Tag Archives: migraine

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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The Other Kind of Migraine

For the last few days I’ve been reading layouts of my poetry book and going over the finishing touches of the cover design with the publisher. On top of that I’m being audited by our lovely IRS (what a waste of good writing time to go through all my old records) and I have to get my memoir draft finished in a few weeks.

No wonder I’m migraining. My migraines aren’t “regular” ones. In fact, (usually) they aren’t even quite headaches. Instead, they appear to be mini-strokes or transient ischemic attacks (TIAs), scrunching my face on one side. I get intense vertigo, which comes on instantly. And my body feels as if it weighs 10,000 pounds. Then I start throwing up. My limbs become very weak and tingle and/or become numb. I’m sure there are other symptoms, too, but as I said, I have been migraining, which leaves me for days and even weeks with a pretty bad case of brain fog. And weak limbs. Physical clumsiness.

In case you’re wondering if I take Imitrix, my neurologist says that people with “complicated migraines” can’t take migraine meds as they can be extremely dangerous. So I am stuck with being on a blood pressure med and, occasionally if I get an aura warning me, I can take an aspirin to try to head off an attack. Aspirin isn’t so hot for my ulcer, but the CMs feel so lousy I would rather aggravate the ulcer!

An aura can be little whirls in my head, as if vertigo is just starting. Dark spots in front of my eyes. The weak limbs, the clumsiness–in short, all of the symptoms but not as intense. I spend a lot of time avoiding triggers. My worst triggers are fluorescents and other lights which have a flicker, even if you can’t tell there is a flicker. I wear sunglasses and a brimmed hat whenever I am going to be in fluorescents.

Have you ever read Didion’s migraine essay “In Bed”? It’s really great, and I can relate to a lot of it. But it’s still not quite the same, and I have never read anything about complicated migraines, except web medical articles.

I didn’t get this form of migraine until I entered peri-menopause. Before that I had migraines that were never diagnosed. They started when I was a child. For some reason nobody realized what they were in those days–maybe because the vomiting was what they noticed. When I got them as an adult, they were misdiagnosed as “sinus headaches.” What part of “800MG Ibuprofin doesn’t touch it” and “all I can do is lie on my back with a mask over my eyes” didn’t my doctor understand?

Even after the complicated migraines began, they were misdiagnosed for quite awhile as TIAs. The first doctor I went to put me on Plavix to thin my blood and my eyes bled. Lovely. I went to another doctor who diagnosed me properly.

But I read something the other day about there being a possible danger of stroke for people with complicated migraines. And I admit that that terrifies me.

Have you ever had a migraine of any type?

 

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