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

Specific Illnesses & Conditions VM/MAV
21

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

22

I stumbled upon this post while doing a google search and would have started crying if it wasn’t a migraine trigger. I don’t have MAV, but I have chronic migraine and severe chronic photophobia, and in all my searching for the past 2.5 years of being sick, I’ve never been able to find anyone else with severe photophobia that I could talk to, or not anyone else that it’s an actual impediment to daily functioning rather than an annoyance.

All artificial light triggers a migraine for me, even in very small doses. An exposure of only seconds to fluorescent light will trigger intense acid-like burning in my scalp and pressure in my temples that turns into a migraine hours later. I haven’t been to a store in over a year. My husband (who should be sainted for living in a house with no lights on, especially in winter), does all the driving and takes me to my doctor’s appointments wearing polarized FL-41’s plus two blindfolds until we get into the exam room, when we can turn off the lights and use natural light. I go to work in much the same way, and fortunately have a room to work in with natural light. It’s been 2.5 years since I could stand being near a computer screen, TV screen or phone screen. We tried all the special adjustments and monitors. The only thing that finally worked for me was an E-ink Kindle, which emits no light and doesn’t flicker. Supposedly, they just started making a real monitor like this in China, which we may order soon.

We’re on our 3rd neurologist. The first one was freaked out by how light sensitive I was and after only a few months handed me off to #2, who we stayed with for a few years, trying his regimen, and after he said he had no more ideas, are on #3. I’ve been to the Moran Eye Center in Utah to see their doctors, and now wear the lighter FL-41’s full time, and used to be able to tolerate sunlight with the polarized FL-41’s. But as my photophobia has worsened, I now have to avoid being outside on sunny days. The doctor there hoped that if I could get the migraines under better control, the photophobia would improve also, but it’s still slowly worsening. We’ve recently made our first bit of progress with the migraines with Botox, so perhaps that will help, although I haven’t noticed a difference in the photophobia as of yet. I take Gabapetin, Nortiptyline, and Topomax, as well as all the usual vitamins recommended.

Anyway, sorry for the really long post. I’ve felt like I have an orphan illness for a long time now, even when going to see doctors, who treat me like a freak case, and wanted to maybe talk to others who were light sensitive too.

23

Hiya, just wanted you to know that you are not alone.
I cannot cope with any artificial lighting anymore otherwise I’m dizzy within minutes. Can’t use stores without sunglasses and baseball hats, feel totally disoriented if I try and function without some form of tint even inside my home. Going to restaurants, social events, even coffee with a friend etc are a no no now as I know dizziness will manifest itself within minutes and I’m fed up of feeling different and having such odd symptoms that no one else seems to have. My Confidence has taken a massive dip as very self conscious about wearing sunglasses inside. (Even had to wear them to my child’s parents evening. I always explain why but still think they must be looking at me like I’m a complete prat, never mind!)
Only have lamps on throughout the house as overhead lighting too bright.
Seen eye specialists, neurologists, had mri scans but no answers yet I’m afraid. Sorry I can’t offer any advice but just wanted you to know you are not alone! X

24

20mg Amitriptyline really helped visual vertigo for me. Not eliminated, but much much (much!) better.

25

Thanks :slight_smile: Yes, I know what you mean about the hat and sunglasses indoors. The first year, when I could still tolerate artificial light a little (and just get mildly sick) if I wore sunglasses/hat all the time around it, coworkers commented with judgey wrinkled noses they weren’t sure how other people were going to react to the sight of me, which seemed like just kind of a mean thing to say, as if it would be acceptable to stare at someone who needed a wheelchair to get around, so why would this be any more appropriate just because it was a silent disability? Anyway, I was eventually transferred, and my new coworkers are much nicer.