Migraine Associated Vertigo

Posted by katcollins @katcollins, Feb 27, 2023

Hello!
This is my most recent diagnosis. MAV. Does anyone have experience with this? I am not experiencing headache or migraine pain at all. But the Neurologist I saw at Cornell feels that this is causing my balance issues and numbness and tingling. I am also undergoing tests for SFN, as my Rheumatologist and Neurologist feel this may be the cause of my numerous pain and numbness symptoms.
Kat

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@fdona58

It's called vestibular migraine. If you take a look at the vestibular disorders Association website at https://vestibular.org you will find lots of information about vestibular migraines. They even have an interesting article on "BEST MIGRAINE GLASSES FOR DIZZINESS AND VERTIGO". For those of you who also have light sensitivity (Photophobia) along with the vertigo episodes, they also talk about glasses to help with that. I found this website completely by accident one day. My dizziness and vertigo episodes were getting worse (currently experiencing 4 different versions of vertigo episodes - 1. Sensation of me spinning while world stays still, 2. Sensation of the world spinning around while I stay still, 3. 1 and 2 at the same time, and a new one, that's #4 if you're counting that just started in June where I have the sensation of fast forward motion like I was in a moving vehicle only there is no vehicle anywhere around and I am standing completely still. Vertigo sensations 1-3 have been happening since the beginning of January 2024. They are unpredictable. I never know when I will have a vertigo episode, what kind of sensation I will experience or how long it will last( shortest one so far lasted 30 minutes while the longest one so far lasted about 3 days). I don't think they have to do with my ears as I have tried several of the head maneuvers suggested when I have had one and as far as I can tell the only one that the maneuvers do affect is the newest one #4 and they don't make it better in fact they make it even worse. With #4 I have to instantly sit down and hold my head, neck and torso centered and aligned and as still as I can with my eyes closed and let it dissipate. I had finally had enough of my Dr's not listening to me and dealing with the vertigo episodes so on my last visit I demanded that the my family dr make a referral to an ENT(I even brought in the name and contact information for the one I wanted the referral to as my neurologist kept dismissing me when I would try to talk to him about it). I can't work as I am always dizzy which is causing me to be unstable and unbalanced and because they are so random and unpredictable and I never know how severe they will be when they occur I have pretty much become housebound. I went from walking normally at the beginning of December to needed a cane in my own house and a rollator walker for the times I do venture out by the end of December. I finally got an appointment for testing and to consult with the ENT after. Finding the Vestibular Disorders Association website finally put into words and descriptions all of sensations I was feeling during a vertigo episode. In fact, a lot of the symptoms I am currently experiencing were listed or described to a tee in many of their articles. They also had a symptoms checklist you could print and several different versions of logs that you can use to track both the vertigo episodes themselves and other symptoms that you may be experiencing that you can take to the specialist appointment. I see the ENT for testing and consultation the middle of August and hopefully I can get some answers for what I am experiencing and ways to either stop the vertigo episodes completely or at least lessen the severity and impact they are having on my life. I hope the Vestibular Disorders Association website can help others like it did me, even if that help is giving you a way to put into words the sensations you are experiencing so that the medical professionals out there can help.

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My Goodness! This sounds so much like what I am going through. My issues started in November 2023 10 days after general anesthesia for Zephyr Valves. I had visual aura, then two day later "cresendo" vertigo. I have kept a calendar of events so over the last months 86% of the time everyday I have had dizzy episodes lasting from 10- seconds to 12 Minutes & auras both with and without Headaches. Ataxia, unsteadiness when walking, disequilibrium. Have seen three different ENT physicians, no answer and really not very understanding or empathetic. In the meantime, neuro Nurse practitioner with two years experience and have had to wait 2-3 months for neuro appt. I am now researching other cities with large medical centers that may be able to help. So very frustrating and discouraging!

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