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

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

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

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

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

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

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

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

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

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

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

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

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

Happy 40th to Leonie's DH.

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

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

Really pisses me off tbh.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy 40th to your dh. smile

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

... and in my news ....

Ds got his funding for the indie school! grin

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

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

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

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

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

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

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

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

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

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

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


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

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

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


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

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

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

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

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

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

and that new house would just be amazingly awesome.

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

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

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

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

((hugs)) x

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

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

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

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

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

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

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

OMG, Moose! YAY!!

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

That has made me cheer up! grin

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

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

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

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

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

six means sx

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

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

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

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

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

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

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

ooh good idea re the thread. will look later.

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

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

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

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

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

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

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

<<Tears hair out>>

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


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

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

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

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

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

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

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

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

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

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

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

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now