I’m fairly new here, I have been lurking a little bit these past few weeks… I’m newly diagnosed with MAV after what has been 5 months of fairly debilitating symptoms (not as severe as some folks here, but enough where I can’t DO anything). Figured I’d share my journey so far…
For me, it feels like this has been brewing in some form for a few years now… prior to 5 months ago, my symptoms were always mild… just a vague wooziness and motion sensitivity that came and went, along with persistent “tension” headaches that were getting worse over time.
Earlier last year I had a few mild attacks which I thought were caused by colds or virus… dizziness and increased motion sensitivity. Since it was getting slowly worse with time, I eventually went to my doctor for it. After a few false starts (had low B12, which was causing a variety of nagging symptoms but not the wooziness it seems), I went to an ENT. They were only emphatic that it wasn’t vertigo because I wasn’t describing BPPV-style dizziness really, just “wooziness”.
Last August I went in for VNG testing to get more info, which for some reason set off a fire storm. I’m not sure if it was the aggravation of the testing itself, the stress / anxiety / aggravation of getting there (trains, city, subways, busy visual stuff I’m not used to), but a day after the test I had a really bad attack… I woke up at 2am motion sick because it felt like I was doing somersaults in my bed. For the next week I was completely laid out… I could only sit in a recliner because laying flat induced nauseating shoving sensations and dizziness. Any kind of moving around was torture from the motion sensitivity and caused severe tension headache, I felt like I was rocking, had mild ear pressure, roaring tinnitus, etc. The intensity of things settled in the coming weeks but stayed much worse than before, to the point where moving too much or going out still induced motion sickness. Weirdly, some things like driving were less aggravating than things like walking / looking around. Usually walking from my car to the doc office was far worse than actually driving there.
In the months since that first major attack, I’ve been stuck in a cycle of moderate symptoms… I’m often very motion sensitive, moving around too much brings on an instant tension headache and strong wooziness. I get attacks of much stronger symptoms every 1-2 weeks that leave me in bed for several days from dizziness and motion sickness. I can always detect visual disturbances like everything is shifting around slightly in my vision… much worse when fixating on far away things (as a result I can’t tolerate my prescription glasses for distance vision).
Testing-wise, I’ve had the typical things: VNG test was normal, neurological tests were normal, head MRI was normal. Many many repeated tests and physical therapy for BPPV lateral and horizontal canals were all normal. Rotary chair test was normal. Everything is saying my vestibular system is fine. My doctors think my tension headaches / wooziness / attacks are all migraine-related.
At the moment my symptoms are still strong enough that I can’t work… I have periods where I am not so bad, and periods where I’m much worse but generally I can’t do much of anything because busy environments aggravate everything beyond what I can tolerate. Going to a grocery store is my “benchmark” test and I rarely leave without a headache and woozy feeling. Certain other visual stimulus also bother me, like busy carpets, bright fluorescent lights, open environments, noise etc. Initially I could not even look at computer screens (I work in software), but that’s improved quite a bit if I don’t scroll too much.
Only fairly recently have I come to understand the wider breadth of scope that encompasses MAV. I know it’s a “diagnosis of exclusion”, and I was fairly dismissive of it at first because I don’t get classic migraines and my symptoms are constant in some form or another. I just recently read “Heal Your Headache” on the recommendation of my doctor, and while I’m skeptical of some of it, by and large it was pretty relatable for my symptoms and provided some explanations that made sense of how migraine could be causing them. For me the proof is in the pudding though, so I’m planning to try the migraine diet the book recommends and continue with beta blockers to try to get my symptoms down to a level where I can be a functioning human being again (in some form).
My main points of skepticism right now are still that my symptoms are so constant and persistent (I know it can happen with migraine but still), and why I had such a strong fallout from the testing, since it seemed to start with irritation in my ears… specifically from the caloric testing using water, my ears were popping and felt very irritated after that.
In any case, I’m still trying to figure all this out and find what makes me better… this forum is one of the ONLY places I’ve found where others have had the weird array of symptoms I’ve had, so I’m glad to have found it.
Thanks for reading!