Great stuff! What leads you to believe you still need the meds?
Good Q.
I stopped for a few days in the spring and again in summer and immediately got classic migraine.
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Well if you are tolerating them with minimal side effects then no rush. Personally I got sick of the slow bowel so eventually the off meds symptoms were less than the on meds!
Keep up the good work! 
Glad to hear again someone is going great! May I ask how is your sleep? Do you have any problems?
I sleep like a log - Pizotifen does that!
Have you gained any weight on Piztofen?
Yes, loads. Small price to pay for getting my life back. I have lost most of the weight now.
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It doesnāt help me sleep at night unfortunately!
Great news!
Greetings, Earthlings!
amid all the misery, I thought Iād share a ray of light. 
I have had no more that an hourās worth of very mild symptoms this year, maybe once or twice felt a little fuzzy-headed. aside from that, i have virtually forgotten about MAV (MAVid?)
so, for those of you too young to remember, in 2017 I suddenly got MAV bad, having never really had migraines before; it took ages to diagnose, i felt like doo-doo every day, was completely unable to do most things, it was horrible. i tried amytryptiline, couldnāt bear it. after a few months i found Dr S, who put me on pizotifen, which started to help right away. i got about 50% better then stayed stuck at that level for a long time, Gabapentin didnāt help much, although time did. Last year came off gabapentin and started candesartan, and havenāt looked back since. symptoms have just dropped away and stayed away.
iām still on 2.5mg pizotifen, 4mg candesartan daily; i hope to titrate off some time this year, but iām not in a hurry as they seem to have settled into giving me no side effects now (unlike at first).
anyway, happy days. 
now all i have to do is stay the fuck at home and avoid coronavirus, and hopefully Iāll be ok!!
for those of you who are in the dumps with this, i remember in 2017 clutching at straws and wondering if i was condemned to a life of MAV misery. i found these success stories really gave me hope whne nobody i knew had any idea what i was talking about. so -soldier on. youāll get there; eventually youāll find the right meds, the right lifestyle; the right diet, and youāll recover. keep trying. donāt give up.
in December i went on every ride at Universal Studios, Florida. i didnāt feel any more sick than anybody else, and a lot less sick than some. that was the biggest test. even the virtual reality roller coaster rides were fine.
now i can go out and do anything i like. except iām in lockdown, so i can stay in and do anything i like.
donāt worry, be happy, eventually youāll get better. give it time. 
stay safe, people 
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Thanks so much for the update! So pleased for you!
So you are basically a MAVid Recoverer after alll?! 
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Really great to hear. Wow!! Rollercoasters!!
I like reading about positive success stories, thanks for sharing. I think it is important to remember that Vestibular Migraine seems to be unique for every character who gets its and so are the recovery solutions. It needs experimentation.
My two main solutions have been the Heal Your Headache diet and my therapists balance and visual exercises. Iām about 70-80% of what used to be normal. Iām functional and okay, and donāt get real bad too often. Iām avoiding prescription meds. I find that I best when I am active and working my balance and vision training, skiing or biking or just walking while twisting my head back and forth. The visual training seems to keep my brain on its toes. Teddy Roosevelt wrote in his diary āBlack care rarely sits behind a rider whose pace is fast enough.ā
Glad you are mostly better and have figured out how to manage your brain. Keep riding onward.
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This is amazing news. Congratulations and long may it last.
Quick update, a few months on.
As Dr S was closing his clinic in the summer he gave me instructions to reduce meds gradually.
I cut down from 2.5mg pizotifen daily to 1.5mg daily, but after 2 or 3 weeks I started getting balance issues again. I went back up to the full dose and these issues faded after 3-4 weeks. It was weird. When I got the symptoms, I felt those odd moments of imbalance, and came close to falling over a couple of times, and a bit of tinnitus, but fortunately not full-on dizziness. And because Iād been through it all before it was just an annoyance, but with none of the terror of it happening the first time. Because I knew it would get better again. Three months on, back on the meds, no recurrences. I might try reduce dosage more slowly in spring. Maybe 1/2 a tablet at a time instead of one then two tablets in quick succession. Iām not too worried about it.
Anyway, Iām fine, almost no symptoms (occasional tired fuzzy head after poor sleep or long journeys) but nothing major at all. I feel great nearly all the time. Mountain biking, golf, hiking, skiing - all no problem as far as MAV is concerned. Even working for hours at a laptop is fine every day.
And I know that even if symptoms do recur from time to time, theyāll be a bother, but not a terrifying āwhat the hell is wrong with meā ordeal.
When I first got this and fell under the MAV bus, I honestly never thought Iād be well again, but I am.
Good luck, everybody, have a grand Christmasā¦,!
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Hi @gidlabu, I have been following your story as I too am on Pizotifen. Only a couple of months in this rotten journey and it seems to be working for me too. I seem to be 95% most days and the side effects are nothing too bad.
So glad youāre still doing well. Iām always interested in getting off meds. Do you always have to stop even though itās working so well? I would be too nervous I think. No one wants to go back to that god awful hell intense MAV is.
Have you found it loses effectiveness? Iāve read it often does which is also not comforting.
Best wishes and I hope you continue to feel well forever more!!
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Goes to show how the meds can completely keep a lid on this even when it is lurking underneath. Great progress and merry Christmas !
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Still seems to be working after 3.5 years. I think eventually Iāll be off it, but might need it again if it ever comes back
A truer word was never written! The meds just (albeit it a very necessary ājustā) mask the symptoms. The condition doesnāt go away. Getting some QoL back is what counts.
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