Hello. This question is to everyone including the Headway staff. I wonder if anyone has any experience of taking a drug called Topiramate?

[CuriousConnie]

[misswingit]

Hello, I take 50mg of topiramate twice a day for my headaches, they were/are controlling my life (along with everything else) and my old GP decided to put me on it, I know it's actually a epilepsy drug but it helps me a lot, however the side effects are horrible, either they wear off or I get used to them. That help at all?

[CuriousConnie in reply to misswingit]

Thank you for your reply. I started taking 25mg and over past month have increased to 100mg. I have noticed quite a drop in no. of head aches and headpains I now experience which is great and in turn means I'm no longer taking hand fulls of painkillers on a daily basis. Alot of the side effects seem to highten many of my brain injury effects (dizziness, nausea, slow thinking, inabibility to count, spell or remember, poor sleep patterns etc etc), however, I am perplexed by the restlessness and although now still feel fatigued I also feel hyper - to the point of having to exercise myself to burn off energy. I'm also less tolerate to noise and media 'clutter' as my mind can't filter through it, so I read less and watch less tv etc. All very strange but after so much pain I am grateful to take relief even with side effects. Can you relate to any of my experiences? Best wishes.

[headwayuk Partner Headway]

Hi CuriousConnie

Please could I suggest you contact the Headway helpline to discuss this? They can be contacted on 0808 800 2244 (free from landlines) or by emailing [e-mail]

[misswingit]

Hey, it's hard to tell to be honest, I've been taking it for about two years maybe.. Might be wrong there, I also take tegretol to help stabilise my moods, (or something like that) I've been taking tegretol for almost 3 and 1/2 years I think (that's 200mg 3x a day) I'm not good at taking it 3 times so more than often I take it twice, I can't remember noticing side effects from the tegretol however, topiramate made me feel dizzy, light headed, my eyes flicker, and I get a tingly face and hands..

I have lots of the problems you talked about, and sometimes I wonder if they are getting worse each week.. (I'm hitting year 4 now) my inability to concentrate on anything when there is the slightest distraction ( like my entire family who INSIST on talking in the same room as I try to type!) has now eaten away at me and destroyed my patients. This makes me terribly sad.

I sometimes blame my pills. Then other times wonder how I'd cope without them. At the present time I hate the damn things. The thought of telling a future partner I'm dependent on pills to keep me 'tame' if you like, is terrifying, so I aim to revisit any doctor and look for another method, even if its just reducing them.

So I babbled on! You have any worrys like this? Best of luck

[CuriousConnie]

Hello again. I have also noticed tingles in hands and on soles of my feet, my hands are always cold now as well. Last week even when out in sun I had gloves on. The inability to concentrate is why I now struggle to read or watch tv (even more so than before), I do think it slightly worse with the tablets though. I Live with my partner and am fairly isolated so I have different problems to yours, I am frustrated at lack of social contact but struggle to deal with environments if I seek it out. I currently see the hospital Rehab team who encourage me to pace myself and my activities, as I have a track record of pushing myself to point of exhaustion. However, these pills are making me manic and that may wear off in time but right now I recognise myself even less than normal.

As for your worries about future partners, my own viewpoint is that we have a very special insight into how fragile and yet how robust us wonderful Human Beings really are, sometimes the chemical levels inside us need tweeking to work at optimum level and that is simply the function the tablets perform. I'm sure you have already coped with more than most people could ever imagine and so anyone worthy of you will be proud to be with and happy to fetch you a glass of water for you to take your pills with!