Does this sound like MAV

In 2006 after slowly titration off of Inderal for a rapid heart rate I was having due to a thyroid issue. I started experiencing light sensitivity, poor night vision, poor depth perception, issues in super markets because of the lighting and a feeling of a rubber band around my head. I also experienced vertigo for the first time which left me feeling off balanced for months.

I was put on Prozac which I had taken previously for depression and anxiety. I seemed to get better aside for some residual vision issues. I stopped it in 2008 to get pregnant. It seems immediately I started getting issues, starting with trails from passing objects such as cars. I became pregnant and after I had my son I decided to try the Prozac again. This time it made me feel spacey and I got that rubber band feeling again and a constant headache. My Dr decided to switch me to zoloft instead and within 3 days the headache stopped but I was left with static in my vision. Then the migraines started. They were daily and caused me to be slightly off balanced. After a year of this and the visual symptoms I was finally diagnosed with basilar migraine and put on verapamil. Within a few months the visual symptoms decreased by about 80 percent, but I started getting dizzy, mainly while driving. I was then diagnosed with bilateral vestibulopathy after doing caloric testing. I went through VRT and stopped the verapamil because my migraines were gone. Then in mid VRT my migraines started coming back and the dizziness was gone. After a whopper of a migraine at the end of my VRT my vision started doing something weird… it began skipping like a cd in my peripheral vision… it’s very choppy and no longer smooth. I immediately got put back on the verapamil, but it has never helped. Then in 2014, September I started getting a rocking sensation and just an overall dizzy feeling. This lasted for months until my Dr suggested I take Claritin and that it may be allergies. It worked!!! It heled with the rocking sensation completely and the dizziness came and went and was very mild. Then after several months I stopped taking it after being told Claritin is ototoxic… along with verapamil as well which I decreased my dose. Slowly the dizziness has crept back into my life. I’ve noticed it around my monthly cycle and during ovulation, but also it seems that sometimes I will get a little off balanced, visually induced, and have that rubber band feeling but no migraine.

I decided to see a good specialist in the state of Florida who trains all over the US. He immediately did a rotary chair test along with a bunch of other tests that he said they put astronauts through. He told me I had absolutely no inner ear issue as the previous specialist indicated. He feels like my issues are solely migraine and most likely hormonal.

My question is… do the symptoms sound like MAV?

Rocking sensation at times

Visually dizzy watching repetitive motion such as cars at a stop light

Light sensitivity - specifically fluorescent lights and when the sun sets and the sky is super blue

A feeling of being disconnected a bit… nothing too bad, but at times I feel very out of it or detached/ depersonalization

After images

Visual snow

Choppy vision where it’s missing frames (mainly in peripheral) usually notice it while driving or walking, but also when watching TV and the refresh rate is low

Dizzy sensation after driving

Floating head feeling when laying down at night - feels normal after an hour or so

Sometimes when I close my eyes I feel like I am spinning for a split second, but it ends super fast, yet still scares me

Also, driving gives me a sense of tunnel vision… I believe it’s called optic flow, but to me the optic flow is disrupted from the choppy peripheral vision and I feel like everything is coming at me too fast and results in information overload.

Would love to know if there are other people out there with similar symptoms who may have gotten relief. Currently the choppy vision leaves me limited to two hours or less of being in a vehicle for trips because it’s so frustrating and drains me.

Yes those are exactly my symptoms. Mine started really suddenly a little less than 3 years ago.

Do you take low dose aspirin? I have to take that (have been taking it for 10 years for a blood clotting disorder) and I am wondering if this contributes to the problem.

My situation has been helped by low doses of nortriptyline and topiramate - you might want to try either of those drugs or in combination - see a neurologist who can prescribe you one or the other or both.

I think I am just going to stick with topiramate (topamax is the brand name) because that might be the more effective drug because it reduces the amount of electrical activity the nerves send - basically I think this is a disorder of the nerves being too overexcitable to stimuli. Topiramate has to be titrated very slowly (I’m on it 25mg for three weeks/ 50mg for three weeks to see if 50mg cures the problem over several months - takes time to work). You might want to do a search for “topamax” on this site to see reviews of the drug.

I don’t have the visual snow or after images though but the rocking sensation you describe is what I have too and many, many other people on this site with MAV.

I don’t want to have to take meds if I don’t have to (I am young and don’t want to take them forever esp. during childbearing age) so I am looking for dietary triggers too. I think for me, chocolate, nuts, dairy, citric acid, MSG, soy and gluten may all be triggers, but it’s really hard for me to know for sure.

Nuts, red wine, too much caffeine, MSG, and yogurt seem to clearly correspond with increased head pressure for me though, which then makes me dizzy.

Is there something that you are eating that triggers your symptoms? Sometimes it progresses to a full migraine, that is excruciating, but usually it’s just a feeling of being off balance.

Hi,

I have actually been thinking of trying lamotrigine as I’ve heard it may help with mav and help with visual symptoms.

I do the migraine diet, except I cheated this past week with Thanksgiving and family in town, so I will be back on it tomorrow first thing.