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My Wacky Migraines

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I was recently diagnosed with something called vestibular migraine. Or hemiplegic migraine. Or maybe both. There is a difference because vestibular is awful, but hemiplegic can be dangerous. Apparently there is no way to tell for sure, but I am not going to accept that answer. Story unfinished. But let me back up.

For twenty-four years, I have been plagued by something that was called “complicated migraines” by the neurologists I had seen. After Loma Linda mistakenly diagnosed me with TIAs (mini-strokes), UCLA and, later, Barrows in Phoenix, diagnosed these episodes as complicated migraines.

They are a migraine disorder, but they are not migraine headaches. I used to get the headache version until they turned into this other sort of migraine. In fact, I had some horrific migraines when I was a kid–seven to ten years old. The version I’ve been getting for 24 years is generally without headache. The symptoms include sudden severe vertigo, heaviness, inability to stand or sit, weakness, burning through the sinuses, widely fluctuating body temperature, brain fog, squinched up face on one side only, numbness of limbs, nausea, vomiting, falling asleep at the tail end of the acute episode, etc. It’s very difficult to go anywhere by myself, and this is why I don’t travel alone any longer. I can’t attend concerts or sporting events with lots of lights. I had to leave daughter’s wedding reception early once the goofy lights came out. Although we had planned ahead, what the DJ thought was mild was not. That’s ok because her friends all had a wonderful time, and I was tired anyway.

When I moved to Arizona, the complicated migraines got worse in that I felt sick every day and had acute episodes every couple of days. I had to go on preventative medication in the form of a blood pressure med. The meds kept the acute episodes from happening so frequently.

I would say my migraines have been under control for a dozen years until this spring when I started feeling sick (sore eyes, nauseous, slight vertigo) all the time. So I went back to Barrows, to their headache clinic. That’s where I was diagnosed with vestibular and/or hemiplegic migraines. No such thing any longer as complicated migraines.

My worst trigger is light, especially flickering artifical light. Fluorescents always have a flicker, even if you can’t see it. But LED can be bad, too. And fluorescents that have a noticeable flicker are the devil. When I have to go under artificial lights, such as the doctor’s office or grocery store, I wear a brimmed hat and sunglasses. Other triggers are sleep disturbance, stress, too much paperwork where I have to look down instead of across (computer better than paper on the desk or table).

Another thing that happened in the last few years is that I occasionally get migraines with very traditional aura in the form of sickle-shaped kaleidoscope images. And, yes, it is as vivid as in the image below.

I am going to try to continue to search for answers. My symptoms are consistent with having both conditions at the same time, but I haven’t been able to find anyone yet with my regular set of symptoms. There are rare individuals who have both vestibular and hemiplegic, but the forms occur at different times. Some of my regular symptoms apply to vestibular, and some apply to hemiplegic (especially the one-sided face squinch). So onward. And in the meantime, please hand me the hat and sunglasses!

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