Hi all im new to this board and just wondering about a med to ask for when i go to my gp later on today, Zonisamide. Is the side affects just as bad as Topamax, also worrying about the weight loss too, anyone experience weight loss with this med. I have been on loads off meds for Lab now MAV which i have suffered with for over 2 and a half yrs now. Thankyou for all your info xx


My neuro prescribed this as a fifth line MAV med, if the other choices didn’t work. I have not tried it but in his letter he says it is contraindicated in patients allergic to sulphonamide antibiotics and if you have a history of kidney stones. It also says it can cause foetal malformations so birth control must be used. I have not come across anyone who has used it here but I am sure someone must have tried it. Is this your first MAV med and what makes you think of picking this one? x

Hi no this is about my 8th med so far, i have suffered with lab for 2 yrs and now mav for 8 mths, what ever med i choose which are recommened to me on forums online or facebook MAV friends, i get tons off unwanted side affects and bad ones, i have to live a normal life as im a single parent and i work for the NHS full time. I have just come back from my GP and hes prescrib ed Topamax to try until he gets the go ahead for the other med i mentioned as in the uk its not licenced for migraines only seizures, suppose to be a fab med, and ive tried loads. xx

Oh I see, right well what other meds have you tried so far? Did you have labs that became MAV or did you go misdiagnosed as labs at first?

It must be hard working full time with this. Are you seeing a neurologist in the UK? x

I cant actually list all the meds, i know some were Nort, ami, prit thats all i know sorry. I did have lab but it went into mav in march time, now got the pounding headaches. It has been very hard especially when i had lab as i was bad then, but i carried on with work and pushed myself all the way. Ive had about 5 bad episodes in the past 2 and a half yrs, but i carried on the best i can. Ive been prescribed topamax today, but so scared taking this med x

Yes good luck with topamax, it is the next med on my list from the neuro but I am not taking anything yet until I see Dr Surenthiran. I know the side effects are scary but there are some people here who have had a very good experience with it and it has helped them loads. Just type Topamax into the search box and read some older posts about it x

I have seen ENT and Neauro but they chat to you and send u on your way with a prescription and no follow up appt. I have actually got another appt nxt week with the neauro team for my headaches, so will see how i get on there x

Yes i read some the other day, i think i may have to have time off work thou , will see what im like. What symptoms have u left off MAV !

I see your on Nort, i was on this for about 4 mths , helped me alot but i put on weight alot, so came off it about 6 wks ago, great med thou x

Yes I had a very bad relapse this summer and I went on Nori 2 months ago. I have not had weight gain yet, in fact I lost weight due to this illness. I have a long list of other meds to try but I am getting a second opinion before I take any more. My main symptom is dizziness but also fatigue and neck, along with some scary vertigo attacks. I have had this 3.5 yrs now x

Wow u have been through it aswell like me, i used to get dizzies all the time 24/7 for about a yr when i first got lab, it was constant. Yes best to get second opinions i think, but with my gps and i have loads they dont seem to know alot about mav, i seem to know more lol. Yes i know some people who also lost weight on nort, but also alot put on aswell, couldnt deal with that as im trying to loose weight x

Yes I heard some people put on weight. I tried a beta blocker for a few days and it made me really hungry so some meds probably would make me put on weight. I wouldn’t be that bothered if it made me better though. I am 7 stone 11 pounds at the moment so I can afford to put a little bit on. I have been through it, you’re right and no GP I ever saw has ever heard of Migraine vertigo x