It's my Vertigo Anniversary—Seventeen Years Living with Vestibular Migraine Variant

The Glitter Globe/S.R. Karfelt

This month marks seventeen years since my first vestibular migraine. 

In honor of that my migraines have showed up more often than usual. Maybe they're waiting for cake. Meanwhile it feels like someone is sticking invisible nails into my forehead and spinning my world hamster-style.

Vestibular migraine or migrainous vertigo is a type of migraine that may or may not cause a headache, but can include a number of debilitating symptoms affecting the ears, vision and balance. It is the second most common cause of vertigo.

A vestibular migraine is a nervous system problem that causes repeated dizziness (or vertigo) in people who have a history of migraine symptoms. Unlike traditional migraines, you may not always have a headache.

When it comes to vestibular migraine I'm one of the lucky ones. I get bouts of them, but they go away eventually. I stop clinging to the bedpost, throw some clothes into a suitcase and run off into the world in search of adventure. I'm a cheerful traveler no matter how many times my flight is cancelled. In fact I'm a cheerful person because any day without effing vertigo is the best day EVER.

The headaches started in 2001. I'd never had a migraine in my life. They came out of the blue, something called Cluster Migraine. Four to five migraines hit per day for six months that year. For me it was mini-hell because my life came to a grinding halt and I had no idea what was going on. I didn't know they were migraines and assumed it had to be something really bad and likely fatal. 

Nobody had answers, so being me I kept meticulous records figuring data was the key to science. Everything from headaches to my rounds of medical testing were written down for years. So far that has helped me with only one absolute—it's definitely my vertigo-versary.

For years I ran from doctor to doctor. They scheduled test after test, CT Scans, MRIs, blood tests, hearing tests, eye tests, and the only thing that they could tell me was that I was an unusually healthy woman and there was absolutely nothing wrong with me.

Oddly enough no one mentioned migraine until I went to the ER one day convinced I was having a stroke because of the flashing lights in my head. Migraine with aura they call that. Lightning storm in your head I call it. The pain is the thunder, followed by earthquakes and general end-of-times mayhem in your skull.

Still, after six months the cluster migraines ended. To this day some visual disturbances have remained, and so has vertigo. But the non-stop murderous pain of cluster migraine stopped as suddenly as it began.

Why did the Cluster Migraine Suddenly Stop?

To me it felt like they'd fried out the pain receptors in those pathways of my brain. If that's a real thing I've never heard or read about it. That's just what it felt like. There's no science behind that theory. It's my writerly take.

At the time all I really cared about was that the pain had stopped. There's still shadow pain and shadowy visual disturbances, but no flashing lights. There are still bouts of extreme vertigo—spinning, rocking, brain floating in skull bobbing, and the inability to think clearly. Maybe my thought processes are interrupted by these migraines. Maybe my brain is focused on coping during these episodes. It's hard to know as it feels like both. I reassure myself by setting my attitude to enduring until it passes.

What has worked for my Vestibular Migraine?

• After some dangerous encounters with meds that my body got creative with, I discovered that what I ate (or didn't eat) helped and I didn't wind up at a major medical hospital like I did with medications. (Note, meds help some people. My body is just an uncooperative one.)
• The above said, I did have some success with Diazepam. I don't know why it works, because one grain too much and you spin far worse. For several years I took it at half the lowest dose each morning and it seemed to help. Eventually I went through a period of constant spinning and stopped it. The spinning stopped. I've not taken it for years, but I keep a vial of ancient tablets as a talisman.
• Not consuming caffeine, meat, alcohol, processed foods, and anything made of flour helped immensely. Don't I sound saint-like? Don't fall for it. I just got through the Winter of Cake. (Preceded by a summer of Hamburgers.) But notice how I'm complaining my Vestibular Migraine is much worse? There's a direct correlation. 
• Walking a few miles a day helps. When my vertigo is mild I can still manage to walk. Either I take up more space on a path wobbling a bit, or I walk on my treadmill. I also have a Stairmaster. It's been my experience that a stronger body makes everything better.
• Taking quiet time when I need it. That includes when I'm having tough days. The world does not cooperate with this need. There is no sympathy for a medical condition no one can see. I take them anyway.
• Not allowing Vestibular Migraine to make me miserable. I'm at war with it. We have battles. Sometimes it wins a battle but I don't allow it to control my life. I travel, hike, take extreme risks, and do my very best to make this life a wonderful life. !@%! vertigo. 

It's probably obvious I'm winging it at life with Vestibular

S.R. Karfelt—who hiked the Grand Canyon &
regretted wearing bifocal lenses doing it.

Migraine. I'm not a doctor or medical professional. I'm one of the minuscule percentage of people living with it. If you have it, or think you might, what works for you?

I'm simply coping with it. In many ways it's made me appreciate life. It's made me fiercer. It's made me CUSS SO MUCH. It's made me sit down and write the novels that have danced through my head my entire life. 

It's made me appreciate the good days. It's also made me want to cry (but I don't because that makes the spinning WORSE). Vertigo does not define me. We all have our demons. I prefer to march over the body of mine as I go on with my amazing life.