Twenty-Four Years of Chronic Vertigo

 

Ugh. Twenty-four years of chronic vertigo isn't a badge I want to wear. It's not even some grand accomplishment to brag about. Like I've survived this or endured this! Go me! It's not like I have a choice. It won't go away for pity's sake! 

I have a friend with Parkinson's Disease and she says that people will tell her how brave she is because she travels the world solo and continues slogging along in her beautiful DIFFICULT life despite the disease, but she says that she isn't brave because she has absolutely no choice but to fight it and move along. I tell her the bravery is in fighting it and doing her absolutely best despite the challenges but I get what she's saying. 

For me, I'm brave every day I don't have vertigo. I'm an absolutely hot garbage mess when I get it. Even though I've had it for twenty-four years now, it still comes as an absolute surprise every single freaking time I get it. I don't really know why I get and I get it when I get it, and I don't know what brings it on. (And I have a small hill of paperwork from trying to find a pattern of cause and effect.) It just shows up and I never know its coming. 

Sometimes I get it when I'm sleeping and sometimes I  wake up to it. Sometimes I get it when I throw back my head and laugh and sometimes I get it when I'm sitting and reading or watching a movie. It comes when it comes and I see no rhyme or reason to it. 

There are many variations of vertigo. Mine can be like full spinning or turning to look at something and staggering because I forgot not to ever do that, or tripping off an elevator because holy crap we just landed, or this fun little bounce bounce bounce thing that my head sometimes does when I'm not actually moving, or having to avoid anywhere with a ceiling fan swirling because holy crap everything is spinning, or a clock pendulum going back and forth and making me feel like I'm swinging back and forth, or news scrolling along a screen, or, humiliation upon humiliation, actually not being able to stomach a rocking chair. 

And some days I'm fine, and almost normal. Or at least I can fake it many days. When this first started and when I gave up on getting any answers to why or help from the medical community, I made a bucket list and went skydiving, hiked The Grand Canyon, ran races, traveled the world solo some, and I didn't die. Yet. 

It's just that there are many days when it feels like I'm going to die because I'm spinning. At this point in time I can honestly say that dying isn't my fear, it's the spinning. 

This is not an every single day problem, thank god, and I don't usually have all of those things happening at the same time. Once, a doctor suggested I try a daily antihistamine to see if it helped, and I didn't get bad vertigo for TEN ENTIRE WHOLE BLESSEDLY AMAZING WONDERFUL MONTHS. But then I had an allergic reaction to NSAIDs and had it for two months. That was last year. 

I think my vertigo is a perfect storm of a MAST cell problem and it stems from chronic migraine because it's mostly intertwined with migraine headaches and allergic reactions. They all showed up at the same time in the same year with each other. I do get BPPV (Benign Paroxysmal Positional Vertigo). That's those ear crystal rock thingies that break off  in your semi-circular canals in your hearing apparatus. There is something called an Epley Maneuver that can help reposition those suckers. That rollover is not a one-trick pony. It depends on where in the canals the crystals break off. It works when done properly by someone who knows what they're doing and can tell where in your canals those crystals are wreaking havoc. 

A specialist can tell where your crystals are by reading variations in the nystagmus in your eyes. If it is done improperly, they can make it a lot worse. I actually have a doctor who specializes in BPPV and she's great. The problem is that when my BPPV gets activated it will continuously act up for weeks and weeks and weeks and forever (a month of vertigo is equal to forever I promise). Also,  I'd like to invite whoever calls it benign to give it a whirl for twenty-four years. 

There is also something called PPPD which is Persistent Postural-Perceptual Dizziness, which in my words means if you've had vertigo for decades, your brain expects it and in that expectation, it can create some of it. Brains are amazing but coupled with the things that your body can have go wrong, it might not always be trustworthy. 

Mostly I write these occasional vertigo columns to reach out to others who might have it. I'm not a medical professional in any way shape or form. I'm just another spinning body in this universe, and I DO NOT like it. When I read up on vertigo, which I like to do when I have it and I'm trying to not to move my head for days, I'll hold my phone off to one side of my vision and try to read about vertigo from the corner of my eye, without moving my head. I'm kinda waiting for someone to have a cure I can get on Amazon. What I notice is the same old same old, although there is more information now than ever. I see lots of, "Once you go through menopause, it usually stops." Just shut up. No it doesn't. (Like growing out of puberty will cure your acne! LIAR!) Okay, maybe for some one or two persons menopause stopped their vertigo, although I suspect it's more of a hypothesis than a reality. Because if that's a thing, that retiring your uterus means stopping chronic vertigo, there'd be a lot of women asking surgeons for an early retirement of said uterus.