I do not have MAV but I do think that my mom suffers from this. We will be seeing an ENT and neurotologist soon. I have been doing ALOT of research but since I do not suffer from this condition, it is VERY hard for me to understand. I do believe vision/light is a trigger for her - she has a hard time in side large stores (e.g. nordstrom, Dickās sporting goods, home goods etc.) and from my research it seems like certain lighting (e.g. fluorescent light) is a trigger. Can someone explain to me what happens when they go into these stores with fluorescent types of lighting, how do you feel? It seems like for her she has major anxiety due to what I call visual hallucinationsā¦ Has anything help?
She has chronic dizziness 24/7 and she can barely functionā¦
Hi BeBop, me again.
My Otolaryngologist calls the light sensitivity āphotophobiaā and it is one of the most debilitating symptoms Iāve had, besides the vertigo / dizziness that is. How to describe it is so hardā¦ Iāll try.
So, not only is it light sensitivity but itās how your brain processes movement. Your eyes see a reflection off of a floor at a big box storeā¦ that reflection travels as you walk at a different pace than your actually moving. Your brain processes this discrepancy with ease, without you even knowing it. Our MAV brain on the otherhand isnt connecting those parameters like it used to.
Other light triggered situations can be driving down the road and the sun is behind the trees, thus casting shadows on the road ahead and beside you. Our MAV brains think itās the road or the trees are moving, not having processed that itās actually us moving and itās okay. Itās such a bizarre thing to try and explain and I may not be doing a good job of it.
Here are a couple of pages that may be of interest, this website in general (use the search engine at the top) is probably the foremost comprehensive site for research of MAV. http://dizziness-and-balance.com/disorders/visual/visual.htm
Hi, me again. As I stated elsewhere Amitriptyline or a beta-blocker (Propranolol) are well established to control photophobia and help with visual issues. More recently Effexor (Venlafaxine) is being used particularly it seems in the US. Visual issues are just symptoms of hypersensitivity like āhead pressureā, thereās nothing wrong with her eyes per se. To understand photophobia better you could search Kathleen Digre on the internet, top US, probably world, authority on the subject. You will find some references to her on here using the Search facility too, and Iāve written a piece in my own Personal Diary about photophobia which will come up in same search. Another good source I found was the Theraspecs website and also any of the sites for the Visually Impaired. Good management tips on those which will be useful until she recovers. Things like pausing to give eyes adjustment time when moving between rooms which generally means adjusting to different light levels. You can PM me if you prefer. I had so much trouble myself, Iāve become quite knowledgeable about photophobia.
When it comes to reacting in grocery stores, it isnāt just the lights. Rather overall excessive visual stimulation. Just walking between two grocery laden isles - no really obvious focal point - will cause visual vertigo. In fact anywhere where whatever us in your peripheral vision is the same on both sides will do it. Travelling by carās the same, hedges both sides can be a killer.
Good luck to her with the tinted glasses. They help many people. Only trouble is at what point do you/does she, and I mean do people with chronic symptoms rather than just in store, take them off.
With regards to changing her lights at home, I wouldnāt do too much too soon because once medicated her condition will change/improve and you may find you have gone to much unnecessary expense. If sheās always lived with fluorescents, her brain āunderneathā is used to them. Mine is. For the time being ensure itās safe underfoot, mats that cannot slip etc and just try to ensure she is in consistently even light - an impossible ask in an ordinary home I know - been there - but as near as possible. She may find it impossible to see in low light or in the dark. Watch out with torches, spot lights etc. Blue lights can be a problem, think PC and phone screens. Those modern LEDs I cannot take.
Hard work but donāt worry, it wonāt be āfor everā. It will gradually reduce. Good Luck. Helen
This is exactly something I was going to mention this mornign! This is really a big one for me. My husband goes through the house in the evening turning on lamps so when I get home from work, I have more āevenā lighting. As Helen mentioned, LEDs (blue lights) are a big trigger for me and seem to be everywhere now days, I even have an LEDs on my vacuum, toaster, refrigerator, washing machine etc. I should own stock in black electrical tape for all Iāve used to cover those pesky LEDs.
I am so happy to hear you have Therspecs on order, they and Axon are the best I know of for this condition. One thing I would note also is that I used noise cancelling headphones as well as āmusician earplugsā to help with the phonophobia. My specialist said to use both eye and ear protection VERY sparingly, once becoming medicated especially as the ears and eyes can become lazy which complicates recovery even further.
Yep. That was one of the very few pointers I ever got out of the VRT therapist. The āconsistent lightā aspect.
Never heard that. Sunglasses used indoors or to excess result in eyes becoming dark adapted. They just crave less light and become more photophobic. Luckily I never had to resort to ear protection. However I went on using special glasses as long as necessary. I couldnāt stop until long after I started meds. Depends how symptomatic one is. And that varies day to day. Helen
Thank you everyone for your insight and feedback. These will all be things I bring up to the neurotologist. Since this is a private consultation I want to maximize my time with her.
Gathering data/information is very time consuming, especially since I am not the symptomatic one and I donāt know all of the symptoms she suffers, except for the ones she can communicate with me. Iām trying to get a general understanding of everything and then as I gather more information on things that trigger/bother her I will likely end up doing more specific research. You guys gave me a great head start!
Some things in the works:
ENT visit
Neurotologist - iām praying that she is good and has good insight
Theraspec glasses coming tomorrow
Low dose mag glycinate for now - holding off on other supplements for now until we see the specialist
VRT appt at the end of the month scheduled
Iām trying to figure out her ātriggersā - this is the hardest because I donāt usually suffer from migraines and it seems like everything can be a trigger. Somethings I think are triggers:
light (?)
crowd
sound
weather ???
sleep ??? - she has hard time sleeping these days
busy patterns ???
Thank you everyone for your insight and support. I pray and hope that she gets to a good stable point soon, it has been way too long!!!
