Basically my symptoms are only really bad if I’m under intense fluorescent (CFL) lights or very loud noise (like if I’m at a concert). Restaurants and conference settings with lots of screens are the worst too though. I guess it’s the amount of power that those lights generate. It affects my optic nerve that I guess cascades to other nerves that are connected in the brainstem, like the vestibular nerve. Anyway, it would be fascinating if it weren’t so debilitating. My worst symptoms are a feeling of being at a slant when walking, feeling like my head is being pushed down or forward, bouncing like on a trampoline, feeling of intense head pressure and behind the eye pain etc, a dizziness that feels like you’re constantly moving but not the vertigo that some people get where they are spinning, it’s like a rocking. sometimes I get pain that would radiate down my jaw and in my face if I was exposed to too much in a day. Then a powerful migraine, but this has only happened more that I’m back in the USA with more CFLs.
I was living in Jerusalem for work for a year with this (the second year i had it…basically I’ve never really taken time off work…I just manage to push through) and they had less modern lights, and I did better. MAV may be some type of trigeminal neuraglia from a viral attack, maybe all of it is nerve damage and overactive nerves caused by that attack. I had my symptoms start abruptly in 2013. The drugs that slow down nerve activity like gaba help - that’s what topamax does and valproic acid. The antidepressants apparently stop your body from receiving the nerve signals in the same powerful manner, by some alteration of serotonin, which controls pain response I think, I don’t know. Nort. also helped me at 10mg per night but I was gaining weight. I’m very sensitive to drugs apparently. I tolerate gaba very well.
I take 200mg 3x a day of gaba right now but may go back to 100mg 3x a day because it makes me think a little slower I believe… not sure. I just feel a bit sedated on it at any dose so lower is better. it helps give me my sense of stillness back. The other supplements I’ve started taking help a lot too but I didn’t phase them in , so I don’t know which one is helping the most. B2 seems to be very good at 400mg a day, magnesium glycinate at the same level. I 'm scared of butterbur, but I might start petadolex if it seems worth it. It does seem to be safe, but basically the certification was taken away by Germany for some reason for its safety and it’s banned in Switzerland, so although I’d really like to try it, I’m still hoping to get my symptoms under control with magnesium, constitent use of B2, and mag glycinate. CoQ10 is good too it seems, but I’m cutting it out now to see if it made any big difference. Hope you feel better, Michelle!! Keep me posted if you find something that really works for you… xx