My understanding of compensation (having experienced it in the ātrueā sense after my BPPV episode), is that it occurs over weeks & months rather than hours. After my BPPV was fixed with the Epley, I still had positional dizziness when my head was turned to my left side (BPPV side) and when facing straight down for a few weeks. This positional dizziness gradually went away as I did the habituation exercises, but my VM/PPPD symptoms were unchanged throughout this process.
What I was referring to was simply the fact that a lot of the time, the VM symptoms seem to reduce in intensity (over the course of 1-2 hours) if I āpush throughā the unpleasantness, which doesnāt seem right somehow, since it seems like the migraine should be further ātriggeredā rather than alleviated. Just wondering what other peopleās experiences are with this.
For sure, I was dizzy/imbalanced for 3.5 years! Now I hardly ever have issues with my balance, nor vertigo. But who knows if thatās a mixture of compensation and other improvements? Was there something neurological that has recovered? Was it an inner ear improvement? I donāt think I will ever get an answer.
Iāve taken propranolol for a total of 4 weeks now - 2 weeks at 60mg, another 2 at 80mg, and just today jumped to 120mg extended release.
Overall Iām a bit better (maybe 30%), although thereās a lot of fluctuation. I am able to work on a screen from home (though I definitely have a mild to moderate amount of discomfort while working) and Iāve started heading into the office for half days 2x a week. Still havenāt tried watching TV. Sometimes when Iām at home and not too active, I can have a couple of hours where I feel 75% back to baseline, but it doesnāt stay that way when I get more active or do something visually triggering (like TV). However, in general, I donāt feel house bound anymore - I can function in shopping malls and stores, I can move around the city via public transit, and I can hang out with friends at my home or theirs. All of these activities cause a fair amount of discomfort so I donāt do them a lot, but I no longer feel like Iām having a seizure and/or panic attack when I attempt them. I still randomly manage to trigger terrible episodes of dizziness & depersonalization a few times a week, but they seem to be shorter lived - the worst passes within an hour and then the hangover lasts another few hours.
So I seem to be making progress, although it isnāt quick. My 24/7 symptoms are still quite elevated compared to pre-COVID but theyāre starting to become less intrusive. The really bad episodes of dizziness/depersonalization are settling down quicker. And the light and sound sensitivity is showing a meaningful downtrend also.
Now that Iām at 120mg ER propranolol, I plan to stay at this level for the next 4 weeks and then re-assess whether to try another medication or stay on the propranolol. I am getting better, but I am wondering whether itās the propranolol or simply time thatās making the difference.
It is so interesting what you wrote. The other day I told myself ājust accept and continue, keep walking,ā and it worked. I got home, no drama. Maybe both feed each other VM and anxiety. It is a circle.
@nycsg Completely recognize this! Chronic VM, varying in degree (no head pain). Feeling completely disconnected from the environment while walking. Being ultracareful about foot placement. Wondering why Iām not falling to the ground! But I keep walking - though completely unenjoyably - and can even say hello amiably, as required. But itās all a dream. Wondering, surely I look like a zombie, wonder if people will rush over to help or call 911! But, of course, I look normal (ha!). I think I dislike the feeling of disconnect more than anything else.
It is so devilishly hard to convey the mix of symptoms/experiences to anyone other than another migraineur.
Hello everyone - just thought I should give a positive update. Iāve been at 95-99% now for more than a year and feel that I am very stable and fully back to my normal life - even living a very stressful life in NYC with a very demanding hedge fund job and lots of fun and activity as well.
Pretty much all my symptoms have been gone this entire time and this condition stopped affecting my life a long time ago. Iāll still have the mildest visual symptoms from time to time but it is almost not noticeable anymore.
For my med stack - itās 112.5 venlafaxine, 200mg lamotrigine daily, and a monthly Emgality shot. Iāve also quit caffeine. Besides these interventions I have literally done nothing else to change my lifestyle and I have basically no side effects from any of these medications - theyāre safe to continue taking forever so I am not planning to stop them anytime soon. Iām in generally great cardiovascular health and have built up considerable strength from weightlifting - my resting heart rate sits lower than 60 and my blood pressure is completely normal, as are all my other blood markers. This is all to point out that the medications donāt seem to be having any adverse effects on me and have pretty much eliminated my migraines & dizziness and all the other nasty symptoms
for those who come in and read the horror stories, I hope this brings you encouragement - there is a way to stabilize your brain, just need to keep searching for it. I was at 85% for a while and then adding the lamotrigine is what I felt really unlocked the rock solid neurological stability Iām feeling to bring me where I am today.
also for what itās worth, this condition became very bad in December 2023 and by April 2024 I was back to my normal life. While I was still dealing with symptoms at this time, they eventually went away as well as I mentioned - it was about finding the right medication cocktail. All that to say that if youāre someone who just started experiencing this - know that itās very possible to get back to your life in just a fee months and even almost eliminate this problem entirely after 8-16 months. Mostly it took a bit of time to adjust med doses and add/remove meds.
