The Vestibular Migraine & Secondary Hydrops Community
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New, if you can call 20 years of this new


Hello all! My vestibular doc recommended joining a FB group, but I don’t trust my medical info all over creation. So glad to have found this board!

Short version - initial attack 1998. After the usual tests, MRI etc. he though either basilar migraine, hemiplegic migraine, vestibular migraine. Took about 8 months to narrow it down to migraine. Amitriptyline, xanax (.25 once a day), promethazine protocol for about 7years. Was doing so well I asked to be weaned off. Done. Except doc kept me on xanax Rx for any possible breakthroughs. Had my parents to help me.

2005-2012. What I thought of as good years, traveling (lots), working, driving, Zumba, social life. Still had spells–shopping malls, airports, clattery restaurants, movie theatres, things like that, but I would take half of my .25 xanax and it would subside. Good local support system. Thought the nightmare was over.

2012- big relapse (surprise!) after a busy weekend including unbearably loud live music venue, moving furniture, dusting, cleaning, shopping. Could barely walk for three weeks. Even reading or TV triggered me. Back to doc. Back on ami, promethazine, and Xanax as needed. Dx with PFO (hole in the heart often associated with migraine). Could work. Still have good local support system of friends and family.

2013-2018. More “good” years, but extremely stressful. New doc in 2014 – vestibular oriented. But Too many losses in too short a time. First move in 28 years. Little exercise, sleep deprived, bad diet. Kidney surgery. Too long recovery. Stress off the charts.
2018 - big relapse. For the first time, violent vertigo. In the car. Thought I would never stop spinning. Fortunately happened in parking lot. Screamed for I don’t know how long, hoping someone would help me. No one around. Most of my local support system now dead.
Back to doctor. New one at same practice. Deals only with the dizzy patients. Switched to Valium. Jury is still out on that. More tests. Waiting on results.



Welcome Jo. Hope Amitriptyline can do the magic this time around as well.


Hi, and welcome. Sorry for the circumstances that pushed you in our direction but glad you chose to join us. We cannot be a local support group but I don’t think you would find a better bunch of sympathetic folk who know what you are going through cos they’ve all been there and done that themselves. Certainly sounds like MAV/VM to me but you’ll know more, even if not for sure, when test results come back. Amitriptyline has good reputation. Hopefully it will save you a second time around in due course. Helen


Thank you Helen. I’m glad to find this group too. It helps to be among people who get it.
Btw, I forgot to mention I’m in vestibular rehab for the first time. I’m enjoying the discipline of the sessions plus having “homework” to do.



Thank you GB. I never should have gone off it (my bad), but I’m hoping new doc will find the correct dosing and I’ll be on my way to functional again.



Glad to hear you are getting on well with VRT. Some do, many don’t. Anything is worth a try. I did VRT for six months myself pre-MAV diagnosis and meds. I guess it’s giving you the feeling you are doing something to help rather than sitting around, as my Granny would have said, like a wet lettuce, feeling sorry for yourself. No doubt your therapist will already hv warned you. Whilst under VRT expect all manner of strange things to happen ( queer feelings/more vertigo etc) as your brain adjusts to the changes. Helen