It’ll Make Your Head Spin

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When I was little, spending a day at a carnival tons of rides on the Tilt-a-Whirl. I loved that swirling in my eyes that continued for a while after I got off the ride, and then I’d do it all over again.

I hate that ride now.

I’m on that ride constantly.

Over several years, chronic vertigo has taken over my life. Vertigo is the illusion of motion when you’re at rest. It’s a dysfunction of your vestibular system, comprised of your inner ear, ocular, and proprioception (balance) systems. What you hear, see, and feel. Any of those get messed up, so do you. Vertigo makes you dizzy, and sometimes you want to puke. Sometimes you do.

My first migraine hit as a senior in high school and left me dizzy and wasted, but this vertigo was an insidious fog that crept in slowly over six years. It’d come and retreat. The next time it crept in further before crawling back. I didn’t know how bad it’d become until two years ago when I got out of bed one morning and watched my room spin upside-down before my eyes. My brain couldn’t process what I saw, and I face-planted and couldn’t get up. That’s called a “drop attack.”

Vertigo doesn’t only make everything spin. You become disoriented, even in your house. For me in happens while cooking because it’s too much to keep track of. It blurs, and I wind up lying on the floor and pray my kids don’t see my like that. I get tired. My words slur. I stumble, and my speech gets halted. I sound like I’m drunk. In the middle of the day. When I’m talking to my agent. Or my son’s preschool teacher. People talk, you know. And it’s all because my brain is so focused on trying to stay up right that it lets go of other functions.

Last September, I went through a battery of tests. Multiple sclerosis. Brain tumors. Lesions. Aneurysms. Meniere’s Disease. Lots of tests few answers.

I had pain, too. My brain didn’t seem to fit in my skull. My writing crawled to a halt. I couldn’t read because scrolling with my eyes brought on vertigo and violent nausea even with medication. Watching the letters pop up as I typed was worse. It got to the point where I was swallowing numerous pills for relief that wouldn’t come. I sought out alternative treatments, which were only Band-Aids.

Severe, chronic vertigo associated with migraines like mine is a “silent” disability, one people can’t see. Many people are compassionate. But others lack sensitivity, assume you’re faking it or just have a headache and will get over it. The worst is the assumption you’re a pillhead looking for a high. “Mom’s got a migraine and is popping pills again.” (Often said with an annoyed eye-roll.) We’ve all heard that on TV or read that in YA novels.

It’d be so much simpler if it was like that. God, would it.

This past Memorial Day weekend marked the first time in sixteen years, since I was a teenager, that my husband Tim said, “Honey, I’m scared.” He didn’t say those words when my parents were dying. He said them now though, and he said them about me. For five days in a row, I’d been sick, curled in a ball, too disoriented to move and maybe perked up enough to update Twitter or Facebook but not much else. I realized that, if I had a regular job and wasn’t a stay-at-home-mom/novelist, I’d be on disability. I’d stopped functioning.

Depression and I are already intimate. Both my parents died when I was younger. They were both physically disabled, and I began to see shadows of their limitations in what I now live with. And it terrified me. I have three young kids who need me, and I could hardly function for them. This disability had made me angry and bitter and sad, and I have always tried to be warm and compassionate—for Christ’s sake, I entertained becoming a palliative care nurse at one point. I regularly volunteer at stable for disabled riders because I love it, but I have far more in common with my riders than I realized. Yet every day had become such a struggle that I couldn’t wait to sleep again. It took years to realize I even had a disability, and it took mere months for it overtake all aspects of my life.

Recently, I began vestibular rehabilitation with an amazing physical therapist. After five weeks of backsliding, she said I had to get my tail in to my doctor, and he got me in for an emergency appointment with a neurologist. I now have an actual name for what’s going on with me.

Vestibular migraines.

Even though vestibular migraines are rare, I’d been misdiagnosed because I don’t have a typical case. But it means more medications with side effects like my lower lip going numb or that I have zero appetite. I can live with those things because I’ve been given back some semblance of my life. Pain level is much lower. Still dizzy as hell, but I can cope better. It’s so easy to judge people who have a silent disability because those disabilities aren’t tangible and therefore aren’t “real.” People like me who rely on pain medications and other heavy duty drugs scroll through our Facebook pages and have friends posting about how medications are bad and if people just had the willpower to give up their medicines… and society think you’re just looking to get stoned…It makes your head spin. They don’t know what it’s really like to be in our shoes.

With the pain diminished, I’ve come to terms with my vertigo and limitations. The vertigo is still constant, but it’s not as severe. This won’t last. I’ll acclimate to the medications, and I’ll have to change doses or try something new therapy. I’m still figuring out where my boundaries are before I have an attack—and I’m figuring out how to push those boundaries.



About Author

Sarah Bromley

Sarah Bromley lives near St. Louis with her husband, three children, and two dogs. She likes the quiet hours of morning when she can drink coffee in peace, stare into the woods behind her house, and wonder what monsters live there. When she’s not writing or wrangling small children, she can be found volunteering at a stable for disabled riders. Her novel A Murder of Magpies released from Month9Books in 2014.

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6 Comments

  1. My 80-year-old mother, who lives with me, developed Meniere’s Disease a couple of years ago and her attacks are scary and utterly debilitating for her — all she can do is throw up for an hour straight and then lie on her side with her eyes closed until they pass. Like you, she’s managed to find therapy that helps to manage the symptoms but they’ve never fully gone away. I had no idea how many people suffered from various forms of vertigo or how overwhelming it could be until this happened to my mother, and now it seems like everybody I meet knows someone who’s suffered from it. Thanks for this post.

  2. So amazing, the difference it makes to get the right diagnosis. And I can’t even with the anti-medication people. HOW NICE TO HAVE THE LUXURY NOT TO NEED THEM GOOD FOR YOU HERE IS A LOLLILOP. So glad you’ve been able to find a way to reclaim your life and, somehow, I suspect you’ll find a way to push those boundaries and beyond!

  3. Thank you, Dahlia. You know, I’m usually one to seek out alternative treatment, so I don’t frown on them at all. I did acupuncture, massage, chiropractic, and other treatments. I still do. But I was losing ground so fast, I had to get more help

  4. I too have been suffering from chronic dizziness/vertigo and nausea. Last night, while watching the fireworks, I couldn’t lift my head because the entire landscape shifted sideways. It hasn’t been this bad in weeks. I spent last year doing all the same tests. My inner ear is fine, so they say. The doctor also assumed migraines and put me on Elavil, which nearly ruined my life. I had a terrible reaction to the drug — swelling in half my body (knee, elbow, finger joints) to the point I couldn’t walk. I stopped taking the drug and everything resolved. Now I’m taking allergy meds like Zyrtec and Sudafed. My dizziness is mild now; not the world-revolving drop attack I suffered last night.

    I hope you find some relief. The worst part about this is I hear from tons of people they experience it too and yet still few doctors treat this as anything more than “just” vertigo.

  5. I just wanted to pop by and say I have been suffering with vertigo for nearly 6 months now and know how you feel. I first got diagnosed with Labyrinthitis but now the doctors think Menieres even though pretty much NONE of my symptoms match Menieres Disease. I’m almost positive it’s Vestibular Migraine. I’ve tried working out food triggers but haven’t come up with much, did you try the same? Heal Your Headache is a good read if you want some good information and I’m on a support group on facebook that reminds me I’m not completely alone nor is it all in my head! I hope you find a good medication that will help you control your ‘migraines’ and dizzies. It’s so hard but at the same time, maybe we wouldn’t have been dealt this hand if we weren’t equipped to handle it! Take care and be dizzy free x

  6. hello! even though I’m a year late 🙂 I wanted to send a virtual hug. I’ve had migraines since I was born and they grew steadily worse until they turned into chronic migraine was I was 17. But I, too, write, and have to fit my writing around it and learn my limitations and boundaries. I’m getting better at it, but it’s a s-l-o-w process. I just wanted to say you’re not alone 🙂

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