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Once upon a time, I used to love, love, love roller coasters (the wilder the better), merry-go-rounds, carousels, and all that jazz. At some point many years ago, I regularly started to feel nauseous and pretty damn awful every time I got off a roller coaster. It was awful enough that I stopped going on roller coasters, and just looking at them now makes me shudder. A few years ago, I also found that just riding the carousel at the zoo with my son made me dizzy, and I was happy when he was old enough to ride it by himself as I stood on the sidelines.

And then a couple of years ago, I was feeling dizzy more and more often throughout the day until it became a near-constant. One day when I was feeling okay, I looked at my iPhone in the car and felt woozy within seconds. That incident had me googling, and I found that I wasn’t crazy: the iPhone has a “motion smoothing” feature that creates animations (for everything from scrolling to switching apps, to returning to the home screen) that can cause motion sickness for some people. Once I found this out, I went to my iPhone accessibility settings and turned the motion smoothing OFF.

My daily dizzy disappeared. To say that was a relief would be a wild understatement.

But I still had to avoid roller coasters and carousels, which is kind of a bummer.

Also a few years ago, I was walking down the hallway at home and suddenly the floor began to tilt. I mean, it didn’t really, but it felt like it. The floor seemed like it was tilting, my body felt inexplicably heavy, and I was having a hard time walking straight. I was horrifically dizzy like I’d never been before, and laying down didn’t help unless I laid down a particular way and stayed absolutely still.

I was terrified because someone in my family had had acoustic neuroma, a tumor (non-cancerous) that grows on the vestibular (balance), auditory, and hearing nerves in your inner ear. It can grow very large, and it can be devastating. Some people have to do rehabilitation after having it removed in order to walk again. Some people lose their hearing on that side, and some lose muscle tone on that side of their face. Not to mention the fact that surgery involves shaving a patch of hair, cutting a window out of the skull, and removing a growth from nerves that lead to the brain. (The person in my family did really well and was able to walk pretty quickly after. I attribute extreme stubbornness to that fact!)

I’d been dizzy before, but this was something else altogether. I was scared and thought that maybe I had that same tumor or something worse. At the time, Husband was working for a company that included house call doctor visits, so I asked him to call and have someone come (there was absolutely no way I was getting into a car!). Then he got scared because I’m “tough” and usually just power through things, and I hate doctors. He had enough experience with me to know that when I say, “Call a doctor,” it’s serious.

The doctor came, looked me over, checked my pupils, asked some questions, and finally said, “You have Benign Paroxysmal Positional Vertigo.”

No way! Even in that condition, I laughed because an ex-boyfriend had dated a woman before me who’d written about this very thing. Except, now that I had it, I realized she probably just thought it sounded “cool” and dramatic, because what she’d written about it wasn’t accurate. (It’s not a “disease,” for starters.)

Benign Paroxysmal Positional Vertigo (or BPPV) is basically misplaced rocks in your head. That’s how I like to describe it, anyway. But a little more technically speaking, it’s when the otoconia (calcium carbonate crystals) move from their rightful spot embedded in gel in the utricle into one of your three semicircular inner ear canals. Those crystals help you sense gravity, and movement so that your body can adjust appropriately. When the crystals (or just one crystal) is out of place, it just keeps rolling around and telling your body that things are moving when they’re not. “Benign” means not cancerous or deadly (although it sure as hell doesn’t feel benign); “Parosysymal” means sudden, brief, and intense; “Positional” means it’s related to movement and the position of your head; and “Vertigo” is… yeah, vertigo. (Vertigo technically means the incorrect feeling of movement.)

The reason I only felt ok when I was laying down as still as possible is because then the wayward crystal/s had settled and weren’t being jostled around.

There are a number of “maneuvers” (a series of specific movements) that you can do to help get them back in place, such as the Epley or Canalith. The doctor showed these to me, had me do them, and lo! I felt better almost immediately (though I was afraid to move to quickly for a while after). It is, hands down, the worst I’ve ever felt. I’d rather give birth than have BPPV.

I thought it was a one-off, and then it happened two more times. The second time was the worst because every time I tried to do the maneuvers to fix it, I wound up running to the bathroom to hurl. I threw up more that day than I think I have in my entire life. And then after puking, I had to somehow make it up off the floor of the bathroom and back to bed.

It’s not fun, and now every time I feel the slightest bit dizzy, I get anxious. I wasn’t kidding when I said I’d rather give birth. But for me, the onset of BPPV is usually preceded by what I can only describe as a “whooshing” sensation followed by a few moments of manageable dizziness that turns into me not being able to walk straight within the hour.

I hate the BPPV more than anything, but I’m kind of fascinated by this turn of events. I’m fascinated because the mechanisms of the brain and are so amazing—that’s why I studied neuro for a bit (and still think of going back to it). But I’m sad because I used to be tough as nails. I never got seasick, either (now I can’t even handle spending a day on a houseboat). Maybe it’s retribution for all my thrill-seeking or damage from all the drugs I did. I jest. I don’t believe in that kind of “karma,” though I did fall over and whack my head while doing way too much ecstasy once when I had a very similar heavy/off balance sensation. (This was almost twenty years ago, don’t judge.)

More likely than not, I just have some odd inner ear stuff going on that I’m more conscious of now. This is partly why I rarely drink anymore. After I had my son, I just felt worse and worse after drinking, and it destroyed my sleep. I protect my sleep at all costs. The awful feeling the next day wasn’t worth it—and I’m not talking about drinking so much that I’m trashed. Just a couple glasses of wine will do it. (Tasting menus that include five glasses over several hours… nope! Can’t do!) Just one small glass of wine can cause the spins when I get up in the middle of the night and in the morning, which makes sense—alcohol temporarily makes the fluid in your inner ear more viscous.

I also can’t use noise-canceling headphones. They make me dizzy, too! I thought I was nuts, but fortunately my husband is an expert in all things sound and audio related, included ear anatomy, and he explained why this happens and that it’s a real thing. (You’d have to ask him about it. I already forget the details.) This is noteworthy because if you remember, I have misophonia.

Very short, simplified version: people with misophonia are set off by “trigger” sounds, usually “human” related, such as chewing. There’s an increased connection to the fight-or-flight system and increased myelination. Myelin is the insulating sheath wrapped around the nerves, and if you have thicker myelin, then electrical impulses travel even quicker. All this is to say, the trigger sounds of a person with misophonia have a fast, direct, strong connection to the fight-or-flight impulses which makes for a very cranky, rage-y, anxious, and/or hugely emotional reaction. My case is “mild,” so I have custom earplugs with a filter to wear out in public. I also have freakishly good hearing for high frequency sounds, which means when someone chews, clears their throat, or makes other noises that set me off (which are all in this higher frequency range),it packs a bigger “punch” for me. My ear plugs have a 10dB filter on them, and they have helped when I’m out in movie theaters, restaurants, etc.

My husband suggested I use noise canceling headphones when I started taking the bus to the University of Washington, for classes, years ago. This was before I knew about the misophonia. He’d offered them to me because I would text him in a rage or upset over all the noises people were making, the talking, the phones on speaker, etc. (This is also probably very much related to my ADHD, because people with ADHD can’t filter out unnecessary sensory information. We notice everything, and I mean everything.) It’s also attributed to something called “leaky sensory gating.” Look it up, our brains are so freaking cool. But I quickly handed them back to him, telling him they make me dizzy, and is that normal? (Yes, thank god, he told me something that happens to me is finally normal. Not very common, but it has a very normal and practical explanation.) Being married to an audio guy when it turns out you’re kind of a freak with lots of inner ear stuff is gold!

I could be sad or frustrated at dealing with all this, but the truth is, it’s just been an opportunity for me to learn more. I love brains. The thing that sometimes does make me sad or frustrated is the realization that undiagnosed ADHD is what caused me to rationalize my way out of the neuro program at the University of Washington.

And that there is why I talk about all of this. It thrills me anytime someone tells me something I wrote sparked an “a-ha!” moment for them. I’d love for there to be more awareness of all these things, so that people don’t have to struggle as much as many of us have before figuring it all out. (PS My heavy, personal posts about the ADHD and related issues are over at Too Many Shiny Objects.)

Plus… come on. All this brain stuff is so awesome!!

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