Okay 4 weeks in my relapse now and starting to slightly worry… did Ami for 3 weeks and have now switched to Pizotifen for a week. Symptoms still there it’s almost like a cold that won’t shift anyone feel like that sometimes ? At present have mainly just movement dizzyness like that flaming spring sensation every time you walk and legs tense up, stiff neck etc ! I really want to try Topamax soon but i’m really scared of side effects, especially losing my hair as i’m quite fond of it. Anyone took topamax and have mildish side effects i.e no hair loss ?
First thing I think Alex is you may want to give your current meds a bit more time to work unless you are having a serious SE. Hang if a bit & if it’s no good, talk to your doc about Topamax. For some doc’s Topamax is now a first line drug for this ailment so you shouldn’t have a problem if you need to switch. If you need ammo to take to your doc, print out some of the info from links here & take them with you.
Did you read the 10 Commandments for MAV, or however it is titled? A thread none here should miss.
I just started Topamax. For the most part you start at a very small dose, to reduce SE’s. You will in all likelihood still have SE’s, when you start and each time you increase your dose.
You can look at threads I’ve started people have given me great advice on how to increase the dose slowly. I’m not sure about hair loss tho…never heard that one before.
Good luck, I am up to 25mg a night and feel pretty okay so far. A bit of head motion dizziness and some problems with loud noises, but not much else so far.
Kathleen
Alex,
Topamax is def the kind of drug you have to get used to. I am only about two and a half weeks into the trial. What I can tell you is this: it makes me feel tired, out of it… I am hoping this wears off as I will not be able to go back to work. Also, be prepared for some shitty days. The first three where ungodly. Your symptoms will be screaming and the fatigue is awful, BUT it does get better. However, :twisted: at 2 weeks i havent noticed a change in symptoms. My doctor says, as well as the drug pamplet, that it may take two to three months to work. I am sure going to try. Good luck to you. Oh and no hair loss for me thank god! Id die…im a salon manager…ugh thatd be a nightmare!
Im on 25mg with NO side effects. Its been easy so far!
Hi ichbindarren,
Is it helping at all¿! How long have u been on it for?
Thanks for feed back peeps, I’m going stick on these Pitotifen for couple more months then try the Topamax I think… running out of options. I normally get short bursts of extreme MAV but this time been a month and no improvement Grrrrrrr… So flaming annoying. Wish some top scientist could invent a med that would actually work. Hope your topamax works soon, glad to here no hair loss hope I’m as lucky ! 
— Begin quote from “BeautifullyBroken”
Hi ichbindarren,
Is it helping at all¿! How long have u been on it for?
— End quote
I have only been on it 1 week, and 25mg is too small of a dose to do anything.