I thought I'd give an update, I'm doing quite a bit better, and didn't want to be one of those folks who gets better, then just bails for good without imparting any wisdom from my nearly 12-month journey with chronic dizziness. Anyway, I started getting skeptical about my MAV diagnosis that my neurologist dished out to me 9 months ago when I started to look super carefully at my symptoms--i.e. having very few of the traditional symptoms of migraine once the details are examined. Also I did the HEAL YOUR HEADACHE diet and it didn't help whatsover. I think my neurologist took my verbal symptom description at face value and didn't dig deeply enough about what these symptoms actually look like in close detail vs. symptoms of actual migraines as described clinically.
Finally, after like 10 visits to the balance center, ENT, eye doctor, blood test, etc I visited a psychiatrist in June and she confirmed that I have a severe anxiety/panic attack disorder that manifests itself mainly as a swimming-vision type of vertigo (non rotational) and a visual hypersenstivity/derealization that sometimes causes me to see flickering effects and to experience light sensitivity during periods of high stress. She believed there was no migraine mechanism going on at all. The fact that these visual effects were symmetrical, as opposed to the floating amoeba shape that is often described in traditional "aura", were a giveaway. Also, I never had what I or any doctor perceived as a balance problem--the problem was purely one of visual perception. And after visiting a podiatrist, my foot tingling issue was actually a localized pinched nerve from wearing bad shoes with too narrow a toebox!!! Interestingly, some of the other doctors I visited early on also suggested anxiety, but I didn't fully believe them because my symptoms were very physical rather than emotional, now what they said makes more sense, especially after watching Youtube videos where General Anxiety Disorder sufferers describe symptoms similar to mine.
Then I read this book which does a really great job of differentiating between MAV and anxiety-related dizziness (and meniere's too). https://www.amazon.com/Dizziness-Dizzy-Better-Hopkins-Health/dp/1421420902
The final giveaway was when I flew from NYC to London--it was almost a litmus test for whether the problem was MAV which probably would have been triggered by the air pressure changes in the plane. Lo and behold I was totally fine with the pressure change, and once I started diving headfirst in my vacation I felt the first major reduction in symptoms in 6 months. And within a few days of my return to NYC, work got hectic and I was back in the thick of things feeling dizzy, swimmy and lightheaded. From that point on, I knew my problem was chronic stress/anxiety and nothing more. Still, not an easy thing to deal with.
I also looked back very closely at my personal history and found that I while I didn't have a history of migraine, I did have a panic attack history that I didn't even realize. In 2011 I was working in a woodshop and had to use a tablesaw regularly, and as musician too, I was terrified of cutting off my fingers, and any time I had to use the saw, I would get the same dizzy/swimmy/lightheaded feeling. Luckily it would clear up within 30 minutes and didn't overwhelm other areas of my life. At the time I thought it was glue/solvent exposure from being in the shop, but now I'm almost positive it was the same response I have now, but more mild.
Anyway, I'm still having problems, especially during the work week, with stressful events like a salary renegotiation I had a month ago, and with urban driving and walking in large frantic crowds, but I'd say I'm up to 85% on most days; and my weekends I'm at 95%. When I truly and fully de-stress, it takes about 3 hours for the dizziness to simmer down (I assume this is the time it takes for my body to burn off all the stress hormones?)The turning point in my recovery I think was implementing a heavy regimen of cardio. I'll do the stationary bike 3-4 times per week for 30 minutes and get my heart rate up to 140BPM. This helped me beat my insomnia and then things started to fall into place. My psychiatrist prescribed Lexapro, but I opted not to take it as I'm making slow progress on my own with the exercise and meditation, plus Amytriptaline gave me horrible heartburn. I guess it's just a waiting game at this point, but I'm hoping that if I'm aggressive with the exercise and meditation and just have some patience, and am lucky enough to avoid any major psychological trauma in my life, I can beat this completely within a year.
This Youtuber had a very similar experience where her primary symptoms were visual disturbances de-realization and dizziness. https://www.youtube.com/watch?v=o9LG-1JsjGc
I guess the takeaway is that don't discount the role of anxiety. It might be the root cause of your dizziness. Or if you do have MAV, its the mechanism that prolongs the dizziness. Staab wrote an interesting paper where he studied groups of people who's chronic dizziness was purely from a panic attack/anxiety disorder, vs. people who's chronic dizziness had a neurological trigger like MAV or concussion that interacted with their anxiety to cause chronic dizziness. If Whitman and Baloh (and Staab) are correct, true MAV is episodic, but can trigger an anxiety/panic disorder than leads to 24/7 dizziness. And also adrenaline and cortisol are powerful hormones that can make you feel like you are on a bad methamphetamine trip for 6 months straight. At the end of the day, I think my dizziness is caused by these stress hormones creating a chronic fight or flight response that makes my visual perception much more sensitive to movement and patterns and more "vigilant" than it would normally be., as if I was scanning for a predator in the jungle in prehistoric times--except 24-7! Sometimes I do feel the classic stress response in other places like my stomach or chest in the form of butterflies or burning; but the dizziness is the primary symptom. Since heavy cardio has similar effects to an SSRI and can help with neurogenesis, I think it might be the most surefire way out of either MAV or CSD, or at the very least a great accompaniment to an SSRI. Also a brisk 2 mile walk seems to be almost as effective; but the symptom reduction happens around the 25-minute mark.
If you have a true inner-ear issue, you are probably dealing with a totally different scenario, but if its psychological/neurological hopefully this helps. Thanks for replying to my threads; I think I'm signing off for good now, unless I start regressing again or my diagnosis changes!