DR says MAV (& fibro), anyone w/light sensitivity?

Hi Melesa.

I sorry about your suffering. Think back at what was going on when you first got the dizziness episodes. Did you have a fall? Physical therapy on your neck, or anything else that might have involved the neck, shoulders or scalp/ears?
I’m no expert but your degree of light sensitivity is way too extreme. I don’t know that it is “caused by” migraines. If it is true that you have insufficient blood flow to the ears ( how did they determine that?) that might be causing the dizziness and the light sensitivity since the nerves/arteries that are going to the part of the brain that controls light sensitivity is compromised.
I’ve bad sensitivity to fluorescent light, and the ONLY thing that clearly made a difference for me was acupuncture. My issues aren’t sorted out, so I’m unable provide a definitive trajectory for this, but basically I know my neck plays a huge role in my condition. I went to a really good acupuncturist a few months ago and within a few sessions, to my surprise, my light sensitivity was visibly reduced. We parted ways with the acupuncturist since then and due to some other neck issues, I lost the progress I made regarding the light sensitivity, but the link has been established for me: when the inflammation in my neck was reduced through acupuncture, my light sensitivity improved. NOTHING improved it before - no massage nor going up to 50mg on Nortriptyline - you’d think some gradual improvement would take place. No, nothing, it never reduced. Until the acupuncture.
Please look for a very reliable and reputable acupuncturist. Tell her/him you’ve reduced blood flow to your ears and light sensitivity. She should work on your neck and lower part of your head.
Do you have neck issues? If yes, tell him/her that as well.

I’m saying try to address the root cause of this issue if you can.
Best wishes.
Asli