Wednesday, July 13, 2016

Vestibular Migraine is the Devil

S.R. Karfelt, Author, Vestibular Migraine, Migraine Variants
S.R. Karfelt/The Glitter Globe

Migraines changed me. It was for the worst in some ways, but for the better in others. My Any Day without a Migraine is a Good Day motto was born. They make me take risks I once wouldn’t have taken. They’ve made me both tougher and fiercer, and if I could stab the bastards to death in a dark alley, I’d do it with a glee unmatched by any murderer that’s ever existed.

Vestibular Migraine is a bitch to have diagnosed. I get dizzy can accompany many problems. Once a doctor asked if I got dizzy opening a drawer, from movement in my peripheral vision, in brightly lit supermarkets or crowds, unintentionally veered to the right or left when walking, or from moving my head. I said, "YES! All of those." He frowned at me and told me that those are different types of dizziness and if I could tell him which one was my problem, then he could help me. 

But it was all of those and more.

  • Usually I dream I'm running/flying/jumping and I can really feel it, in an out of control this isn't fun anymore way. Then I wake up and the world is spinning. The bulk of all my vestibular migraines start when I'm sleeping.
  • At their worst I'm spinning. No. The rest of the world is spinning. No. We both are. Either way, it's not something you can ignore.
  • Occasionally I start spinning in the middle of any given day. After fifteen years of this I can say with confidence it has little to do with my stress level.
  • If my head were to fill with water, and my brain set afloat inside, it feels like that. Sometimes I'm spinning fast, sometimes I'm bobbing.
  • If I keep my head straight, and don't move it at all, it helps.
  • Usually they last the greater part of a day. Once I get one, there are more on the horizon.
  • Nothing gets done during an event. Not moving my head is paramount. 
  • If I've had several of them, there's a residual slightly off-balance aftereffect that can last days or weeks.

Since meds make everything worse (in my personal experience). I've learned through trial and error to avoid them. 

  • Wellbutrin gave me tachycardia. Antidepressants made me depressed. These meds were given to me during the early years. I was desperate enough to try anything, and when MRIs and scans came back normal, I think I got lumped into that give her something pile.
  • Beta blockers (low dose) increased my blood pressure (doubled my blood pressure randomly), so much so that I was misdiagnosed with Pheochromocytoma. (Beta blockers are sometimes given as a migraine preventative. I have chronic trouble with meds. This might work for other people.)
  • Diazepam is actually the best help I've had, pharmaceutically speaking. It has to be taken daily, very very low dose. It's a fine balancing act though, too much and you spin. 
  • Physical Therapy is best done between episodes of vertigo. It helps you learn to spot, and how to cope. 

How to get diagnosed?

  • It's a slow painstaking process of elimination. 
  • First off learn coping skills right off, because this isn't something you can suck up and move through. When vertigo hits, you're down.
  • This is something I've had for fifteen years. That's how I got my diagnosis. I've had no other health issues in all that time. BINGO. Must just be a migraine variant. 
  • Keep track of what happens when, write the facts down. Show the written facts to your doctor. Try your very best to tell the doctor what is happening physically. 
  • You're probably going to have to go through a huge battery of testing on the off chance it is something else. 
  • Eliminate caffeine/dark chocolate/alcohol (most especially RED WINE). These are considered migraine triggers. I've found that to be fact when I'm having a bout of them. I can consume all of the above with wild abandon and have no problems when I'm not. The hell of it is, you never know. IMHO nothing is worth a vestibular migraine. 
  • Eat healthy. Exercise. The more fit you are, the less migraine you're likely to have.

How to cope without losing your will to live.

  • The vertigo will stop. Know that.
  • I go to bed with an electric blanket. When it's really bad the spinning makes me anxious (which I happen to think is perfectly natural. I challenge anyone else to spend a day spinning and not get anxious). When I get that nervous, I have cold flashes.
  • Spotting helps me. I like to use a light switch (the plate around it precisely). Look at it, stare at it, focus on it. Don't move your head around.
  • Breathe. Deep breathing in through your nose until you fill your lungs completely, and slow breaths out help me.
  • Talk to yourself, or a calm friend that understands if you're panicking. 
  • I'm one of the lucky ones. As a writer, even at my worst spinning, I can escape into my head and plot through stories. If I wasn't a writer, I'd keep books on tape handy. There can be no computer or television when all visual input is spinning.
  • When the spinning slows, and you can, check the barometric pressure on the weather app on your phone. I find that when I get this problem the pressure is usually high.
  • A thought that helps me is that many creative people are migraine sufferers. I wouldn't change this if it meant giving up my ability to write. Just don't ask me that when I'm in the middle of spinning, because I'm not rational at that point. I'd eat live chickens feathers and all to make it stop then.

The way these migraines have changed me for the worst.

  • When I read anything containing health-related advice, I run it through my mental BS detector. It's a huge detector. It's worse than anything the TSA can throw at you. What works for other people might not work for me, and I'm not very cooperative about trying anything new that I can't trust heart and soul. Maybe I should put this in the best column.
  • When doctors give me advice, I do the same thing as above. 
  • When doctors attempt to give me meds, I approach it as though they're knowingly trying to poison me.
  • When I'm having a spinning episode and anyone tries to talk me into doing that BPPV rollover backward treatment (for people with loose crystals in their ears), I'm tempted to tear their feathers off with my teeth. BPPV is a different type of vertigo. Rolling over backward in the middle of a vestibular migraine is akin to tossing me out of a military craft over the Pacific in a hurricane with no chute, OR jamming dynamite into my ears. Just don't even say it. 
  • I alternately go between wildly healthy over-the-top eating organic vegan, no-sugar, no-caffeine, no-alcohol, no processed foods AND bingeing on cake and spare ribs. My internal organs are either in a state of blissful health or WTF. My clothes and size reflect where I am in my current state of eating-lunacy.
  • Time. I'm always racing the clock/barometric pressure. I want to get books written. I want to hike and do yoga. I want to kiss my husband in a way that chases my kids out the doors never to return. I want to travel and have adventures. But I've got this ticking time bomb in my head that swallows huge swathes of my time. I'm always fighting this and trying not to be a total dick to people and things that waste my time, like paperwork and those people who take life slow and easy. I alternately want to be those people or hulk smash them.

How these migraines have changed me for the better.

  • Every day without a migraine is a good day.
  • I appreciate every moment.
  • Normally I give everyone the benefit of a doubt. I'm not going to waste time being suspicious. If it turns out that I'm being taken advantage of, please see the hulk smash comment above. Maybe this should be in the worst column.
  • Sweating the small stuff is not my thing.
  • I don't waste time gossiping or lying.
  • I will be honest with you. It saves time. 
  • I don't play games. If I blunder into the middle of someone's game-playing life, there's a good chance I'll Jenga yank something important out and wreck the whole damn thing. This is good because game-players don't invite me to their party twice.
  • Sometimes the most I can do is plot out a novel without moving my head. There is no story shortage here.
  • As a life-long chicken-shit I find myself taking risks and going on adventures. I'll try the open cockpit airplane, eat anything tossed on my plate in any freaky foreign country, or drink the iced coffee from the random taxi driver in Athens (even though the whole thing looks like a scene in Taken). It's not that I have a death wish, it's just the opposite—I have a life wish. It's only a wee little bit the fact that the worst consequences from anything (which probably won't happen) aren't going to be me stuck spinning somewhere unable to move. So I don't worry about it.

As always, please run any advice gleaned here in The Glitter Globe through your
S.R. Karfelt/The Glitter Globe
personal BS detector—or your physician if you have (or think you might have) vestibular migraine. In the past fifteen years I've only met one other person who has them. Hopefully that means they're rare. If you do endure any type of migraine, please leave me a comment below and tell me what has helped you. Also, if you have migraine and are a creative, please tell me that too. I'm beginning to wonder if the two go hand in hand.


  1. Hi there, I was recently diagnosed with vestibular migraine...have been floating/swaying for almost four months now...very frightened and frustrated. No one understands how I feel. I used to be a creative person, maybe I still am. I used to write for Chinese magazines and newspapers, but somehow I became an accountant...maybe this sickness is related to creativity like you suspect. I feel my life just felt apart, not sure how to handle it.

  2. Dreamykiss--I'm so sorry. It can be terrifying. I hope you have doctors who are helping with at least some physical therapy to lessen the floating/swaying feelings. And I hope it goes away soon. Is it constant? Or does it come and go? Have you found things that make it worse or better?

    Do you know if yours is migraine related? I've wondered if migraine is something creatives just have to learn to deal with. It seems so many have them.

    The best thing I've found to help is getting plenty of sleep, eating "clean" food (wholesome, healthy, not processed foods), and exercise. I'm sending good thoughts your way and hope your world behaves itself. Let me know if there is something I can do to help. <3 to you.

  3. Thanks for the understanding and support. I think sleep, weather and female monthly cycle are all my triggers. Sometimes I even wonder if I am overthinking about it and making it feel even worse. I contacted several acupuncturists, will pay a visit in Oct to see if it'll help. I am trying to accept this life right now although most of time I still feel depressed, but at least it's not killing me, many others have worse sickness than this. Like the doctor says, it is annoying but not life threatening, maybe it will mysteriously go away on its own...

    1. Dreamykiss--Are you still out there? Hopefully not still swaying. This week I had a doozy of a vertigo day and revisited this post. I hate that we second guess ourselves about this EVER. When you're off-center IT IS REAL. It's been nearly seventeen years with this for me now. I don't do the doctor rounds anymore. I've become jaded. If a bloody bone isn't sticking out somewhere (meaning they can't SEE anything) it really doesn't do much good.
      YET there are things that can be done! I don't let this stop me. I just got back from a five-week trip. Egypt. :) Funny, it seems different environments affect me less. Desert dryness seems less likely to cause vertigo.

  4. Hi~My symptoms disappeared at the end of 2016! Can you believe that? Now i only experience a little dizziness/tiredness during monthly cycle. I started to focus on other intersting things in life, kept myself busy and happy all the time. The moment I decided to live the way as is, the symptoms went away, although it took several months for me to not notice anything anymore, but eventually it went away. I am so glad I am vertigo free, I think that experience enriched my life and I want to help those who suffer these symptoms. I hope you feel better, I am so jealous that you travel so much. I followed you on Facebook by the way, see your posts pop up once awhile. I will leave you a comment, so you know I am on Facebook as well :)

    1. Thank you for finding me on FB! That's wonderful news that your vertigo left. For me the most important thing I want to hear is that it will end, and it does. It's been SEVENTEEN years now since it began. I just had a bout of vertigo one day this week. It ended. That is the happy ending I look for. :)

  5. Thank you so much for sharing this with us.Makes me feel a little less crazy. I have had this over 10 yrs I try to stop counting the years. I am trying to live a thankful life this year and get up every morning trying to count my blessings and stop thinking about how bad I feel all the time. I'm constantly on a ship rocking inside and sometimes outside. My last Dr said because of a concussion at age 12 I have Superior Semicircular Canal Dehiscence. She fitted me for prism glasses and wants me to wear sound canceling headphones . Not a great way to live deaf to the world. The glasses don't help without the headphones so I get no relief from this treatment. I also have migraines too . This all started going into menopause nothing before this. Meds make me worse too so I do supplements and watch my diet as best I can. I could ramble on but I just want to thank you so much for this article.I really enjoyed it made me laugh and cry since have a lot of the same feelings that you have. Great to have someone who understands you, thank you.

    1. Dear Unknown, First I'm so sorry you have all of this to deal with. Second (which maybe should have been first), I apologize for taking so long to reply to you. Over a year?! That's awful. My dizzy head missed that there was a new reply here. If you're around, I wanted to let you know I found a book about Vestibular Migraine that's pretty helpful. It might not cover your Superior Semicircular Canal Dehiscence—just the name of this makes me want to hug you. Of course now we have a pandemic so virtual hugs must count.

      In case you want to read the book it's called Victory Over Vestibular Migraine by Shin C. Beh, M.D. Amazon has it. I cried a bit as I read it because it was so relatable (I'm not used to that when it comes to vertigo) and it was helpful to me.

      Know you're not alone out there. I hope your spinning went away, but if not please send me a message. You can reach me here, or, since I have such a rotten response rate here, feel free to send me a private message in the sidebar of this blog.

      Be good to you. Wishing you all the best.

  6. I forgot to tell you yes I too am very creative.