Need help - weird symptoms

Hi,

unfortunately my case is a bit complicated:

I have mainly visual symptoms (visual snow, severe afterimages, light sensivity, flickering etc.) that started after a really bad migraine attack 5 years ago and have progressed ever since.

I also get a bit of balance issues and vertigo, but so far I can handle this. However, the rocking sensation, which is most severe when lying in bed, has become worse recently and makes it difficult for me to fall asleep. Since a few months I also have constant nausea.

Though my main problem is still the visuals everything seems somehow connected to it. For instance: If I look at a weird pattern, I instantly get visual discomfort, the rocking becomes more intense and I feel even more nauseous.

I don’t get headaches any more, sometimes I just feel some throbbing pain on one side of my head but that typically lasts only a few seconds. Maybe a sign of ongoing, but painless migraine activity?

Needless to say that all neurological tests have been unremarkable. Doctors are puzzled, but think it’s somehow migraine-related. The next med I’ll try is mirtazapine. It’s obviously not the first choice for treating MAV, but maybe it can at least help with the nausea.

Does this sound like MAV? Anyone who gets both - vertigo/rocking and visual symptoms? And anything that helped? I’m getting a bit desperate because I’m running out of options and everything just gets worse.

Would love to hear from other people!

my case feels complicated too but maybe not as severe as yours? i’m rocky 24/7 as well and really feel it worse in bed as well. (like i’m in plane turbulence) all my tests are clear, inner-ear is clean as a whistle and i’m thinking it maybe something other than mav or of course a migraine variant, but i’m very curious about this CSF procedure they are doing at duke university (see thread in general discussion) i think topamax has done a good job at helping prevent my vertigo migraines from occurring. just would like to scratch off another thing off the list and possible have a spinal tap done and see how my csf levels are…this definitely could be causing all the other issues i’ve never had before. have you tried a benzo at night to help you sleep?

good luck in your fight! you are your best advocate and the best way unfortunately is to try medications and keep track of how you are feeling.

Hi - I have the visual symptoms as well. Complicated patterns are nearly impossible for me to look at and I get a lot of “jumpy” vision. I also experience 24/7 rocking,swaying tilting that is also worse when I am in bed or sitting very still. I feel better when I am moving although certain head positions will tend to make it worse momentarily. I just started the migraine diet ( will need to weane myself off caffeine over the course of a week) and am going to bite the bullet and start some meds bc I can’t stand this anymore… Hopeing to get back in to see the dr. tomorrow.

I too worry that maybe its something else. I actually don’t headaches but have had migraine with aura my whole life (first one at the age of 12) so my neuro felt certain this is MAV. I had high contract MRI, CT Scan but none of the vestibular tests. My MRI was normal (other than the white spots the neuro felt were normal for the number of auras (visual, numbness and speech) I have had over the the years…

good luck.

Ali

Hi,
I get the visual sensations that trigger my vertigo off and then im bouncing and rocking.
When i got my first attack of migraine and vertigo which was 12 years ago i actually lost part vision in my left eye and ever since that attack i cant look at pattened carpet or wallpaper without starting to rock and sway.
Even reading a book or newspaper and sitting on a pc too long starts my eyes bouncing.
My vision flickers all the time and i have severe light sensitivity,i have to wear sunglasses constantly outside or i cant see and even as the sun goes down if i take my sunglasses off it takes ages to adapt to the darkness.
My vision problems were the first complaints i made before the vertigo came along…And tests showd up a few weird things with the eye specialist… straight lines are always wobbly and he diagnosed me with Central serous retinopathy (CSR) but it was supposed to be short termed and when i kept going back to him saying i still had the visual problems he didnt know what else to do…
So then my local university advertised a treatment for vertigo and associated eye problems which involved wearing blue lens glasses when i read and go shopping so i can find things on shelves in shops without my eyes feeling overwhelmed and also to help with reading it did work for a little while but it didnt last,.My doctor then sent me to another eye specialist which treated me with reading glasses to strengthen the eye muscles as she said that what would cause the eyes to bounce etc etc and i wore them for a few months and i will admit that afterwards i did start to feel a little better because after the treatment with the glasses i actually started driving my car again after 4 years of not being able to.
Just keep going back to your doctor and keep trying new specialists. They all have different treatments and ideas .Dont stick to the same ones.
I have severe nausea everyday and i find ginger tablets work for me but it took me a while to find the right ones that actually do work and now i take them everyday and i feel so much better.
Goodluck with it all !!