The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

OnandOn03's MAV STORY


Oh, the ‘whole story’ needs tweaking sometime, and I want to write a chunk on photophobia too. Just hope it’ll help somebody else in the future. Some of it at least. I’m blaming these relapses on trying to go completely caffeine free. By timing it seems so much more than coincidence, unfortunately I haven’t bounced back from milder second attack as I did from the first. It’s more a slow crawl. It’s frustrating, as round two. Last couple of days I’m really stuck with symptoms every time I move my head. Today looking down, even a little, is bringing it on. I’m more usually hit by side to side head movement. It’s so restrictive. I would really like to be able to get on with housework but that all involves bending. I’m bored with sitting it out because apart from first thing needing to relearn balance each morning on rising, and the head movement thing, I feel just fine. No other symptoms at all. Just have to be grateful for the meds which have reduced the attacks in severity and frequency and also permit me sit here looking out at glorious winter sunshine on a frosty morning without having to close curtains and don tinted glasses, Helen


The forecast for snow issued a couple of days back reminded me of a previous snowstorm soon after my MAV went chronic and I was surprised to find looking out at falling snow increased my constant dizziness and nausea tenfold. I just couldn’t do it. Now today, sitting looking out at blizzard like conditions I find I can look at the falling snow although prolonged scrutiny of the snowy scenery (six inches overnight maybe) is making me light sensitive and causing rear head pressure so I’m certainly not looking forwards to tomorrow’s forecast of bright sun on deep snow. All this recent experience has reminded me of my days of extreme light sensitivity. A dark place that was for me. Quite literally as well as metaphorically.

As most of my episodic MAV attacks occurred following meals out in restaurants I eventually concluded some connection and lighting would seem the obvious one. Photophobia per se during acute attacks was one of the last symptoms I developed. I suspect I’d had ten years of attacks before it kicked it. The photophobia became chronic, constant after a prolonged spell of back-to-back attacks which occurred nine months after my MAV turned 24/7. It then got alot worse before it got better.

I remember putting wraparound sunglasses on in the neuro-otologist’s waiting room in October 2015 and I was doing the same when I saw the second migraine specialist neurologist in February 2017. It must have been extreme for about 18 months during which time I wore a sports visor and tinted glasses indoors and had to keep the curtains closed against any light. Dull days were as bad as sunny ones. Any light would increase the dizziness and feeling of nausea, A couple of minutes outside complete with hat and dark glasses in sunshine would make me so dizzy I’d be on the floor. I remember reacting to reflected light off a dinner knife or a stainless steel casserole dish.

I had home visits for the optician who made up tinted lens especially and the time was fast approaching when we were talking about total wraparound prescription goggles to exclude all light. During this period I could only venture outside in summer in deep shade or approaching dusk and I went - nowhere. Doctors appointments were by telephone and the optician came to me.

I contacted the neuro-otologist who had diagnosed me with MAV and suggested preventatives about it but he said he was unable to help me because he didn’t know ‘where the photophobia was coming from’! My doctor kept telling me I realy ought to get out but not to go anywhere that might trigger symptoms and she couldn’t suggest anywhere that wouldn’t happen. She repeatedly told me she ‘didn’t understand anything about light sensitivity’ and suggested I might need glasses. Just in case I hadn’t managed to reach that conclusion myself. And so it went on. I know at one point I never left the house for five months. The first time I went outside, we have a large garden, my husband literally had to hold me up. MAV had certainly brought me - a country girl - to a dark place BUT with time and meds this has improved. All of it.

It’s possible, nay probable I’l have to search out a pair of amber tinted wraparound glasses to wear indoors tomorrow because of the snow but I haven’t used them for at least 18 months. I may still have trouble with other peoples lighting/some store lights but not at home, and I can walk outside these days in sun with just reactalite lensed glasses. Light sensitivity varies depending on how sensitive the brain is day-to-day I guess and there are strong links for me at least between photophobia and visual vertigo. Or at least they both show heightened hypersensitivity. At the same time I was reacting to light, a stripey tablecloth on the table and flowing river on television would ‘get’me. All gone now.

I write up this story now because I sense so many people on here with MAV are presently feeling so utterly hopeless, I felt it might restore their faith that it can and will, eventually, improve. Just as I have. Helen


You are an incredible lady Helen! Your photophobia reminds me of myself in so many ways. I remember telling my ophthalmologist that while moving in a car, it is like my eyes are taking still photos of any vertical structure… poles, trees etc, Not like I am moving 70mph past them.
I also remember having great difficulty with candles flickering on the tables at swanky restaurants with clients. I tried desperately to suffer through the affects they had on my vertigo without my clients knowing. Finally I simply picked them up and placed them on a table beside us out of my view. I never told my clients why and they never asked :wink:
The VP of my company always wears shirts with stripes, I can hardly look at him and tell him so :grin: He now has cut back on striped shirts since I complain mercilessly :joy:
All of my photophobia issues have reduced greatly on Ami and I believe more improvement will come in time… comparatively, I am in a very good place as it stands.