Eighteen Years of Vestibular Migraine—Never Ask Why I Cuss

The Glitter Globe/Stephanie Karfelt

The Gift of an Inappropriate Sense of Humor

Most of the time I prefer to laugh than cry. That often includes laughter about some seriously sucky things. Inappropriate laughter is my superpower.

I figure if I'm laughing about my own pain, it's allowed. 

If I'm laughing about someone else's pain, it's not. I hope I don't do that.

A good friend of mine died from cancer a couple years ago. Toward the end he had to endure some vertigo. How the hell do you cope with this all the time? he asked. The answer is simple, I don't have to die from it. 

The hard part is I have to live with it 

I'll take living with it as opposed to dying any day. I have books to write and a life to live, and I'm thankful I get to live it despite this shit vertigo problem. 

When I first got it I didn't cope so well. I ran from doctor to doctor. When they were useless, and they were, I researched it myself and asked for test after test. It cost a boatload of money. Absolutely nothing good came of it. Sometimes I laid in my bed and cried. 

That's not entirely true. Crying made it worse, so I didn't even have that. I laid there wanting to cry and not daring to. I was sure I was dying. I was certain that if I could figure out what I had that there would be a cure.

Eventually, after years of freaking out and developing high anxiety—which seems to come hand in hand with living a dizzy life—I decided I wanted my life back.

How I got my life back

It wasn't simple. I was lucky. My husband is a bit like Mr. Spock in Star Trek. He actually says, "That's not logical," more than any 100% human should ever say. Isn't that something only Vulcans say regularly? 

Instead of annoying the heck out of me, it helped me through the early years of vertigo. No matter how many times a doctor told me I wasn't dying I didn't believe them. I could hardly walk down the hall or bend my head to shave my legs. For about six months in 2001 the only place I went was to another doctor appointment.

My Spockish husband argued all my dying worries. He'd sit beside me on the bed where I half sat not moving my head, and listen to me repeat my worries over and over.

When the dizziness slowed and began to skip entire days in a row, I went to see a therapist. The reason I went to see the therapist wasn't for coping skills. I actually went to see a therapist so that I could make him listen to me talk about my dizziness and what it might or might not be.

At some point I'd realized that if I didn't stop bouncing those worries off my husband that I was going to drive him mad. For an hour a week I'd sit there and tell that therapist all the details of when I got dizzy that week. At least once I caught his eyelids drooping and he nearly nodded off.

Not kidding.

I couldn't believe it. It didn't matter. I kept talking to him. It's what I needed. Besides the conjecture of what I felt like and what it might or might not be, I also attended Physical Therapy for vertigo.

Stuff that helped

P.T. was the most useful thing I've done for this problem. I learned how to shave my legs when I'm dizzy. I can't do it when it's really bad, full-on spinning, but most of the time I can. If you have chronic dizziness, I highly recommend Physical Therapy.

Thanks to it I'm EXCELLENT at spotting. When I don't have dizziness my aim is spot on! 

Meds were FOR ME a grab bag of hell. No joke. It made everything worse. WAY worse. Heading for the E.R. in an ambulance worse. Tachycardia and nitro worse. Double your blood pressure worse. I had completely opposite reactions to migraine meds. So I hesitate to recommend anything, but in the interest of being candid I have to be honest. 

A small dose of diazepam (valium) did help. It has to be minuscule and taken daily. I'm not sure why it helps. I read articles that says it suppresses the sympathetic nervous system. I don't know. I'm not a doctor. All I know is that it did work for me, BUT it can be highly addictive AND if you take a smidgen too much (I always cut my lowest dose pills in half and took it once a day), you will SPIN LIKE MAD.

Surely there's no way someone with Vestibular Migraine will risk anything that will increase the spinning. I think there needs to be a study of us to see if anyone with V.M. has gotten addicted to diazepam when taking it for this problem. Sheer terror wouldn't allow it in my opinion. 

But what do I know?

Since I've never had a drug do anything but make everything incredibly painful, far worse, and expensive (except diazepam), I'm the last one to understand drug addiction.

Acceptance

I took diazepam for a couple of years. Then I went through a period when my dizziness seemed worse and I was getting full on spinning several times a week. I read that I should never just stop diazepam cold turkey, but I couldn't cut the pills any smaller to step down any slower so I just quit. No, I didn't tell my doctor I was doing that. But SIDE NOTE TO DOCTORS—the reason patients end up googling important things is because calling you for two weeks doesn't result in a call back.

Also, I'm a terrible patient after all the years of this. Please don't follow the example of some chick on the internet if you're going through this. Listen to your doctor and follow their advice. I'm just being honest here.

It's been years since I took diazepam now, but I still carry a bottle with me when I travel in case it gets bad. When it does get bad I don't take it though, for fear it will make it worse. I still carry it. It's more of a talisman now. 

At some point deep into the spinning years I realized I was getting used to being dizzy. Mind you by then I had stretches of time without vertigo. There are varying degrees of it too. You can't just deal with full-on spinning. You can't move your head or walk with it. I still sit in bed when that happens and wait for the bobbing to stop.

That bobbing spinning is why I call my blog The Glitter Globe. That's what it feels like. It's like your brain is swirling around in a pool of liquid. Remember when you'd spin as a kid so you could have that feeling? It's like that only faster. It's zero fun and completely out of control and it won't stop. 

There are likely as many presentations of dizzy as there are brains affected by vertigo. I personally know only one other person who has Vestibular Migraine. Sometimes when I'm going through a spate of them I'll compare stories with her. It helps.

Emotional Support besides Therapy

Online I joined a support group. I'd forgotten how bad it was at first. How much you want a cure. How hard you search. So many people are desperate for someone to listen to them and to get some reassurance that they'll be okay. So many people are afraid that doctors/family/friends don't believe them.

I'd forgotten all of that. It's hard when you look perfectly healthy. It's hard when all your tests are stellar. Not that you wouldn't want them to be anything else! You just want to be cured and going to the doctor for this is incredibly frustrating. After a couple of years I decided if you go to the doctor without a bone sticking out of your flesh it's tough to get anyone in the medical field's attention. 

Now I really don't care to convince anyone, doctor or otherwise. I can't be bothered with it. I've wasted enough time on it. Now my time is spent living and coping with this shit problem when it crops up, and it does. Somehow it always catches me by surprise. Somehow I still try to figure out what I did to cause it. Did I have caffeine? Did I have gluten? Sugar? Meat? Did I skip a meal and low blood sugar kicked off a migraine?

IS IT REALLY SOMETHING ELSE THIS TIME? 

Recently someone said to me in an aside, you know your dizziness is probably just anxiety. For a moment I just sat there a bit stunned. For starters if it was anxiety that isn't a nothing problem. Stress will kill your ass. Yet after eighteen years of fearing flying dreams because I'll wake up to a spinning room, or throwing back my head to laugh and nearly losing my balance, or sitting in a classroom and grabbing onto the chairs in front of me when everything starts to roll backward in my periphery, I can confidently say Vestibular Migraine comes and goes with no rhyme or reason that I can track. I've tried.

It's NOT anxiety, but it sure as freaking hell CAUSES anxiety. 

Anxiety makes everything worse, but V.M. is just as likely to gob-smack me when I'm blissfully happy.

It's difficult when you're looking for support. That's why it helps to talk to people who have V.M. too. Anyone who lives it will understand. What I can offer up is that eventually the bad spinning fades for now. You can learn to cope. People are amazing. You are amazing. We can get used to anything. I've been able to skydive, hike the Grand Canyon, and occasionally travel the world solo. Yes, vertigo does blindside me at the most inconvenient times now and then. 

Know what? You deal when you have to

Don't give it your time when you don't have to. Even when vertigo hit me in Greece I simply took a day to sit in my hotel room alone and cuss to myself. When it hits I'm more likely to take it in stride now. I'm sorry to say I'm used to it. There are times it still freaks me out and I still try to figure out what I did to cause it. I think as humans we try to control our environment by knowing the reasons for things and fixing them. Maybe sometimes there is no reason. Or maybe there is a reason deep in our brains but there's nothing to be done for it. Maybe sometimes instead of fixing it you have to deal with it. It's not fair, but that shouldn't come as a surprise. What about real life is fair? 

Dude, I write fiction for a reason.

The people close to me try to be supportive now. Maybe those who weren't have fallen by the wayside. My logical husband listens if I need to go over what might have brought it on for the millionth time. He's helped me deal all of these years. The man might be part Vulcan but it turns out I'm into that. 

Recently I thought I'd have to cancel an out of town concert because of vertigo. There's no driving with a spinning migraine. Even when it stops I'm cautious for several days. My BFF offered to come get me and drive me. She lives in another state. She actually drove here to the shire and got me and took me to the concert and drove me home the next day.

The most important part

You don't need everyone to believe you or understand. Some people

have their own limitations or problems to deal with. Some people

It wasn't a vertigo day and this was fun.

are acquaintances more than friends no matter how much you love them. You have to believe you, even if you don't want to deal with it.

If you believe in yourself, the people who really love you will follow.  

The most important thing is that you can get back to that wonderful life of yours.  Vestibular Migraine is just a nasty glitch in your beautiful life and fortunately for us, we get to live.

Links to other Vestibular Migraine Blogs:

Vestibular Migraine is the Devil

It's my Vertigo Anniversary