Here some suggested organisations that offer expert advice on SN.

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

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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

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

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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

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

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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

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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

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

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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

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

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

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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

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

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

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

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

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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

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

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

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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

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

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

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

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

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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

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

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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

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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.


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

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

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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

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

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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

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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

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

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

It IS an unpleasant merry go round...


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

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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

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

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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

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

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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!


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?


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

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

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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

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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

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

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

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

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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

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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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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!


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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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.


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...


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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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 [ 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

Message withdrawn at poster's request.

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


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

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

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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

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

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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

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

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

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

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

I'll finish my story in a 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...


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 - 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

Message withdrawn at poster's request.

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

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

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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


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

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

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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.


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

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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...


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'.


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.


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'.


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.


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?


LeonieDelt Wed 20-Mar-13 16:52:33

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LeonieDelt Wed 20-Mar-13 17:05:38

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LeonieDelt Wed 20-Mar-13 20:50:04

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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

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LeonieDelt Wed 20-Mar-13 21:48:31

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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

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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

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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

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LeonieDelt Thu 21-Mar-13 13:23:04

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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

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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!!!


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.


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

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LeonieDelt Thu 21-Mar-13 16:11:50

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LeonieDelt Thu 21-Mar-13 16:17:51

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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

<<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!!


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

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LeonieDelt Thu 21-Mar-13 17:22:11

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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

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LeonieDelt Thu 21-Mar-13 17:28:32

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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

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LeonieDelt Thu 21-Mar-13 18:14:39

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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

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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

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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

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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

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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

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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

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LeonieDelt Fri 22-Mar-13 09:23:08

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LeonieDelt Fri 22-Mar-13 09:40:19

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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

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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

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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

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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

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LeonieDelt Fri 22-Mar-13 11:33:25

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LeonieDelt Fri 22-Mar-13 11:40:26

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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

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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

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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

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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

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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

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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.


Stick with it for a while. C

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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

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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

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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!

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ariane5 Sat 23-Mar-13 14:54:13


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

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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

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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

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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

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CouthySaysEatChoccyEggs Sun 24-Mar-13 19:09:06

Try another'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...

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CouthySaysEatChoccyEggs Sun 24-Mar-13 19:54:56

Nah, explain what the eye bloke said.

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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...

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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


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!!


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.


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

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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.

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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?

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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.


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.


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.

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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

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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

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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

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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

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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

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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

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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

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CouthySaysEatChoccyEggs Thu 28-Mar-13 02:17:27

I can't use Carmex - it literally BURNS my lips. I like the Palmers cocoa butter one.

CouthySaysEatChoccyEggs Thu 28-Mar-13 02:21:09

I've never read up on moods before and after seizures. (Makes note to when not do criminally busy).

However - my Ex's take on it is that I become 'whiny' 'picky' 'moany' 'naggy' 'irritable' 'grumpy' before a seizure - it's one of the first signs to him that I'm going to have one, and then he checks my eyes.

Apparently he can tell by my eyes when I'm going to have a seizure...

Afterwards I am 'aggressive' 'shouty' 'dazed' 'confused' 'abrupt' 'sleepy'.

Those are his words...

CouthySaysEatChoccyEggs Thu 28-Mar-13 02:22:57

I think you did the right thing with the Topamax, but it might have been better to ring the Neuro & explain the symptoms first.

Didn't the receptionist 'gatekeep' though, if I recall?

The right thing for you WAS to stop taking Topamax.

LeonieDelt Thu 28-Mar-13 07:11:07

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CouthySaysEatChoccyEggs Thu 28-Mar-13 21:53:22

I wish I could lose that much! Then again, I got back into a size 8/10 for the first time in years when I was on Topamax. Wish I was that size now. Some of my size 16's are getting tight. I was back to a 12 after having DS3, before I went back on the Gaba, then a 14 for aaaages, but since my dose was raised, I've turned into a right heifer. I look round now!

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CouthySaysEatChoccyEggs Sat 30-Mar-13 15:39:28

Hope so, Leonie.

I've got my bastard washing machine to work, and now my bastard printer has stopped working.

I've changed the ink, so it's not that.

The fucker copies fine, so the printy bit IS working.

The only thing I can think of is that I bought a new dongle and put my sim in it, and for some reason the printer won't connect to it.

I think my only option is to remove the printer from the lappy, then reinstall it. But that requires me finding the effing installation disc. Last seen in a pile of paperwork roughly 9 months ago...

It's imperative that I find it, I need to print out a past maths paper for DD to do for revision. And it. Won't. Fucking. Work.


LeonieDelt Sat 30-Mar-13 15:45:59

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CouthySaysEatChoccyEggs Sun 31-Mar-13 19:58:11

Happy Easter. DS3 loved his free from chocolate that I made a big egg, mini eggs and lollies from. His first ever taste of chocolate.

Free from dairy / nuts / soy.

Cost £26 for enough to make one standard sized egg, some lollies and some mini eggs though! shock

Worth it to see his face. grin

How is Easter going for you?

CouthySaysEatChoccyEggs Sun 31-Mar-13 19:59:40

The chocolate is made from rice milk. It's lush though. It's got bits of freeze dried strawberries in and he's lucky I haven't stolen it all!!

LeonieDelt Sun 31-Mar-13 20:55:19

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CouthySaysEatChoccyEggs Wed 03-Apr-13 23:59:54

Your not boring me. I'm just ill. And despite the illness, I thought it would be a bright idea to take 4 DC's to the Science Museum. In London. On my own.

I need my bumps felt or something...

DC's are ok bar loads of actually minor meltdowns though I did have to go overground from the tube to the museum rather than through the tunnel. DD only elbowed one person encroaching on her personal space on the tube (which is very good for her).

I'm happy that the I creased dose of Gabapentin seems to have held most of the szs at bay - only had 3 small ones this week, first week of any, as I was due on.

Feel like poo though, going to London has given me an asthma attack, all wheezy like Darth vader. Going to have VERY painful joints (more do than now!!) tomorrow, probably be wiped out for days now.

CouthySaysEatChoccyEggs Thu 04-Apr-13 00:03:55

I hope it is 'just' anxiety, Leonie. I get what you are saying about the epilepsy being secondary to your heart things.

What is the issue with your DD2? Maybe I've got some suggestions? (Probably not, as I'm crap with sorting issues with my own DC's, so unlikely to have many of the answers for someone else's!)

LeonieDelt Thu 04-Apr-13 16:44:18

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Chocolatemoosemama Thu 04-Apr-13 20:15:02

Hi, sorry have been awol.

Last week I was very low with horrible period and back to back migraines and my CRPS has been pretty hellish since it was manipulated by the physio last week as well.

Been a bit better since dh had 4 days off over Easter. Managed a short trip to a local farm to see the lambs, piglets, chicks and calves on Tuesday and them took the dcs out for the afternoon with dh yesterday, as he had the afternoon booked off. We had to do something as we have the damned nursery bear this week and need to put something over and above pj days in the diary!

Unfortunately I have paid for it today. Had my first episode since the 26th last night and literally could not get up this morning, I could barely wake at all. Dh had to feed the dcs before he went to work, then plant them in the boys' room with my laptop to watch back to back Pokemon episodes while I tried to wake up and be capable of looking after them. Eventually managed to peel myself out of bed at 10.00 am, but only made it as far as the sofa, where I have been all day. God bless my lovely dh for having made the dcs all packed lunches or I'd never have coped.

So a pj day all round today and I am for my bed very soon, as can hardly hold my head up or keep my eyes open.

Am definitely seeing a pattern of them occurring after several nights of poor or disturbed sleep and also when/if I am daft enough to eat anything sugary late at night. Last night I had a pack of revels at 10.30 am, the time before it was iirc some Ben & Jerry's ice cream.

I also blame myself for stoopidly saying to dh last night that I seem to be doing better episode-wise, having gone over a week without so much as a hint. I should have known I was tempting fate.

Saw our old vet, who agreed that palliative care and watch/wait is the best course of action with the dog, given her age and general standard of health. Unfortunately, she then became seriously lame on her offside hind leg and was in a lot of pain. Rushed her to the vet expecting a ligament or joint problem, perhaps as a result of slipping on ice in the garden, only to discover that the pain is actually at the top of her shin and could well be a secondary. She's on a week of anti-inflammatories and painkillers to try and work out if it is an injury, but six days in and she still won't put it to the floor. She's happy enough in herself - still eating well and chasing her toys - just on three legs instead of four, but gets very upset and restless late on in the evening when she is due her overnight dose of painkillers. Vets want her in for an xray if she is no better by Monday and to be honest, she won't be because there has been zero improvement so far. Not sure what to do now, xray means day patient treatment, which is what we were trying to avoid with surgery, as she has poor sight and is almost deaf and I really don't think she'll cope. Vet did say that if she is going to have a general for xrays, they may as well excise the tumour at the same time, but it just doesn't feel right. Dh has an appointment on Monday evening to discuss it all with the vet and decide what to do, so I guess we'll have to have some serious discussions over the weekend. sad

Other than that, ds1 is being a nightmare with all this unstructured time. Easter weekend was really hard going with him, better the last couple of days while we've been out and about but absolutely bloody awful today, just when I really couldn't cope with the chaos he creates. He's not well himself either, having horrible digestive problems again and now seemingly passing blood - can't get a straight answer how much and haven't actually seen it myself but it has pushed his health anxiety through the roof and we are back to constant hand washing (which of course has caused his eczema to flare up) asking if he might have touched or ingested something poisonous and checking if x, y or z imaginary symptom means he has been poisoned or caught something terminal.

It's his birthday next week and he's so ridiculously excited about that, plus stressed at getting his room ready for his best friend to come to tea, plus doesn't do unstructured time, plus all the stress of upcoming SATs and it being his last term at his current school next term - that he is just in freefall really, beyond stressed and not coping on any level.

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moosemama Sat 06-Apr-13 13:59:48

Thank Leonie.

Things have taken a turn for the worse. I got the day wrong for her follow-up, it was this morning. Dh took her and they rushed her straight in for emergency xrays and possible op while she's still under. Last night and this morning we kept finding spots of blood on the floor where she'd been, but couldn't find a source for it.

Vet who saw her this morning said her leg muscles have completely atrophied, which would suggest she's been off her leg longer than she has - which obviously isn't the case. Also very confusing as the vet last week didn't notice and he's an amazing vet. She Has limped intermittently on it over the past month or so, but we just assumed it was a bit of arthritis, given her age and the fact that she was still happily running around and chasing toys etc.

Another possibility is, would you believe it, neurological damage, but this vet found a big swelling on her rear leg, just below the hock, that runs from the back of her leg right round to the front and almost meets up again at the back. So after a week of anti-inflammatories and not using the leg at all the lump/swelling the fist vet found has actually got significantly bigger, which suggests it could be a tumour, but vet said could also be a fracture. confused

Basically, we won't know until they've done the xrays. We have to call between 5 and 6 to see what they found and whether or not she's going to be kept in. Bill for this is already at £200 and that's if they don't decide to excise the first tumour while she's under, then if they find anything they need to deal with there and then that could add significantly more. If she has to stay in over a weekend it's going to be £££'s that we just don't have.

Dh is panicking, because we've just bought all the boys' birthday presents (both birthdays are in the next fortnight) and to cap it all his team didn't meet their target, so he's not going to get his bonus, which would have been due this month.

Dcs all at Pokemon League with dh and I am on pins at home alone, have even ironed everything in sight to keep my mind off it. I was really looking forward to having a couple of hours to myself, but can't enjoy it now.

Our other do is really upset as well, he's whining constantly, keeps doing proper full on haunted howls and has planted himself on the bench in front of they bay window to watch for her coming back. sad

I've now done too much, can't stand on my bad foot and am completely wiped out, so can't keep active to distract myself. Think I might try and immerse myself in a computer game and see if that helps.

moosemama Sat 06-Apr-13 15:45:32

Vet called us - always bad news when they do that.

It's aggressive osteosarcoma with extensive bone destruction. Vet did say she would refer to specialists and they would be the ones to decide what/whether treatment would be appropriate, but that she would def lose her leg if we went for treatment. Also offered to do further xrays to check for secondaries, but finally suggested not waking her from anaesthetic.

Dh wanted to let her go, but I couldn't do it. We lost my beautiful boxer gsd cross to fibrosarcoma in almost an identical site, under near identical circumstances when ds1 was a few weeks old. He went in for limb removal, had xrays, found multiple secondaries and didn't wake him up. I have never really come to terms with it and he was definitely ready, whereas my girlie is still eating, being cheeky, chasing her toys and enjoying hugs - she's just not ready ... I'm not ready. sad

So, we're bringing her home at 5.30 and the vets are going to give her palliative care. I don't want her to be in pain, so she's going to be on tramadol and anti inflammatories, but apparently if she falls on her leg she could fracture it and that would be that. I'm guessing we have a couple of weeks at best. Vet said prognosis with this type of cancer is usually a few months max, but that given the advanced stage it would be much less for her.

I am worried that she will just be zonked out on the tramadol and if she is, we will have to think again about whether or not it's fair to keep her going.

I think I must have been in denial, because I am in shock, actually shaking and so many tears. sad

LeonieDelt Sat 06-Apr-13 15:58:35

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moosemama Sat 06-Apr-13 16:55:39

Thank you Leonie.

We've just been to the pet shop and bought a lovely soft memory foam mattress for the bottom of her bed in the hope of making her as comfy as possible.

I am doubting myself so much re the decision to wake her and bring her home, but I guess I have to trust my instincts. I suppose we'll know soon enough if it was the wrong choice. sad

CouthySaysEatChoccyEggs Sat 06-Apr-13 17:23:06

(((Hugs Moose & Family)))

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CouthySaysEatChoccyEggs Sun 07-Apr-13 11:21:16

Peaceful yes, as DS3 is at his dad's for a few days.

Until DD woke me up as she wanted to go out with her 'friends'. Who haven't bothered with her at all for 5 weeks now - what's the betting that her 'friends' can't find anyone else who is free to go out with, so they call on DD as a last resort.

And no matter how I explain it to DD, she doesn't get it.

They treat her like a last resort.

Yet she has no social problems...

Why do the school not see that it isn't normal for a 15yo to only go out with their friends once every 5 or 6 weeks outside of school, they just see that she 'hangs around with' a group of girls at school.

But I feel that they just 'tolerate' DD hanging around the edges of their group, but don't make any real effort to include her in social things.

moosemama Sun 07-Apr-13 11:32:25

Not really peaceful here. Dd is unsettled by all the dog stuff and had us up three times in the night and ds1 is all over the place.

The dog had a good night though, slept right through and was still snoring - loudly - at 9.00 am.

She woke up when dh took the other dog out, had some chicken and her meds then went outside and brought dh her ball on a rope to chase! Came back in, went back to bed, then got up again to beg for the apple and pear cores when dh was making the dcs porridge.

She's been a bit whiny in the last half hour, but I think that's her meds kicking in and making her feel strange.

Am feeling better that I made the right decision now, as she is still full of life, despite her leg.

moosemama Sun 07-Apr-13 11:36:05

Couthy, teenage girls are the pits aren't they. It's vile the way they treat each other and it's so much harder if you don't have good social skills to start with.

That said, the boys in ds1's year are similar. Ds is often used as a last resort friend by many of them and he doesn't understand it when I try to explain either.

LeonieDelt Sun 07-Apr-13 20:21:25

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CouthySaysEatChoccyEggs Mon 08-Apr-13 20:26:21

Guess what letter I got in the post today?


I'm not sure if it was me telling the GP I felt he had been negligent that caused him to send off a referral, or the fact that the psychologist said that she felt the GP was being 'difficult' in labelling me 'non-compliant' for not doing a test that I can't get childcare for when there's an alternative...

(She went right downstairs to the GP's after our appointment, so maybe she had a hand in it?!)

Whatever way, I couldn't give two craps, I HAVE a neurology appointment in mid-June!

Not soon enough for DLA, but you can't have everything...

Now I need to work out what to say, start keeping diaries etc...

What should I write down?

Headaches as well as szs? When I feel drained in the morning? Whether my period is due? (As symptoms are always worse then).


CouthySaysEatChoccyEggs Mon 08-Apr-13 20:27:22

Glad pushchair is sorted. Hope you get your thyroid stuff sorted soon.

What are they going to do about your liver then?

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:29:26

I still feel a bit funny using my bus pass too.

Logically, I know I'm 'entitled' to it, as the DVLA would sooner poke themselves in the eyes with sharp pins than give someone with szs that don't have a full dx, and have been there on and off for 9 years, and happen frequently a driving license, but still...

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CouthySaysEatChoccyEggs Thu 11-Apr-13 13:11:36

I've got my letter from the Gynae consultant.

This is the letter :

Dear Couthy

Thank you for your letter of 21st March. I can confirm that shortly after you had your colposcopy with me on Tuesday 26th February that you were then found shortly afterwards in the waiting room surrounded by a number of staff, watching you have a convulsion. The convulsions lasted for a couple of minutes each time and from what I witnessed, this happened at least 3-4 times. I did not see that you but your tongue or wet yourself but you certainly underwent a tonic clonic convulsion with periods of absence and this may amount to an atypical grand mal or more severe petit mal seizure.

I have copied this in to Dr Disbelief (changed name grin ) at your surgery so they are aware. If you need any further information please do not hesitate to contact me.

Yours sincerely,

Mr Head Honcho,
Consultant obstetrician & gynaecologist

CC : Dr Disbelief at your GP surgery...

CouthySaysEatChoccyEggs Thu 11-Apr-13 13:12:50

Do you think this might show DLA that I am having seizures...


LeonieDelt Thu 11-Apr-13 17:17:14

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CouthySaysEatChoccyEggs Thu 11-Apr-13 20:23:32

Wish I knew - night work out WTF is my issue with meds too, if I knew! grin

I feel like a weight has been lifted off me with that letter - a proper medical consultant type person has STATED IN WRITING that in having seizures.

I'm not totally mental...only some...wink

The Neuro I see seems to be quite aware of epilepsy - holds talks etc, is on the board of the Associated Board of Neurologists. Only thing I can't seem to find out online is her Neurology specialism.

I'm really hoping that a) she can see from this letter & the witness statements that it IS epilepsy, and b) She finds me a med that works, without (really) nasty side effects.

God knows what they will try.

Good thing though - Neuro is female, so hopefully will understand about the hormonal component catamenial epilepsy there is to my seizures.

I will arm myself with a list of drugs I've tried, my reactions to them, if they helped or not, if I was allergic to them etc...

Plus my own account of my seizures, plus the Gynae consultants letter AND the witness statements that I now have.

Tbh, the DLA is now almost a side effect to getting a firm dx, and proving that I've not got NEAD, but 'proper' epilepsy.

I will be sorting out all my DLA appeal paperwork tonight, though, and sending what I do have off to them, signed for.

After that, I've done what I can!

CouthySaysEatChoccyEggs Thu 11-Apr-13 20:25:01

Oh - and I just wish I had been a fly on the wall when my GP received his copy of this letter, couriered to him...gringringrin

LeonieDelt Thu 11-Apr-13 20:26:57

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CouthySaysEatChoccyEggs Thu 11-Apr-13 23:44:48

I'm not seeing the Neuro till June, and I'm already in a pickle about WTF she will want to stick me on.

I will be refusing Epilim, Tegretol and Topamax, so she'll have her work cut out for her...grin

LeonieDelt Fri 12-Apr-13 13:49:37

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CouthySaysEatChoccyEggs Fri 12-Apr-13 14:07:40

You too! What is Gilbert's?

CouthySaysEatChoccyEggs Fri 12-Apr-13 14:08:18

I would like a thyroid test, have been asking for one for years.

LeonieDelt Fri 12-Apr-13 14:11:52

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LeonieDelt Sat 13-Apr-13 21:38:52

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moosemama Mon 15-Apr-13 11:11:29

Sorry I've been awol again. Things are very tough in rl at the moment.

Just wanted to pop in and say good luck for your appointment today Leonie. Hope it goes well.

LeonieDelt Mon 15-Apr-13 12:27:33

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CouthySaysEatChoccyEggs Mon 15-Apr-13 14:41:43

Still reading - tough hols for me too, SW thing DIDN'T go well. Will explain on my other thread later.

LeonieDelt Mon 15-Apr-13 16:40:40

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CouthySaysEatChoccyEggs Wed 17-Apr-13 22:06:30

I really don't know, Leonie. sad

Give the topa another go on the slower schedule? Find another Neuro?

Wish I had these answers for you, I really do!

LeonieDelt Thu 18-Apr-13 16:30:14

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moosemama Fri 19-Apr-13 16:12:10

Leonie, I haven't a clue what to suggest.

Can you ask for a very slow start at a lower dose, like Couthy suggested?

I have just received a letter from the locum neuro. My eeg has been cancelled, as apparently I do not fulfil the criteria. I could have told him that, I have sporadic/irregular, unpredictable episodes, which are more prevalent around a week before my unpredictable and irregular period. hmm

It says 'the patient will be reviewed in the clinic to review her clinical history and arrange further management plan".

So, we're back to square one and he will probably just stick me back on a 12 month review or discharge, like he wanted to at the last appointment. hmm The only other avenue they have left is a sleep deprived EEG, which would be more appropriate, but still stands a chance of not catching anything.

Stupid thing is, I only got the letter confirming my EEG at the start of this week.

I'm wondering if he has been over-ruled by someone senior or if it was because he asked when I have most of my seizures and I told him they always happen between 4.00 am and 6.00 am.

I have had lots of episodes this week, kicked off by a god awful migraine last Friday, that ended up with dh having to come home from work to have the dcs. I am premenstrual again though, so it is seeming like there is almost definitely a link there.

Only problem is that I have been so rough and so busy simultaneously that I haven't managed to keep a proper record of what's gone on over the past week.

Dog is still hanging in there, but it's very stressful keeping her safe and comfortable. Saw a different vet last week and he really messed with our heads suggesting it wasn't osteosarcoma but could be a bone infection, curable by amputation (at a cost of £500 plus pre-op xrays and tests that would cost about £200 and may mean the op wouldn't go ahead). Seeing the original vet again on Monday evening. I'm pretty sure she has lung mets as she's coughing, her breathing isn't right and we keep finding blobs of blood here and there that we can't trace a source for - so probably as a result of coughing. Still haven't a clue what to do though, because despite it all she still wants to play with her toy and is happy and pretty much herself and comfortable on her pain meds.

Ds2 went on his first ever residential trip today - after being up in the night sobbing and saying he didn't want to go. sad He went off on the coach happy enough, but ds1 spent the whole day sobbing about it and unfortunately was able to watch the coach leave from the playground at lunchtime. He came out of school sobbing just can't handle ds2 not being here.

Not looking forward to this weekend, ds1 and dd fight at the best of times, but have been much worse recently. Ds2 is usually my little peacemaker and absolutely golden with dd, so it's going to be a looong weekend without him. sad

LeonieDelt Fri 19-Apr-13 19:00:52

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moosemama Fri 19-Apr-13 20:19:24

That sounds like your answer then? Get the other things sorted and settled first and then revisit tackling the epilepsy.

Well, we got through one evening with no ds2 - now dh is tackling bedtime. He reckons he may end up sleeping in ds2's bed tonight and tomorrow though.

Ds1 just told me there is a group of boys at school who are ganging up on him to make him do silly things. He said they promised to tell him something amazing if he did it, but he actually did it because he felt intimidated as they were all surrounding him and pushing him to do it. This time it was just embarrassing himself by making a loud roar - but it's the thin edge of the wedge if they realise they can intimidate and manipulate him like that - bloody text book bullying of a child with ASD, as per Attwood's book.

LeonieDelt Sat 20-Apr-13 07:50:32

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moosemama Sat 20-Apr-13 11:20:49

Sounds like a plan.

Me too - I hardly seem to get more than a couple of hours a night these days and then it's often not consecutive.

Dh says while I was ill the other day I was falling asleep but semi waking to turn over roughly every 30-45 minutes. It's no wonder I'm knackered.

Am on the verge of yet another migraine this morning - shouldn't be on the laptop really. Have taken painkillers, but they've just kind of pushed it further back into my head and it's lurking there, waiting to come out and attack. Period feels imminent though, so it all makes sense. Iyswim.

Dh had taken the two remaining dcs to Pokemon League and I should have peace and quiet but the dogs are whining at being left behind. hmm

Been invited out to lunch with my family today and it's a beautiful sunny day, but I'm really not sure I'm going to make it - can see me having to crawl back to bed shortly. sad angry

CouthySaysEatChoccyEggs Sat 20-Apr-13 18:39:47

I'm really scared about this SS thing. I don't want to lose my DC's just because I tried to fight for the help that they should be getting anyway.


LeonieDelt Sat 20-Apr-13 20:29:49

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LeonieDelt Tue 23-Apr-13 17:21:51

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CouthySaysEatChoccyEggs Tue 23-Apr-13 17:35:28

See my 'hand holding needed' thread...BAD day & a massive attack of the guilts...

LeonieDelt Tue 23-Apr-13 18:14:32

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moosemama Tue 23-Apr-13 18:29:15

Couthy, have posted on your other thread. Absolutely nothing to feel guilty about - you did everything right.

Also don't start feeling guilty about the possibility of it being epilepsy. Even if it is, there is nothing to say that it was inherited, so don't waste your energy feeling guilty about that.

((more hugs))

LeonieDelt Tue 23-Apr-13 19:03:24

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CouthySaysEatChoccyEggs Thu 25-Apr-13 12:20:19

Gynae consultant's letter worked - I have my DLA back (for now).

I now have LR mobility and MRC.

They've only awarded it until the start of October THIS year though - so got to go through it all again in 6 months time.

I'm assuming that they've done that because I'll have seen the Neuro by then...

Now I've got to ring IS again to sort my disablement allowance on top of my IS, and the backpay for that...

So a small YAY! grin

moosemama Thu 25-Apr-13 17:08:17

Glad to hear you have your DLA back Couthy.

I have had a truly horrible day.

We saw the vet on Monday and agreed to have my old girl's chest xrayed, because her breathing seemed a little odd and she had been coughing. Vet said at the time that she was happy that she was comfortable and there was no urgency.

Tuesday she was much more restless, more coughing and since then has been less keen to get out of her bed to go out. This morning she didn't even get up when I picked up her harness and lead.

Took her in for her xray first thing and when we arrived the vet said she felt the bad leg was unstable, which it hadn't been when we last saw her on Monday.

They were hoping to do the xrays with her awake rather than put her through a GA, but in the end had to sedate her.

Xray showed lots of lung mets and that she'd sustained a pathological fracture to her bad leg. It would only have taken a slight knock or twist with her bone as badly damaged as it was by the tumour.

The vet gave her an injection of painkillers and kept her sedated and Dh came straight home from work. We both held her while they put her out of her pain at half past twelve this morning. sad

It's been a long hard day and our other dog has covered the kitchen in slobber through the stress of being on his own at home for the first time ever in his life. He was howling really loud when we arrived home. We took him for a long walk this afternoon and he's calmer now, but very sad. He's spent the last three weeks trying every trick in the book to get into her new memory foam bed at every opportunity, but today he hasn't tried to get in there once, even though it's empty. He's a sensitive soul and I think he's likely to be the type of dog that grieves, we are probably going to have to do a lot of work to get him through this.

Unfortunately he was also rushed into the vets on Monday, as he was dripping blood. We had both dogs there at the same time and the bill came to an eyewatering £178.00! shock He had lots of tests and checks and it seems it's his prostate. Fortunately his urinanalysis didn't throw up anything worrying (no stones or signs of cancer - thank God) and his symptoms seem to have stopped since he's been on meds. As he is entire, he was given an injection to reduce/remove his testosterone for the next 6 weeks and is on antibiotics and anti-inflammatories. Basically it means we will have to have him neutered to reduce his testosterone, as that's what's feeding the prostate problem. Ironic really, as the reason for not neutering large breed dogs is because it increases their chances of getting osteosarcoma. hmm sad

LeonieDelt Thu 25-Apr-13 18:07:36

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CouthySaysEatChoccyEggs Thu 25-Apr-13 18:12:06

TAC meeting turned into a CIN meeting between when SW told us about it and the actual meeting.

NOT happy. Will moan later!

(((Hugs Moose)))

LeonieDelt Thu 25-Apr-13 18:34:47

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moosemama Thu 25-Apr-13 18:43:18

Thanks guys.

Couthy, you have far bigger worries than me - you moan away if it will help.

CouthySaysEatChoccyEggs Thu 25-Apr-13 21:58:09

Still processing, will explain when sink in. A 4+ hr meeting is not easy to process instantly.

NoHaudinMaWheest Thu 25-Apr-13 22:56:51

(((hugs))) Moose so sorry about your dog.

Couthy oh no! 4 hours is a true marathon regardless of content. So sorry you have been messed around again.

LeonieDelt Fri 26-Apr-13 10:23:15

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CouthySaysEatChoccyEggs Fri 26-Apr-13 23:52:04

One thing that sticks in my head, from the Secondary SEN lady (not the SenCo, but have seen her before regarding DD), is that she described my DD as having 'moderate Learning Difficulties'.

Which has never actually been spelt out to me before. So they DO accept that DD has moderate LD's.


And the Primary HT's insistence if the phrase "quirky" to describe DS2 as well...

CouthySaysEatChoccyEggs Sat 27-Apr-13 00:04:07

They kept going on about my 'insistence on labelling the DC's difficulties and looking on the negative side of their many medical issues'.

Yeah, so shoot me for wanting to know WHAT caused their issues in order to effectively target help...

Tbh, the more I think on this, the more peeved I'm getting.

Another thing that is bothering me is to do with the psychotherapy thing. Apparently the GP has told the SW that I need to go to a specific place for psychotherapy rather than seeing the 'counsellor' attached to the surgery - yet he has said nothing to me, referred me TO the lady I was seeing, and you know that I phoned her FIRST to check out that she was a qualified psychotherapist, don't you?!

Why is the GP discussing MY treatments/referrals with the SW before discussing them with me?!

GP didn't even attend this meeting.

I find it hard to see why the SW's would tell me it was a TAC meeting when it was, in actual fact, a CIN meeting too.

And the 4 hrs without a break was awful, it really was. I was in tears by the end of it, getting berated for the fact that I drink energy drinks (!).

Yeah, I drink cheap red bull - I don't touch alcohol, and I don't take drugs, and I don't drink coffee, tea or coke.

Apparently it makes me a 'bad role model'.

On the plus side, I don't neglect the DC's...

LeonieDelt Sat 27-Apr-13 08:39:29

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CouthySaysEatChoccyEggs Sat 27-Apr-13 12:46:14

Lost a massive post. Bums. Will rewrite it later.

Finding out that the HT has reported me to SS no less than 3 times in the last 5 years is a bit off-putting. I have to send my DC's to a school where I don't trust the staff.

Also I think SS want a full psych eval done on me.

This is definitely FII they're looking at, I'm sure, even though they haven't stated this. They all agree that I do not neglect my DC's, they're well fed etc.

It seemed like the only person even slightly 'on my side' was the chief medical nurse who I've never seen or met before.

She was the one who asked for a break for me (HT refused), she was the one who went to the toilet with me and reassured me in there, she was the one who challenged the HT to define what he meant by saying DS2 was 'quirky', she was the one who was shocked that I had never been told that DD has MLD, she was the one who asked the SEN lady to 'quantify' DD's specific learning difficulties, and took notes when the SEN lady was unable to quantify her MLD's, she was the one that is pushing for a full paediatric assessment on DD.

At least it seems like one person is on my side!!

LeonieDelt Sat 27-Apr-13 14:13:06

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CouthySaysEatChoccyEggs Sat 27-Apr-13 15:02:14

Where from? No money, no legal aid...

CouthySaysEatChoccyEggs Sat 27-Apr-13 15:03:07

(Genuinely asking for suggestions of where to go for legal advice here. Preferably someone experienced in FII cases) PM me answers...

LeonieDelt Sat 27-Apr-13 16:31:27

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CouthySaysEatChoccyEggs Sat 27-Apr-13 16:33:18

Oh. Them. It's not so bad if you are from another LA. They are still in Essex...

LeonieDelt Sat 27-Apr-13 17:00:35

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NoHaudinMaWheest Sat 27-Apr-13 21:38:30

There's the Disability Law Service as well since disability yours and DCs are the issue.

Or Disabled Parents Network used to have a service for parents who were having difficulty with SS because of their own disabilities not sure if they still do. Their helpline is 0300 3300 639

CouthySaysEatChoccyEggs Sun 28-Apr-13 08:43:03

Thank you. Will give some of these a try for advice on Monday.

LeonieDelt Sun 28-Apr-13 08:48:27

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CouthySaysEatChoccyEggs Mon 29-Apr-13 11:56:54

Children's Legal Centre are going to take the case on. Thank you for the recommendation. thanks

They are going to ring me back to arrange an appointment for me to go in and see someone face to face. Helps that it's actually local ish to me. Just got to find a lift there!

I have a busy few weeks -

30th April Physio Review for DS2.

2nd May GP about 'other' psychotherapist for me.

3rd May HV for DS3.

7th May Family Support Worker from the DS's Primary School.

8th May Orthotics assessment for orthotic insoles for DS2.

13th May SenCo at DD's Secondary.

14th May Trainee SW at home.

15th May Dietician for DS3.


And that's without any additional appointments that may get booked!!

Stressed, upset, watching every word I say to people, just nodding and smiling tbh.

CouthySaysEatChoccyEggs Mon 29-Apr-13 12:10:11

If anyone's got any ideas on how to approach the SenCo meeting about DD, it would be appreciated.

I want to know why it's taken 15 years for someone to say that DD has 'moderate Learning Difficulties'.

Do they mean the 'technical' definition of Moderate LD's, someone with an IQ of between 50 and 70, or if they mean something else.

I want them to quantify DD's specific areas of difficulty, and to tell me what they are doing to support her, and what I can do to support her.

I want to know if ALL her teachers know that she is meant to get a scribe and 25% extra time in both her exams and her Controlled Assessments.

I want to know if she is meant to be getting the same differentiation in her class work as I thought that the additional help in exams & CA's was only meant to be given if it is the SAME help that they are giving every day in class. Has that changed?

I want to know what they suggest for post-16 education for DD, and how the heckity I go about sorting that out.

As our LA says that Secondary DC's don't have IEP's any more, how do I know what her current targets are, and how long they expect her to take to meet those targets.

Why are the instructions to her teachers to ensure that her homework is written down in an understandable way in her planner NOT being stuck to?

How can we approach the Catering teacher to get her to plan lessons better so that I don't only get 24hrs notice of needing ingredients - her 'proper' Catering teacher (who is on Mat Leave) was excellent at taking these things into consideration - would it be possible to somehow broach the subject with her?

Also, the Catering teacher seems to get very impatient with DD and tries to rush her - which isn't conducive to DD doing well in that lesson. The teacher tells her off for being too slow - but DD can't help being slow.

Standing behind her barking 'meat, pasta, sauce. Meat, pasta, sauce' is not going to help her to make her lasagne any quicker - she knew what to do, she just happened to be doing it slower than the other pupils. Because she isn't as quick as the other pupils...

Sooo, anything I might have missed?!

CouthySaysEatChoccyEggs Mon 29-Apr-13 12:11:07

The main dx I had for DD up till now was 'GDD'. Which all of a sudden is 'moderate LD's'...

LeonieDelt Mon 29-Apr-13 14:34:42

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LeonieDelt Mon 29-Apr-13 14:35:24

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Sorry to hijack, my DS is on Epilim to control absence seizures. He had a 5 week rising dose and has been on full dose since Friday. Should his seizures have stopped by now, or will it be a while yet? He's still having several a day, and I don't know if that means the medicine doesn't work, or if I should give it more time.
Anyone here got any advice on this sort of thing?

CouthySaysEatChoccyEggs Mon 29-Apr-13 16:05:14

I'd give it two weeks at full dose, then ask for him to be seen tbh. You have to give the meds a chance to work at full dose first - and what they have decided is his current full dose may not actually be the maximum full dose for his age/weight.

If there's no improvement in a week I would ring the Neuro to get medical advice, see what they say, to put your mind at rest.

Thanks, that's set my mind at rest for now. He's on a school residential this week, I was hoping he'd be under control for it, so a bit disappointed for him on that score.
He's been great about his medicine, he's 11, and taught himself to take tablets so he could have his meds prepared for going away.
He did have a follow-up appointment at hospital but I had to reschedule as it was in SATs weekblush. Fingers crossed the new appointment won't be too long after.

CouthySaysEatChoccyEggs Mon 29-Apr-13 17:42:20

Oh god, SATS...<<Shudder>>. DS1 is in Y6. Say no more!!

CouthySaysEatChoccyEggs Tue 30-Apr-13 20:18:09

Bad day. Not SS. So-called friends. Now EX friends. Will explain later. Am shocked, trying to take in how two faced people can be, and also how evil some people can get to attempt to 'prove a point'. In a way that makes a toddler ILL.

For now, all I can say is that there really are some sick fucks in this world.

I'm taking a guess that they disbelieved a child's allergy and fed said child a banned food to see what would happenhmm.
Someone tried that with DS when he was little, he swelled up wit