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Hi Everyone! So glad to find this forum. I have Vestibular Migraine with DAILY constant dizziness, unsteadiness, “mini-vertigo” feelings of movement, tinnitus, stiff neck, ocular migraines, mild to medium headaches on the right side of my head temple and behind my right eye. 2 years ago this all started with room spinning violent vertigo which was diagnosed as BPPV. It left me with dizziness and I was diagnosed a couple months after that with Endolymphatic Hydrops and put on a low salt diet. Nothing helped. Triaminaterine made me dizzier and gave me heart palpitations. So went to see a specialist in San Francisco who diagnosed me with VM Nov. 2020. Took Effexor 37.5 mg for 3 months. It helped my unsteadiness considerably but none of the other symptoms above, which I have daily. My heart started beating irregularly so my doctor told me to stop Effexor weaning off it for 1 week by taking it every other day and stop. I’m on the last day today. He wants me to start Verapamil next. I have been taking B2, Co-Q-10 and Magnesium but they have not helped. Since I have all of these symptoms daily I cannot determine any triggers since I have symptoms all the time. Thankfully I do not have debilitating migraine headaches; they have always been mild to medium, but still wear me down. I am beyond frustrated. I eat a very clean diet of organic foods and no additives, etc. I think one of the things about this that bothers me the most is constantly trying to analyze my condition and figure out why I am feeling the way I am feeling. It is exhausting. Thanks for being here :slight_smile:

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Welcome. Your symptoms sound quite familiar … mine started the same way. Violent spinning. Horrendous.

I think you still need to play around with different meds to see which one fits. Daily symptoms are just the worst! And no one understands it unless they have experienced vertigo. Great to hear about your diet. Are you off caffeine and alcohol?

I am guilty of over analysing this condition. The amount of research I have done is ridiculous and not altogether beneficial in many ways. It plays to my anxiety.

My bppv returned today. On a massage table no less. How did the Epley make you feel?

Good luck on the journey and may it be a short one to feeling well from here.

Hyper vigilance is a bad thing. I think Dr Teixido was spot on when he wrote there is a pressing need to get VM under control fast. All that overthinking just adds to the anxiety and things develop in a vicious circle.

If you find your diagnosis meaningful just go for it and throw everything the specialist suggests at it and hope. It is an extremely frustrating condition to develop. Try to relax as much as possible, whatever treatment regime you try it can be several months before you begin to see results and sometimes longer because if the trial and error element but keep heart and poof on. Good luck.

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It is so insidious. I didn’t realize what was going on until I had unrelated surgery and laid flat for a few weeks without using computer. I felt amazing. Testing pointed to migraines for me but it turned out the headaches were purely induced by my trying to hold my head still to avoid dizziness. One thing you didn’t mention was vestibular physical therapy. Find one listed on Veda org. Besides meclizine (which is not a solution) that’s where I found relief from daily symptoms. It’s not quick but it reduces the frequency and duration so you can start to identify triggers. And really helped with headaches.

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As far as always thinking about it that is a struggle. Consider a symptom tracking app. Gives you a place to put it constructively. Decide what steps you are going to take and live your life as normally as possible. Someone suggested “sneaking up” on difficult activities as opposed to powering through. Take that break or step back if you feel really bad but try again the next day. Great book on Amazon “finding balance”

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“Finding Balance”
More recommended books here
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The efficacy of VRT is contentious ( POLL: Effectiveness of Vestibular Rehab (VRT) - User Polls :bar_chart: - vestibular disorders support forum). I personally did not find it helpful (in fact it made me feel much worse), but glad it helped you. There are plenty of existing Topics where this is debated.

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The book is discussed here: Have you read the book “finding balance?” - Information Vault - vestibular disorders support forum and here: Gabapentin anyone? - #60 by Jem

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My understanding is that if you truly have migraines vrt won’t help. If it does help you may not need all the migraine drugs. The doctors are not great at distinguishing. Neurologists see migraines. Ent see menieres. Etc.


That’s sounds about right although see more about my views on ‘migraine’ in #research-theories-controversies. I look at migraine more as a symptom of underlying sensory instability than the cause. (That Category requires Trust Level 2 gained from sufficient positive engagement with forum over time)