September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

November 5th, 2018 - updated 10/19 - trying to describe my MAV experience


I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm sharing -

Migraine associated vertigo, MAV, like a lot of chronic illnesses, has a lot of variation.  Key to understanding is that many people, like me, can have symptoms WITHOUT a conventional migraine.

Tests - MAV is a diagnosis which people get when a bunch of other stuff is ruled out - that's why I had a lot of testing within the first year of my illness.  Ménière's disease is another vestibular diagnosis like that, that requires ruling out other diagnoses, but there are some key symptoms typically due to Ménière's that I've never had.

Diet - Unless I'm very tired, and/or have to deal with a lot of light and/or sound, the only time I get conventional migraines - pain - is from food triggers. I'm textbook, so sticking to my diet is huge.

The main symptoms I get, which have always been difficult to explain, are - 

1) sensory overload - usually the precursor to brain fog... it's NOT a migraine in my head, it's more of a body sensory experience... when I take a break from light, and sound, my body instantly begins to feel better.

2) Brain fog - difficulty thinking, processing info

3) vestibular dysfunction - usually experienced as disequilibrium - feeling off balance, though sometimes I get dizzy.  When I can give myself a break, I feel various signals that tell me my vestibular system is re-calibrating (for example, a kind of ear crackling).

4) sound sensitivity - hyperacusis - which is not the same thing as a migraine. However, too much exposure to a lot of sound can result in a migraine.

5) fatigue - dealing with all this makes me, not surprisingly, very tired.  Again, taking a break, doing some breathing, helps.

6) When I'm really tired, particularly if I'm exposed to a lot of light/sound, I will likely get the beginning of a traditional migraine. If I can, I take a break, which usually helps.

7) not so separate - I don't experience my symptoms as separately as I've laid them out here - there's always overlap. It's also impossible to completely distinguish neurologically between the visual and vestibular - literally very closely linked inside our heads.

8) Meds - I'm not a candidate for migraine meds. Following my diet is key, and the beginning stages of my migraines are not severe enough to make meds a good choice. I do, however, take meds for Irritable Bowel Syndrome (IBS), which I also have - a condition which often accompanies MAV.




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