Great stuff! What leads you to believe you still need the meds?
I stopped for a few days in the spring and again in summer and immediately got classic migraine.
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.
It doesn’t help me sleep at night unfortunately!
amid all the misery, I thought I’d share a ray of light.
I have had no more that an hour’s 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, couldn’t 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 didn’t help much, although time did. Last year came off gabapentin and started candesartan, and haven’t looked back since. symptoms have just dropped away and stayed away.
i’m still on 2.5mg pizotifen, 4mg candesartan daily; i hope to titrate off some time this year, but i’m 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 I’ll 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. you’ll get there; eventually you’ll find the right meds, the right lifestyle; the right diet, and you’ll recover. keep trying. don’t give up.
in December i went on every ride at Universal Studios, Florida. i didn’t 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 i’m in lockdown, so i can stay in and do anything i like.
don’t worry, be happy, eventually you’ll get better. give it time.
stay safe, people
Thanks so much for the update! So pleased for you!
So you are basically a MAVid Recoverer after alll?!
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. I’m about 70-80% of what used to be normal. I’m functional and okay, and don’t get real bad too often. I’m 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 “Black care rarely sits behind a rider whose pace is fast enough.”
Glad you are mostly better and have figured out how to manage your brain. Keep riding onward.
This is amazing news. Congratulations and long may it last.