Howdy!
Joe T. here…
I’m just curious who has 24/7 dizziness and photophobia with no let up? Cause I keep hearing mixed opinions
about MAV. For example, I’ve been told by some that MAV is Episodic not constant 24/7. However, I’ve been
looking at this board a lot today, and it seems like many people have the non-stop symptoms like me. So, is it
just depend on the person? I would love to hear more about this if any knows for sure.
Kind regards,
Joe T.
My Dr. said that typically MAV is episodic, but it can be 24/7- that is what I have- I don’t have attacks- it seems like most people on here have it 24/7, and some with attacks on top of that. I don’t have light sensitivity but a lot of people on here do. Do you have any trouble with your balance/walking?
Yeah i have all that
Take a look at viewtopic.php?f=1&t=6276&p=50651&hilit=Hillsta#p50651
— Begin quote from “robertgreen99”
Yeah i have all that
Take a look at viewtopic.php?f=1&t=6276&p=50651&hilit=Hillsta#p50651
— End quote
Thanks Robert. Great reply…that’s exactly what I needed to see. Maybe I can send that link to the last neurologist
who told me that it’s all in my head (technically it is, but not psychologically). lol
This was my response to a similar question that was asked last week:
I have terrible light sensitivity, mostly to outdoor lighting. It’s doesn’t really cause pain or headaches, but it is hard to keep my eyes open outside. I almost always wear shades outdoors. In bright sun I always feel ways more “off” and foggier too. I also see snow and phosphenes/white blood cells on bright objects. It’s pretty obvious that I now have a fear of the outdoors. I am currently on 150mgs of Topamax but that doesn’t seem to help with any of the sensitivity. It’s hard to believe that my eyes will ever return to normal at this rate…
I too have symptoms that are 24/7 and never episodic. Although at first when my VN hit I had vertigo spells, I never get “dizzy” anymore, I just have imbalance issues. When I read about people have have vertigo spells or photophobia that leads to headaches or dizzy spells I start questioning whether or not I actually have a migraine problem or something else entirely. Unfortunately I have had this mystery problem for three years now with no answers and migraine seems to be the best answer by exclusion. I have tried multiple medications and diets, yet nothing seems to help. I feel like I am out of options as my problems never seem to let up or improve. I never seem to get noticeably worse, but never better by any means either. I feel like if my vision problems improved I would be at around 95% since most of my vestibular problems have improved greatly over the years, but these visual problems have created a new level of anxiety and depression that makes any healing rather difficult. It is somewhat comforting to know that others on here suffer from 24/7 visual problems too, but it would be way more comforting if some people on here had more success stories about overcoming these horrible symptoms.
24/7 here with constant light sensitivity…floresants are the worst!
I am “rocky” 24/7 and am sensitive to sunlight and flourescent lighting.
Me too.
Molly
I am dizzy 24/7 and every morning when I first go into the light it gives me pain in my head and behind my eyes. So Yup, me too!
Yes I am dizzy 24 hours a day, worse when I rest my head and close my eyes. Lights are always a problem, going from dark to light and vice versa can bring on immediate migraine with aura and worse dizzy symptoms and balance. It never goes away. Have lived with it 15 years and you adapt until you just can’t adapt anymore (or rather your brain can’t)