Does this sound like MAV?

Hello all,

Most of my life I’ve had migraines, but almost always they can be controlled with advil. Usually they only become debilitating when I happen not to have advil around. About 3 years ago I had vertigo, which lasted a couple weeks followed by about 2 months where I was vaguely dizzy and nauseous, but without true spinning. My GP saw I had nystagmus and pronounced it BPPV, but none of the exercises helped.

This past summer I had an even worse bout. For about 2 weeks I had vertigo and a general disequilbrium where I constantly felt like I was being pulled to the left. I had nystagmus, occasionally roaring tinnitus, and nauseousness. I saw my GP, who once again said BPPV. I felt nauseous constantly, but could hold at bay the actual spinning by focusing. The second I tried to rest or lay down the spinning would start again. This happened right before a trip to Florida, and somewhere along the 14 hour drive I started having anxiety attacks over all the spinning and nausea and and ended up in a hospital where they ended up admitting me (high d-dimer) and ran mri’s and CT’s which were clear except the brain MRI which showed small hypersensitivities consistent with somebody who has migraines. After the first couple weeks I once again just felt vaguely dizzy and like my eyes can’t focus right. I saw an ENT towards the end who thought it might be Meniere’s or MAV. They got me in for a VNG, but not for another 3 months, at which point I was symptomatic. The VNG did show something indicating it was a central vertigo problem.

Now I have once again have vertigo, complete with my friends nystagmus, nasuea, and periods of roaring tinnitus. I could feel it coming on for a day or so ahead of time, where I started getting tinnitus and could feel a tension in the back of my head. Once again I don’t get any of the actual vertigo or nystagmus while I’m moving about and keeping my eyes busy, although I still feel nauseous all the time. However, when I try to rest or sleep my eyes start going crazy. They bounce back and forth left to right, and then sometimes spin up and to the left, which is how my vertigo almost always seems to spin. I even get woken up from a dead sleep with these episodes.

In between these two episodes I didn’t have any dizziness, but I did start developing a problem where I feel faint and short of breath AFTER exercise. I also generally felt like my eyes couldn’t focus right, and often felt fatigue. I kind of feel like it’s because something is still off with my vestibular system and my body is getting fatigued trying to compensate.

Does this type of episode seem similar to what any of you have with MAV? The ENT thinks it’s MAV and out of her realm, the Neuro they sent me to says I’m neurologically normal. I just think it’s odd I don’t actually have any headaches at the same time as the vertigo. My GP just thinks its anxiety, but I’ve never had anxiety issues in the past and it’s hard for me to believe anxiety would cause my eyes to go crazy while my heart rate chills 60 bpm. (I never have tachycardia or sweating or anything like that)

I’ve tried diazepam, meclizine, lyrica and amitriptyline (which had helped my fibromyalgia great for 10+ years but I suddenly started developing orthostatic presyncope issues on it recently). I’m just not sure who/where to turn to next at this point. It’s really affecting my ability to work, but more especially to interact with my family because I expend all my energy trying to stay upright all day at work and end up crashing when I come home.

It sounds like classic MAV to me. My symptoms are a lot different, as I never get a break from the episodes and have constant dizziness. However my current neurologist is thinking that I don’t have MAV, or maybe did initially but not anymore. Thankfully I’ve never had nystagmus, and I hope to never experience it. I do go through periods where my eyes hurt, burn, and have trouble focusing and see double vision. Best of luck!

Yes it sounds absolutely like MAV. I went to see an oto-neurologist yesterday and she told me that the reason so many of us are misdiagnosed is because vestibular migraine, or MAV, is because it is only in the past YEAR that it has been added to the recognisable diseases in the guidelines for neurologists! They have known about it for years and have had to fight to get it officially registered so GP’s and others have not known about it or would not accept it. I have struggled for over 11 years and have only just seen the oto- neurologist because 4 other neurologists decided I was suffering from anxiety. I have every single VM symptoms and yesterday I was told I was very good to fight through it and try to carry on as normal. I have lost a ridiculous amount of weight because one of the symptoms is gastric stasis so I very often cannot digest food so can’t eat as the food goes nowhere. You must try to find an oto-neurologist who understands the disease. You are not alone in your search, or alone in the frustration of not finding the right help, but it is out there and I am sure you will find it. I don’t know where you live but if you post a question about oto-neurologists in your area I am sure someone on this forum will be able to help you. I wish you all the very best.

It sounds like classic MAV