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

One Tenacious Bitch—Three Side Effects of Writing for Publication

S.R. Karfelt/The Glitter Globe

1.) Just Doing It Isn't Pretty

There was a time not so long ago when I'd have cringed to call myself a tenacious bitch by any definition of the word bitch. Female dog, meaning you're what? Rabid? Aggressive? Protective? Bitchy dogs are usually protecting their puppies. There's also bitch as in bitching, meaning complaining. A harpy. A nag. All negative.

Tough then. I'll own it now. Consider my stories my puppies. I have to fight for my time with them. Know what else? I'll bet harpies get the job done. 

It took me a while to embrace my inner bitch and give her the respect she's earned. I think I'm there. 

She's fearless. I love myself as the tenacious bitch I've grown to be.

2.) Writing means TAKING the time, MAKING the time, not WAITING for the time.

I work hard. Whenever I say that my mind flashes to that scene in Chevy Chase's Christmas Vacation when Audrey Griswold says, "He worked really hard, Grandma" and the Grandpa Art goes, "So does a washing machine."

Sometimes I do work hard like a washing machine. Churning out load after load of shitty drafts, getting nowhere. Sometimes I blog to the void with no responses. Sometimes I network or make contacts to no avail and waste time barking up the wrong trees and chasing my tail. But sometimes I work hard like a smarter machine—let's say The Terminator. I know what I want and I just keep moving forward. 

What I want is more readers. I want my own clan of readers. I want feedback for my work. I give up a lot for that goal and I work smart for it. Sometimes I tell myself I don't have to work this hard. It's a choice. I gave up an excellent parking spot for this terminator washing machine gig.

But the truth is I do have to work this hard. It's the only way to get it done. THIS writing thing haunts me. It's what I've always wanted to do. I see story worlds when I fall asleep at night and when I wake in the morning. Story whispers to me while I'm going about my business in the real world. My husband is always quick to say, "Hey! Where'd you go?" 

How does he know? Do I drool or something?

There's a cost to writing so much, making it publishable, and getting it published. Treating it like the job I've always wanted is how I get it done. 

3.) Writing Requires Sacrifice. Sacrifice isn't Painless.

Mostly I ask for grace from my family, but I lose friends quick as I make them. I can't keep up with everything. I'm not a good friend. I can't be. I put my writing first. Some people can handle that. Most can't. 

I want to write. I need to. This is my thing. My dream, my passion, my life's work. 

I love my friends, but my family comes first. Writing second. No excuses, no sorry, no time for long goodbyes. Do I feel like a bitch for it? No. Regret? Sure, but I've made my choice.

I write. It's what I do.

This week I had a spate of vestibular migraine. It's been a while since I had such terrible ones. I'd forgotten. They really are the devil. I should not be up writing at 2:34 a.m., I should be sleeping but I do this so I can get the job done. If that require one tenacious bitch, okay. Sometimes the cost is more than I want to pay. I pay it anyway. I've made my choice. You in?

One Year Gluten Free Changed Everything—and I Used to Think it was a Bunch of B.S.

For years I thought of gluten-free as a bunch of B.S. and a fad. That's simply based on my own jaded perception of dieting and nutrition. I got sick of the ever-changing healthy/not healthy information shoved down my consumer throat. 

Boy, was I wrong about gluten.

I don't have Celiac Disease and I believed what I heard and read that it was the only real reason to avoid gluten. I never noticed gluten particularly upsetting my stomach, but I'm pretty good at ignoring symptoms when I'm busy. 

Then one fine day I was reading The Better Bladder Book—I'm sure you've read it—because I'd developed Interstitial Cystitis and it was getting worse. The author casually commented that if you have Sjogren's Syndrome (I have a mild case) you shouldn't eat gluten. 

For a couple minutes I sat there trying to recall how long I've had Sjogrens. I stopped tallying at the ten year mark. As Gummy would say, NOBODY TOLD ME. Really they never had, but to be fair I've not seen that doctor since, well, let's not get mathy about it.

I read that book last April and I tried to give up gluten immediately. By tried I mean I stopped eating things with bread and flour. It took me about six weeks or so to realize there's a lot more to going gluten-free. There's gluten in everything: salad dressing, malt, additives, preservatives, dried fruit sometimes (flour on the conveyor belt), CHEESE now and then, meat sometimes, omelettes occasionally, etc.

Gluten is in everything like Corn Syrup used to be.

Before I'd eliminated all gluten from my diet I went through a couple weeks of abject misery with my flaming Interstitial Cystitis. While traveling. It had been progressively getting worse and I was seeing a specialist. Then something miraculous happened.

By last June and about a week after I eliminated ALL TRACE of gluten from my diet the I.C. bladder spasms stopped completely. It's been over a year now and I've not had them one time. Not. Once. They had been stealing about three days a week from my life. Then they stopped. 

I Could NOT Believe it!

My Urologist could not believe it either. I'd seen her quarterly and this spring we realized it's been nearly a year since I had a single episode of flaming bloody wee. *insert hallelujah choir here*

She told me I didn't have to come back anymore. I graduated.

You know how annoying ex-smokers are about secondhand smoke? I'm now way worse than that about gluten. I don't even want to go out to eat anymore. It's a hassle and a surefire way to inadvertently  get gluten. But between travel and social situations it's unavoidable. Usually I research the restaurant ahead, ask when I arrive—if they can accommodate gluten allergies—and quiz the poor waiter.

ARE YOU SURE, I say in my Spanish Inquisition tone.

One of my kids said, "MOM, please stop telling total strangers you'll piss blood if you eat gluten."

Okay, I don't say PISS. But I need them to know I'm not kidding! I stopped saying pee though and have substituted it with internal bleeding. I mean your bladder is internal, right? 

The cool thing, besides being healed OMG, is that I don't miss bread or cake or cookies or anything that's gluten. It feels like poison to me now. Maybe it's just me but I find flaming piss to be quite inspirational. 

Sorry, sorry.

That was a little funny though, right? Now I've been giving milk and sugar the stank eye and wondering if that would help with the vestibular migraine. I mean it's worth a try isn't it? The only thing holding me back is CHAI LATTES because CHAI LATTES. 

Tell me you understand. If you don't, sorry about the health-related post. I have to share my gluten success story for the other canaries. 

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.

Staying on a Houseboat in Amsterdam without Vertigo

S.R. Karfelt/The Glitter Globe

Travel isn't something I do so I can check off a box on a bucket list. It's something I do when an opportunity drifts across my path.

My husband had to go to Germany. He had lots of miles. I was due for a few days off. With some effort and a lot of juggling this was an opportunity I'd been waiting for!

Amsterdam!

Amsterdam meant the Anne Frank house, something I've wanted to do since I read the book as a girl. I knew from online investigations that getting a ticket isn't that easy, but I got lucky.


Sleeping in a houseboat on one of the canals in Amsterdam had also been a romantic notion of mine. Trip Advisor helped me with that. I always read reviews when I'm planning a trip. 

Woontjalk Zuidenwind Houseboat in Amsterdam

When we left home I had no real idea how I was getting to Amsterdam from Germany, but knew it's fairly easy to get around within Europe. The countries are so small it's like going state to state, but the public transportation is easier and fairly inexpensive. 

The staff at the hotel in Germany helped me book train tickets online. Hubby and I hopped a train, jammed our too heavy luggage into an overhead bin, and plopped into the wrong seats on the wrong car. Eventually we got sorted out—reinforced some American stereotypes—and watched Germany fade into the watery flatland of the Netherlands. 

The trip didn't take long and I loved going past school houses nearly suffocating from all the bicycles parked outside. That is the mode of transportation in the Netherlands.

Arriving at the beautiful station in Amsterdam made me long for such convenient travel in the USA. 

There's also an ocean of bikes outside the train station. Walking or riding a bike is the number one way around Amsterdam. I would love to spend a year there walking everywhere and seeing the sites.

It's possible I say that about everywhere I go. 

From a portal of our houseboat we could see a windmill in the far distance. Staying there was a delight after our cramped days in a business hotel. 

Descending the ladder into the main cabin I found the space huge compared to what I'd expected. It could easily fit a family.  

The living room boasted a funky wildly comfortable couch and books everywhere. Portals let in sunlight throughout the entire boat. The eating area has a refrigerator, sink, dishwasher, and a large table. There's even a washer and dryer in a separate room! I immediately washed everything and rushed to see Amsterdam. 

Of first importance? Buying bread to feed to the swans through the portals. A nearby organic gluten-free shop provided a loaf of mostly seeds. 

For a brief time I was the swans favorite human.

The weather cooperated with our visit and we walked to the far side of town to visit the Anne Frank Haus (house). On the inside it's exactly like it was when Anne lived there. You enter through the famous bookcase and climb narrow stairwells. It's small and only so many guests are allowed in at a time. 

The windows are covered like they were when Anne lived there. That way no one from the outside would see someone was secretly living over the jam factory. That also meant little light came in. The only place you can't go into is the loft that Anne and Peter would spend time in. It's not safe, but there's a large mirror beneath it so you can see up into it. 

What impacted me most seeing the Anne Frank house was seeing it as a parent. Her father, Otto Frank, made several attempts to immigrate to the United States but was denied. Realizing how desperately he tried to protect his family from the Nazi's will break your heart. 

When we left I asked my husband what he wanted to do next. He said he was too depressed to see anything else. I dragged him to the Van Gogh museum. Next on my to see list was Starry Night. Imagine the irony when I discovered that particular painting lives in New York City.

It was easy to get turned around and lost in the narrow streets, but that's part of the fun. We stumbled upon Kapitein Zeppos down a minuscule alley and had a lovely dinner. Mostly lovely. The atmosphere is a bit of a magical refuge in the hustle and bustle, and the food is delicious. Except for the local starters we ordered—a fail and the waitress did try to warn us. 

When in Rome try the local food. Not bitterballen in Amsterdam. 

We walked through the Red Light Distract afterward, where the coffee houses sell marijuana and no coffee. I went into one and quizzed the shop keeper. I had questions, people. As a writer I always want to know things. He was great and answered them and didn't even mind that all I wanted to buy was a bottle of water.

Of course that's what I would say but it's also the truth. 

Sometimes I get vestibular migraines and the last thing that sounds fun to me is getting high or drunk. Vertigo is like an ugly combination of both, whether you like it or not. 

Prostitution is legal in Amsterdam. Beautiful women stand in glass doorways framed in neon light to attract customers. It's similar to Bourbon Street in New Orleans with sometimes intoxicated tourists stumbling around and societal norms on holiday.

But you also see families on bikes zipping through and police joking with the working ladies.

Potential customers come up to the doors and negotiate services with the workers.

More than anything I'd have liked to have interviewed some of the women. I had many writerly questions. It's odd to see the ladies next to shops that sell naughty accessories also beside the frozen yogurt shops. It's not particularly sleazy compared to red light districts in other places. It's clean and well-lit and feels very safe. I think it's because it's legal. 

Photography isn't allowed, and if you yank out your phone it could very well end up in the canal because they mean it. 

The Red Light area seems small when compared to the whole of Amsterdam. There are zoos, parks, and museums to explore. The most dangerous thing in the city seemed to be the possibility of getting run over by a bicycle. I'm not kidding about that. Staying alert and out of the way is mandatory, and stay out of the bike lane.

The houseboat was magical. I loved all the space, the water surrounding it, the light, the swans sticking their heads through the portals hoping for food. The bed was comfortable and fortunately for me the entire boat was solid and didn't mess with my constant vigilance over potential balance problems. I'm pretty sure it was anchored down, because I can get a touch of vertigo on elevators. 


The non-judgmental practicality of the Dutch makes Amsterdam a comfortable city. The city is practically bursting with art. All that walking and biking keeps the outdoors in the city. I adored the place and look forward to returning next time the wind is kind enough to toss me in that direction.

Vestibular Migraine is the Devil

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.