I've been having awful side effects with carbamazepine for about 4 months, my doctor said she may change my meds to topiramate?

[Rosalia]

Just wondering if anyone has been on topiramate and has any guidance or info? Thanks a lot x

[McAdoo]

Hi - I'm afraid I can't answer your question because I'm still taking Carbamazepine but I just wondered what kind of side effects you're experiencing? It makes me really tired and has wrecked my memory too I think but I have been told if I want to change meds I have to surrender my driving licence again and having done that twice already I'm not prepared to do it again. Good luck with the new tablets - I really hope its the right solution for you.

Best wishes

Dawn

[ecossaise in reply to McAdoo]

Hi Dawn,

I've just realised that you have mentioned Memory Loss in conjunction with your meds. I have appalling memory loss - I would say I have lost most of the last 35 years of my life in terms of events, places etc but I have been led to believe that it is the seizures themselves which have caused the problem and not the meds? - see my Blog/Question about Memory Loss. What I have been told by various medics is that the memory cells are permanently damaged by the seizures? Any thoughts on this?

[McAdoo in reply to ecossaise]

It was my neurologist that suggested the Carbamazepine itself could be causing the memory loss and suggested a change of meds MAY improve things. MAY wasn't good enough for me to give up driving again so I decided to stick with it - drowsiness and forgetting things aren't too big a price to pay to be free of the complex partial seizures which I have had.

I'm really sorry to hear about how bad your memory loss is - it's such a frustrating thing and others always seem to say 'but surely you must remember?' which doesn't exactly help does it? If I were you I'd ask if its possible the tablets are making it worse for you and maybe consider a change?

Good luck

Dawn

[Hidden]

I've had epilepsy for 39 years and been on Carbamazapine for many, many years. I am interested in finding out also what side effects you are having whilst taking it. Yes, it makes me drowsy and also has probably affected my memory over the years, but I wouldn't change it for any other medicine. I take this in conjunction with Phenytoin which has also done me well. Good luck with new tablets if you change, and I hope a solution will be found.

[ecossaise]

Hi Rosalia - I used to be on Topirmate but am now on Lamotrigine. However the only reason for the change was that, for me, Topirimate didn't work well enough but I had NO side effects from it at all. I know several people for whom Topirimate is very successful and I've since been led to understand that the consultant I had at the time, didn't prescribe a high enough dose or leave me on it for long enough to see if it would succeed. So if you do go on to it -and have no side effects of course - perhaps you should make sure you give it enough of a try.

I know, as well that you are talking about very severe side effects of your present meds and that is not liveable with; but I think most of us would agree that all drugs for Epilepsy have SOME side effects and it is a question of what you consider acceptable and what is not. My Lamotrigine makes me lose my balance and stumble much more often than normal, for example, which can be upsetting and a wee bit dangerous at times but I would rather live with that than the seizures!!

Good luck with finding the right drugs for you.

Margaret

[Rosalia in reply to ecossaise]

How has lamotrigine worked for you? This is another drug which j may be changed to! X

[Rosalia]

Hi guys, thank you so much for your info Margaret! It's very reassuring, my side effects have been rediculous, I have had: severe headaches all the time, feeling sick, upset stomach, cold symptoms (sore throat things like that), weight gain over a stone in 4 months, general weakness, tired all the time even when I get up in the morning I'm still as tired as I was when I went to bed, I suffer from memory loss too, and I've noticed a general personality change, my friends have said I'm not chatty and smiley anymore, I'm lithargic and quiet and apparently I snap more with irritations than I used too? But yeah they're my side effects! X

[Hidden]

I've been on Carbamazepine (Tegretol) for nearly 16 yrs and suffered severe problems with it when I first went on it. I suffered severe constant headaches and visual disturbances as well as tiredness. After about 4 months my neurologist put me on to Tegretol Retard now called Tegretol prolonged release. This cured the headaches and visual problems within a short time of changing to them. I still suffer tiredness but am also taking heart & thyroid medication so can't complain really. Otherwise the Tegretol are fine and no more seizures for last 16 yrs. Worth a chat to your doctor, good luck.

[Rosalia]

Aw bless you, sounds like you've had a pretty rough time! All the info is fantastic though, thanks everyone x

[ecossaise]

Hi Rosalia - Sorry I haven't replied to any more of the comments here but I have been away from home and my computer for the last week. I've found all of the replies here very interesting because it is good to know about the effects etc of all the different meds. PRP2305's reply is maybe interesting for you to discuss with your consultant - it might work for you? You asked about how I find using Lamotrigine - for me, it has been the answer to MY prayers - apart from the balance/stumbling problem that I spoke about earlier it has worked wonderfully for me. I used to have up to 4 major seizures a week plus all the smaller episodes in between - now I have had none for 3 years. Unfortunately I have recently started to have Nocturnal seizures - I have been under enormous stress and my consultant has said that these night time only seizures are a "known" syndrome and has upped my Lamotrigine dose from 450mgs to 500mgs and also put me on 20mg of Valium just before i go to bed to make me relaxed when I go to sleep and so far, fingers crossed this has worked perfectly. As I say, there has been absolutely no return of ANY kind of daytime seizures - not even absences etc - this has been 100% a nighttime problem.

Let us know how it's all going for you.

Margaret

[Rosalia in reply to ecossaise]

Thank you! That's really good to know my go has just changed me from generic carbamazepine to tegretol, he said that j may have less side effects? So far no change but I'm giving it a try x I hope you figure out the nocturnal seizures, must be so frustrating after having success for such a long time! Thank you everyone for your answers x

[Chimbelina]

My son started with Carbamazepine and it sent him racing! It really didn't agree with him and it was quite frightening to see the change in him. Keppra has made him cross and unusually irritable. I wish there was a way of doing without medication that messes with who you are. Perhaps I need to look into the kinetic diet.

[lesloc in reply to Chimbelina]

I have just changed from Tegretol to Keppra its my first week on Keppra I feel better already .....

[poojaprabhu in reply to Chimbelina]

I have been on Tegritol for 8 years. I have been doing Yoga for almost the entire time too and it has really helped me manage the irritability and concentration problem. Learning yoga to calm the brain, from a certified instructor is worth a shot.

[jules1973]

I am on carbmazepine with no side effects however i have tried epilim lamtrogine phentoin topiramate clobazam and a few others to which i have intolerable side effects and one which i am allergic so i am now on zoniszamide along with tegretol i have had some battle in tryin to control my seizures to no avail next step is surgery

[DarrenC]

I was on 800mg of tegretol/carbamazepine and the side effects were extreme, to the point of autism with my mood swings. I was put on 200mg per day of toprimate, and it scared me to death. I went back they increased the toprimate, I tried it for 2 days and simply gave it up. Neurology gave me no response at all about giving It up, and simply increased the tegretol to 1000mg. If your going through a lot of side effects of anxiety, depression constant mind thought questioning everything, making you feel panic stricken. And your memory has become very short term, you need to start thinking about getting yourself down the gym, and thinking heavily about your breathing pattern when working out. Breathing in your nose as you go down on a press up with gravity, then hold your breath as you return up, breathing out of your mouth when you get to the top. And give up caffeine, nicotine which are stimulating your nerves, causing serious problems. And nicotine constantly develops on your brain cells until you say yes to it, heightening the thought as it develops (i.e) the yearn!! which makes it travel over the afflicted area of the brain causing problems. The worlds 2nd worst drug!! You should enquire about a relaxant?

[poojaprabhu]

Hi! I have been on Carbamazepine for the last 7 years with a gap of 3 years in between. I was prescribed the drug due to partial seizures. Currently I have difficulty in concentrating, mood swings, difficulty in remembering stuff, excessive hair loss and also depressive thoughts. I looked up Carbamazepine and all these symptoms, except hair loss, were listed out as side effects of the drug. I feel my hair loss is a result of stress which might have been caused by difficulty to concentrate on my subjects in college. I recently graduated from college. I am in a dilemma on whether I should continue the drug or change it. I have been told by my Neurologist to continue my dosage for 3 more years. I have just begun my career and I'm scared that this will have a toll on it. But at the same time I do not want the seizures to return. i have and episode when I had quit the drug in between. But that point in my life, the gap of 3 years where I did not consume the drug, was the most productive one. I am a really positive person but my negative moments take me so low, they have taken a toll on my health. Please help me out.