Though I’ve never posted here, I’ve been on these forums a lot over the years and reading about all your experiences has greatly helped me both to self-diagnose as well as to see how this issue evolves over time. Let me start with a brief history of my MAV/PPPD experience.
In May 2014, at the age of 22, I’d just finished exams 2 days ago and remember a very WEIRD dizziness hitting me suddenly after dinner. No spinning, but very intense depersonalization/derealization type symptoms which didn’t let up after a couple of days. I was in Canada and went to the GP, was told it was labyrinthitis and would be gone after a couple of weeks. At that point I started researching vestibular disorders online and found this forum as well as Dr Hain’s website. Reading some labyrinthitis/VN forums, it seemed like it wasn’t uncommon for it to take a few months to go away, so I braced myself for a long road despite what the GP told me. The first month, I barely left the house as there was strong 24/7 dizziness (no spinning, but a sense of floating), oscillopsia (visual field constantly vibrates at high frequency), photophobia, phonophobia, eyes had trouble focusing, and a very high pitched tinnitus in my right ear. By the second month, I’d started to push myself to do things (in my mind, I was compensating from the labyrinthitis), and started an office job as a software engineering intern. Though it was a struggle and I’d have days where I felt very out of it, it was doable. I started even playing a bit of tennis, which felt terrible at first but started to get better over time. In fall of 2014, I went back to university. Though I had 24/7 symptoms (oscillopsia, tinnitus, dizziness), they became mild enough to where I started ignoring them and just going on about my life. I had no real impediments from this illness and was able to keep a normal diet, normal schedule, have a high stress job, travel all the time, maintain an intense workout routine, etc. In 2018 I had a brief blip where the symptoms worsened a bit (but I was still able to function normally) for a couple of weeks - at this point I finally saw a neurotologist in NYC who diagnosed me with vestibular migraines. Having been on this site a decent bit, I already suspected this diagnosis when my “labyrinthitis” never fully went away. I started taking magnesium supplements and that seemed to really help. Symptoms reduced again (though still 24/7) and I stopped thinking much about this illness at all.
Then, this past summer, I had my first episode of BPPV. I immediately knew what it was, having spent too much time on Dr Hain’s site over the years, and was able to get it resolved by a professional vestibular PT. However, the BPPV seemed to really kick up my VM symptoms for 4-5 weeks, even after the Epley cured the spinning attacks, and made work somewhat unpleasant, though still doable. The post-BPPV flare-up subsided somewhat, but it seemed my symptoms never went back to their pre-BPPV baseline.
Unfortunately, 4 weeks ago, I came down with an extremely mild case of COVID (second time getting COVID, first time was a non-issue), which seemed to kick my vestibular symptoms into overdrive. I’ve gotten quite bad now and for the first time with VM, afraid to leave my house because it exacerbates my symptoms so much. My symptoms have been 24/7 since 2014, but now just much more intense. I feel a false sense of internal motion a lot of times, can’t handle visual triggers (watching TV, using a computer), and have mild nausea/motion-sickness most of the time. I’ve been off work for the last 2 weeks as I can’t even imagine being on the subway or the office at the moment. It has now been 4 weeks since the VM was triggered and it doesn’t seem to be letting up. I did see 2 neurotologists already and started taking propranolol 60 mg ER last week, but haven’t noticed much difference yet (maybe 5% but not sure if I’m just imaging it). I’m also doing the HYH diet.
So I guess I’m just here looking for words of encouragement and any comments you all might have about my journey. I’m in quite a low place at the moment, because this had become a very manageable issue for me, and yet now I’m worse than I’ve ever been (the intensity of symptoms is also scary). For the first time with VM, I’m wondering whether I’ll be able to continue working, even from home. In the past, with this condition, I was on easy mode and I could do pretty much anything without having a ‘flare’ - eat unlimited junk food, have a very high stress job, travel all the time, drink often, etc. Only drinking to excess, not sleeping enough, and jet lag would make my symptoms worse, and even then only for a day or so (and it was still very very manageable and never disabling). Now, I’m in very poor shape and am really unsure what the future holds for me, especially as I got this illness at a relatively young age. I know that 4 weeks isn’t too long for a flare up, especially after COVID, but I have a tendency to catastrophize, unfortunately.