General discussion - Epilim, Topamax, Neurontin

Sodium Valproate (Epilim), Topiramate (Topamax), Gabapentin (Neurontin) were originally developed to treat patients with epilepsy. But, like a lot of preventative medication, they have been found to help with the prevention of migraine if given in low doses.

It is unclear how they work, they may reduce the capacity of the nerves to transmit pain signals in the brain.


Have you tried any of these? How did you find them?

I tried all of them and despite reaching the max dose on all but the topamax (I just couldn't function on that even at a low dose)..I did my usual fail to respond. But I hasten to add I am not the norm and many people find these drugs extremely useful.

If you have had a positive response please post it to help others I would love to hear of more successes.

J
x

Kala

Dr S has agreed that I can come off the Epilim - how long after you stopped did the side effects take to go?

Also, I have very swollen ankles and knees right now - painful - could that be linked?

and the big question - did the weight drop off naturally or did you have to work at it?

T

Hi Tee,

With regards to the weight it has been a big issue for me over the years, just from trying one drug after another. Topamax was the only one that caused weight reduction although I only last 7lbs. Although my weight was always an issue for me it wasn't for my consultants, they said that when they had my head sorted then they would address the weight issue. I have always exercised and eaten a healthy diet. It wasn't until I saw referred to Prof Goadsby at QS (Queen Square, aka the National) and he showed concern about my weight (the first consultant ever) that I knew something had to be done about it. So I have been battling to lose weight over the past 3.5 years but I can say that I have succeeded in losing over 5 stone and all by myself. It has been a slow process but as you can see I am succeeding.

Back to the drugs!

Epilim after the extreme weight gain (1.5s tone in 6 weeks) I stopped it.

Topamax I have tried twice. The first time I was increasing the dose every 2 weeks and it was helping to keep my hemiplegic migraine at bay as I was writing my dissertation for my degree at the time. However, the side-effects were awful and it would take a few days to adjust to the new dose and then a week later my hemiplegic migraine kept trying to come back. In the end I became extremely paranoid, totally out of my head (more than normal!! lol), the only way I can describe it is by saying that I didn't feel that I was in my own head...very weird. I had to stop driving as a result. So in the end this was stopped.

Dr S then tried it again a couple of years ago just at a low dose in combination with my other meds but the same thing started to happen and so I just couldn't face going through it all again. He then did say that with Topamax what side-effects you experience first time round you will experience every time you try it, whereas with other drugs the side-effects may vary with trying a drug more than once.

Neurotonin: I have been taking for over 3 years. This is the only drug that has stopped my normal 6-8 week hemiplegic migraine attacks. Although I am a chronic hemiplegic migraine sufferer Neurotonin has reduced the intensity of my aura symptoms. I used to go completely off my head, talk a loud of gabbage (honestly! lol) and have strange visual aura to the extend that it felt like the walks were moving in and out. I still have hemiplegic aura of some degree every day but to have complete paralysis (like I experienced back in September and February) is reduced now. However, it does nothing for my chronic pain despite taking the dose about the normal highest dose of 3,600mg a day, I went as high as 4,200mg but due to extreme nausea and dizziness I couldn't take it any higher. So Dr S then decided to see how much I actually needed, so we aimed for 2,400mg a day but by the time I was down to 3,000mg deterioration set in so I went back to 3,300mg. Although I am now back to 3,600mg and have been for sometime now.

I know that Dr S and Dr M decided to try Neurotonin on other patients with hemiplegic migraine due to my positive results, although we have now shown that Flunarazine also plays a part.

Michala
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Hi

Thanks for that = very helpful - as always

Topamax did the same to me - I was in a bad way with it - never again.

However its nice to read that you have had some results with the Neurotonin, I am yet to try this one. Its on the list if the botox fails.

Tee

I tolerated Gabapentin very well so no major probs with this one...I think it's the least problematic side effect wise for a lot of people.

xx

I must say when I started Gabapentin then I felt like I was taking smarties, as I normally experience side-effects even on very low doses. The only major problem I did experience was constipation but I went into hospital on 600mg a day and 4 weeks later came out on 3,000mg! They were able to crank the dose up so quickly because I was being medically supervised.

A slight problem I experience is muscles twitching from time to time, although this has settled a lot over the time I have been taking it.

Fingers crossed the botox won't fail Tee but it is always good to have a back up plan!

Michala
x

Very similar to Michala in side effects with these drugs...

Epilim - also put 1 1/2 stone on, and also got quite bad acne, and nausea.

Topiramate - sent me loopy! can totally relate to the not feeling right, I was totally spaced out, made my symptoms worse, and I kept bursting out crying all the time - even from taking just 1 tablet. Tried for about a week, but in the end the doctor just said to stop them!

Gabapentin - took 3600mg daily for years, only side effect was drowsiness, but thats exactly why I was told to stay on them for so long- for my insomnia! No positive effects migraine or pain wise though, and still just as many hemiplegic type migraines.

Came off the epilim about a month ago, after giving it a good 6 month try. I only realised about 6 weeks ago that weight gain was a side effect- that was the deciding factor in stopping them. I don't see the point in pumping my body full of drugs that do nothing positive for me, but make me fat and spotty!

Met a girl who has had botox, and she said it's helped enormously - I just hope it becomes available on nhs soon!

HI must be lucky on the Topiramate because apart from sever tingling in fingers there has been no real side effects never been on it alone though.
Gabapentin again no side affects but as soon as id up the dose the migraines broke through again so not too effective.
Sodium Valproate was ok A bit weepy to start with and put on a bit of weight but was on Topiramate as well so maybe they counteracted each other as I lost a lot of weight when I stopped the valproate.

Kaz - Did the weight from the Epilim come off naturally or did you have to work at it?

Sheena - so glad the Topamax is working for you. The only benefit I had was weight loss - which almost makes it worth giving it another go lol

Only been about a month since I've stopped them, still just as tubby, unfortunately! (but that might be because I don't feel like I've MOVED for the past 2 weeks...) I eat reasonably healthy, and if anything have been eating much less for months due to nausea.

Also, I've got a really, really bad outbreak of acne - all down my back, shoulders, chest, face, neck, ears, top of arms. I don't know if this is related, or not?

Maybe I should go back on Topamax just to lose some weight, then?

LOL I have not moved in 5 yrs - unless you count walking up the stairs to bed each day lol Oh well back to the south beach diet I guess....

Re the acne - yep - Epilim can cause skin reactions, so hopefully as it gets out your system this will improve.

And NOOOOOOOOOOOOOOOOO you do not go back to Topamax !!!!!!!!!!!

Oh my god!!!
I cant believe a preventative hasnt been sorted yet. It is so unfair that we all have to go through these 'trials and errors' whilst still not getting anywhere.
I havent tried the topomax and too be honest i dont think i will,propranolol made me loopy and feel completely mad! It so scarey isnt it and the fact that dr's dont seem particularly bothered and send you off with a prescription for all sorts not thinking that we have to actually function and get on with famillies and jobs etc!.
Sorry, needed a rant!!
Really hope we all find some help soon xx

Rant away - it helps

On a serious note - have you tried Fluarazine? It is the only preventative which had a positive effect on me - I know its not for everyone - but it is one i would recommend goes on the list to talk to your consultant about.

Tee

Not heard of that one.
My doctors gonna hate me the next time i visit with my folder full of bits of paper and information lol.
xx

Good for you - your GP may not have heard of it - it is not licensed in the UK, but a good consultant can get it for you. Its a calcium channel blocker, this link explains it better.

http://www.gosh.nhs.uk/gosh_families/information_sheets/medicines_flunarizine/medicines_flunarizine_families.html

The only side effect i had was sleepiness and that was only when I went up to 2 tablets. But everyone is different.

Tee

Sleepiness, i'm always in my jammys before the kids these days lol,always end up falling asleep early. I dont think i could get anymore sleepy haha
:0)

figgy wrote:Not heard of that one.
My doctors gonna hate me the next time i visit with my folder full of bits of paper and information lol.
xx

If you do get that response..think about going elsewhere ...you need someone who will listen with respect to an informed patient. A headache specialist is the best bet and will realise that the more you inform yourself the easier it will be to treat you properly.

Now flap all those papers at the doctor with pride and think of us all behind you egging you on lol....maybe that would be a tad scarey but 'hey' lol.

Jane
x

Im the same as Tee. Im on flonarazine at the mo 10mg and its working for me although I mix it with Topamax as well, but my GP has no idea about the drug as I get it from London consultant direct. I live in Devon and travel to see consultant twice a year and email him if I have any probs.
Sheena x

Secret drugs that your doc doesnt know about eh?? what would he say lol!!
At least its helping you xx

LOL Its not a secret now

Seriously though it is a well know drug in the right circles - its just is not licensed in the UK - I looked into this when I started it a few years back and from what I can remember it is a drug which dates back to the 1960's and was invented as an antihistamine to treat allergies and at the time there where other drugs in the UK that did the same job, so the drug company that owned it did not go for a licence in the UK, its a money thing now and therefore too late to go for a licence in the UK, as other drug companies could copy it - its all about drug companies and money! bugger the patient!!!!. Its used by headache neurologist a lot as its the one that shows the most overall improvement. I am not 100% sure your GP will be able to get it for you - BUT you can ask your GP for a referral to a headache neurologist and they certainly will be able to. (there is a list of NHS hospitals and clinics under useful info)

I so love that we all learn as we talk - 'Patient Power'

I am down to one topamax tab a day as coming off of them ,will be going onto epilim though a bit apprehensive about the weight gain issue .
Topamax was definately a bad one for me i `ve tried with it for 5 months and although it reduced the intensity of pain with the migraine headache from 10 to 4-7 and warded of the majority of hm attacks , the side effects are horrendous suicidal thoughts being the worst of them lots of tearfullness ,inertia to hyperactivity (don`t know wether your coming or going basically ,i`d go out for a pint of milk come home 4 hours later and not know wot i`ve been doing ..............but not everyone has a bad experience on these i went on a site that was dedicated to topamax and read through and as well as all the horror stories there were lots of success ones too we are allmade differently so i guess you have to keep trying till you find the one that suits x.

5 months is good going - I was exactly the same on the Topamax as you - its seems its like Marmite - it either likes you or does not. LOL

I did speak to a lady, a few days ago, who started in a few months go and she has not had a mig in 3 weeks - so it can help IF you can cope with those horrible side effects.

Good luck on the Eplilm

Getting the meds right is the longest hardest thing Jacqueline.
I found the time length of coming off one and going on another was a killer, but you do get there in the end. One sent me into loopy mode and I shouted at everyone, so that went straight out the window!!
But maybe that will be the one that gives you no side effects we are all odd and act different to each one. Flunarazine is meant to make you fat but I have lost weight by eating normally!! So there we go.
Plough through them till you find the right one for you and just wait and see how YOU react to them.

Sheena x

Have been on Epilim a week now and so far not having a very good time ,today has been the worst hardly been able to keep my eyes open and have been violently throwing up ,had 2 painfull migraine headaches have used zolmitriptan nasal pump twice this week and other pain killers just about wiped out feel weak and washed out been in bed on and off most of the day today and won`t be making it to work tommorow ho hum ,will talk to Neuro to see if i should carry on or not ,not a happy bunny