I find that from about twilight until maybe an hour later I find that my symptoms are often aggravated. For example, driving into the city last night at about 7:30, when it was dark but not, I suppose, as dark as it could be, really gave me issues - I just felt very uneasy the entire time, and when I got to my destination I felt more anxious than usual. I found that I could barely sit still, and that if I didn’t keep my mind off of it by getting up and walking around I’d be afraid that I was gong to float away. However, by 10pm or so, when it was pitch dark outside, I was as good as I could be (though I still had symptoms, of course!). This is actually fairly typical for me. Is this common in individuals who suffer from MAV?
Also, I find that disparities in light can really throw me off. Last night I was watching something on my computer in my dimly-lit room and got a phone call from my friend, asking me to come outside to meet them. I walked from my dimly-lit room to a slightly better-lit living room to a very brightly-lit corridor to an even more brightly-lit garage, and this made me very disoriented. My symptoms (rocking back and forth, etc) weren’t necessarily aggravated, but I had to keep reminding myself why I was there. I find this disorientation so very frustrating, and it happens a lot. When I left the movies at night a couple of months ago, I felt very out of it for the entire ride home, to the point where I canceled dinner plans because I was so uneasy and anxious. I can’t even properly describe the feeling - it’s not marked by a spike in the typical symptoms, I just feel very off, like I just woke up and I have to remind myself why I’m doing what I’m doing. Does any of this make sense at all? haha
I actually haven’t been diagnosed with MAV, but wonder if it’s what I have. Some of the symptoms people describe sound close to my own, so I wonder if there are other similarities. Thanks for reading
I have the same problem at twilight. Maybe our eyes are trying to adjust to changing light conditions and it’s a stretch for the brain to catch up? I’m not sure why. Most MAV sufferers have problems with light (particularly bright light and fluro.) that’s why I hate supermarkets and wear my sun glasses inside.
Ditto! ditto! ditto! this feeling you describe especaily changing of lights ect, i think its that our brian is trying to rely so much on our vision for coordination that it gets overload. hence the fuzzy brain fog sets in afterwoods, i too tend to fade away deep into my own mind when i’m around moving or bright lights and patterns, supermarkets do this sometimes watching tv, or the movies, also niose can do it to me as well
which is hard as I’m a musician, and have to deal with noise and flashing lights at a performance , not to forget to mention that most venue’s have fluo lights, ive had to scale down the amount of gigs i do per week, which isnt good on the pocket. for people driving, the light from the afternoon sun flashing throught tress, polls on bridges ect are triggers, this is why I thought originaly it could have been patial seizure epilepsy, during this time of fading out feelings sometimes it becomes so bad for a few seconds I find it hard to speak, forget where i was in the conversation and will repete one word over and over again.
jennyd
I’m extremely sensitive to light. It’s particularly bad when I’m very symptomatic with the dizziness. I have ascertained that the light is a direct trigger for me - it ratchets the migraine symptoms up, so my congnition, which is very affected by this (slowed thinking, feeling out of it) my dizziness etc, can all be exacerbated by the light. I can be feeling dreadful going out in the day - I can find simply regular daylight hard to deal with - but if I go out after dark I feel so much better.
I’m so glad to hear I’m not just imagining it! I noticed that 3 nights in a row while our family was eating dinner out on our patio, right around dusk, I started feeling dizzy/uneasy. I didn’t really give it a second thought the first night, I’ve been dizzy every day for 6 months, so what’s new? Then it happened again, and then again at a neighbor’s house at the same time of day. It all started coming together. Then a friend and I were out to lunch in a dimly lit restaurant. About 40 minutes into our meal, just as we were finishing it, I had to high-tail it out of there and at first wasn’t sure if I should drive home or let her take the wheel. Once outside, between the air and the brighter light I was ok. I had never heard of MAV before loging onto this site. I was diagnosed with vestibular migraine at Johns Hopkins and the doctor I saw - John Carey - excellent physician - told me about the site. I’m really glad I logged on. Don’t feel like I’m out in left field all by myself. I’ve done steps 1 & 2 of the book Heal Your Headach by Dr. David Buchholz and step 3 is on the horizon I think - preventive medication. They mentioned a calcium channel blocker diltiazam. Does anyone have any experience with that? Please say it helped! I’d like to get educated on that before I have to make the decision to partake or not to partake! Thanks for any help you can give. Also, was doing ok on the vertigo front, had one attack at the start of the migraine 6 months ago in April, really bad, very nauseous lost lots of weight with the anxiety and nausea that followed. I’ve had dizziness of varying degree each day since, sometimes it would vary within a day as well. Today, when waking up I had another bout of vertigo, not bad this time, I could control it with repositioning my head and my stomach wasn’t nearly as affected, in fact I was hungry most of the day and ate normally. Is this just the way this thing goes? I feel like I may have to deal with this forever. Any really good success stories out there? I could use a shot in the arm!
I am also in search of some success stories - this is such a disabling condition and there seem to be so many posts by people who are having more trouble with the meds than they do with their illness. There is a link on page 2 of the forum that’s entitled “are there any success stories???” (Or something like that) Take a look.
I decided to read every post in the entire forum, looking for someone who has had good results. I found one person who posted after being absent for a long time because she was feeling so good - she just got busy having a life again. I found a few other posts written by people who had had some years of improvement, followed by relapse, so they were back to the drawing board.
My otoneurologist at JFK claims that he has cured 300+ people with Zoloft alone. I hope he’s right and i would like to be one of them.
