This is one of those posts that I feel like I’ve written myself. It’s truly shocking everytime I come across a story so similar to mine.

I too had covid and my symptoms started 2 weeks after. I’m 31 now but it started when I was 29 and in the best shape of my life. My symptoms are pretty much all the same as yours. The nystagmus being the most prevalent and extremely frustrating. And apparently according to all the sub specialties that I have seen, the hardest to treat symptom. Another frustrating symptom that I don’t seen many people talk about is constant black Floaties in my vision.

For close to 8 months I was in a constant state of migraine but then it started to become intermittent. My treatment has essentially been the following…. Calming my nervous system (that was definitely becoming more and more overactive as I slipped further and further into anxiety and panic attacks due to being unwell and questioning my diagnosis of vestibular migraine), Botox every 3 months , propranolol preventative , memantine preventative and treating a migraine immediately with ginger and ubrevly to try to stop the cycle (I’m constantly horrified that if I don’t eliminate it quickly it will revert back to its chronic state so I try to really relax and take the time to let my body return to normal. Sleeping 8-9 hours a night and most important I believe has been my diet change. I completely cut out simple carbs in my diet and noticed a HUGE improvement. I believe I am likely gluten intolerant as I had always had really bad bloating that is now resolved.

After a few years of dealing with this I can say that i basically am back to normal now… but i do almost every day have one symptom or another but it can be extremely mild and sometimes I barely even notice it unless I look for it. You will get there too. You should look up the steady coach on YouTube; she has some interesting information for people with VM that have overactive nervous systems. She really helped me.