Epilm (Sodium valproate)

Hi all

I am on the way to the top dose of this drug - and I cannot say its been an easy ride - and neither can I say its been that helpful (yet) But I was wondering if anyone else had gained any relief from at the top level?

Also, how do the side effects go - do they stay the same or do they decrease - or dread to think increase - with time?

Tee x

Hi Tee,

My own experiences of Epilim were not good. I was not on it long as I gained 1.5 stone in weight in the space of 6 weeks and I was eating healthily and power-walking 4 miles twice a day. I'll never forget my mum looking at me one day (as she was exercising with me and of course losing weight) and saying "what in the hell is that drug doing to you?"

So well done for getting as far as you have and I hope that you do see improvement very soon.

Michala
x

Hi

Glad it's not just me then - the weight gain is very worrying. The shakes are getting worse and the tummy upsets are not brilliant, and whilst I am at least awake more (Fluarazine had me like a zombie) the migraine symptoms are not getting any better - I think this will be yet another medication to go

OK made the decision - I am going to email Shanahan tomorrow and ask to be changed over. I am shaking really bad now and feel so rough - what is the point of bad side effects when you still have the migs

Hi Tee I went top dose on this ages ago. My Meds ran like this Pitzotifen and Gabapenton at the same time but went top dose on Gabapentin and the Migraine broke through, Then had to start low dose on a new one I can't remember its name but my poor step son went home to his mum for the holidays and my husband lived through hell for two weeks as I was Evil on it, so went on to Sodium Valproate and got to top dose but really found it no more helpfull than Gabapentin in the end. I had no side affects with it at all and mood was fine but then went on to wean off of them on to Topamax and Flonarazine now which combined have taken my scoe down to average 5 although today I have had pains fit to floor me!! I have Aura nearly every day, my hand is never strong enough to open a jar and sometimes I drag my leg, I lie on my left side in bed and rest my right arm on my body otherwise it goes dead in the night.
DR S has said there are meds to help with the aura and he will help me with that when I email him in May.
I hope the Sodium valproate works better on you. It just seems to be getting the right mix. I uust found the weaning on and off period time hard.
PS I talk a lot lol

Sheena Hulston wrote:Hi Tee I went top dose on this ages ago. My Meds ran like this Pitzotifen and Gabapenton at the same time but went top dose on Gabapentin and the Migraine broke through, Then had to start low dose on a new one I can't remember its name but my poor step son went home to his mum for the holidays and my husband lived through hell for two weeks as I was Evil on it, so went on to Sodium Valproate and got to top dose but really found it no more helpfull than Gabapentin in the end. I had no side affects with it at all and mood was fine but then went on to wean off of them on to Topamax and Flonarazine now which combined have taken my scoe down to average 5 although today I have had pains fit to floor me!! I have Aura nearly every day, my hand is never strong enough to open a jar and sometimes I drag my leg, I lie on my left side in bed and rest my right arm on my body otherwise it goes dead in the night.
DR S has said there are meds to help with the aura and he will help me with that when I email him in May.
I hope the Sodium valproate works better on you. It just seems to be getting the right mix. I uust found the weaning on and off period time hard.
PS I talk a lot lol

Thanks for that cause I was EVIL on Gabapentin too..one friend said I was 'well odd'. I remember feeling really angry and ranting about things that wouldn't normally of bothered me. Jane xx

Thanks for that Sheena - I have now agreed with Dr S to come off the Sodium, going down 1 tablet every 4 days - I just hope it was not as bad as going up

Interesting that you mention mixing the meds - I have not known anyone to do that before. I loved Fluarazine and have it in the back of my mind to go back to that if all else fails - I was ok on 5mg and even better on 10mg BUT as soon as I went to 10mg I would sleep all day - Now I am wondering if I could take 5mg and something.....

Hi Tee

The only time I was ever only on one drug was way back and that was Pitzotifen but that did nothing for me. I have been on 3 at a time most of the past 2 years but now Dr S wants me to go it alone and drop the topiramate but that scares me!!! I will still be on Asprin and have Dosephelin (Bad day today cant think never mind spell) If I cant sleep, not used them for a month though.
Nothing seems to work on its own for me and even a mixture only lasts for a while then the migraines break through :8

Got to say your were right Sheena - I am having a rough week - coming down one pill every 4 days - if you gave me a glass of milk I could make butter, I am shaking so much lol

I think I am going to go a little longer on the next drop and let things settle a bit - problem is Dr S wants me off them before the Botox..

The article I read seemed to point towards Botox working on stress migraines as it relaxes the muscles in the face for an extended period of time so I never considered it so you will have to let me know how you get on with it.
I cant imagine going drug free!!

From the notes I have been sent, the botox will be given throughout my hair, neck and shoulders, it is thought that the treatment blocks pain signals that indirectly blocks the development of migraine. (Bit like the GONB aims to do) They are honest in that they do not really know how it works...... I will of course keep you all informed.

As for going drug free - I am not looking forward to it at all!!!!! So be ready to hear me scream alot

Tee, how did the botox work for you? And did you go drug free? I am on pain meds for my back and I am not sure I could survive with out something, I have gone on and off many times only to be chewing nails. The meds you have in the UK are maybe a little different than our. I was on what I think is our version of Gabapentine and it did nothing for me and the withdrawals were like coming off of street drugs, or what I hear anyway. I was then given Lyrica and it worked but I had to keep going up and up and then came the bad side effects including in ability to think clearly. Getting off Lyrica was like Gabapentine if not worse. It took me 3 months to come off it in very slow increments. When the peripheral neuropathy started earlier this year I started taking Lyrica in very small doses, by opening the capsule. It stops the nerve pain and I hate having to use it but can't sleep with that kind of pain. Topamax is one of the things they use here for Basliar and HM but doctors laughingly call it Dopamax because it makes the patient dopey. Can you believe that? Have heard it several times. So do I want to take it? Been there done that and won't go back to that.

Jerri
PS, I am in love with a lot of you BBC programs, and mini series. I watch them on Netflix a rental service for movies and old television programs.

I am in love with Botox - well its a bit of a love hate relationship but it works lol

I have now had 2 rounds and I really do not like the injections and to start off with I go backwards, for about 3 weeks; then its heaven. Both the severity and number of attacks have gone down. My average pain has gone down from a 6 to 4.9 and is now at 2.6. I still have triptans for the bad days and still use codine about twice a month - I am soooooooooooooo much better than I was this time last year, when I was sleeping 18+ hours a day due to drugs. It is the one thing I think everyone should try. I do know of a few who have not had any success with it, but the masses seem to get some relief.

Here are a couple of threads that document it
lolhttps://migrainetalk.forumotion.co.uk/t23p15-botox-botulinum-toxin-type-a?highlight=botox


https://migrainetalk.forumotion.co.uk/t242-chronic-migraine?highlight=botox

It is still a new trestment here in the UK and a lot of trails are taking place to get the NHS trusts to pay - but I do know it was given FDA approval so a lot of American insurance companies will cover it - it is worth adding to the list to talk to this doc about.

Oh also know what you mean about Topamax - we call it doppymax too - been there, done that, got the T-shirt and thrown it away - not going there again

I was tried on Sodium valproate (don't remember the brand) for a short while. Developed the shakes almost immediately and shortly after my eyes started to go yellow. I was weaned of it pretty quickly.

I've just recently been put back on Epilim, and am in the process of ramping up to 800 mg per day. It's early days yet, but so far I haven't experience the adverse effects I did last time. Because I had hepatitis in my 20's, I've been told that I will have to have liver function tests from time to time, just to make sure all remains well.