Comment by dumbfounder | Hacker News Reader

Comment by dumbfounder | Hacker News Reader

I have been diagnosed with vestibular migraines. No pain, just dizziness and brain fog and vision issues (feels like my eyes don’t point in the same direction). I also have a doctor that says I have symptoms of mold exposure (lots of correlative testing and also house testing and remediation). I have also been diagnosed with temporal lobe epilepsy by my neurologist, but my mold doctor says that is consistent with mold exposure. I also have a vestibular degradation, one side of my balance center is damaged. I think all of it is related and linked by inflammation. I do think that mold is part of the story, but definitely not all of it. Anti seizure medication helps a lot. Ubrelvy (a gepants) also helps a lot. Getting the right kind of sleep and exercise and staying hydrated also all help. I am nearly 50 and this a new thing that has happened in the last 2-3 years. Was not fun to go through this on the tail end of running a startup. The brain fog was debilitating. I am now 80% better with meds (and a shit ton of supplements) but still on the journey to figure out how to get back to normal and off all the meds. I do think it is inflammation related but it could be one of a zillion things, or a combination of many.

Wife has been struggling with vestibular migraines for about 20 years. It really came to a head about 5 years ago, and we spent the following three years seeing specialist after specialist and trying around a dozen different medications. During this time she had daily flare-ups and missed a lot of work and spent most days in bed or on the couch.

What ended up working in the end? We finally got into Mayo, and they suggested an SSRI (at a fairly high dose). She also figured out that she has a few food triggers (yogurt and freshly baked bread are 2 bad ones). She also discovered she has double vision, and now wears prism glasses. We think the combination of double vision and whatever brain chemistry imbalance she had was "overloading" her vision and vestibular systems, and she would basically just shut down. Treating both of those seems to have (mostly) alleviated things for her.

I completely understand what you've gone though and how frustrating it is, especially given the very vague criteria for diagnosing and treating vestibular migraine.

Have you tried vestibular rehab? Essentially a series of eye tracking + neck mobility exercises that support the visual and vestibular system.

Yes. A lot of it. It was maybe 10% effective at best.

The way one ENT described it, I have 40% degradation on one side. If it’s constant, your brain adjusts and you are essentially ok. If something happens to vary that then your brain can’t adjust. My theory is that you add inflammation or migraines or epilepsy or all of it and the brain can’t compensate.

Reply on news.ycombinator.com