenching my fists. Mostly because it FUCKING HURT.

Not diddly squat mention about the fact that I had 6 seizures in the waiting room afterwards, that required a Nurse and a student nurse to help me with, or of the fact that he himself (the Gynae consultant) came out to help, or the fact that when the nurses and him got me into a wheelchair and wheeled me into another room (this is all what Ex has told me) that I then had another 4 seizures in that room, to the point where the nurses had to hold me head up...

I don't remember all this, but this is exactly as my Ex told it to me. All I remember is sitting in the waiting room filling in a form, the world going 'fuzzy' around the edges - it's almost like pins and needles in my eyes that I can actually 'see' like millions of dots in my vision, I felt funny, sort of 'other worldly', then I was on the floor on the waiting room with loads if people looking at me, then 1 second later I was in a wheelchair in another room - i vaguely remember being really horrid and shouting "I just want to sleep, just let me go to sleep" blush then 1 second later I was on a bed waking up in that room.

I can't remember the Nurse's name. I can't remember the student nurse's name. The Gynae consultant obviously couldn't be arsed to add in anything about the seizures the first time round, so it's unlikely that I'm going to be able to get him to in the next 4 weeks either.

So basically, DLA aren't going to pay me until my GP decides I do have epilepsy, and he and whatever Neuro I see aren't going to believe I have epilepsy without 22 signed and hand delivered fucking witness accounts, and probably videotape evidence too.

Oh - and you DON'T get 3 months to provide the additional evidence in cases like this any more.

I have FOUR FUCKING WEEKS to prove to DLA that I am entitled to it, or I will have to pay back every penny they've paid me (over £1000) AND I will have to pay back all the additional severe disablement allowance and disablement allowance top ups that have been paid on my IS. Which would be nearly another £2000.

CUUUUUUUUUUNNNNTTTTTSSS.

The GP has told me that he is happy to provide me with a note stating that I am unfit for work (WTFuckingF so I'm too disabled to work yet don't have any fucking disabilities WTF?!).

He also wants me to see a Neuro. Well, that's great, but if I don't see one AND get the report in the next 4 weeks, it's of fuck all use when it comes to my DLA, isn't it?!

And we all know how likely it is that I will see a Neuro within 4 weeks, don't we...hmm

I asked him if I should stop taking the Gabapentin - his response was well its not helping...yes it fucking IS YOU TWAT.

Maybe if he actually listened to me, he'd know that when he first put me back on to Gabapentin, 600mg/day stopped around 80% of the seizures. After around 5/6 months, however, they started getting more and more frequent again.

Then my dose was upped around a week ago. Funny how my seizures have lessened loads since then, isn't it?!

AND, and and and, if it IS NEAD, then why the FUCK has he kept me on Gabapentin, raised the dose etc, when if it IS NEAD, surely he should have sent me to a fucking psychologist or shrink or something?!

Instead I get NO referral to a Neuro, NO MRI, NO EEG, NO referral to a psychologist, NO FUCKING NOTHING except Anti-seizure meds thrown at me since Feb last year when my szs returned at the same time as my periods returned after bf DS3...

angryangryangryangryangryangryangryangryangryangryangryangryangry

MerryCouthyMows Mon 18-Mar-13 22:05:27

Suffice to say that my mental state is very fragile tonight. I nearly walked out of the house in my bare feet earlier leaving Ex with the kids, because DS1 started kicking off about FUCK ALL.

I know I'm going to end up saddled with a three grand debt because I haven't got a snowball's chance in hell if proving that I have epilepsy & mobility issues (ignore that for now...) in just 4 ducking bastarding cunting weeks.

Their OWN medical officer decided that I DO have epilepsy (and she was some sort of epilepsy specialist person...) and mobility issues - but that's not good enough, is it.

Argh, I just want to shout that they are all Cunty McCunterson's.

I don't think I'm getting up tomorrow. What's the point. It'll just be more of the same old crap with no help, no support, no nothing.

I can't change GP's until after May either, or it'll put DS3's ADOS back. So I have to wait until DS3 has been assessed. angryangryangryangryangry

LeonieDelt Mon 18-Mar-13 22:06:43

omg. just... omg. jaw on floor here. Written accounts? Jesus effin christ. What are they supposed to do, swear under oath or summat? What a bizarre thing to expect!

I was asked twice, today and two weeks ago, what others see, and i told them what my friend told me he saw, once, and that was good enough for two top level consultants. ??

MerryCouthyMows Mon 18-Mar-13 23:23:59

Tell me about it!

Tbh, I couldn't give two shiny shits if it IS NEAD. And I CAN see why they would come to that conclusion - previous sexual abuse? Check. Previous family dysfunction? Check. Previous guilt-laden bereavement? Check. Previous depression? Check. Family member with epilepsy? Check. (Though I've NEVER seen her have a seizure, I 'know' she has epilepsy and is on Tegretol)

My guess is, after a clear 20 minute EEG 3/4 of a decade ago, on reading my prior history, the easy dx WAS NEAD. Though quite why the very FIRST Neuro I saw declared it to BE epilepsy is then beyond me.

What is ALSO beyond me is why, if my dx was definitely changed in 2008 to NEAD, after no further MRI's or EEG's, neither the GP nor the flashy Neuro from Queen's referred me to a psychotherapist to TREAT the NEAD??!

And tbh, the flashy Neuro only seemed to change the dx from epilepsy to NEAD at the point where he asked me to stay for 3 days and nights, in Romford, 60+ miles away from my home, when my DS2 was only 4.5yo, barely walking & talking due to his SN's, and I was a lone parent with NOBODY to leave my (then) 3 DC's with.

I tried to compromise by asking him to send me home with an ambulatory EEG for a week, going about my usual business, transmitting my brain waves back to them, but nope.

He left me on Gabapentin back then, though I chose to come off it about 4/5 months later because of the side effects & because I basically got depressed after losing Korben and didn't go back to the surgery for a repeat prescription, and also because I felt at the time that if it wasn't epilepsy, then why did I need anti-epilepsy pills?!

I was still having seizures, just not as many. But I didn't have a fourth DC then, who also has additional needs.

Surely if he is of the opinion that it IS NEAD, then both the GP AND the Neuro have been negligent by NOT referring me to a psychotherapist? AND by continuing to prescribe me Gabapentin when my seizures are not epileptic seizures when my seizures got a lot worse?

And how is it that there was a direct correlation between the exact moment my periods restarted after bf DS3 and my seizure frequency increasing hugely?

Surely if there is a hormonal component to it, then it isn't NEAD?

MerryCouthyMows Mon 18-Mar-13 23:24:38

Ex has written an account now. Even HE'S so angry about this!

MerryCouthyMows Mon 18-Mar-13 23:36:24

And what's random is, it's my Paternal Grandmother who has epilepsy. I haven't personally seen her for 13 years, as she lives 650 miles away in the top end of Scotland. We keep in touch very sporadically by letter. About once every couple if years because I'm shit at writing letters.

BUT my Aunt (Dad's sister) on my Dad's side has also been investigated for epilepsy (recently, within the last year), and it has been found to be 'inconclusive'. I haven't personally seen her for...15 years. She lives in Kent, around 130 miles away from me. I only accepted her friend request on fb a year ago, before that we hadn't even spoken on the phone for 10 years...

Four years ago, a cousin on my Dad's side was investigated for epilepsy (my Dad's brother's DD). Again, it was found to be 'inconclusive', and she now has her driving license back.

Six years ago, my DD's Primary school asked me (with no knowledge at the time that I had been dxd with epilepsy - this was before the NEAD thing reared it's head too, mind you) to get DD investigated as THEY believed that she was having absence seizures. DD had a sleep deprived EEG (I posted on here about it under an old name!!) that proved...inconclusive. No further treatment. I still believe that she is having absence seizures, but if I push it, I can just SEE the FII/Munchausen's allegations lit up in lights...

But no, there's NO hereditary factors in Epilepsy. And there's no connection whatsoever, is there?! And of course, my seizures HAVE to be NEAD because of my prior history, don't they...??!!

If I was a cynical person which I am, I might say that it is far easier to palm me off with a 'dx' of NEAD and then do fuck all to help the NEAD than it is to really try to find a cause and treatment for refractory epilepsy...

MerryCouthyMows Mon 18-Mar-13 23:41:22

Especially when my personal circumstances rule out a vEEG.

LeonieDelt Tue 19-Mar-13 07:33:14

i cant believe they'd refuse an ambulatory eeg - my GP had the gall to suggest it to my consultant in her referral letter! Consultant said it was not clinically indicated (love that phrase! in other words, stick your beak elsewhere, wannabe neurologist).

I hope someone takes note of what your ex has written.

LeonieDelt Tue 19-Mar-13 07:35:25

Surely if he is of the opinion that it IS NEAD, then both the GP AND the Neuro have been negligent by NOT referring me to a psychotherapist? AND by continuing to prescribe me Gabapentin when my seizures are not epileptic seizures when my seizures got a lot worse?

BIngo.

I hope Moose has some suggestions cos i am tapped out this morning.

MerryCouthyMows Tue 19-Mar-13 09:19:21

I was helping my severely dyslexic ex to write a detailed account in his own words (spelling every second word for him) until 1.30am. Then I had to write my own account from my perspective which took me until 3.30am.

I've also written a list of questions for my GP, and have an appointment booked for 10.10am...

moosemama Tue 19-Mar-13 09:42:25

I only have five minutes, got to type up the notes I pulled together last night from our threads and emails etc before having a bath and getting ready for my neuro appointment - and I had a shitty night last night. Don't even remember it properly, just that it was very restless, ds1 had a nightmare at 4.30 and I think I had several very woozy sleepy episodes afterwards, but can't think or remember clearly this morning.

Couthy, my thoughts are similar to yours. Either way round, whatever the docs try to come up with as an excuse, they have been negligent. Either you are on Gabapentin because you have epilepsy - so you do have Epilepsy or you have NEAD and they shouldn't have been prescribing drugs for it - you should have been referred for appropriate therapy. Clearly negligent either way.

GP is saying you don't have seizures when you clearly do - whatever the cause. The cause is irrelevant, seizures are seizures, regardless of the cause and from a DLA viewpoint, still affect your life in exactly the same way regardless of the cause.

If GP is saying you aren't having seizures, why up the Gabapentin? The fact that you need a higher dose and he agreed to it, clearly indicates that you are having seizures and they weren't sufficiently controlled at the lower dose and that he was in agreement about this. If they have on record from a consultant that it's NEAD, they shouldn't be prescribing AEDs anyway.

Questions, is the GP going to try and say the Gabapentin is for your joint pain and not the epilepsy? If so, he will have to admit to the mobility problems which he has apparently also denied to the DLA. So he's managed to catch himself out there again.

As far as I can tell the docs don't have a leg to stand on and whether they decide on NEAD or Epilepsy is irrelevant the effect on your life is the same and you therefore have the same needs and are therefore entitled to the DLA you were assessed for. To back this up you have the opinion of the Epilepsy DLA bod who came out to assess you. Whatever happens you definitely shouldn't be losing your DLA.

That said, even with right on your side ATOS is making it almost impossible for most adults to get DLA.

My uncle has emphysema and a crushed spine, he is can just about get around at home, but really should be in a wheelchair as not only is he in major, constant pain, but he can't breathe without oxygen. ATOS called him for a DLA assessment. He told them he couldn't do stairs and would need a wheelchair if it was a long walk. They told him he had to go. He got a taxi, arrive and the office was up three flights of stairs. angry Stubborn bugger that he is, he tried to climb them with his wife helping and collapsed - at which point the security guard had to call for help and his words were 'this guy is going to die if you don't get some help out here NOW'. He was carried to his assessment in agony and - you guessed it - pronounced fit for work! angry He is appealing, but honestly he shouldn't have to, anyone can see that he clearly cannot work and on top of the fact that he's severely disabled and in constant pain, he's over 60, so no-one is going to employ him anyway. angry

My dsis had a nervous breakdown last year. She has been through a lot of therapy, tried a graded return to work - that failed and she ended up having another breakdown. She has constant panic attacks, cannot cope with public transport, but doesn't drive and is too nervous to learn. Her psych says she is improving very slowly, but definitely in no state to work and informed the DLA people thus. GP disagreed, said she was fit for work and told DLA this. She told them ATOS people that she couldn't get there in the rush hour because of her issues with public transport and crowded places, they said she had to come to the appointment she was give or lose her benefits and gave her a 9.00 am appointment on the opposite side of London to where she lives. She forced herself to go, left home at 6.30 to avoid the rush hour and took her partner with her for support. The transport was packed even at that time and she was in a terrible state, she broke down in the assessment and was apparently in a real sate. They stopped all her benefits and she is living off her dwindling savings. She has saved for over ten years for a deposit on a house, whilst working in a charity supporting trafficked women and their children (hence the breakdown). Charity treated her like shit and dumped her when she couldn't cope anymore (they have form for this). If she hadn't got those savings she wouldn't have survived this long and her psychological state has been knocked right back by losing her income, then her benefits and not being able to work. She desperately wants to work, she is a hard worker and wants to work helping people - but she can't. Since they removed her benefits, she has applied for hundreds of jobs, but hasn't had a single bite - ffs, who is going to employ her? She can't even get voluntary work.

They are bastards.

I think you need a professional advocate on your side to give you the best chance of winning with this. I saw these people recommended on a disability charity website.

I would also advice contacting some of the disability charities to see if they can offer you any advice/support/advocacy.

Haven't had time to look - but came across a link to [http://www.afteratos.com/ this blog]] as well.

I have to go now, but hope you manage to make some headway today.

moosemama Tue 19-Mar-13 09:43:48

Before I go - just had a thought - if GP no good, ask to meet with Practice Manager - they will get very twitchy if they think GP has been prescribing unnecessarily or hasn't referred for treatment when they clearly should have done as it leads the clinic wide open for a negligence case.

MerryCouthyMows Tue 19-Mar-13 09:58:50

GP started prescribing the Gabapentin in February/March last year. (After the break)

My joint pains didn't even START till the end of August, and I didn't go to the GP about it until AT LEAST October.

By which point I had been back on the Gabapentin for at least 6 months...

LeonieDelt Tue 19-Mar-13 10:17:32

I pray both of you have good days today / make the progress you both deserve so very much. flowers flowers

MerryCouthyMows Tue 19-Mar-13 12:45:44

angryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangryangry

MerryCouthyMows Tue 19-Mar-13 12:53:37

Bloody MN eating my posts. I'm going to ask about that in site stuff, then I'll update (again) properly.

It will be long...

MerryCouthyMows Tue 19-Mar-13 13:23:23

I'll start from the start, and add my whole bloody saga from start to finish.

Age 14, dxd with depression after attempting suicide, had inpatient 'treatment' which involved counsellor 'listening' to me witter on about things to do with my childhood (shit childhood, went right off the rails at 15, got myself together age 22, with 3 DC's in tow...

9 years ago, had a huge seizure just 2 weeks after the birth of DS2. Wet myself, shaking, the whole shebang apparently. Got taken into hospital etc, was fine, sent home.

GP referred me to local Neuro number 1. Who dxd me with epilepsy as I'd had numerous seizures since that big one. Never referred me for the MRI he said he would.

GP later got struck off for a) feeling up female patients, and b) not sending in referrals... (It's all in public record, Dr. Chyc if you feel like Googling...)

Once Dr. Chyc had been suspended, I saw another GP at that practice (not my current one, I've moved since then.) She sent me for the MRI, after a year. No results were ever chased up for that. So never got the results of my first MRI.

MerryCouthyMows Tue 19-Mar-13 13:31:36

I'd been put on Lamotrigine by that first Neuro, but it did NOTHING to stop my seizures, even at a quite large dose.

So then I moved house, area & GP surgery to where I currently am. New GP was confused to find no record in my medical notes about the results of the MRI I was adamant I'd had, and was perplexed by the fact that after 11 months of having seizures, I hadn't been sent to have an EEG.

So he sent me to a Neuro. When I got the appointment letter, the appointment was at the local Private hospital. This confused ME, so I did a bit of Internet 'digging'.

(The first time I'd ever done so...started something that did!)

MerryCouthyMows Tue 19-Mar-13 13:39:20

I was VERY concerned by what I had found out.

My PCT had not had a Neuro for 18 months. Not ONE. Because their Neuro had been SACKED by the hospital for something to do with his awful bedside manner. (Never did find out the full story...)

The 'Neuro' that I had originally seen, that had dxd me with epilepsy, was a UROLOGIST with a 'special interest' in Neurology.

Now, back to my appointment at the Private Hospital. It turns out that the Urologist was no longer doing Neuro appointments for the PCT, so as they were still without a Neuro, they were sending patients to see the Neuro that was working at the local Private hospital.

Who just happens to be the self same Neuro that had been SACKED from the NHS hospital.

Needing answers, and giving the benefit of the doubt, me and Ex (by this time back together for a bit...) went to the appointment.

Our taxi was an HOUR late, so we ended up being around 25 mins late for the appointment. Well, apparently, you don't keep this Neuro waiting. I had to beg, literally, in tears, to be seen. He did deign to see me - but not until the end of his clinic over an hour later.

moosemama Tue 19-Mar-13 13:49:00

Cant say much as on dhs phone. appointment a disaster. ambulatory eeg ordered stress mentioned basically he thinks its psychological.

Will post again when I get home. sad and angry

MerryCouthyMows Tue 19-Mar-13 13:50:14

As soon as we got into his office, he turned to us, and said, in a very superior manner, that "I've read your medical history, it's obviously NEAD, you are doing this all yourself, just stop it and leave me to the patients that can't stop themselves from having seizures."

I tried to explain my symptoms, and he spoke over my head, was downright rude, and then turned to me and said "well, if you hadn't had 3 children with three different men, then you wouldn't have this problem"

At this point, I dissolved into tears, trying to work out how my sexual history had anything to do with me having seizures. My Ex, a very placid person, had to be held back by me because he was going to hit him! (Not something I've ever seen my Ex do, before or since, in 14 years of knowing him...)

So we left.

He did refer me for an EEG and an MRI.

GP decides that Lamotrigine is not suitable, as it was having no effect. He put me on Epilim. That was very short lived, as I was allergic to it - to the point where I needed a steroid injection to stop the reaction.

So GP then put me on Tegretol. That was OK for a few months, but then I started to develop mild jaundice. GP decided (without blood tests) to take me off Tegretol, because he believed it was starting to adversely affect my liver.

So then the GP wanted to send me to a Neuro. The only one available was the bastard at the Private hospital.

No FUCKING WAY was I seeing that Neuro again. I'd have rather eaten my own brain.

So I did choose and book, and found out that Queen's hospital was meant to be a 'centre of excellence' for epilepsy. OK, Queens is 60+ miles away for where I live in N. Essex, but it was worth it to avoid that horrid wanker.

MerryCouthyMows Tue 19-Mar-13 13:51:30

sad angry not you too. WTF is it with this?

MerryCouthyMows Tue 19-Mar-13 14:00:33

So, I go for the MRI - turns out that the results of my first MRI had been 'mislaid', (probably by struck-off GP's surgery...)

Nothing abnormal detected. OK. Fair enough.

EEG came back with 'some unusual wave patterns, but not enough to suggest epilepsy'. It was a 20 min appointment. I hadn't had a seizure for over 48 hours, so I was neither ictal or post ictal.

Go to see 'flashy' Neuro at Queens. Flashy Neuro talks about catamenial epilepsy and explains that he would like to do a vEEG as an inpatient at Queens (60+ miles away, remember) to get a better idea of how to treat my epilepsy).

I then explained that due to childcare issues (I.e. I have none...), a 4 day, 3 night stay in a hospital 60+ miles away was impossible. I asked if it would be possible to do an ambulatory EEG instead, as that would enable me to continue to care for my DC's.

He said no. And he told me that as I was 'refusing' to follow HIS treatment plan, he would have 'no choice' but to dx me as NEAD.

Without any form of longer term EEG monitoring to fully rule out epilepsy first. Against all treatment and diagnostic protocols for epilepsy / NEAD.

MerryCouthyMows Tue 19-Mar-13 14:10:24

So, I got sent back to my GP. Who decided to put me on Gabapentin. That was at the start of 2008.

So I popped the Gabapentin, assuming that the GP had given them to me because he disagreed with the Neuro, and HE thought that I DID have epilepsy.

The Gabapentin helped for about 4 months. But then I started getting worse. I was having daily seizures, lots of absences and at least 3 atonic seizures / drop attacks each week. So the GP put me on Topamax as a adjunct to Gabapentin. (Wannabe Neuro, I think now...)

Topamax gave me a temporary nystagmus, that sudden onset eyesight loss thing, AND have me symptoms of bipolar, which I had NEVER had before - I even got threatened with being barred from the school site whilst trying to deal with a severe injury my DS1 had sustained through bullying at the school, because I couldn't control my emotions.

(Though that is partly to do with the fact that the HT is a power hungry, lying on official forms bastard...)

So, the Topamax went. Annoyingly, despite the raging stupids it gave me, and the weight loss (which was nice), it was the ONE drug that controlled my seizures fully...might have had EVIL side effects, but by God did it work for me!

I was still on the Gabapentin at this time.

MerryCouthyMows Tue 19-Mar-13 14:25:18

I stayed on the Gabapentin until the end of 2009. Every 4/5 months, my dose would have to rise, as I would get 'breakthrough' seizures that steadily got worse until the dose was raised by the GP, then I'd have 4/5 months where my seizures (even the 'absence' type ones) would drop by 3/4 in frequency, then the whole thing would start over again.

In mid 2008, I fell pg. (not with DS2 & DS3's dad, in a relationship I had while we were not together). I was still on Gabapentin at the time. I did loads of research about being on Gabapentin whilst being of, nothing odd was indicated.

When I was 19w5d, I lost my baby boy. The same day, my partner at the time left me, telling me that I had killed his baby. Abusive git that he was - I've had no contact with him since that day.

I (understandably) was VERY depressed. Didn't do anything at all, didn't open my post, don't even remember that time much, I was in a foggy haze. The foggy haze lasted about a year, to my shame.

While I was in that foggy haze of depression, I stopped getting my repeat prescriptions from the GP surgery. Nobody even noticed!

So, I titrated down off the Gabapentin, after having read watched online. I knew that if I didn't have epilepsy (so the Neuro's were both telling me...), then I didn't need AED's.

I WAS still having seizures, but I couldn't be bothered to deal with it at the time, I just tried to cope.

I then got back with DS2's dad, and VERY quickly fell pg with DS3. So I now wasn't taking any AED's. The whole time I was pg, my seizures were NON-EXISTANT. Ditto for all the time I was bf, until my periods returned after a year.

As SOON as my periods returned, so did my seizures. This was in February last year.

Soooo, knowing I had a 1yo to cope with, on my own (Ex left when DS3 was only 4mo), I went to see my GP.

Who put me back onto the Gabapentin.

It ^ helped^ with lowering the frequency of the seizures, though not during the week before my period - that is when my seizures increase twofold (at least).

MerryCouthyMows Tue 19-Mar-13 14:33:13

I tried to cope like that for as long as possible.

In August last year, I started getting joint pains that were so bad I was immobile for 3 days a month...just before my period...and spent half the month dosed up on painkillers, just to move and get through the day.

I tried to cope just using paracetamol & ibuprofen, but it got to the point that I needed something stronger on a few days a month, so I started using OTC cocodamol. I stuck rigidly to the 'no more than 3 days' thing for codeine though.

After a couple of months like that, I decided to visit a GP. I saw a new GP at that surgery who had me blood tested for rheumatoid arthritis. Because the basic test came back negative for rheumatoid factor, that GP told me it couldn't be rheumatoid arthritis.

Didn't refer me on anywhere though!

By the end of February this year, my seizures were ramping up again, so I went back to see the GP, and he raised my dose from 600mg/day to 900mg/day. No referral anywhere, despite my seizures having been back again for a year by this time.

MerryCouthyMows Tue 19-Mar-13 14:35:06

Will finish the most recent part of my epic saga later on - I have to go & pick up the DS's from school and I also have parent's evening tonight.

Sorry for filling the thread up!

moosemama Tue 19-Mar-13 15:03:42

I really don't know what to say or where to start.

Consultant (locum) initially just wanted to ask me why I was there when I have had all the tests and clearly don't have MS - including going through my MRI results with me and telling me that multiple lesions throughout the hemispheres and subcortical white matter is considered to be a normal MRI result for someone of my age by him.

I said I know I don't have MS, I was on a 12 month follow up at my last appointment in September, but I had what they think was two seizures in one night in November and the AMU ordered tests and sent me back here.

He then asked if anyone had seen the seizure, accused dh of being a negligent husband for going back to the restaurant and leaving me when I was ill and therefore not seeing the 'event' (he was joking - I think) and didn't pass comment on the actual seizure at all.

He asked if I had had any more. I said no, but have been having lots of odd, frankly scary events in the night, always on waking and that having noted them down in my diary, I have noticed they seem to cluster around the week before my period, are always between 4.45 and 6.00 am and that there have been 23 of them since 18th December 2012.

He said they did not fit the pattern or symptoms of a seizure, there is no indication from any of my tests of any abnormality that would cause seizures anyway and that other options may be migraine or even cardiac black-out - although they didn't present right for either of those options either.

He said having done all the tests and having a clear MRI, the next step would be to try me on triliptophans? (he had a really strong accent and neither dh could understand a lot of what he said - be both asked him to repeat that and still neither of us got it) but that with no clear 'evidence' of seizures he would be reluctant.

I said I didn't want drugs and I was only there because I'd been bullied into it by friends and family, as I normally don't bother with doctors for myself. He raised an eyebrow to this then just repeated what he'd said.

Then it went quiet, as if he was expecting us to say something, but neither dh or I had a clue what. So, dh said right so you are saying the night time episodes don't appear seizure like and you don't feel meds are appropriate, dw doesn't want meds anyway, so we do nothing?

He said, no that's not what I'm saying. I'm saying next and only course of action left to us is to try tri?? whatevers and see if it stops - but that I am not keen. We have done all the tests we can do on you and I am satisfied there is nothing on the MRI or other tests to suggest a physical cause for seizures.

I then said well what sort of information do you need from us to make a better judgement on what might be going on, could I just go away and keep a clear record of what happens? He said yes that would be helpful - then finally asked dh what he witnessed when I have my nocturnal episodes. I also told him about the CRPS which he deemed irrelevant - I said I thought it would be, but thought I should mention it anyway. I also pointed out that I am peri-menopausal and that we'd noted the clusters of nighttime events around my period and wondered if perhaps whatever is going on is hormonal, rather than neurological - he said that is possible but we can't know. hmm I also pointed out that most of my events have been following several nights of poor sleep.

After speaking to dh, he said he still felt the nighttime events didn't seem to be seizures, but he didn't know what was going on. He said a sleep deprived EEG is not indicated because my first EEG was clear, likewise with a video EEG in hopsital, but that he would order an ambulatory EEG to see if we could catch a nighttime event and that he wants dh to try and video some and that with that plus the diary he would review me in the future.

I said can't we just leave it then, if you think I'm not having seizures and you've already said I have nothing life-threatening based on my test results, so why carry on? He said that there clearly is something wrong, because I am having 'events' of some kind and whether it is psychological, hormonal, migraine, cardiac or something else, he can't say. Then just before I walked out he asked me if I have a stressful life. hmm I said I have had stress over the past couple of years, but that I was well at the worst of it and it is over now. He nodded. angry

... and that was that.

So, basically he doesn't believe I had the TC in November, because no-one was there to see it and he thinks all my other neuro symptoms are in my head.

moosemama Tue 19-Mar-13 15:05:38

Oh - and he told me nausea was not usually associated with seizures, so the fact that my aura-ey type pre-event feeling includes nausea and the feeling like I might be either sick or have an upset stomach precludes it being seizures. hmm

MerryCouthyMows Tue 19-Mar-13 15:17:12

Well, that's me out too - because I get that too. sad

MerryCouthyMows Tue 19-Mar-13 15:24:48

Why are Neuro's such pompous arses?!

Surely there are clear 'pathways' for doing these things, like a flow chart saying stuff like 'does the patient have X symptom?' 'Yes' 'do Y test'.

'Does patient have Z result?' 'No' 'then do G'.

Why do they have to be so bleeding dismissive, have the people skills of Atilla the Hun, and ignore what you are trying to tell them and be unclear about your treatment options?!

MerryCouthyMows Tue 19-Mar-13 15:25:17

Just about to do parents evening. Should be fun.

moosemama Tue 19-Mar-13 15:41:30

I think that's it thought Couthy, they only have flow charts, so if you are in anyway atypical in presentation they can't cope, because they are unable to think for themselves outside the box.

Good luck at parents' evening.

I have ds1's IEP review tomorrow. <resigned sigh>

LeonieDelt Tue 19-Mar-13 16:48:32

Some people describe the "epigastric aura" as nausea, or butterflies, or a "flip", or a rising. I've seen it in ENDLESS medical journals, so its not imagination.

Sounds like this neuro was just like my registrar visit was - determined to tell you it was NOTHING, had a glib and blithe answer for everything you brought up, and hellbent on ushering you out the door with your hands empty- just like that registrar did to me.

I honestly changed my descriptions to fit what i knew a decent neurologist would recognise, because words seem to important to them, the words used, and since i am not British i may not use the same words, and it seemed that my language barrier was part of my problem.

Consultant two weeks ago questioned me clearly on my notes on Tegretol - "had a severe case of the stupids" - i was just trying to note down that i was so dumb on that med that my mom thought i was drunk all the time. I couldnt even laugh at jokes, i was so dumbed down that i didnt get them... but my "language", my americanisms, my sense of humour, seems to bypass people entirely sometimes.

Might be PALS time. I complained about the registrar and it seems to have pulled a whole bunch of people in line. Then again, i am well aware (through following his rantings on twitter, of all places) that the Head Cheese consultant is very, very focussed on getting good reviews for his team, having high patient satisfaction, etc, so i used that to my advantage. By complaining, i put that at risk for him, so he moved hell and earth to see me, and he paid special attention to what i had to say, and i walked out with what i needed.

It might be the tactic you have to take too Moose. And no doubt you too Couthy!!!!

Now that i have my bottle of Topamax sat here, and an attack plan, does anyone want me to make some complaining calls on their behalves? Draft a letter of complaint? I enjoy that sort of thing you know...

LeonieDelt Tue 19-Mar-13 16:58:07

Triptans are for migraines - abortive meds, when you're in the middle of a migraine. Sumatriptan - aka Imigran, for example.

I cant believe how hard a time you're having, despite having a witness, to get him to believe you! The new epilepsy consultant yesterday asked questions about nighttimes, and asked me to clarify on my notes "bitten mouth" - i said i wake up sometimes having bitten the inside of my mouth. He asked for more information. I said i sometimes wake up with a headache that same day, and that sometimes i'll have a pulled muscle in my leg. He said "i think you're having nocturnal fits, are you a single mum?" and i answered that no, i have a husband who sleeps beside me, but that due to his work, he sometimes doesnt sleep when i do, clients in Australia and all that, plus he usually deals with the kids' nighttime issues because it just makes life harder on me if i deal with it, cant get back to sleep, cant function, etc. He asked if husband ever said anything to me about nighttime disturbances, i replied that yes, husband often complains of me "trying to take over his side of the bed" or being "all over the bed" etc...

And that's when consultant asked me if i had any questions and wanted to make sure i understood that this was very clearly epilepsy and there was no mistake in that diagnosis...

moosemama Tue 19-Mar-13 17:35:48

Ah, well I have been told I can't take Triptans, because I collapsed after taking Imigran when it first came out. I was one of the first people to be given it, way back when it came in a space age plastic case with a little pill pod inside. So, he's obviously read my notes then.

Dh told him I appear conscious but can't communication properly. I can answer in single words, but not have a conversation and that the pattern is consistent every single time it happens.

Locum was adamant that 23 events in 3 months is far too many for it to realistically be epilepsy - didn't dare tell him that each of those represents a day rather than and event and that most times I get 3-4 bigger ones and then 3-4 small ones to follow.

I have joined an international epilepsy forum to see if anyone there can offer any advice or suggestions.

I've told dh I feel like just giving up. He says that seeing as the locum said there is nothing diagnosable in my test results he is going to go back to the broker and find a private healthcare policy for me, so that we can go that route if things get worse. Meantime I am toying with just sending them a letter to go on file saying I have decided to go private, so don't bother with the ambulatory EEG. I just can't be doing with their time-wasting, patronising crap anymore, I want to get on with my life.

LeonieDelt Tue 19-Mar-13 17:42:54

What a douchebag - 23 events in 3 months is not unrealistic for epilepsy! Some people have that many a WEEK fgs.

My letter from Head Cheese Consultant says that i report mine may happen up to 12 times a month.

And TOUCH WOOD there are no NEAD suggestions for mine, not yet...

I think private may be your best bet. Might be worth seeing if any of the good guys i've seen at City hosp work privately?

LeonieDelt Tue 19-Mar-13 17:48:29

Dh told him I appear conscious but can't communication properly. I can answer in single words, but not have a conversation and that the pattern is consistent every single time it happens.

This was two points that have been discussed at my appointments in detail. The inability to communicate makes it complex partial. The consistent pattern was something Head Cheese clarified twice - and in his letter, it says "stereotyped" - which as we know means "happens the same way every time".

I think you have epilepsy too Moose, and i think they're pisstaking in a bad, bad way. I'll PM you the names of the fellas i've seen recently - maybe one of them can be of help to you?

moosemama Tue 19-Mar-13 17:49:26

I'm inclined to just give up though Leonie. I've coped this long without them.

Dh wants to start a private plan, so it's there if things get worse. I don't want to see anyone else at the moment, I've had enough. Ds1 has his school place and I just want to get on with living a normal-ish life for a while without all these time-wasting appointments and tests.

I have successfully predicted the outcome of every test and appointment I've had, so no more. I've had enough.

moosemama Tue 19-Mar-13 17:51:48

thanks Leonie.

I am just so bloody tired this evening and feel like I've wasted another day - not to mention a whole afternoon being incandescent with anger about it all.

Dh is away tonight and back late tomorrow - I think he's quite relieved about it after taking me to lunch and listening to my ranting. blush

LeonieDelt Tue 19-Mar-13 17:52:51

I do understand how you feel. I've also coped this long without pills, and despite having a small seizure on the walk home today (!!) i do wonder if i could cope without the med merry go round - i've coped this long.

But do i want to? Wouldnt it be nice to sleep a normal night, and then have a normal day without my ability to talk going out the window and that rising rush and the fear? Yeah, it would, really.

So i'm gonna soldier on with it i guess, as scared as i am of topamax (!!!), cos while i can get on with life as it is, i'd kinda like to see it improve a bit and become a bit more like normal peoples' lives?

That's probably a silly and possibly selfish point of view? i dunno.

LeonieDelt Tue 19-Mar-13 17:53:26

holding hand up - also a guilty ranter, lmao

LeonieDelt Tue 19-Mar-13 17:55:26

hang in there moose. <3 xx

LeonieDelt Tue 19-Mar-13 22:27:07

goodnight all. I hope tomorrow is a better day for all of us. xx

MerryCouthyMows Wed 20-Mar-13 03:12:26

I'll finish my story in a sec...it gets worse!

Moose, I have all the same symptoms too. I've no major doubts that it is epilepsy in my case, I have even been told as much by epilepsy action myself in the past (I'm going to look out their phone numbers tomorrow or Thursday - tons of other time sensitive stuff to do too), and I'm sure of it in your case too.

We will get there in the end.

Leonie - I have to be honest, despite the side effects, Topamax was the one and only med that FULLY controlled my seizures. And it DID.

They don't call it dopamax for nothing though...wink

MerryCouthyMows Wed 20-Mar-13 03:24:59

Continued :

Then I had the hinky smear test done. So I went for the original colposcopy. Couldn't do it due to the pain, then had all the seizures afterwards.

My description of what I remember from that day : I went and sat in the waiting room after the aborted attempt at the procedure. I was filling in forms when I got that rising feeling, the feeling of 'dread'.

Then I started getting 'pins and needles' in my eyes. It's not actually pins and needles, but it's like my eyes go 'fizzy'. There's millions of black dots, that start at the outside of my eyes and then crowd into the centre, and then as soon as my vision has gone black, that's the last thing I know. While this is happening, if anyone is trying to talk to me, it is almost like they are right next to me to start with, but they are getting further and further away, sounding like they are running away from me into a tunnel, then I can't hear them.

It all happens in the space of a minute though. (This is the case with all my seizures).

Then the next thing I know, I'm on the floor with loads of people standing over me.

I have an acute need to avoid any fuss, I just want to get up and get on with things, though it's almost like I can't 'order' my brain. I try to get up, but still feel 'woozy'.

Then I get a brief snippet of being in a wheelchair in the waiting room.

Then a brief snippet of being in another room.

Then of being really shouty saying "just get off me, let me sleep, I need to sleep"

Then waking up on a couch in a recovery room.

That's my memory of those seizures that day.

MerryCouthyMows Wed 20-Mar-13 03:42:16

My Ex's written account of the same event? :

When she was filling in the form, she said she felt dizzy. Her eyes rolled back in her head, her tongue lolled over to the left side, and she slumped down for about 2 mins then her eyes stopped rolling and her muscle tone improved.

After about a minute, her eyes started to roll again. She slumped over and her tongue lolled over to the left side again. This lasted for about 3-4 minutes.

I called a nurse and two nurses came to assist. The nurses tried to help me by shaking her and calling her to try to get a response but all she did was groan. After a couple of minutes if this, her muscle time improved and her eyes stopped rolling back in her head. She looked very confused.

Then her eyes started rolling again and her head slumped to the left. Her tongue lolled to the left too, and she made a 'slurpy' sound, like she was trying to breathe with her tongue in the way.

Both legs started to twitch slightly, but it was more obvious on the left. This lasted about 3-4 minutes, during which me and the nurses put her on the floor in the recovery position, on her right hand side.

Her eyes stopped rolling again. She lay on the floor for about 2 mins. Her muscle tone improved but she was not with it at all. It took about 5 minutes altogether, with getting her in the recovery position on the floor and spending 2 mins trying to wake her up.

Then her eyes rolled again, her muscles slumped, and her tongue slumped towards the floor, and she was groaning.

These last two were witnessed by both nurses and the Gynae consultant, Mr. Blahblah.

After a few minutes, she seemed more with it, and she started trying to ask done questions, but confusedly. She asked "what had happened, had she had a seizure?"

MerryCouthyMows Wed 20-Mar-13 03:53:55

She then said that she was alright, this happens a lot, she would be fine, and she tried to sit up. She seemed very woozy. The nurse told her to wait, and for once she did as someone told her, which isn't usual cos usually she would have just got up then and gone home to rest, so I knew this was worse for her than usual.

Me and the nurses then helped her into a wheelchair and took her to the recovery room. This took about 10 minutes.

In the recovery room when she was still in the wheelchair she had about 5 more seizures quickly after each other. Her eyes rolled back in her head again, her head slumped down and forwards and the nurse had to hold her head up to keep her airway open.

Her tongue lolled to the left and she was groaning in a droney way.

Each of these seizures was about 1-2 minutes long, with gaps of about 20 seconds between each one.

Eventually her muscle tone improved and then she retched and vomited phlegm.

We were trying to get her on the examining bed in the recovery room and she was quite abrupt with us, telling us to "just get off me, I need to sleep" or something like that.

We got her on the couch where she was only semi awake. She complained of being thirsty, drank some water the nurse got her, and apologised to the Gynae doctor for making his clinic run late.

The nurse asked her if she was still in pain from the procedure and she complained of stomach cramps. The nurse injected her with Buscopan and gave her 2 paracetamol suppositories. Couthy then fell right asleep for 1.5 - 2 hrs.

Altogether this started at 10.45am, and she didn't wake up until around 1.45pm.

MerryCouthyMows Wed 20-Mar-13 03:57:17

Apparently this description of how I was during each individual seizure is what I'm like during every seizure.

The tongue lolling to the left thing, and my head always slumping to the left, and the 'slurpy' breathing thing that happens with most of my seizures (according to Ex & DD & DS1's written accounts of a general overview of what they see when I have a seizure) concerns me.

If all of it is left sided, then surely that points to a problem with the right hand side of my brain, maybe right TLE?

I can't see how it would happen like this from NEAD?

MerryCouthyMows Wed 20-Mar-13 04:16:08

So, the nurses asked me before I left to see my GP with a view to trying to ensure that there is LESS chance of me having seizures whilst in recovery when I have the procedure done under GA.

So I go to see GP, armed with knowledge that probably adding an adjunct AED for the week before my surgery would probably help to avoid that situation. He tells me that he can't do that without talking to a Neuro, and he would contact the local Neuro ASAP. At this point I still didn't have my op date.

He says that in the meantime, I can raise my dose of the Gabapentin to 1500mg/day, as that's all he can do, and he waves me off with an additional Gabapentin prescription.

So I do as I'm told.

Get procedure date, contact surgery stressing the urgency of GP contact with Neuro.

Surgery assure me that it will be done in time.

It's not.

I have my op, luckily not one seizure after the general, and far from staying in overnight, I'm discharged home. Now the nurses say I'm fine to go home, I've had no seizures etc. so I get sorted to go home, book taxi etc. (Ex was coming with me, so wouldn't be alone).

Discharge papers turn up - form says I'm leaving AMA, and I have to sign it. Taxi already booked, so I think fuck it, I feel fine, I'd rather recover at home. So I sign it and go home.

Fast forward to DLA reconsidering my claim.

On phoning them & finding out why, and that it's because of the GP's letter (which was dated 16/01/13, but didn't arrive at DLA until 10/03/13...shows just how shitty my GP surgery is at doing their paperwork - think my bus pass form that took 5 weeks to get them to get around to as well!), I start doing some research.

Ring GP, and have a telephone appointment with him yesterday, where he claims his letter to DLA DID say that I have 'fits', and he HAD to send the Neuro letter from 2008 that dxd NEAD, as it's the most recent consultant letter. And that if I wanted him to fix this, I should hold off the appeal for DLA (you can't, dumbarse), see a Neuro, and see what they say.

I explained on the phone that it doesn't work like that, and I have just 4 weeks to PROVE to DLA that I have seizures and it is badly affecting my quality of life and how independent I am able to be.

GP then told me in the telephone appointment that he is happy to provide me with a sick note that states that I am unable to work, an open ended one. I tried to explain to him that a sick note won't make any difference to my DLA appeal.

So, I do more research, find out the usual protocol, and got angry. My icy-calm exterior type of angry!

MerryCouthyMows Wed 20-Mar-13 04:31:32

I write a list of questions I want to ask the GP, and also get the fucking witness statements the GP asked for.

So, I ring for an appointment.

Get into the appointment, and ask the GP to copy the witness statements (no facilities locally to do so, no library, no shops that do it).

He waves his hand dismissively and says "oh receptionist can do that" and turns to his computer.

I say that actually, I have a few questions I'd like to ask, to clarify a few things.

My list of questions :

Q1) If my dx is NEAD, why am I being prescribed Gabapentin as an AED?

"Gabapentin is used for other things besides epilepsy, so it is being prescribed for the NEAD"

I told him that AED's aren't the usual treatment for NEAD, usual treatment protocol is referral to a psychotherapist.

Then Q2) If it isn't epilepsy, then why is it that they Gabapentin works to start with, then seemingly my body gets used to it, and my seizures worsen? Surely that shows that it's more likely to be epilepsy than NEAD, if AED's help, without any psychotherapy?

He replied that he didn't know because he was just a GP, not a specialist.

This then jumped me to my Q3) If I do have NEAD, rather than epilepsy, why is it that 4.5 years AFTER my supposed dx (which, btw, shouldn't be dxd without a vEEG or another type of longer term EEG monitoring, to fully rule out epilepsy), I STILL haven't been referred to a psychotherapist?

His answer - "well, I was never told to do that, I'm just a GP, not a specialist, and the letter the Neuro sent me said nothing about psychotherapy".

I said "Surely as a GP, you don't just get a dx, and then leave that dx with no follow up treatment, so when I was 'dxd' with NEAD, you should have referred me to a psychotherapist?"

He said again that he "hadn't been told to do that".

I asked him if it was standard for him to leave a patient without the correct treatment for their dxd condition.

At which point, his demeanour started to change, and he took on a more aggressive position, leaning forward in his chair.

MerryCouthyMows Wed 20-Mar-13 04:59:32

I then asked my Q4) Why is there such a hormonal element to my seizures? Why is it that the amount if seizures I have more than doubles in the week before my period? Surely that told us that it is catamenial epilepsy rather than NEAD?

He replied that that did sound possible. In a grudgingly conceding way.

I also pointed out that my seizures stopped totally for the whole time I was pregnant, the whole time I was bf, but literally AS SOON AS my periods restarted, my seizures came back.

Oddly, at this point, his eyes seemed to flash with almost 'recognition'.

Then I asked why I had been given a diagnosis of NEAD rather than epilepsy, without any form of longer term EEG monitoring, as Neuro's are NOT meant to dx NEAD without that?

He then got into the fact that I hadn't gone for the vEEG that the consultant in Queens had told me to, and that it was impossible to treat me because I was non-compliant.

At this point, things took a turn for the worse. I explained that staying for 4 days, 3 nights 60+ miles away was just impossible in my situation, and that I HAD suggested an alternative to that Neuro of an ambulatory EEG, that would confirm that it was epilepsy OR rule it out, at which point I would be perfectly fine with a dx of NEAD.

At this point, he blew up, and shouted at me that "You don't get to choose which type of test we do, this isn't some pick and mix shop, Go and book am appointment with Dr. X, he makes all the clinical decisions for the PCT, ask HIM for this test, see what HE says"

Which made me cry. I'm SHIT in situations like that, and the minute I get frustrated, I cry. Every time. No matter how much I don't want to.

I pointed out to the GP then that surely it was negligent to accept a dx (of NEAD) when the differential dx (epilepsy) hadn't been PROPERLY ruled out by vEEG or ambulatory EEG.

The GP responded by saying that I chose not to have the test, so what could he do?

I explained, in tears, again, how impossible it was to get the childcare when 3 of my DC's have dxd SN's.

The GP then said, in a menacing tone "how do you manage to look after your DC's if you are having seizures then, surely it's not safe for them?"

I explained that my Ex was at the other end of a phone, and if I had a seizure that rendered me totally unable to look after the DC's, I phone him and he comes up for a few hours until I've recovered enough to carry on, after a sleep.

He then said "well, if he helps you, then HE can have the DC's while you have the test"

I explained that he was only the father of the youngest two DC's, and he would not be able to cope withot me with all 4 DC's, for 4 days / 3 nights. (Ex admits he can't, he's never even had his OWN two together on his own for more than one night yet...)

So the GP said "Well, leave them with your family then". And I explained that my Mother isn't suitable to left in sole care of my DC's, if she wasn't capable of being in sole care of me as a child...

So he said "Well then, Foster Care while you have the tests done, if that's the only solution"

I replied that I was NOT willing to involve SS in my life and put my DC's into 'voluntary FC' just for a medical test when there IS a perfectly good, viable alternative that would still enable me to care for my DC's.

At this point, he picked up the phone...

My first thought was FUUUUUUCK, I ask him if he's negligent, and he's phoning SS to get me to back off!!

Which scared the SHIT out of me...

So I ask if he feels his behaviour was negligent, and he threatens me with SS...

I asked him who he was ringing, and he refused to answer.

I asked him again, and he refused to answer.

So I told him that I did NOT give him permission to ring SS and 'request' some help for me, and he snapped at me that he was ringing the practice manager. The practice managed cane in, and my Dr turned to her and said "take her out if the room, I've got other patients to see", and she took me into another room.

I'll update on what happened with the practice manager tomorrow. Well, later today tbh!

MerryCouthyMows Wed 20-Mar-13 05:01:21

My biggest question right now is why the clinical decision maker for my PCT is now seeing patients for 3 hours a week at my local surgery.

Is my GP under some sort of supervision??

MerryCouthyMows Wed 20-Mar-13 05:09:15

And if he is, how fucking unlucky can one person be?! First my GP at my old surgery ends up struck off, and then I end up with another GP who is ?possibly? Being investigated, and IS negligent at best...

angryangryangryangryangryangryangry

WTF did I DO in a former life??!!

MerryCouthyMows Wed 20-Mar-13 05:12:04

All I want is the CORRECT dx, and the CORRECT treatment for that dx, is that too much to ask?!

I don't give a pig's bollocks whether it is epilepsy or NEAD, the effect on my life is the same.

What I DO want is the correct tests to rule epilepsy in or out, and the correct treatment for whichever of the two it is.

Too much to ask of the NHS?

I don't HAVE the option of going private. sad

MerryCouthyMows Wed 20-Mar-13 05:14:13

Going back to bed now! (I feel asleep earlier, slept from 8.30pm - 1.30am...so more sleep than I'm used to, as Ex has DS3 downstairs and did bedtime for the older ones for me)

LeonieDelt Wed 20-Mar-13 07:31:59

oh couthy, this breaks my heart to read sad

LeonieDelt Wed 20-Mar-13 09:36:57

i dont even have any useful advice- but i know full well that if my GP had any say in it, i'd be dx'ed with NEAD too. i know full well that is what she wanted for me because i see how my consultant has responded in the letter. I know she is disappointed in my diagnosis of epilepsy, i know she wanted to paint me up as further "crazy" and then she'd win.

Though wtf the "prize" is, i'm not sure, the booby prize i guess.

LeonieDelt Wed 20-Mar-13 09:39:44

Yes, gabapentin is used off licence for anxiety disorders - but on specialist's advice alone. Is your prescription for gabapentin on specialist's advice? If so, which specialist is it?

If its being used for anxiety, that would need to come from a pretty high ranking neuro/psych i would have thought?

BNF entry:

"Gabapentin and pregabalin
Gabapentin and pregabalin are used for the treatment of focal seizures with or without secondary generalisation. They are also licensed for the treatment of neuropathic pain (section 4.7.3). Pregabalin is licensed for the treatment of generalised anxiety disorder (section 4.3). Gabapentin is an effective treatment for migraine prophylaxis [unlicensed] (section 4.7.4.2)."

"Anxiety disorders and obsessive-compulsive disorder

Management of acute anxiety generally involves the use of a benzodiazepine or buspirone (section 4.1.2). For chronic anxiety (of longer than 4 weeks' duration) it may be appropriate to use an antidepressant. Combined therapy with a benzodiazepine may be required until the antidepressant takes effect. Patients with generalised anxiety disorder, a form of chronic anxiety, should be offered psychological treatment before initiating an antidepressant. If drug treatment is needed, an SSRI such as escitalopram, paroxetine, or sertraline [unlicensed], can be used. Duloxetine and venlafaxine (serotonin and noradrenaline reuptake inhibitors) are also recommended for the treatment of generalised anxiety disorder; if the patient cannot tolerate SSRIs or serotonin and noradrenaline reuptake inhibitors (or if treatment has failed to control symptoms), pregabalin can be considered.

Panic disorder, obsessive-compulsive disorder, post-traumatic stress disorder, and phobic states such as social anxiety disorder are treated with SSRIs. Clomipramine or imipramine can be used second-line in panic disorder [unlicensed]; clomipramine can also be used second-line for obsessive-compulsive disorder. Moclobemide is licensed for the treatment of social anxiety disorder."

MerryCouthyMows Wed 20-Mar-13 10:02:24

blush I can't remember the FIRST person who prescribed me Gabapentin. I was ALREADY on Gabapentin when I saw the flashy doc at Queens.

It was EITHER the GP himself, or the Neuro at the private hospital - but I don't recall him prescribing ANYTHING, so my guess is that it was the GP when I had to stop taking the Tegretol because of the liver issues and jaundice...

MerryCouthyMows Wed 20-Mar-13 10:18:54

I'm NOT 'anxious' though! Only frustrated and irritated that me and my DC's can't get the medical help we need.

Oh, and get this - my GP's practice has a 'counsellor' attached to them. I've had a phone call asking me to contact them. What's the betting that they are going to try to 'placate' me with some counselling sessions?

They did that round about the time is seen the flashy Neuro from Queen's too, actually. But she ISN'T a psychotherapist - she's a counsellor.

AND to start with, they only offered be 6 sessions. I had DS2 as a preschooler then. The first two appointments were ok, but after that I had issues because of school holidays and not having childcare. And then they changed the time if the appointment so that it would have meant I couldn't have reached my DC's school in time for 3pm...

I'm NOT being fobbed off again!!

MerryCouthyMows Wed 20-Mar-13 13:07:39

angryangryangryangry

I give the hell up!! I've tried umpteen times to get hold of this 'counsellor', as she stressed it was urgent, but am never getting an answer.

My HV told me she would call me back before the end of YESTERDAY, and all I'm getting is her answerphone on the mobile number, and her office have left a message this morning and a message just now.

The thing is, without the HV telling the GP practice manager that there IS no answer to the lack of childcare for me to have the vEEG, the practice manager isn't going to push for me to have an ambulatory EEG.

(Can I have yours, Moose?!) wink

This counsellor ISN'T a psychotherapist, and I'm not going to see a psychotherapist UNTIL epilepsy has been FULLY ruled out by an ambulatory EEG.

I'm happy to admit it's psychological and NEAD just as soon as they have done some sort of long term EEG that shows beyond a shadow of a doubt that there is NO brain wave issues that remotely point to epilepsy. And I'd like an MRI scan too.

At that point, if there are no findings that correspond to epilepsy, I wish to be sent to a QUALIFIED psychotherapist.

However, if there are any findings that might be consistent with epilepsy, I want a referral to the new local Neuro we now have.

So, what do I want?

1) An ambulatory EEG, preferably for the week before my period is due.

2) An MRI scan.

3) Depending on EEG results and MRI results, I either want a referral to the new local Neuro, OR a referral to a QUALIFIED psychotherapist (NOT a counsellor).

Too much to ask for?

LeonieDelt Wed 20-Mar-13 13:11:43

shouldn't the neuro be ordering, and indeed interpreting, those tests, couthy? like, not the Gp?

I'm a little unclear on that point tbh. I'd be demanding a referral to the neuro firstly, and let him decide which tests Are clinically indicated?

LeonieDelt Wed 20-Mar-13 13:13:01

I say that cos epilepsy is a clinical diagnosis, and nice guidelines say that eeg should not be used to rule out epilepsy in isolation.

nice guidelines are your weapon here couthy - use them.

moosemama Wed 20-Mar-13 13:33:21

Couthy, I don't know what to say - other than I think you had the GP bang to rights and he knew it, hence the sudden aggression and upscaling your complaint to the Practice Manager. I think he was probably worried that he would insert his foot in his mouth even further than he already had if he said anymore and could already have been warned by PM about not saying anything that could go 'legal'.

You don't deserve this treatment and I wish there was something I could say or do to help.

MerryCouthyMows Wed 20-Mar-13 14:08:55

I'm tired now, DS3 has been awake since 5am with no nap. I'm shattered.

Still no call from the HV, still no answer from the counsellor.

sad

LeonieDelt Wed 20-Mar-13 14:28:23

I had three seizures yesterday and two dizzy spells so far today... I feel like hell warmed up.

I guess I better start the topamax.

I am afraid to! how stupid is that. I don't mind the word retrieval issues, I dont mind the tingly hands or the coke-tastes-like-ass side effect.

I don't want to go blind though! its a bit scary sad

moosemama Wed 20-Mar-13 14:39:39

Leonie, not everyone gets the side effects, let alone badly and harsh as it might sound, now you know someone who has had their eyesight affected, it is statistically less likely to happen to you.

But you know that anyway really, you're just having a wobble.

Had ds1's IEP review earlier.

Hilariously they had to climb down and say that checklists do not work with ds1. Which is exactly what I told both them and the LEA when they snuck it into the statement after we'd already agreed the final copy.

They also finally grasped how his diary is supposed to work and his teacher was visibly relieved, because it made absolutely no sense at all the way they had them doing it up until now.

Other than that the IEP is staying exactly the same (can't be arsed to even pretend to work with them on strategies at this point) and they are going to contact the indie to arrange an AR time that they can definitely attend. Only thing I thought was a bit off was that they said LEA Officer won't be attending, but will be informed when it is taking place. I'm not comfortable with this, given the battle we've had this year, so dh is going to have a chat with her and see if she's willing to attend.

Need to finish packing for ds2's trip and have a meeting about the new Grammar SAT tomorrow and I am still bubbling with rage under the surface about yesterday. Can't wait for the weekend and am positively dragging myself to the Easter holidays now.

MerryCouthyMows Wed 20-Mar-13 14:56:45

I have been the only person the manufacturers knew of to get permanent sight damage from Topamax - the handful of others the world over had temporary sight problems that reversed on cessation of Topamax.

So I wouldn't be too worried - I'm just VERY unusual!

giraffesCantDateDucks Wed 20-Mar-13 15:31:44

I have no experience of epilepsy but stumbled on this by accident - OMG shocking that they are not helping more to get a proper diagnosis. sad Wankers!

MerryCouthyMows Wed 20-Mar-13 15:50:44

I now know why my HV didn't get back to me yesterday and hasn't been answering my calls today.

Despite her being my HV yesterday, suddenly today I have a new HV that I have seen in clinic before and REALLY don't get along with.

I asked why she was my HV yesterday and not today and got told 'we have swapped a few things around in the office'.

When I asked if my HV had asked to be removed from my case, I got told "I am not at liberty to disclose discussions that took place in our office today".

I then asked if other people's cases had also had a change of HV, and got told "I am not at liberty to discuss other people's cases with you".

So in other words, NO.

This is going to fuck up DS3's ADOS assessment in May. If I have a VERY unsupportive HV, trying to obstruct the process, he's not going to get his dx, is he?

Why are they doing this to us? I'm ttrying to hold in the tears till I get in.

The new HV is the same one who denied for 5 months about DS3's dairy allergy and didn't tell the GP like she said she would...

Like I said, obstructive and I've already proved her wrong once because his dairy allergy was proven by skin prick tests done by the paediatric allergist...

Fuxake.

MerryCouthyMows Wed 20-Mar-13 15:58:29

Maybe the DC's would be better off in care. Maybe then they would get the help that they need. Because I'm at a loss as to what else I can do.

I'm branded a non-cooperative nut job without even proper clinical tests done, my HV asks to remove herself from my case simply because I ask a seemingly innocuous question...

"My GP surgery practice manager has asked me to ask you if you have any suggestions as to what I can do for childcare for 4 days and 3 nights because they want me to do a vEEG. Do you have any suggestions? The GP suggested voluntary foster care, but I'm not willing to put my DC's in VFC for the sake of a medical test when there is a viable alternative in an ambulatory EEG that would be possible to do whilst I care for my DC's."

Old HV response? "Well, I can't think of anything, and saying VFC for a medical test is laughable, because there just isn't the FC's available to do that, is there?!"

I then explained to old HV that the practice managed had asked for HER to ring and tell them this, and she said she would do so and contact me before the end of the day (yesterday).

This is just breaking me.

MerryCouthyMows Wed 20-Mar-13 16:24:00

Now spoken to NEW HV. She says she cannot advise on my childcare issues OR my medical issues, and that I should get back in contact with my practice manager.

So I ring the GP surgery and ask to speak to the practice manager. She's left for the day, and is 'on annual leave until 2nd April'.

So I'm NOT going to get my DLA sorted in time. I'm GOING to end up having to pay back the money DLA have paid me AND the money IS have paid me as severe disablement premium.

What do I do now?

I'm... I don't know what I'm feeling.

In crying. There's nothing I can do.

And new HV wants to 'contact social care (I.e. SS) to 'see what they might be able to do to help'.

OH DO FUCK OFF, THERE'S A LOVE.

And the new HV had no answer as to why my old HV hadn't come out with the new HV to do a handover, like they're meant to.

<<Shrug>>

What's the point any more?

MerryCouthyMows Wed 20-Mar-13 16:24:01

Now spoken to NEW HV. She says she cannot advise on my childcare issues OR my medical issues, and that I should get back in contact with my practice manager.

So I ring the GP surgery and ask to speak to the practice manager. She's left for the day, and is 'on annual leave until 2nd April'.

So I'm NOT going to get my DLA sorted in time. I'm GOING to end up having to pay back the money DLA have paid me AND the money IS have paid me as severe disablement premium.

What do I do now?

I'm... I don't know what I'm feeling.

In crying. There's nothing I can do.

And new HV wants to 'contact social care (I.e. SS) to 'see what they might be able to do to help'.

OH DO FUCK OFF, THERE'S A LOVE.

And the new HV had no answer as to why my old HV hadn't come out with the new HV to do a handover, like they're meant to.

<<Shrug>>

What's the point any more?

MerryCouthyMows Wed 20-Mar-13 16:24:36

Sorry for double post.

MerryCouthyMows Wed 20-Mar-13 16:26:14

Oh, and apparently my old HV wasn't a qualified HV. And every case should have a qualified HV. So why has she been my HV for the last X amount of months?

confused

LeonieDelt Wed 20-Mar-13 16:52:33

moose and couthy, you are of course right re the eye problems wrt topamax.

i will start it tomorrow morning. i've had a very wobbly weird day and i am sick of it. I have to keep telling myself that's why i pursued a diagnosis was to get back to NORMAL (whatever that is).

Lamictal stopped all that wobbly dizzy weirdness (which is obviously seizure activity), so i am gutted i couldnt stay on it.

I hope to goodness topamax stops it too.

LeonieDelt Wed 20-Mar-13 17:05:38

oh couthy, i wish i had something useful to say sad

LeonieDelt Wed 20-Mar-13 20:50:04

i hope you've had an uneventful evening. i'm going to turn in soon i think. I have a lot of thinking to do - pills to take in the morning, and a whole bunch of courage to muster from somewhere.

MerryCouthyMows Wed 20-Mar-13 21:46:56

Good luck with the Topamax in the morning, Leonie. And here's hoping that they stop your seizures as well as they did mine.

I'm going to turn in as soon as DD is in bed and DS3 is asleep. Not currently looking like it will be soon as he is currently driving cars on my head. hmm

LeonieDelt Wed 20-Mar-13 21:48:16

Lamotrigine seemed to stop ALL of it - i felt like a total fraud after the dx because it was all stopped so well, i must have imagined it!

except, its all back now, while i'm navel gazing. So it must be real.

what a silly thing to think, i know. but i really did think it.

LeonieDelt Wed 20-Mar-13 21:48:31

here's hoping we all get a lot of sleep xxx

MerryCouthyMows Thu 21-Mar-13 00:08:31

That's looking less and less likely - DS3 STILL awake. VERY awake.

I on the other hand, am employing matchsticks to prop my eyelids open...

LeonieDelt Thu 21-Mar-13 07:45:12

my eyes were very sore when i went to bed last night, and one of them looks red and swollen underneath this morning - withOUT ANY topamax! I have a bug in my throat and a lot of green gunk so i dont want to confuse conjunctivitis by viral means with some dreaded drug induced eye thing... i may wait another day or two on the topamax. Then again, i might not. Decisions...

MerryCouthyMows Thu 21-Mar-13 08:08:44

Leonie, I would start today. The conjunctivitis WILL be easily told apart from any eye problems that (are VERY unlikely) to happen as a result of Topamax.

It's SO rare a side effect for Topamax that it wasn't even on the patient information leaflet as an 'extremely rare side effect' until I had my yellow card and had to fill in forms and have a medical with the manufacturers.

Seriously, stop worrying about something that is sooooo unlikely to happen.

Take the damn tablets, woman!!

LeonieDelt Thu 21-Mar-13 10:15:19

its just my anxiety I need to keep under control, you know? I am nervous, the first med made me ill, I'm a bit less gung ho to launch into the second med.

that said, I had it in my pocket and am still contemplating it.

had a funny phone call this morning. Robert Peel Hosp in Tamworth rang this morning, asked me how I got on with diagnosis (cos they postponed my cystoscopy because of being in the middle of epilepsy DX) and I said yeah, I got it.

and the lady replied, oh. we don't 'do' epileptics here.

I replied that honestly I didn't feel 'safe' there anyway and I didn't want to have a general anaesthetic in a hospital where there are like two staff and the halls were empty...

so it'll be batted back to my gynae, who will no doubt schedule it to happen in the local hospital / heart of England somewhere.

phew. one less phone call to make! cos I wasn't going back to tamworth, I had the heebie jeebies the first time and was hugely relieved when they cancelled!

moosemama Thu 21-Mar-13 12:47:48

I hope you corrected the woman from the hospital Leonie, I would have said "I am not an 'epileptic', I 'have epilepsy'" sounds positively antiquated in her attitude to me, but them I am mega over-sensitive today. Glad you are going to get the chance to get your cytoscopy done at a bigger hospital though.

I am having a horrible day and feel really pathetic. In fact I just sobbed all the way home from dropping dd at nursery, came in, sat down and sobbed all over again.

I think part of it is probably PMT, part of it is still feeling all over the place about my appointment and what I am going to do, part of it is ds2 going away with school for the weekend and the rest is just sheer exhaustion.

I have hardly slept at all for two nights now. It's taking hours to drop off, then I wake in the small ours and don't get back to sleep, just keep tossing and turning until dh's alarm goes off at 6.00 am. No episodes to speak off but feel generally 'buzzy' and kind of electric, iykwim and have a horrible burning headachey pain deep in my right temple that feels like something is trying to burn it's way out confused as well as flashing lights and spots and what feels like a developing migraine - and I have two more school runs and a school meeting to do, plus I have to finish ds2's packing and type up a packing list for him.

Dh very kindly text his boss and told him he'd be late in so he could take the boys to school this morning as I was just non-functional. Sat vegetating with Cbeebies babysitting dd for a while, got up, walked in the kitchen and an empty floradix bottle jumped off the drainer and smashed to smithereens. It was one of the giant bottles and it went everywhere, all over the kitchen, the laundry, bathroom and even into the living room - yet there was no-one anywhere near it when it fell. It took forever to find and clear up every last shard of glass and by then my head was pounding.

Dd had lunch, went to the toilet, came in to put her uniform on and deposited to lovely lumps of poo on the living room floor! shock I was so shocked that I shouted and she was totally traumatised because I never shout at her. Managed to clean her and the floor up, came back and realised it was all over the inside of her jeans as well. Then she told me she hadn't put any pants on this morning, because Daddy didn't get any out for her. hmm No excuse, she knows where they are in her room, can reach them and has got her own out many times in the past. So of course feeling as I do I snapped at her again and she was really upset.

Made up, had a cuddle and reinforced the whole Mummy loves you even when she's cross thing and she seemed fine, then just before we went to go out, when she was already in her coat etc, she started panicking that she needed the toilet again, making us late. She didn't need to go, but when I went in to check she was frantically wiping her bottom despite not having done anything and looking really worried.

I feel terrible, because we've only just got her over serious anxiety about going to the toilet (and she was going literally every five minutes at one point) since she got upset when another child was injured at nursery and three other children wet themselves afterwards. It's taken lots of support and various strategies to stop her stressing about going and also sitting on the toilet for hours not 'producing' anything and we've only just been able to stop using the timer to time 5 minutes from when she gets on and then she has to get off and leave it an hour before she tries again. Now she's back to stressing and it's my fault for losing my temper with her. sad

Can't get warm either today for some reason today. I am not generally a cold person, but despite a jumper and a sweatshirt I am shivering. I suppose that's probably hormonal as well.

I feel so pathetically wobbly, all I want to do is go and curl up under my duvet and I can't. sad

Sorry for the whinge. blush

moosemama Thu 21-Mar-13 12:50:40

Lordy, my typing!

That'll teach me for not previewing. blush

Too many errors to correct - so will just apologise for the lot instead - can't get anything right today.

LeonieDelt Thu 21-Mar-13 13:12:29

its the wind, its bitter out there!

I accidentally left my coat in a caravan at the weekend, so I went to charity today and bought a coat to keep me warm cos I'm tired of freezing - got a 13yr old boy's corduroy coat from h&m, used, for £8 and I'm wearing it like a fashion statement - cos it keeps my freezing ass warm blush

since I lost all that weight last year, I've never had to wear a thick coat, a hoodie, and a T-shirt. never in my life. but now? Add gloves to it too. I get soooo cold!

I see epileptic like autistic, its all kinda the same. just a word. maybe I'm just happy enough to have a diagnosis that I'm not bogged down in terminology yet - and haven't been subjected to the discrimination that comes with it - yet. maybe once I come to terms with it, get used to it, it'll all make more sense to me?

still got that pill in my pocket, and I think I'm about to swallow it.

I hope everyone's day improves by leaps and bounds. love to you both x

LeonieDelt Thu 21-Mar-13 13:23:04

oh bless her! I shout too though - we're just humans under unimaginable strain. it would be abnormal not to shout! poor wee munch.

yikes re the floradix, I hate it when. glass shatters everywhere, bugger. what a waste.

moosemama Thu 21-Mar-13 13:40:28

You see it's odd, because I am the same about the word 'autistic'. It doesn't bother me and I have been glared at a couple of times for accidentally saying it in the wrong company, iykwim. The 'epileptic' thing was just at the forefront of my mind because I read it on the posting terms and conditions on the other forum a couple of days ago - that and the fact I am beyond grumpy today, so likely to react to all manner of things that never usually bother me - blooming hormones!

Hope you've taken that pill now - good luck with it. x

LeonieDelt Thu 21-Mar-13 14:00:01

I swallowed it! here goes nothing!

MerryCouthyMows Thu 21-Mar-13 14:26:00

My Ex managed to bump into the go sultans that tried to do my colposcopy under local, the one who witnessed all the seizures!

(Ex is a chef at the hospital)

Consultant has agreed to write a statement saying what he witnessed, and that in his opinion, I was having epileptic seizures!!!

gringringringrin

May yet give my bastard GP his comeuppance !!

Counsellor I've been referred to IS a qualified psychotherapist, and to placate my GP, I've agreed to fortnightly visits, starting next Tuesday, when DS3 is out with his dad.

It DOESN'T mean I'm fully accepting a dx of NEAD, but it might help me to cope with what is, essentially a situation that is more than one person can cope with, and give me an outlet for all my stresses.

<<Shrug>>

I'm still going to put in a complaint about my GP to the practice manager, and I'm still going to continue pushing for an ambulatory EEG. I can still go to the counselling sessions as a way of showing 'goodwill'...

Getting somewhere though, with this letter from the Gynae consultant!

Made my day, that has!

MerryCouthyMows Thu 21-Mar-13 14:31:30

And I'm just printing out the last of my appeal for the Grammar for DS1.

The SenCo at the school did another non-verbal reasoning test and a BPVS test on DS1, and he came out on the 99th Percentile for non-verbal reasoning, and on the 96th Percentile on the BPVS.

Yet he has no social skills, and the school are noticing his rigidity of thought patterns and sensitivity to general classroom noise and his it affects the work produced, which is at a far lower standard (though still far above average - he is ONE MARK off a NC lvl 6 in ALL areas, so is expected to sit the lvl 6 SATS in May) than someone of his high intelligence should be producing.

Because if his sensory issues...

Yet they are adamant he is in no way on the Autistic Spectrum...

The phrase "my arse" springs to mind...

And why is it that the SenCo can find the time to do these tests just 4 hrs after I ask her, yet for DS2, she can't provide him with a writing slope despite promising it 4.5 YEARS ago?!

LeonieDelt Thu 21-Mar-13 16:10:59

Horray Couthy!!! That's good news indeed! Yay for the gynae smile

LeonieDelt Thu 21-Mar-13 16:11:50

tbh, the counsellor is probably a good idea NEAD or no NEAD.

LeonieDelt Thu 21-Mar-13 16:17:51

right. Topamax is fun! So far anyway.

I've accused a croissant of being clothing, and completely drawn a blank on the deputy head's name, and that's with this pill in me for 4 hours now.

LMAO.

That said, the feeling is similar to lamotrigine, but with added energy (?!) - the noise in my head, the constant chatter, the feeling of unutterable tiredness is lifting. Is that supposed to happen within a few hours of swallowing the things for the first time?

What is that noise? Its hard to define, noise perhaps isnt the right word. For years now i've been plagued by an inability to concentrate, to focus, to make my mind do what i needed it to do - there's been a background chatter, an unstoppable interruption constantly plaguing me, making me feel exhausted and unable to clear my head.

I am sleepy right now, don't think i'm not. I could really use a nap, and i've had enough of this fucking bitter wind in my face (!!!) but this is different. Its like my brain is AWAKE for the first time in years.

I felt the same with the lamotrigine, awake for the first time, but what i really noticed with lamotrigine was that the constant feeling of tension in my chest was gone. I was gutted to stop taking it tbh.

I thought that sleepy un-awake feeling was the clonazepam hence i began reducing my dose last year from 1mg to 0.375mg, but it didnt make a lick of difference tbh, in fact, i think i was more un-awake at the lower dose, if that makes any sense?

Bizarre what happens when we mess about with brain chemistry.

moosemama Thu 21-Mar-13 16:56:00

Couthy, I am so pleased you have finally got some good news. Fantastic news about the gynae - that'll be one in the eye for your GP and the DLA bods.

I think the counselling is also a great idea. I went for some when ds2 was about 10 months old and it was so great, just to be out of the house, without any children and able to talk about whatever I wanted to talk about with someone who wasn't involved. I really enjoyed it and took the opportunity to take some time to actually put on some decent clothes and make-up when I went, as Lord only knows I never got the chance otherwise. It was a welcome break, someone to talk to and helped sort my head out into the bargain. Win/win.

Well, having forced myself to pack ds's case, iron a load more clothes to pack so he has more layers and put in some extra fleeces and thermals - I got to the school to pick him up to be told there was a meeting in the hall because the LEA have cancelled the trip. I could have curled up under a blanket all afternoon after all. hmm

Apparently they have predicted 15-20 inches of snow for the area they are/were going to. hmm Fortunately ds2 was fine about it, because it means he can still go to Pokemon League on Saturday - although they always cancel that if there's bad snow and we're predicted quite a lot here as well.

They've rescheduled for the end of April and it was only by luck that dh and I decided the other weekend not to book Legoland that weekend. In fact it's now booked for the day after ds2's birthday, so he says that makes it even more exciting.

Thank God they didn't do this when ds1 went. Weeks of careful prep and support to enable him to go and then they pull the trip at the last minute. The ensuing meltdown doesn't bear thinking about. <shudder>

moosemama Thu 21-Mar-13 17:00:42

Leonie, that sounds like cognitive fog. I've also suffered from it for years. It feels like a sort of unidentifiable chaos going on inside your head that get's in the way of all your thought patterns. When the latest Levellers album called 'Static on the Airways' came out and I listened to the title track I thought - yes - that's it, that's what's going on in my head!

Unfortunately, for me, it got worse - not better with Topomax, until I reached the point where I couldn't form a thought at all and words were beyond me. It was horrible and my family said they didn't recognise me anymore, because I had lost all my personality and was virtually unable to communicate with them. Sounds like it might suit you better, going on today.

MerryCouthyMows Thu 21-Mar-13 17:02:02

Topamax is also a stimulant (hence the appetite suppressing side effect that helps you to lose weight) - I found that while I was on it I had almost all the symptoms of ADHD!

So yes, it IS normal. It calms down by about halfway through the second week, I found, once your body is more used to it.

MerryCouthyMows Thu 21-Mar-13 17:05:06

Um, snow...?

<<Tentatively asking because I HAVE to get into town this weekend to pick up DD's acceptance form for her work experience as it has to be in next week...>>

(Yes, I actually managed to find someone willing to give her work experience! It took a while, but I found a lovely little cake shop for her to work in!)

MerryCouthyMows Thu 21-Mar-13 17:07:10

New Levellers album?! Tell me more - I have money sitting in iTunes and the Levellers are one of my favourite bands (nobody I know has ever heard of them!!)

moosemama Thu 21-Mar-13 17:16:53

Ooo Couthy, the Moose household are big Levellers fans. I am going to a festival they're headlining at it May! grin

I think their album came out last Autumn. Dh bought it for me for Christmas.

... and yes, sorry, snow and lots of it - but we are West Midlands, which has an amber warning, whereas I think your side of the country isn't going to get it so badly.

Album trailer with band members you can hear the 'static' bit that reminds me of cog fog at the start.

I absolutely bloody love Truth Is off it. It was the campervan song of choice on our summer holiday last year. grin

MerryCouthyMows Thu 21-Mar-13 17:17:06

Obviously wasn't the right AED for you, Moose.

Hopefully you fare well on it, Leonie.

As for the 'cognitive fog', I have that all the bloody time too - it's why I'm finding trying to do all these things at once so hard, because I can't focus my thoughts on any one of them, it's all just jumbled in my head!

It has got slightly worse since they upped my dose of Gabapentin, but I'm sure it will clear in a few weeks.

The only time I didn't feel like that was when I was on the Topamax. Which is why it was such a shame I had such severe side effects that meant I had to stop it.

I've just had a thought - I wonder if there are any other AED's in the same 'group' as Topirimate? Maybe they might work better to control my seizures if they are more similar to
Topamax?

<<Ponders for future reference if I ever get to see a Neuro again>>

Also, I have discovered that another patient at my surgery has put in an official complaint - because the GP misdxd her pneumonia as 'a mild viral infection', and kept sending her home with no treatment. She ended up being blue lighted to hospital.

I don't know if any of you remember that in 2009...the self same thing happened to me and I nearly died from the pneumonia.

I had a massive thread in _Chat at the time, under one of my old names...

So it REALLY wouldn't surprise me if the GP was under supervision. I've also bumped into a friend...and she has just left the surgery too.

Though she does say that my new HV (that I find quite abrupt) has been her HV for 5 years, and she finds her to be ok once you get to know her - so I'll give her the benefit of the doubt.

MerryCouthyMows Thu 21-Mar-13 17:18:27

I know what I'll be downloading later tonight with my remaining iTunes money from Christmas then!!

grin

New toonage!

moosemama Thu 21-Mar-13 17:18:56

Saw Mark Chapman doing an impromptu one-man show at the same festival last year - it was cracking!

LeonieDelt Thu 21-Mar-13 17:21:10

goodness. aren't we all so very different! i dont mind the word slippage tbh.

the constant inability to think or function has driven me batshit though! I'll be damn glad to be rid of it if this pans out.

LeonieDelt Thu 21-Mar-13 17:22:11

FUCK THE SNOW!!!!!!!!!!!

There, i feel better.

hmm i have had ENOUGH of the fucking white stuff, i really seriously have. Enough is enough.

moosemama Thu 21-Mar-13 17:25:30

Couthy, unfortunately not the right AED for me, no. Although despite the horrible side effects it did work. It killed my complex migraines dead. Iirc I was on it for roughly 6 months and they never came back after I was taken off it. I have had a few migraines since, but nothing like the monsters I used to have - until last month, starting the first day of my, early, period. hmm

Leonie, what do you mean by different? Music?

moosemama Thu 21-Mar-13 17:26:44

Ha! That's what I said when I found out - and again when I looked it up online. grin hmm angry

Ffs, a couple of years ago we had a party for ds1's birthday in the first week of April and the kids got sunburn and needed to be constantly fed ice lollies and cold drinks. hmm

LeonieDelt Thu 21-Mar-13 17:27:04

I think Topamax, like Lamotrigine, is a lone one in its group - a Highlander. There can be only one!

Sad really. I read last night about a timed release topiramate, and a new investigational compound coming out, so there is still some money in AEDs - and as long as there's money to be thrown at the conditions, there will be research, and new meds.

And as long as they can sell the meds for bipolar, they'll make twice as much money and be twice as happy.

or summat. grin

LeonieDelt Thu 21-Mar-13 17:28:32

i meant different wrt reactions to topamax, reactions to meds. Different bodies, similar conditions but very different bodies.

I find it so fascinating!

moosemama Thu 21-Mar-13 17:37:41

Ah - was just wondering what music you were into. confused

LeonieDelt Thu 21-Mar-13 17:54:05

oh me? all sorts. pulp. pink floyd. the eagles. queen. travis. dido. all sorts!

LeonieDelt Thu 21-Mar-13 18:14:39

tbh, i havent listened to music in months - the noise in my head has been too loud, the knots in my stomach too tight, to be able to listen to music. that's awful, isnt it?

moosemama Thu 21-Mar-13 18:25:46

I don't tend to listen to it very often - mainly when we're in the camper and at festivals! grin

We have a few bands in common on your list. Love the Eagles, Queen and Dido.

Hopefully the Topomax will allow you to enjoy listening to music again.

LeonieDelt Thu 21-Mar-13 18:29:14

music's usually the first thing that goes, tbh, when i dont feel well.

In 2001, i was the lead singer in the company's on-the-side band. Back when i had a job, a career, and a singing voice.

Aaah, youth.

moosemama Thu 21-Mar-13 18:45:02

Ooo a singer! What sort of stuff did you sing?

Excuse me if I disappear - I have a year 6 SATs meeting to go to any second - if dh ever gets home. hmm

LeonieDelt Thu 21-Mar-13 19:02:29

whatever the band played - lots of covers. even Local Boy in the Photograph, Stereophonics. lmao. And the Corrs. And the Monkees. And all sorts. grin

god, those WERE the days.

moosemama Thu 21-Mar-13 19:33:42

Sounds like great fun Leonie!

I can only sing Irish folk meself and I'm scared of an audience - other than my long suffering kids. My old dad was forever trying to drag me up on stage in Ireland - I learned how to hide at just the right moment. grin

SATs meeting was a waste of time as predicted, didn't tell me anything I hadn't already read on line and involved being squashed into a classroomroom with two of my least favourite teachers. hmm

LeonieDelt Thu 21-Mar-13 19:50:42

sounds like joyous fun.

tonight, some anxiety, a lot of tiredness, and my eyes feel like they have grit in them. To be fair, they did last night too though. Can't wait to go to sleep.

moosemama Thu 21-Mar-13 19:58:38

blush There goes my typing again. Honestly I am hopeless today. blush

Get yerself off to bed woman.

Hoping you have a peaceful night. x

LeonieDelt Thu 21-Mar-13 19:59:31

once DD1 goes, then i can go - she has a stargate fix to get first, lmao.

thanks, same to both of you x

MerryCouthyMows Thu 21-Mar-13 20:23:36

blush Not sure who the Eagles are, but I also love Dido - am waiting for Tuesday to buy her new album. I might give the Eagles a listen on Youtube later.

MerryCouthyMows Thu 21-Mar-13 20:25:23

I could sing...but most people prefer me not to!

I have a singing voice that is somewhere between courting Tom cat and badly played violin...

MerryCouthyMows Thu 21-Mar-13 20:27:09

You know what? It hadn't occurred to me that I had stopped listening to music just when my seizures ramped up a notch about 3/4 months ago...

Odd. I hadn't put 2 & 2 together.

LeonieDelt Thu 21-Mar-13 20:35:22

The Eagles are a sort of country/rock band from the 70s. I had an 8-track with their greatest hits on when i was a kid - ouch, that ages me!

That said, their recent song How Long is a good one.

CouthySaysEatChoccyEggs Thu 21-Mar-13 23:08:32

Oh FFS. Why does the effing printer run out of ink when I have not one but TWO very formal letter to print off that HAVE to be done tonight? Bollocks.

I'm now going to have to handwrite them. My handwriting is shite. It looks like a caterpillar has walked through a puddle of ink and then moonwalked on the paper...

(A cross between shit handwriting, hypermobility, and arthritic pain in the fingers does NOT make for decent looking formal letters...)

Bollockypoobumcuntyheaded printer ink!

CouthySaysEatChoccyEggs Thu 21-Mar-13 23:10:48

Oh, forgot - Still me, just actually fired up the lappy as I have some urgent appeal type googling to do, and decided I'd put on an Easter costume. Says the person who was too lazy to NC out of their Christmas NC until almost the end of March...blush

LeonieDelt Fri 22-Mar-13 06:30:34

that's always the way.

laid down half nine but found sleep didn't come til later.
my eye pain was a migraine, lmao, that wasn't very painful.
I've been up to pee five times overnight - seems excessive to me. ?
my neck is a mess, so up goes the clonazepam to compensate for a few days.
ugh, I sort of triggered myself reading up on exactly what angle closure glaucoma is - I have borderline high eye pressure anyway - but tbh with losing wt I think it will have come down, I dunno. my vision is fine, I am fine.
this stuff does set off anxiety - that's annoying.

LeonieDelt Fri 22-Mar-13 09:23:08

eyes are dry this morning. i remember this from the last time i tried topamax, though i was really hoping it was my imagination...

LeonieDelt Fri 22-Mar-13 09:40:19

dry eye is in the BNF's list so i'm not panicking yet.

CouthySaysEatChoccyEggs Fri 22-Mar-13 10:28:28

Dry eyes is a separate side effect - I didn't even get dry eyes at all!!

LeonieDelt Fri 22-Mar-13 10:38:31

i'm weird. my mom's a ginger and reacts very strangely to meds, and the older i get, the stranger i get too grin

CouthySaysEatChoccyEggs Fri 22-Mar-13 11:08:55

How odd, Leonie! My Mother is ginger too (as is DS3), and I react strangely to meds.

LeonieDelt Fri 22-Mar-13 11:19:38

eyes are feeling better now, maybe just a temporary thing.

omg if there's a weird bad reaction, my MOM will have it. Big style.

cant wait to go back to bed, just want to hibernate this weekend, UGH. Fucking slush everywhere, it was snow but turned mostly to slush. got my feet wet taking DD1 to school, bleh.

did you listen to the eagles yet? its very country!

CouthySaysEatChoccyEggs Fri 22-Mar-13 11:24:25

No, I didn't get the chance! I fell asleep on the laptop at about 1-ish. Still getting the evidence together for the additional info for DS1's GS appeal.

Still tired, bad day for the pain, but have a ton of housework to do.

LeonieDelt Fri 22-Mar-13 11:25:37

How Long grin

I think they've been at it for like 45 years :D

CouthySaysEatChoccyEggs Fri 22-Mar-13 11:25:54

I hate snow now too. You can tell that you've grown up when you look out if the window and your first thought isn't "SNOWBALL FIGHT", but "Oh crap it's going to take twice as long to do the school run..."

CouthySaysEatChoccyEggs Fri 22-Mar-13 11:27:29

I quite like that...must investigate more soon.

LeonieDelt Fri 22-Mar-13 11:30:46
LeonieDelt Fri 22-Mar-13 11:31:47

oh yes - i'm officially grown up and aged. my first thought is "oh fuck, how am i gonna get a pushchair through that?!" lmao

LeonieDelt Fri 22-Mar-13 11:33:25

my parents were big Eagles fans in the 70s :D i grew up listening to them along with Crystal Gayle and Eddie Rabbitt and Neil Young and so on...

LeonieDelt Fri 22-Mar-13 11:40:26

Seven Bridges Road - love the harmonies in that one, omg. Goosebumpage.

CouthySaysEatChoccyEggs Fri 22-Mar-13 11:47:21

Oddly, I have a few Don Henley songs on my iPod.

CouthySaysEatChoccyEggs Fri 22-Mar-13 11:48:18

My mother was a Punk / Heavy Metal sort of person. I grew up listening to the Sex Pistols and Iron Maiden...

LeonieDelt Fri 22-Mar-13 11:58:01

I think Glenn Frey had a solo career round the same time Henley did. (also an Eagle).

One of my favourite Eagles' lines: You bitch about the present, but blame it on the past / I'd like to find your inner child and kick it's little ass!" - Get Over it!

BeeMom Fri 22-Mar-13 13:55:38

Well, all this makes my affinity for show tunes seem kind of lame grin

I am sorry I have not been active here - I came in, chatted you all up, then disappeared. If you follow me on Facebook, you'll know why I have been all over the place, but I may well spend a while here over the next few days - trying to keep myself awake, if nothing else.

So, I'm back - if you'll have me.

moosemama Fri 22-Mar-13 13:58:36

Oh BeeMom I am so glad you posted I have been thinking about you and Bee such a lot.

How is she doing?

(Ps I love a good show tune too. Love Calamity Jane, My Fair Lady, Hello Dolly etc and many more besides. grin Dh says my music taste refuses to be pigeon-holed - well I suppose that makes sense really as I am always the square peg no matter where I wander in life! grin)

LeonieDelt Fri 22-Mar-13 14:18:03

Pink Floyd's Echoes keeping me sane this afternoon. I feel ever so slightly drunk.

Beemom, hang in there. I am watching fb, even if I don't post.

moose: hope you're having an OK day today too. more groups to add to my list - Neil young, simon and Garfunkel, Clapton, Chicago, Travis, dire straits, elo, genesis, Phil Collins, foo fighters, foreigner, nirvana, bowie, the list goes on...

moosemama Fri 22-Mar-13 14:48:33

I typed a music related post earlier but MN ate it - obviously they have no taste in music! grin

Teen years involved, Crystal Gayle, Carole King, Elkie Brooks, Queen, Bowie, lots of Irish folk and I was a huge Prince fan at the time, but am pretty meh about him these days. Really didn't like any of his later stuff, but was into the really early stuff. Dh introduced me to Thin Lizzy, ACDC and various others of a similar ilk.

Then when dh was at uni, I got into Back the Planet, Dreadzone, Transglobal Underground, Co-creators, Citizen Fish, Senser, RDF, Jello Biafra, Silverfish, Credit to the Nation, The Levellers, The Selecter, The Specials, The Men They Couldn't Hang, ooo and so many more ...

Have consistently been a big Elvis fan thanks to being indoctrinated at a very young age by both parents and Christy Moore also holds a permanent and very special place in my heart - I have perpetuated this by similarly indoctrinating my own children! grin

Still listen to all the stuff I used to, but current listening, mainly due to it being all I have managed to get onto my mp3 player is Imelda May, Adam Ant, The Levellers, All American Rejects, Green Day.

autumnsmum Fri 22-Mar-13 15:33:12

Sorry to jump on as I have no epilepsy related issues but I thought no one else in the world liked or had heard of back to the planet or dread zone.A couple of years back when we just had two dcs went to see Neil Young in Hyde Park he was amazing.

moosemama Fri 22-Mar-13 16:31:50

Ah, you see Autumnsmum I am just an ageing festivalling hippie at heart! grin

Saw Back to the Planet again last year and the year before, fantastic blast from the past and still every bit as good live as they were way back when. smile

LeonieDelt Fri 22-Mar-13 20:14:53

never heard of em blush

LeonieDelt Fri 22-Mar-13 20:24:44

bit of a shitty headache all day today (lots of neck pain, dunno why) and one seizure this morning but i upped my clonazepam (consultant told me to double it, i havent yet) by 0.25mg and i feel a lot less anxious.

I'm hoping i'll get a decent night's sleep and it'll all fall into place.

Talked to my mom, numerous members of my family have taken topamax an no one's died or gone blind or anything awful so i feel quite a bit better about it.

i listened to music on shuffle all afternoon on my phone. What a change that made!

Chocolatemoosemama Fri 22-Mar-13 22:30:07

I think we can let you off Leonie, they are a small alternative UK band that mostly played festivals in the late 80's/early 90's.

Glad your mum was able to reassure you re topomax.

I am feeling horrible tonight. Third night in a row of an overload of tingles, buzzes, cog fog and head pressure. No distinct episodes that I can recall, but I took cocodamol last night in an attempt to sleep - and because my bad foot was really bad after 5 school runs in one day. Slept the first half of the night, then restless until time to get up - but my left eyelid wouldn't open again when I woke up, so wondering if I slept through something. Also woke myself up not long after getting to sleep - I think - by suddenly biting down on my tongue really hard. Never had that before and I guess it could have just been the result of a dream - it didn't feel seizurey - if that makes any sense at all. confused

Anyway, dh and I are watching season 3 of Farscape on dvd and he's going to get snippy if I don't switch the laptop off soon, so I will bid you goodnight.

Hope you manage to get some good quality sleep. x

CouthySaysEatChoccyEggs Fri 22-Mar-13 22:35:46

Had an answerphone message from a female SW from 'the assessment team' at 'Children's Social Care'.

Am now trying to tell myself that the Male SW that came out because DS1's dad said I was 'making things up' about all my DC's health has actually managed to get the Children with Disabilities team involved.

It would be a touch if he has - I've been trying to for 14 years, and kept getting shunted back to the Child Protection team simply because I'd had prior involvement with them.

I'm trying not to think it has anything to do with bastard GP or 'new' HV. It's best not to, as I have enough stress on my plate already, and I'll find out soon enough on Monday, as I'll have to return the call.

So for now, I'm going to blindly believe that a miracle has happened, and the CWD team is going to finally do an assessment to see what help I need.

I intend to have a non-stressful weekend. So NER to silly phone calls on a Friday afternoon!

CouthySaysEatChoccyEggs Fri 22-Mar-13 22:59:25

I hope you feel better tonight / in the morning, Moose.

And I'm glad you feel a bit more reassured, Leonie.

I'm going to play ostrich tonight, and hopefully get a bit more sleep as I don't have to get up at sparrows fart of dawn to get DC's to school.

I'm definitely feeling it's time for the Easter Hols IYSWIM.

Still, a weekend, 4 more school mornings, and then I might start feeling a little better.

LeonieDelt Sat 23-Mar-13 09:04:06

I'm still trying to make up my mind about topamax.

One the one hand, it seems to be working brilliantly for my seizures, i've only had one - on starting dose. That's a small miracle.

Lots of wobbly episodes but i keep telling myself i need to get used to it.

But tbh, the pain in the back of my head/neck seems to have gotten worse - and i can't quite track down what changed. I have an almost constant pain in my eyebrow, which is referred from the back of my neck, and usually goes hand in hand with a migraine.

Maybe, along with the increased benzo, i just need to give it time. It is only day 3 after all. Its puzzling me though.

I wish the lamictal had worked - it did everything i needed, straight out of the can. it didnt wind me up, it didnt increase my anxiety, it did a wonder on my constant head pain and it seemed to work somewhat on the seizures too! DAMNIT.

LeonieDelt Sat 23-Mar-13 09:19:23

i am really puzzled as to why the pain in my head has gotten worse, and nothing seems to help - the increased benzos not helping, painkillers not helping...

CouthySaysEatChoccyEggs Sat 23-Mar-13 09:29:10

Erm, it could be that your brain is trying to have a seizure, but the meds are stopping it. But at a starting dose, it may not keep it at bay permanently.

I think this sounds very like a seizure that is being controlled by the med, but only just IYSWIM.

CouthySaysEatChoccyEggs Sat 23-Mar-13 09:31:53

Oh, and can the white stuff falling from the sky fuck the fuck off, and when it gets there, fuck off some more?

My 9yo DS2 has already had two meltdowns because "It's Spring and it mustn't snow in Spring. Now the trees won't get their leaves back and the flowers won't grow" <<Meltdown, Meltdown>>

Of course, the routine of the seasons isn't bring followed and he can't get his head around that. It should be warming up, as far as he is concerned, not snowing.

Tbh, I bloody agree!!

LeonieDelt Sat 23-Mar-13 09:40:48

That's a very good way of looking at it.

Whatever it is, the pain in my head/neck is influenced by movement, and food. Which suggests it may be mechanical / related to all the structural damage which everyone keeps telling me is "normal wear and tear" and is usually covered up by cycles of chemical self-reinforcing pain iyswim, and food, which is serotonin/blood sugar.

WRT snow, FUCK OFF SNOW. We're snowed in now, and its bloody annoying. Okay, chance to get the bed linen done and lots of cleaning sorted and the vacuuming done so my friend can come over and not blow up from cat hair, but ffs. UGH.

LeonieDelt Sat 23-Mar-13 12:00:30

of course the increased head pain and increased benzos, all i want to do is sleep, and that isnt functioning any better than i was before either.

I dont know how much more time to give this. sad

LeonieDelt Sat 23-Mar-13 13:05:12

and having many, many woozy moments.

this stuff is weird. so far its not a happy weird either :/ first day was probably placebo effect, though it is definitely energising / anxiety inducing...

CouthySaysEatChoccyEggs Sat 23-Mar-13 13:29:34

I hate to be the bearer of bad news, but unless you have an allergic reaction to an AED, you really need to give it at least 6 weeks so that you are giving it a chance for the initial side effects to wear off do that you can see exactly how it really works.

Everything I've tried, I've given at least 12 weeks, except for the Epilim that I was really allergic to. Even the Tegretol, it was around 4/5 months before it started to affect my liver and I had to stop.

I ended up being on Topamax for about 7 weeks in total.

Please give it a few weeks to kick in properly, and for initial side effects to fade.

Also, the side effects you have now, will probably return for a couple of weeks each time your dose rises.

That's NORMAL.

Unfortunately, epilepsy treatment is more of a long-term fix than an overnight thing.

Same reason that when you came off the Lamotrigine, the reaction didn't subside for a few days because of the half life - you have to give the Topamax to really build up to a maintenance level in your system.

It's shit when you start a new med or raise the dose.

(((Hugs)))

Stick with it for a while. C

LeonieDelt Sat 23-Mar-13 13:31:24

my. fucking. head. hurts

that's worse than the seizures, i promise you.

LeonieDelt Sat 23-Mar-13 13:32:02

i've taken some ibuprofen, (and some rennies to sotp the reflux it causes) and i'm hoping it will stop the pain, cos co-codamol didnt touch it/

LeonieDelt Sat 23-Mar-13 13:34:45

i know, i gotta give it time. but i also got to be able to function, and i swear, i can function better having seizures every day than with this head pain. for serious.

god willing by the end of the weekend it'll get a bit better - i only have 4 days to do next week, and then 2 kids to keep busy for all of easter hols...

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:13:37

Be easy on yourself. Take more sleep / rest. You NEED to. Starting a new AED DOES take it out of you, you WON'T function at your usual capabilities for a couple of weeks. That's a part of it you just have to accept.

You need to arrange your life around that, make allowances on yourself for it.

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:14:51

See my posts from a couple of weeks ago when my dose was massively upped. I was struggling to function at my normal ability.

I should take my own fucking advice, and make allowances for myself when my dose changes...

LeonieDelt Sat 23-Mar-13 14:16:02

right, ibuprofen has dented it. RELIEF.

to touch, though, my eyebrow, my forehead, and my cheek under my left eye all hurt, so i'm wondering if that goes with all the green gunk i have going on and its in fact not topamax related at all but snot instead.

timing. fucking timing.

i'm too tired to care so i'm just hoping after another marathon sleep it'll get better for tomorrow.

thanks for listening and helping, couthy. i know i gotta give it time. i also know i can't be making my life worse - i life with what i call a bottom baseline of shit, and in my head, that's as bad as it can get. i can't cope with making it worse unless it is a very short term temporary sort of worse, kwim? i certainly can't function like this long term!! this doped up from the benzos/topa combo, or in this much head pain! none of this is okay, none of this will do when i'm alone with the kids...

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:16:23

I'm just about back to 'normal' brain wise from that dose rise now.

If only my fanjo was back to normal. The pain is now pissing me off, and I'm still losing fresh blood - mostly because I'm NOT able to making allowances for the fact that half my cervix has been lasered off...blush

LeonieDelt Sat 23-Mar-13 14:19:16

correlation =/= causation, i keep telling myself. i had really dry eyes the night BEFORE i started the topa - and they were a bit crunchy too - but the brain says zomgGLAUCOMApanic. fucking brain.

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:19:22

Make life easier on yourself - ping meals, oven shit, simple stuff. Don't do ANYTHING that can't wait. And really THINK about what can't wait a week or two.

Make sure your DH steps up and helps as much as possible too (not easy, I know, he seems very like my Ex...)

Don't make plans for a massive day out at the zoo or something, nothing that involves putting too much extra physical strain on yourself.

If it can wait till tomorrow, leave it till tomorrow!

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:20:16

Breathe. Remember you have had other family members take Topamax without the eye problems. You will be fine!

LeonieDelt Sat 23-Mar-13 14:22:03

bless you couthy. i'm not sure how i'd be walking round comfortably with half my hooha lasered off :/

hell, i do well to function with my period and my mooncup feeling like a bowel movement every time i use it cos of my prolapses, yikes. (tampons are worse, and drying, and AWFUL and i fucking hate them, and i hate pads too, they're wet and awful)

i cant imagine having to carry on the way you have, tbh. you are a true soldier, an inspiration.

LeonieDelt Sat 23-Mar-13 14:24:03

lmao, he is so like your Ex. he's disappeared in town to manhandle a new mobile he won't be getting for some months to come.

I told him i was hibernating this weekend. the snow is so offputting :/

The kids are each plugged into something electronic, and i'm washing bedclothes. I love the cats but they dont half make a mess in the house, sigh.

LeonieDelt Sat 23-Mar-13 14:28:38

i decided to fully read up on the angle closure glaucoma to go on and educate -scare the shit out of myself, and to know full well what to look for - and not only is it a fully injected red conjunctiva, usually one sided, with a pupil that's hazy, but it usually happens to FARsighted people cos of the shape of their eyeball. I'm very NEARsighted.

My dad, who has had glaucoma (!!!!) and laser surgery for it (!!!) (iridotomy) is very, very FARsighted - and has coke bottle lenses that make his eyes look gigantic.

None of my family who've taken Topa and been fine are farsighted - more likely nearsighted / dont wear glasses at all.

That's hugely reassuring.

LeonieDelt Sat 23-Mar-13 14:46:01

DD2 is printing My Little Pony game still printouts all by herself. Oh the things that bring me joy grin

ariane5 Sat 23-Mar-13 14:54:13

Hello

Had a thread on aibu but have heard there is more support here. I have a sister with epilepsy and 4 disabled dcs, dd1 (11) has EDS hypermobility type, PoTS (causes faints/dizziness) and pectus excavatum (ribcage prob), ds1 (6) has EDS, is on medication for severe migraines and has multiple severe food allergies, dd2(3) has EDS, type 1 diabetes and food allergies and ds2 (11mths) has EDS and pectus excavatum.

Dh+I both have eds but dh much more affected by it than me.

LeonieDelt Sat 23-Mar-13 14:57:14

i guess reality's hitting home a little more today. Epilepsy is no party. I was all celebratory etc because of the relief of finally knowing what was going on and being taken seriously at long last (and of being right!!) but its not funny, its not fun and basically it blows chunks.

this bites. I dare ANYONE to come walk a mile in my, or couthy, or moose's shoes and walk away unscathed because basically, this sucks.

:/ think i'll go figure out how to make my dongle work with my tablet, before my brain gives up on me altogether. And listen to some music, cos i'm enjoying that lately (though i've forgotten it this morning due to pain)

LeonieDelt Sat 23-Mar-13 14:57:32

Ariane5, Couthy's your woman for EDS.

CouthySaysEatChoccyEggs Sat 23-Mar-13 15:45:49

Yep, Epilepsy's a bitch. EDS / Hypermobility Syndrome blows chunks too!

Hi Ariane. We're a right bunch on this thread.

To clarify, more than on the other thread, my DD has Hypermobility syndrome + loads of other crap.

My DS1 I'm attempting to get assessed for Aspergers (though any dx will just be ASD now as the classification has changed).

My DS2 has severe Hypermobility syndrome, is being assessed by Prof G in May for EDS, possibly vascular type. He has kyphosis and severe constant pain because of his Hypermobility, didn't take his first steps till 3.7 years old, suffers daily subluxes, can hardly hold a pencil as his thumbs sublux blah blah, you know the score! He's also got chronic brittle asthma and has 'Autistic traits'.

DS3 is 2yo, and also has Hypermobility syndrome, though not as severely as DS2. He's got multiple life threatening allergies too. And is being assessed for Autism in May...

And then there's my own broken body - epilepsy, and the arthritis as a complication of Hypermobility syndrome! and probably POTS too, but undxd as yet.

CouthySaysEatChoccyEggs Sat 23-Mar-13 15:46:44

But hey, we're all here, trying to get each other from one crisis to the next. grin

LeonieDelt Sat 23-Mar-13 15:50:05

Ariane:

DD1 is 9, has HFA and hypermobility (noted by paed).

DD2 is 4 1/2 and has HF ASD and hypermobility (noted by paed).

I am 36 and have epilepsy, underactive thyroid, hypermobility (undiagnosed but noted by the kids' paed) and fit nicely on the spectrum myself.

and DH is 40 and has an official NHS dx of HFA.

LeonieDelt Sat 23-Mar-13 15:50:26

and without couthy and moose, i'd have already jumped in front of a bus.

LeonieDelt Sat 23-Mar-13 20:11:35

i'm still trying to decide what to make of this.

my headache comes and goes. it's somewhat milder than yesterday now that the ibu has worn off. it moves. its up around my eye, or in the middle of my forehead, or around the back of my neck.

it scares me because its around my eye. my eyes are photosensitive tonight, and i'm not so good with noises either. no, no haloes, no injection of the sclerae, no signs of The glaucoma, i've checked over and over sigh.

i am overtired and overemotional and nothing's making sense, and no, i cant cope with my benzo jacked up (almost) as far as the consultant said to do, i can't deal with it that high, it makes me too weepy, that's why i lowered it last year to begin with, its too nasty, to sleepy-inducing, sigh. Maybe i should have him change it to frisium when i see him in June.

Maybe tomorrow morning i'll feel differently - but unless i'm in less pain, i doubt it. i'm in enough pain in my every day ordinary life, i do NOT need a med making it worse. I will live the rest of my life having seizures every day if it means i'm able to forego this kind of pain. It would suck to have to make that kind of choice, but i will. i cant live like this either sad

LeonieDelt Sat 23-Mar-13 20:39:15

maybe i'd do better taking it at night and sleeping through all this? assuming i COULD sleep through it?

maybe i'll try moving tomorrow's dose to the nighttime? i dont know, i take enough stuff at night, i'm afraid i'll become another anna nicole smith, dead of polypharmacy sad

CouthySaysEatChoccyEggs Sat 23-Mar-13 20:51:05

I would take it literally before bed if you tried that - because if the stimulant effects of Topamax. Can't guarantee that you wouldn't wake up after a few hours though...

Plus, I wouldn't go right from taking it first thing in the morning to taking it before bed - you'd have to adjust that by a few hours each day, or you will be making the side effects last longer - as you'd be 36 hours without a pill.

CouthySaysEatChoccyEggs Sat 23-Mar-13 20:51:50

I rattle when I walk, Leonie! wink

LeonieDelt Sat 23-Mar-13 20:55:28

lemme see how i feel tomorrow morning. its interesting that the headache wore off earlier this evening than last evening.

And only one foot tingles. lol.

this is my 4th pill on repeat rx, but the NHS doesnt do my thyroid pills, i get them privately (at outrageous cost). So that's 5 prescriptions. Bleh.

LeonieDelt Sun 24-Mar-13 07:12:41

after lying awake most of the night despite being desperately tired (and realising how I got my headache) panicking half the night, heart rate over 120, and my heart rate is usually just between 60 and 70 cos of my beta blocker, I began to realise the stupid fears are the topiramate, I remember that from last time too... I cried my eyes out yesterday not knowing what to do.

well I'm not taking any today, and we'll see where I get tomorrow.

I'm telling you I don't need any help panicking, I don't need my sleep so fucked up that the resulting headache cripples me, and I don't need to be so loaded on benzos that I'm crying at the drop of a hat and still panicking right through it...

nope, that ain't the pill for me. last time I think I made it a week, this time 3 days is all I can do.

and I'm a little tired of it wringing every drop of water out of me, too. bleh.

LeonieDelt Sun 24-Mar-13 08:19:52

maybe if i wait til after easter and try it again?

i swear to god my "normal" is better than that. seriously.

or, should i call the consultant's secretary again and tell her topa is a no-go?

LeonieDelt Sun 24-Mar-13 08:44:28

the snow is contributing to my stress. i can tell you that. if something happened to me, i could not get a lift to a hospital right now, we're fucking snowed in. again. in the middle of birmingham.

LeonieDelt Sun 24-Mar-13 09:40:32

aaaand no headache today, despite a shitty night's sleep. left eye still feels weird, dont know what to make if it. looks okay, as far as i can tell. getting out in this damn snow will prove difficult. both eyes are dry and i'm very tired and overwrought.

i DONT like being a human guinea pig sad

CouthySaysEatChoccyEggs Sun 24-Mar-13 12:07:05

Aw, that's crap. Tbh, I remember the lack of sleep too. To the point where I was going slightly, erm, odd. And the headache. Thing is, because I was so desperate at the time to keep the seizure control Topamax offered me - I was happy to put up with that!!

I was soooo upset when they eye thing happened because that was when I HAD to stop taking it. And I've found nothing since that has controlled my seizures as well as Topamax.

Which is a pain in the arse!

BeeMom Sun 24-Mar-13 12:26:14

The more you talk about this drug, the more I find myself wondering what we have put Bee through over the last (almost) 8 years. She has been on (and essentially failed) 11 epilepsy medications over the years. Her first anti-convulsant was started when she was only 3 weeks old.

Her most recent new drug (Lacosamide), like the lamotrigine for you, had a noticeable effect on her seizures. However, it also reduced her to essentially catatonic. She was so ataxic that she fell and split her chin open (and will never lose the scar from that), she was literally unconscious/unresponsive for 4-5 hours after every dose (and that was at only half of her goal dose). She lost the ability to walk independently - but her seizures decreased to 20 or so a day from the 100+ she currently has.

She is currently on 400 mg a day of lamotrigine, 1800 mg a day of gabapentin, and 10 mg of clobazam, and still seizing as much as 10 times an hour (verified on EEG). Poor kid is only 7 sad

As you have so eloquently said... epilepsy sucks.

CouthySaysEatChoccyEggs Sun 24-Mar-13 14:06:43

Aw, BeeMom. I really feel for Bee! I didn't realise her epilepsy was so severe. Puts mine in the shade.

CouthySaysEatChoccyEggs Sun 24-Mar-13 14:07:23

Epilepsy is the biggest bastard ever.

BeeMom Sun 24-Mar-13 14:17:02

Yes - when she was 5, we were told that it had progressed to the point that she officially had "epileptic encephalopathy". She has had 2 strokes (1 as a newborn, the second when she was 6), but her seizures are mostly genenralised - even the small portion that are partial onset do not come from the damaged area of her brain. While sleeping, her brain is in almost constant seizure activity.

On paper, medically Bee is a train wreck... so we don't pay much attention to that. Instead, we try to concentrate on the amazing and exceptional little girl she is, and deal with issues as they arise, instead of looking for them. It has caused significant conflict with one of her consultants (particularly when we refused to travel thousands of miles to see someone for more diagnostic testing) but DH and I can be VERY stubborn, and the Chief of Paeds is on our side.

We are travelling again on Tuesday for more surgery for her Wednesday... while I absolutely agree it is necessary, I am NOT looking forward to it. I hate Hate HATE HATE having to be 200 miles from home, just the 2 of us, to accomplish this, but it must be done.

Sigh Why can't we just deal with simple issues like runny noses and scuffed knees?

CouthySaysEatChoccyEggs Sun 24-Mar-13 14:54:21

Is she well enough from the infection she had to have surgery?

LeonieDelt Sun 24-Mar-13 16:53:00

Beemom: i toughed out / didnt notice a lot of the sidefx age 23 than i do now at 36 almost 37. For realsies. I was a lot more accepting? I didnt notice things? I dunno, but the meds didnt hit me so hard back then.

As an aside, i went to get my ee checked out because its been hurting for 4 days in a row. Dx "aggravated migraine" - eye pressures 14 right and 18 left, which is well within 12-21 normal limits. But the specialist i saw today at the eye A&E said she, too, would have stopped a med given for migraines (as well as sz) that made them paradoxically WORSE?!

Sigh. So, now what? I feel better as the day goes on. wtf?

LeonieDelt Sun 24-Mar-13 16:55:05

thing is, i;ve had more seizures on topa than on lamictal...

LeonieDelt Sun 24-Mar-13 17:34:10

and now i dont know what to do next.

CouthySaysEatChoccyEggs Sun 24-Mar-13 19:09:06

Try another med...it's all you can do. Like I said, it took them about 4/5 years to hit on Gabapentin for me. And there's still lots I haven't tried yet...

LeonieDelt Sun 24-Mar-13 19:22:45

won't they get mad at me? you know, fed up of me?

I could not take that head and eye pain any longer, I'm telling you. suicide headache.

CouthySaysEatChoccyEggs Sun 24-Mar-13 19:54:56

Nah, explain what the eye bloke said.

LeonieDelt Sun 24-Mar-13 20:00:50

same hospital - they should be able to pull the records!

LeonieDelt Sun 24-Mar-13 20:17:06

I need a rash-less lamictal - that's what i really need. i am so embarrassed about all this. i'm very tired, very emotionally tired.

that topamax was just too agitating, my fucking head was hurting so much and it wasnt worse than any headache i've ever had, but it kept MOVING when i moved, it for worse when i bent over? and when i was sweeping the floor, it intensified and it didnt get better when i took the only painkillers i have. and more, it was so emotional, i was beside myself, unable to cope with it - very upset by it, very thrown. and then there's the pain in/around my eye, which is usual with a migraine, but for 3 1/2 nearly 4 days in a row? usually when i get these things, i get a break afterwards, you know? And the neck spasms at night were worse, it was like my pain was amplified instead of dampened like it was on lamictal...

and the goddamn benzos just made the outrageous tiredness in the daytime worse, and the inability to sleep harder to cope with, it was like being drugged all the time sad

i just couldnt go on with it like that. sad maybe i should have tried half the starter dose? but since they gave me sprinkles capsules, i cant even split those in half :/

i'm telling you, i feel better and better as time goes on and i get away from it. and i can count 3 seizures in less than 12 hours yesterday/this morning, so it wasn't doing its job at 25mg anyway :/

massive fucksticks. seriously. hell and damnation.

i've missed moose this weekend. her sage calmness usually keeps me sane. I hope she's had an awesome weekend.

CouthySaysEatChoccyEggs Sun 24-Mar-13 21:29:43

Maybe it's the combo with the benzo's? Not sure. I'm sure you will find something that works without the shitty side effects soon. It does often take a few goes with different meds to find the right one for YOU.

You will feel better now you've stopped taking it, and you can discuss which you think would be best to try next.

Might be worth doing some of your awesome research, so that if the Neuro makes a couple of suggestions, you can yes or no them based on what possible side effects there are known to be common and whether they can be taken with benzo's or not...

LeonieDelt Sun 24-Mar-13 21:43:21

i dont know. He TOLD me to up the benzo but i just cant do that, its too tiresome. But with the topa, i HAD to do it or i'd have been climbing the walls the first day after not sleeping... the only reason i'm not sectioned at this point is the benzo, the topa was so agitating :/

fuck. soooooooo tired. hope i sleep. i fell asleep at the eye hospital, on the train on the way home and in the bath this evening. Oops.

Hopefully i'll sleep well tonight. i've earned it. guinea piggy me.

speaking of research, am leaning towards favouring trileptal tbh. unless it'll cross react. or keppra. but the rage scares me.

i need a rash-free lamictal and the closest i'm gonna get to lamictal without being lamictal is one of the carbazepines/oxcarbazepine - they do almost the same thing in almost the same way, though carb/ox are more specific than lamotrigine, which is antidepressant too (DAMN SHAME THIS DIDNT WORK, SIGH, COS IT WAS WORKIN)...

i need to find that table again. it was an awesome table, with all the receptors / agonists / channels / whatever that each of the AEDs works on compared to each other... i think that's the key. Gotta find the link again.

LeonieDelt Sun 24-Mar-13 22:35:47

I meant to ask about your weekend, couthy. how did it go? were you completely snowed in too? pictures all over the news from all over the UK, pretty much every where but Brighton beach was snowed in.

LeonieDelt Sun 24-Mar-13 22:36:08

moose, I hope you had a good one too .x

BeeMom Sun 24-Mar-13 22:49:45

With regard to Keppra... if you add a dose of 100 mg of Vitamon B6 with every dose of Keppra, it all but eliminates the Kepprage. We could tell within an hour of giving Bee her Keppra dose if someone forgot her B6, as her behaviour was over the top awful. Get the B6 into her, and she was the same silly girl we are accustomed to.

CouthySaysEatChoccyEggs Sun 24-Mar-13 23:39:38

Pffff...snowed in?! We had constant snow, but I think the ground's radioactive here, it's barely settled - about 1/2 an inch if that in the ground. Had a lazy day Saturday, and did my housework today.

Quiet weekend this weekend - DS2 AND DS3 were at their dad's place this weekend (he rarely takes DS3 as well). So I got a good night's sleep and a lay in last night, and a weekend with only 2 DC's.

OK, those 2 DC's seemed hell bent on pissing each other off, and melting down at each other (and the fact that the other has the temerity to exist and breathe the same air as them...), but it was a quieter weekend nonetheless!

It's coming to something when preventing DD from stabbing DS1's leg with a fork is a 'quiet' weekend...(!)

BeeMom Mon 25-Mar-13 00:06:06

I am not sure what it is about the weather this year, but it has been positively nuts. This time last year, we were in summer clothes and playing in the garden blowing bubbles... this year, it seems I am snapping icicles off of delicate body parts instead.

BeeMom Mon 25-Mar-13 00:14:09

Oh, and Couthy, the official word from the Infectious Disease consultant who saw Bee when she first presented was "she will have a complete course of IV antibiotics, there is no reason to delay it. If we tell them, however, they will postpone again, so as long as her culture is negative, I say have it done".

She was admitted at our "home" hospital for the infection, but the surgeries are at the "children's" hospital it is a floor of a wing, hardly a hospital There is no love lost between the centres, but because of the amount of vascular surgery Bee has had, there is no one at our home centre comfortable to do that portion of it.

She is not "well" yet, but she is "well enough", if you get my meaning.

CouthySaysEatChoccyEggs Mon 25-Mar-13 01:57:26

Yy, I know what you mean. I hope it all goes well for Bee.

CouthySaysEatChoccyEggs Mon 25-Mar-13 02:10:31

BAD LANGUAGE ALERT - MORE THAN USUAL!!

I'm still sitting up, trying to drain my bastard washing machine again because BOTH DS1's pairs of school trousers are in there, sodden.

Bastard washing machine is only about 4/5 weeks old. Fucker. It was brand new, not even secondhand.

It stopped mid cycle, came up with an error code.

I discovered idiot Ex had stuffed the manual God knows where instead of on top of the machine, where my manuals have lived for 15 arsing years (that he has been with me on and off for the majority of...). "I only wanted to read it" "I forgot where you keep it, I shoved in a random pile of paperwork" (that might well be in the Jeffing loft now...)

Soooo, I Google the error code - blocked pipe it says. So, I unhook the outlet pipe from my down pipe under the sink and put sink & drain unblocker down my down pipe. Try machine again.

Nope, still stops halfway through a pump out cycle and shows the error code.

So, idiot ex that lost the manual drops off DS2 & DS3, and I get him to empty the clothes out of the machine. There is, apparently, no way to open the bit at the front that you would usually use to drain a machine.

So, hoping for the best, we stick it on a pump out cycle whilst empty. It works.

So, we stick the wettest stuff - my jeans, DS1's jeans and DS3's BLOODY COAT on a spin cycle. THAT works.

Yay! Think we.

So I stick the rest of the load back in to spin. And it comes up with the fucking error code again!!

angryangryangryangryangryangryangryangryangryangryangry

It's now full of water again. And DS1's school trousers. So I try a pump cycle. And it comes up with the error code. I try again. Error code again.

Then I figure that the last load was lighter, so I take two really heavy things out. All that remain in there are 101 socks, a thin vest top, and two pairs of BLOODY SCHOOL TROUSERS. And still the bastard machine won't even pump out the fucking water.

All I want is for the machine to spin the socks, vest top and trousers so that I can tumble dry them FFS.

I NEED the vest top, all my other tops are white AND I CAN'T WASH THE BASTARD WHITE WASH WHEN THIS LOAD WON'T SPIN.

AAAAAAAARRRRGGGHHHHHHangryangryangryangryangryangryangryangryangryangry

The whole point of buying a brand new washing machine was so that the cunting thing worked!

<<Slaps wrist for amount of bad language in this post>>

CouthySaysEatChoccyEggs Mon 25-Mar-13 02:14:01

Excuses SF with the fact that 4DC's, one a toddler with Hypermobility and possible probable dyspraxia, and two others with Hypermobility and dyspraxia causing more food to end up on their fronts than in their mouths, a washing machine is essential.

Not even mentioning DS2's soiling...

<<Begs forgiveness for shouty, ranty, sweary post>>

giraffesCantDateDucks Mon 25-Mar-13 02:17:09

leonie You said you had snot. How bad? The bad snot, pain around eyes, worse when bend forward all very sinus infection like.

Could have had sinus infection at same time that made the headaches even worse?

LeonieDelt Mon 25-Mar-13 07:17:15

possible, though i'm not a very sinus infectiony person - when i get snot, i get some snot in my nose but usually it goes straight past my missing tonsils, and down to my voice box, and makes a lot of pus.

i slept better. with less clonazepam (back to my .5mg). my neck didnt spasm and cause agony from 4-5am onwards. i didnt struggle to lay down. I was able to lay down and sleep. I dont remember waking up at all - i know i did, cos my propranolol's gone so i swallowed it, but i dont remember when.

That stuff seemed to amplify pain - why? Its supposed to make pain BETTER.

And omg out washing machine went batshit the other day and washed one load about ten times? It was on when i left - and it was STILL on, on the same load, when i got back 8 hrs later. I have no idea what it did in that time but hte clothes came out smelling of nothing, as if the soap, everything, had been washed away so many times there was nothing left but water.

Sorry you had trouble with the washing machine couthy. Sometimes they seem to go berserk!

Not looking forward to doing the school run with a pushchair and several inches of snow on the ground, and an unploughed cul de sac and paths sad

ariane5 Mon 25-Mar-13 08:48:44

Hello, have been reading with interest about keppra and vit b6- dsis takes keppra maybe that is causing some of her problems? I will speak to dm about it as dsis away and never likes to discuss things anyway as gets upset.

We had a busy weekend, dd2 was not brilliant had to watch her/check sugars all the time and ds2 poorly but I feel better now that things are out in the open. Will be back later as hoping to get gp appt.

LeonieDelt Mon 25-Mar-13 09:16:13

since the GP issued the topa rx, do i tell the GPs i didnt get on with it, or phone the neuro's sec?

LeonieDelt Mon 25-Mar-13 09:59:30

ok, told neuro's sec. they'll contact me. so, i'm washing out, and waiting to see what happens next.

LeonieDelt Mon 25-Mar-13 10:10:38

i feel like i am a house of cards. A very delicate balance. you can't just "bung some pills at me" and see what happens - upset one thing in the balance and the whole thing comes crashing down.

The secretary sounded very... annoyed with me. She took my number so maybe they'll phone me this time instead of dragging me across the city to another appointment, which will save me £6.30 in bus and train fare (which is a good thing!) and save me from having to arrange a babysitter...

i do hope they're not mad at me / annoyed with me. its worrying. i dont want to be seen as difficult, but i have a very difficult life which i cannot spend crawling up walls with pain or worry - i'm at my baseline.

Why oh WHY did the lamictal have to blow up like that?? Damnit all to hell, it was working! I had no head pain for 9 days! It was a miracle. sad

i could cry this morning. Sorry for the pity party. I just feel like they're gonna get annoyed with me and quit and i'll never get a solution i can live with...

LeonieDelt Mon 25-Mar-13 11:37:47

the new ep consultant phoned me! he said if i dont like the topiramate, then lets try something else. i said i need a lamictal without the reaction.

he said lets try zonisamide.

he'll write to the GP, and then they'll issue the script.

LeonieDelt Mon 25-Mar-13 13:13:03

half life of 60 hours? omg. Jesus christ

BeeMom Mon 25-Mar-13 13:21:56

Tell the annoyed secretary to sod off - it is nice that the consultant seemed willing to work with you. When speaking to Bee's neuro, we discussed side effects... as she says - you can not have a drug that affects brain waves without noticing it. Some times, the effects are minimal, and very tolerable, occasionally, they are seemingly absent, because the brain wave effect is seen before the side effects, and you never get to "that dose". Occasionally, however, you have a reaction like Bee did... and whether the drug is effective or not, it is not effective - you have to be able to live with the side effects to live with the drug.

A lot of it has to do with metabolism. When Bee has an anaesthetic, she requires a MASSIVE dose - she responds quickly, but just burns through it - and after a longer procedure (she is expected to be under the anaesthetic this week for about 3 1/2 hours) she has gone through what an average sized adult requires. Because she burns it so quickly, the drug blood level skyrockets - and with the Lacosamide, at least, what they think happened is that even at a partial dose, her body was metabolising it so fast that she was essentially overdosing with each dose.

As odd as this may seem, with the reaction she had, I am still considering talking with the neuro after this set of procedures to see if there is any way we can try it one more time - the promise of fewer seizures leads me to be willing to try (cautiously) one more time... with an even slower introduction.

Does that make any sense?

LeonieDelt Mon 25-Mar-13 16:05:10

Half life of 60 hours. It takes 13 days to wash out. I am extremely concerned about that, and the fact that the side effect profile is almost identical to Topiramate's.

Why would i hate topiramate, and then want to move to something like this?

Wouldnt it make more sense to try something with a shorter half life in case it goes tits up, i can quit it and not have to suffer for 2 further weeks??

i have phoned up and told them i have reservations. I havent heard back, which is fine.

LeonieDelt Mon 25-Mar-13 17:35:31

i just want my lamictal back. i could cry sad

LeonieDelt Mon 25-Mar-13 18:37:52

the consultant suggested in our phone call me going back on the lamotrigine - i asked if i would react to it again and he said probably yeah, so i left it...

but what if there was a way back on it withOUT reacting to it?

What if the goddamn smugass cuntface GP was right and the reaction was coorelation, not causation? Just shitty timing? Something that can be mitigated? Something that was unrelated altogether, just bad timing??

I wonder if it is worth trying lamotrigine again, slowly, on the valproate schedule, with antihistamines to hand, and seeing what happens?

I am just very, very wary of a 60 hour half life on a drug that from all accounts is a bit like scratching an itch with a cat o nine tails...

LeonieDelt Mon 25-Mar-13 18:59:48

where's everybody gone?

i've run them all off with my whining sad

LeonieDelt Mon 25-Mar-13 21:02:19

ariane5: been reading the crazymeds website. apparently the B6 doesnt help as much as 3x / day dosing for keppra. apparently the halflife is so short, that's why. the Anger / depression pops up in between the twice a day doses.

LeonieDelt Mon 25-Mar-13 21:08:15

Bee: i'm not even sure they offer lacosamide in the uk?

You're in London? Gosh. HI there. smile

LeonieDelt Mon 25-Mar-13 22:35:30

happy purple day tomorrow, guys. as happy as it can be, anyway.

listening to my favourite epileptic before bedtime - Neil Young.

I think I need a damn good cry' and some time to think. that's not unreasonable, is it?

sorry if I've monopolised the thread and bored you all with my witterings.

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:09:56

Sorry, not bored just browbeaten by life. Got notes from DLA. Never gonna win. Their own medical officers report is totally contradictory and beers from me needing no help at all (because I can push a fucking pram. Yeah but I can't walk around outside without it. And she saw me on a bad day for my joints) to me needing help often from my Ex.

From me being able to bath safely to having to sink wash.

From me having no seizures to epilepsy /NEAD.

confused

Then theGP note says "epilepsy (uncertain)"

And arthralgia.

But I'm only 'mild to moderately affected'

And he asked me repeatedly to provide witness statements but patient has not done so.

Erm, that's because I'm not Dr fucking Who. He wrote that letter on 16/01/13, and asked ME for the witness statements on 19/03/13.

That's some timey-wimey shit right there!!

And to top that off, I got a lovely letter from the DWP saying that because I'm over the benefits cap I will have to find £50 A WEEK top up on my housing benefit.

Except I'm either not over the cap or I'm exempt from the cap...

£71 IS + £217 CTC + £60 ChB + £130 HB = £478. NOT OVER £500 a week!

So, they MUST be adding in my severe disablement top up on my IS. Which isn't being paid. Because my DLA isn't being paid. And you can't get the severe disablement top up on your IS if you are not in receipt of DLA.

So, either I am UNDER the cap, because neither DLA nor severe disablement top up on IS is currently being paid OR I am OVER the cap because of severe disablement top up on my IS but am exempt from the cap because I get DLA.

It has to be one or the other.

But neither DWP not my local HB can tell me who has worked out that I am over the cap. Nor can Shelter's Welfare team. Nor can the community legal team.

Someone, somewhere MUST have decided that I was over the fucking cap, but WHO FFS!!

And as for £50 rent top up. Hahahahahahaha.

I worked put that out of £71 IS, that would leave me £21. My electric alone is £25 a week. That works. Not.

Then there is all my other bills. Which I am meant to pay out of my CTC and ChB?! That money is meant to feed & clothe the DC's. If I spend that on bills, how do I feed or clothe them?! confusedconfused

Tbh, they're all incompetent bastards. And I'm sick of it. What is the point in fighting all the time if I'm going to end up losing the DC's anyway when I can't afford to house AND feed them at the same time?

Shitty day. Shitty week. Shitty month. Yet another Shitty year.

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:16:00

I saw him in February 2012 about my seizures and he stuffed me back on Gabapentin.

I saw him again about my epilepsy A WEEK BEFORE MY LLETZ, on 05/03/13. Over a year later.

For a whole year, I'd just been bunging in repeat prescriptions in at Tesco pharmacy. They got sent to him to sign. He signed them. For 11 fucking months.

Not once in those 11 months did he ask to see me, or ask me for cunting witness statements BECAUSE I HADN'T SEEN HIM.

I'd seen one of the other GP's about my joint issues. And then another.

So of course when he saw me in February LAST EFFING YEAR I had 'no obvious joint issues'. BECAUSE THE JOINT ISSUES DIDN'T START TILL JULY/AUGUST 2012 A FULL 5/6 MONTHS AFTER HE HAD LAST SEEN ME THE IGNORAMUS!!

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:17:00

11 months should read 13 months. Anger is making the (tiny) mathematical part of my brain implode, obviously.

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:18:26

I might take up banging my head repeatedly off concrete. It'd achieve the same effect without being anywhere near as stressful.

LeonieDelt Tue 26-Mar-13 07:31:26

Goodness Couthy. The DLA stuff is very very stressful. I'll need to re-read with a cup of tea before being able to contribute in any meaningful way myself.

But i can say this: How can so much contradictory stuff fit into one report??

They really are determined to undermine all of us arent they? SIGH.

Re the joint issues, i'm also hypermobile as are both of the girls but no EDS that we know of (???) saying that i wonder if the neurontin is "helping" your joints to hurt? Just a thought.

My fucking sternum is playing up something awful last week and this - makes me think i'm having a heart attack while i'm out carrying something or walking, when actually, its just pain IN my sternum where those 2 little bones join up and all the other little bones connect to it, cos i can duplicate the pain just by touching them. = costochondritis. But you try telling my brain that while i'm out walking, i instantly think its angina and therefore i'm going to die.

and they wonder why i cant take a med that is agitating like topamax, and dont WANT to take a med with a similar side effect profile like zonisamide, which i cant get rid of for 13 DAYS?!?!?!

(i read up on crazymeds on zonisamide too - its like topamax-on-steroids, i really really dont need that)

LeonieDelt Tue 26-Mar-13 07:32:41

sometimes i think my life was better when i was focussed on the kids and ignored my own body. Cos when i listen to it, i struggle to know how to decipher stuff.

I've missed Moose. Beetlejuice! WHere are you, Moose?

LeonieDelt Tue 26-Mar-13 07:33:43

Erm, that's because I'm not Dr fucking Who. He wrote that letter on 16/01/13, and asked ME for the witness statements on 19/03/13.

Hang on, you mean you cant time travel??

hmm hmm hmm

Wtf?

CouthySaysEatChoccyEggs Tue 26-Mar-13 08:49:23

I know! You'll have to excuse my sarcasm mixed with geekiness wrt the Dr. Who reference, but it's how I feel!

LeonieDelt Tue 26-Mar-13 09:08:36

(Who-geek here since 1991)

that would take some serious wibbly wobbly timey wimey to pull that off... Efkin bizarre.

LeonieDelt Tue 26-Mar-13 09:39:38

i dont now what to do with myself. sometimes i think this is a can of worms i wish i hadnt opened.

CouthySaysEatChoccyEggs Tue 26-Mar-13 12:22:06

Tell me about it!!

Hope you are feeling better today. On way to see psychotherapist to offload some of my stresses.

I think she might need a gin or two by the time I'm done!

DS3 now has his orthotic shoe inserts, and the change in his posture and balance was immediately obvious. Which is GOOD. Lets hope it means he falls over less. Then I might be able to dare to walk him outside if I can get a Crelling harness to stop him running off.

(He manages to escape from all 4 sets of reigns I've tried. Leather ones with a buckle, those little life backpack reigns, cheap ones with a clip at the back AND a set of Tommee Tippee ones. I swear the kid is related to bloody Houdini!!)

CouthySaysEatChoccyEggs Tue 26-Mar-13 12:23:23

And my effing bus is late so I'm freezing my tits off at yet another bus stop.

LeonieDelt Tue 26-Mar-13 13:22:51

that is so good about his orthotic inserts - dd2 needs one in her left shoe but getting them to refer her has been tough, but I already have them in mine...

I was wondering if there was a way to make the topamax more palatable. it started causing me insane amounts of anxiety. can't take more clonazepam to combat. that because of how sleepy it makes me.

I wonder if changing my clonazepam for frisium will help?

I haven't heard anything from them...

I checked with ep action, there is no epilepsy nurse for city hospital. bugger.

LeonieDelt Tue 26-Mar-13 13:23:42

I had my hoodie on in the house over my head tied up snug cos I was so cold yesterday.... I hate this fucking weather!

LeonieDelt Tue 26-Mar-13 13:43:25

I hope you get on OK at the psychologist.

omg mine would be on a chair with the noose round her neck I think...

LeonieDelt Tue 26-Mar-13 14:14:48

has anyone seen moose? I'm getting worried.

fair play if she's tired of my whining. i'm tired of my whining.

has anyone heard from her?

Chocolatemoosemama Tue 26-Mar-13 14:35:59

Hi Leonie, sorry I haven't been around. Period from hell accompanied by horrible migraine at the weekend, finally had my physio appointment for the CRPS yesterday and school stuff today.

Good/bad news is that I now have an NHS dx of CRPS, an absolutely lovely physio, an exercise plan and will be having regular physio appointments.

Had two episodes last night after a week and a day of none - so am more than a little p'd off about that, especially as I had to be at school for 9.00 this morning for dd's Easter Bonnet Parade.

Truth is, I am just not feeling very sociable and/or able to offer much advice and support at the moment. Sorry. sad

Last week's neuro appointment really knocked me down - even though I knew beforehand how it was going to go - and I'm still smarting. Pathetic, but true.

Sorry you are still having med problems. Hope you can work out a solution with your neuro soon.

LeonieDelt Tue 26-Mar-13 15:10:58

Dont feel guilty! I was just worried you mightve been in hospital again and i missed it having my head up my.own arse...

i am glad its 'just' a period.

trust me, im.not feeling too sociable either...

so with an nh dx.of.crps, what does that bring in terms of.help or meds or therapy? Is this the step foewad.you needed?

i'm just.glad youre ok. Silly me.

LeonieDelt Tue 26-Mar-13 15:16:37

wwoah frozen finger phone typing, sorry about that...

LeonieDelt Tue 26-Mar-13 16:22:07

well that was a weird phone call. consultant's secretary phoned, apparently the epilepsy guy says there are no alternatives to zonisamide and if i dont like it, i can go to my GP about seeing a different neurologist.

I asked if i could possibly see the Head Cheese, i find it very, very hard to believe that out of the pills in the BNF, i've managed to fail ALL of them but one.

So i have an appointment with Head Cheese on 15 Apr at 11.45.

I feel some degree of relief, but some other degree of tension.

LeonieDelt Tue 26-Mar-13 16:29:52

i feel like a bad kid who's just been disciplined.

dont i have a right to know to why every single anticonvulsant out there has been ruled out by me got suiting lamotrigine or topamax, and refusing zonisamide?

Cos i thought there were a whole lot more of them to choose from sad

LeonieDelt Tue 26-Mar-13 18:59:03

feeling very disheartened tonight - i told you i had a feeling i was in trouble, and i am in trouble, for refusing the third med.

how can he say there are no meds left to try? i've never been on keppra, or trileptal for example, never in my life, not even 15 years ago. how can they be unavailable to me? there's nothing in the BNF contraindicating them...

i'm switching off and going to bed soon. i guess i ought to feel relief - the zonisamide question has been answered. but instead i feel like a bad kid for being more complicated than their "bung a pill at it" strategy, you know?

goodnight ladies. i hope your day hasnt ended up as shitty as mine has.

CouthySaysEatChoccyEggs Tue 26-Mar-13 19:25:41

<<Sigh>> And that's why they keep mooting NEAD for me - because it's not as easy as 'bung a pill' at me...

Not my fault Lamotrigine did nothing - i had no side effects either, so that's why they said it wasn't right for me.

Not my fault I was allergic to Epilim either.

Not my fault that Tegretol, while helping to lower the frequency of my seizures, started to affect my liver function - it's such a well known side effect that you have to have regular blood tests to check your liver function. I failed the third one when I woke up looking like Marge Simpson.

It's not my fault Topamax tried to blind me AND sent me loopy, either. It bloody worked on my seizures, I had NONE whilst on it!

Gabapentin helps, but I need something else (though maybe just a higher dose?) during the week prior to my period.

I HATE being a more complex case than they like.

CouthySaysEatChoccyEggs Tue 26-Mar-13 19:31:04

Have you been on Epilim or Tegretol? I can't believe they would make you go to a 'different Neurologist' without at least trying you on those - they are very standard epilepsy meds!

As for the psychologist - even SHE was a bit puzzled why, given my childcare issues, that they were refusing to do the ambulatory EEG for me...she asked why they were being so 'difficult'. My answer - I don't know!

I am going to have 6 sessions with her, fortnightly to fit in with when DS3's dad is off work, as it at least gives me somewhere to offload.

On a brighter front...the SS thing? It IS to do an assessment of the DC's needs. Based on the visit that arose from DS1's dad calling SS.

I can't wait to thank him for helping me...

<<Eeeeeeevil laugh>>

14 years I've been trying to get help from the CWD team, and all it took was my twatty ex saying that I was making things up about the DC's health, and me proving the REAL situation to the SW...grin

CouthySaysEatChoccyEggs Tue 26-Mar-13 19:31:44

I almost wish I'd pissed him off sooner! grin

LeonieDelt Tue 26-Mar-13 19:43:32

15 years ago, i got very fat on epilim (30lbs) and stupid on carbamazepine (+10lbs).

But i swear to god i'll try carbamazepine right now today - its very good for PAIN, i'm in chronic pain with my neck. It might be my magic bullet.

i've lost 10lbs since my diagnosis anyway. My clothes are falling off me and i have no appetite stressing about all this shit, about being in trouble (i knew i was!!!) and what's gonna happen at the next appointment, whether he'll take my dx away, etc...

Why am i being told that the first line five, valproate, lamotrigine, carbamazepine, oxcarbazepine and levetiracetam, are unavailable to me because i couldnt carry on with lamotrigine? Okay, i dont want valproate, but wtf? There's 3 other drugs there, two of whom i've never taken IN MY LIFE, why am i being denied them???

topiramate's in the NICE guideline's 2nd line list, and zonisamide's on the TERTIARY list - which i'm supposed to be referred to someone tertiary before being given that one!

I just dont get it, i dont get it.

I've wracked my brains for some way, ANY way to make the topiramate work. To somehow to be able to stand it. I dont think i can. I keep thinking maybe if i took it at night, maybe... but it started causing panicky issues at the end of the third day and I know if i had stayed on it, i'd probably be sectioned by now...

I have easter hols coming up, i cannot be incapacitated with untreatable head pain - i will have no help, no one to take the kids, no school to break up the day, nothing!

If the Head Cheese can't let me try something else on that list, i will just have to quit, give up on it and embrace my seizures and get on with my life - this is taking up too much of my life, too much of my energy and too much of my headspace... its taking AWAY from my children and they dont need it.

LeonieDelt Tue 26-Mar-13 19:44:19

I'm glad you got on ok at the psychologist - i was thinking about you and moose both today.

CouthySaysEatChoccyEggs Tue 26-Mar-13 22:19:27

I can tell you why - Lazy Neuro. Like mine was.

Lamotrigine - 1st line.

Topamax - 2nd line.

Zowhatsit - 3rd line.

Not worked? See another Neuro or NEAD...

CouthySaysEatChoccyEggs Tue 26-Mar-13 22:21:30

Ask the Neuro why you can't try Keppra. I've heard very good things about reducing the 'rage' if you take it with a particular B vitamin (can't remember which one though) and evening primrose oil capsules.

CouthySaysEatChoccyEggs Tue 26-Mar-13 22:23:18

And ask why you can't try Tegretol too. What is there to lose at this point?

But please, don't make the same mistake I've made for years of letting it go wrt the epilepsy because of the stresses of dealing with DC's with SN's - it seems to be a guaranteed way to get slapped with an NEAD dx.

CouthySaysEatChoccyEggs Tue 26-Mar-13 22:23:43

TheNHS has a long memory...

LeonieDelt Wed 27-Mar-13 07:30:42

i want to try trileptal. i think it will be a good compromise with fewer side effects and i can always compensate for the salt problem by eating some.

i sussed out why the topamax had to go - it was self preservation. From the night i swallowed the first one, my diary reads as hopelessness. That stuff wasnt just an anxiety attack in a pill, it was depression, and it came on very, VERY fast.

My neck was killing me and my head was hurting but it wasnt terminal, it was disturbing because it wasnt the pattern i'm used to and because i couldn't sort it out the ways i have learned to sort out head pain. Though tbh my head pain seemed to be amplified from the first 3 hours after i took the first pill.

But it wasnt that - it was how the days seemed twice as long, the hours were agonising, the time stretched on, i was exhausted (i've been more tired than that ffs! think about my eeg!) but still all of that was not the worst i'd ever experienced.

But hours from the first pill, i felt weird. i felt displaced. i felt different and the different got worse with each successive pill until i had tears streaming down my face when someone asked me if i was from america, tears streaming down my face when i was asked why i like the NHS so much (cos no one asks you for money) tears streaming down my face at the thought of walking through snow (wtf? i do it every day) and tears streaming down my face at thinking of the 4 day wait to be free of the stuff.

I dont care WHO gets mad at me, i did the right thing in quitting.

I'm afraid if i'd stayed on it even longer, i might've stepped out in front of a bus in despair...

I dont see how they can go NEAD at me - i havent been able to tolerate lamotrigine (and the spots that developed on my bottom on the last day tell me not to try again), and the topamax was not in my system long enough to affect a seizure either way. I was only diagnosed on 4 march, it hasnt even been a month yet!

The topamax/zonisamide guy seemed to have a fixation on my headaches anyway - both are used to treat migraines. I can cope with my head as long as a pill doesnt make my sleep worse!

I will talk to the neurologist who doesnt think epilepsy's boring, who listens fairly well and who diagnosed me in the first place.

I am a delicate flower. I think the starting dosages are too high. I want even less than the typical starting dose and maybe, just maybe i can cope.

LeonieDelt Wed 27-Mar-13 07:36:40

15th april i see the Head Cheese at City. And i have hope. My hope is back. I have hope with the caveat of being cautious - my kids come first. I cannot be knocked on my ass and spend 2 weeks indoors waiting for the worst of the side effects to go away - i have children with autism.

I will lay it on the line and let the man use his judgement as to what might work.

There HAS to be something, even if it is evil fucking valproate.

LeonieDelt Wed 27-Mar-13 07:43:06

Keppra - B6. There's a theory that keppra depletes B6 and that in turn affects serotonin so the way to help avoid the Rage is to take B6.

I've also heard that the way to avoid The Rage is to take it 3 times a day because its halflife is so short. That makes more sense to me.

i am wary of keppra because it could also induce depression. i need to do more reading.

but yes, Tegretol/Trileptal are on my "try them" list - they are famous for helping some pain syndromes, and if there's anything i've learned, my reactions 15 years ago do not count.

LeonieDelt Wed 27-Mar-13 07:50:42

I mean, who goes on longer acting propranolol and LOSES 40lbs?

I did. with no other changes.

propranolol is FAMOUS for making you fat, as are all beta blockers, for how they work. But when something suppresses my thyroid (propranolol affects T4 -> T3 conversion, and it used on licence to stop thyroid storm / overactive thyroid), it makes me nervous and depressed (like topamax did!) and i LOSE weight, not gain it!

when i feel good, i'm fat, and happy. lmao.

LeonieDelt Wed 27-Mar-13 09:19:56

someone nicked my pushchair 0.0

can this day get any worse?

CouthySaysEatChoccyEggs Wed 27-Mar-13 12:55:41

Fucksake Leonie, what utter scum would nick someone's pushchair?! angry

May the fleas of a thousand camels infest their crotch and leave them scratching forevermore!!

I had a shitty morning - DS1 school refused. I got him there at 10.05am. He had a MASSIVE meltdown over the cold and how he was too cold to get up. Thank fuck I had a friend to take DS2 on the bus to get him there on time, as DS2 has a meltdown if there is even a suggestion that he might be a minute late for school!

I might have thrown myself under a bus if I had had both melting down at once.

And I'm facing two weeks of trying to help demand avoidant DD do serious revision for her Maths GCSE mocks...

<<Sits in corner crying and rocking>>

CouthySaysEatChoccyEggs Wed 27-Mar-13 12:57:19

The revision is made worse by the fact that DD is severely dyscalculic, and is going to have to work her arse off to manage to get a 'G' in Maths rather than a 'U'.

LeonieDelt Wed 27-Mar-13 16:16:57

Its rife in Brum, pushchair stealing. Seriously.

I have a crime ref num now. i can claim on my home ins but it'll be a hefty excess, £150, the damn thing wasnt worth £80 and it was filthy with broken brakes.

I hope the CUNT who stole it enjoys their broken pushchair. Fuckers.

If they'd waited til July i'd have given it to them - DD2 could do the school run by then without being too exhausted, no mid-day school run, just 9 and 3...

LeonieDelt Wed 27-Mar-13 16:18:14

I hope your DD manages to get her grade up. Its difficult :/

LeonieDelt Wed 27-Mar-13 16:43:16

i cried like a baby down the phone to the ep society. an hour i spent sobbing on the phone. partially cos some fucker nicked my pushchair, the other 99% of it cos i feel like a naughty child who's been told off, sacked by the epilepsy "specialist" cos i didnt like his medicine or his alternative...

CouthySaysEatChoccyEggs Wed 27-Mar-13 19:00:47

Fucking scrotey pram stealers. May all the boils of humanity visit their arses.

Today's summation : school refusing DS1, food shopping, housework, sellotaping nappy to DS3 as he takes it off but WON'T use the potty or toilet - because he has no clue when he needs to go, only when he's been, DS1 melting down because we have to GO OUT after school, DS1 melting down because he couldn't take his ds for the waiting room (best punishment ever, yeah?!), DS2's hydrotherapy, my knee dislocating, DD melting down because I haven't pulled a new phone charger out of my arsehole, and now to cook (a late) dinner!

Bloody new HV comes tomorrow afternoon and the house is a shithole again, too.

And washing machine still broken. Bastard.

CouthySaysEatChoccyEggs Wed 27-Mar-13 19:03:25

Oh - and I must look like shit because a lovely sprightly lady in her 80's / 90's have up HER seat on the bus for me today. And I HAD to take it. blush

LeonieDelt Wed 27-Mar-13 19:19:36

I had a nicked pushchair, school run without one (which involved DD2 nearly running out in the road 3 separate times), a sob down the phone to the Ep society, a second school run without a pushchair, a trip to Boots to get DD2 a lip balm withOUT any menthol in cos she swears blind it "hurts too much" to use carmex, easter bonnet parade at 1.15 which involved DD2 refusing to wear hers and refusing to walk and sing about going on a bear hunt, bursting into tears at the end (her, not me), the ASD support group meeting at 1.45, fetching the DDs and walking home at 3.45 - third school run sans pushchair, and DD2 taking that new lip balm and rubbing it all over DD1's carpet while i was folding laundry.

DH is home now, THANK THE LORD and is dealing with DD2's bath, DD1's done her homework, while i cool off - my head is banging and i just want to cry myself to sleep, and start over tomorrow.

LeonieDelt Wed 27-Mar-13 19:20:52

How do you cope without a washing machine? That's not cool!!

It was kind of the lady letting you sit - embarrassing when you have to take it though isnt it?

reminds me, i need to chase my bus pass - i may get it, and soon, too. Or, maybe not.

LeonieDelt Wed 27-Mar-13 20:11:09

Found this interesting reading. Just thought i'd share.

The bits about what mood does before and after a seizure - that's FASCINATING. Truly.

I still dont think i did the wrong thing stopping the topamax. I really dont. I have tried a thousand ways to convince myself to try it again, but i cant. I've been really, very on-edge tonight, very wound up and anxious. I can't imagine making it worse.