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. 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 absolute hot garbage mess when I get it. Zero brave. Even though I've had it for twenty-four years now, it still comes as a total surprise every single freaking time I get it. I really don't know why I get it or when I'll get it. 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 the bottom of 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 the 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 all 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. 

My Dizzy Dizzy Life—Part Three

 

On the other side of chronic vertigo

After twenty years of vertigo I'm trying to adjust to life through a new lens. It's straighter. I've noticed that in my photographs over the past many years, that I always have my head tilted slightly. Apparently I was trying to physically help my off-balance brain see straighter. Since completing BPPV therapy with a Doctor who specializes in VRT, Vestibular Rehab Therapy, I've tried to stop doing that. I've automatically stopped shuffling my feet like I've done for years, possibly decades. When I walk down the hallway, I don't have to run my hands over the wall. In the bathroom in the dark I still occasionally touch the counter, touch the door, touch the wall, centering myself. Now, it's more of a habit than a necessity. I'm just making sure.

When standing off-balance I'd never keep my feet close together, instead keeping them far apart. The better to spread out my center of gravity and keep my balance. It didn't stick out as much as occasionally staggering when you're simply standing in place. My brain had learned well that gravity isn't to be trusted and neither is my vestibular system. I've completed weeks of exercises to encourage my brain to trust it. I don't think it's entirely on board. Maybe if you tease your brain for twenty years, you lose credibility. 

At this point though I've graduated from my VRT rehab, I'm still working on physical therapy exercises to teach myself it's okay to turn my head suddenly. It still doesn't feel right. It doesn't feel safe. I keep testing myself, and will turn my head suddenly trying to catch the world wobbling. So far it hasn't wobbled. I know it might, I know that my BPPV can and probably will come back. I also know what to do if it does. It helps that I also know that if it's really bad, that I can call my VRT specialist doctor and she'll help. At least once though, when a bit of vertigo kicked up, I righted it myself. It felt incredible to know how to do that.

What a crazy mad skill to have

Something else I learned is that you don't want to do an Epley Maneuver every day, "just in case". That can mess everything up. Especially since I have it in both ears. There's a science to keeping loose crystals in check. As my VRT doctor said to me many times, trust the process. She also encourages me to push my comfort zone now, to turn my head just because, to quickly look up and down. My goal is (this is nuts and I'm aware of that) to roll down a grassy hill with my favorite four-year-old next summer. I did it once last summer while still living with chronic vertigo. In a fit of half-madness I thought I'm not letting vertigo control my life! So I rolled down a little hill with Four. 

Holy effing tornadoes in my brain I think I may have rolled into another dimension 

When we stopped rolling at the bottom of the hill, my brain was still going round and round. Four was chatting away and onto the next game while I was 100% sure that my entire brain had come loose and that maybe my whole vertigo problem all along was that my brain wasn't attached properly like everyone else's. Maybe it literally does just float and bob in my head like I long suspected. I bribed her with whatever TV show she wanted to watch so we could go inside and I could sit and not move my head. 

Still, I want to try it again someday. I'm feeling much more grounded but today is not the rolling down the hill day. I'm still at the part where I sit, focusing on something across the room, stand and spin, and refocus on the same spot, before sitting and doing it again and again. It's something I try to do faster and faster. There are other exercises, but I'm getting used to them. They don't bother me. I keep my balance. It's amazing. I'm taking walks outside in the dark again, without my giant Gandalf-like walking stick! 

I'm hopeful that I'll have far more normal days than dizzy days. 

The VRT doctor told me that nothing I can do to my ears will cause BPPV (Benign Paroxysmal Positional Vertigo). I can't wait to swim underwater in the summer. It's been a long time! I've been the most cautious snorkeler for a very long time. One thing she warned me about was that flying can set it off. My annual trip to Greece is one long journey. This year it took me four days to get to the little island I go to. Yes, I did get vertigo there, and again after returning home. So I'll be apprehensive about it, but I'll go anyway. At least now I know how to diagnose which ear is affected and I can perform the Epley Maneuver on myself. If both ears are affected, that's when I video call the doctor. 

What about the migraine with aura I've had since 2001? It's still there. My eyes are light sensitive more often than they're not. There's a host of odd visual disturbances that anything from a sunny day to walking into a store with certain types of lighting can kick off. Working out or opening the oven door can change my body temperature fast enough for a migraine to start. Sound can do it. Migraines come and go. I've never been able to figure out why every time. Sometimes they just happen. My hope is that not having to live with chronic dizziness will help my sensitive migraine brain settle down. Maybe I'll get less of them. Time will tell. 

My VRT doctor told me that her theory is that migraines follow vertigo due to the strain on your brain. It's tough to maneuver the world when you're always off balance. When I started therapy she had me take a test about my dizziness. It was the first time I'd ever been asked these questions, relevant questions, questions that cover what it's really like to have vertigo. I practically cried. Finally I knew I was in the right place. The first few questions on the test were the first few things I told every single medical person I saw back in 2001, twenty years ago. At that time those remarks seemed to lead doctors to jump to the conclusion that I had depression. I didn't. As I've said time and again I had anxiety. Try living in a body that spins all the time and see if you don't get anxious. But I think it was the spinning that came first. 

Dizziness Handicap Inventory Questionnaire  (Rehabilitation Medical Clinic Info)                                                                                                                                                                      

Instructions: The purpose of this scale is to identify difficulties that you may be experiencing because of your dizziness.  Please check “always”, or “no” or “sometimes” to each question. Answer each question only as it pertains to your dizziness problem.

 

	Questions	Always	Sometimes	No
P1	Does looking up increase your problem?
E2	Because of your problem, do you feel frustrated?
F3	Because of your problem, do you restrict your travel for business or pleasure?
P4	Does walking down the aisle of a supermarket increase your problem?
F5	Because of your problem, do you have difficulty getting into or out of bed?
F6	Does your problem significantly restrict your participation in social activities, such as going out to dinner, going to movies, dancing or to parties?
F7	Because of your problem, do you have difficulty reading?
F8	Does performing more ambitious activities like sports, dancing, and household chores, such as sweeping or putting dishes away; increase your problem?
E9	Because of your problem, are you afraid to leave your home without having someone accompany you?
E10	Because of your problem, have you been embarrassed in front of others?
P11	Do quick movements of your head increase your problem?
F12	Because of your problem, do you avoid heights?
P13	Does turning over in bed increase your problem?
F14	Because of your problem, is it difficult for you to do strenuous housework or yard work?
E15	Because of your problem, are you afraid people may think that you are intoxicated?
F16	Because of your problem, is it difficult for you to go for a walk by yourself?
P17	Does walking down a sidewalk increase your problem?
E18	Because of your problem, is it difficult for you to concentrate?
F19	Because of your problem, is it difficult for you to walk around your house in the dark?
E20	Because of your problem, are you afraid to stay home alone?
E21	Because of your problem, do you feel handicapped?
E22	Has your problem placed stress on your relationship with members of your family or friends?
E23	Because of your problem, are you depressed?
F24	Does your problem interfere with your job or household responsibilities?
P25	Does bending over increase your problem?

Yes, yes, yes, all of it

My goal in sharing my long vertigo story with you is to help other people with vertigo. Please keep in mind that if you have vertigo often and doctors haven't helped you, it's possible that you need a vestibular specialist. What if some of your dizzy problems can be helped? Or fixed even? I also want to share my good news in a time when good news seems so scarce. I'd like to commiserate too, on how difficult it is to find the medical help you need. Especially right now when so many people desperately need help. If you're like me and trying to endure another bout of vertigo like I've done so many times, you just might be up at night, searching on your phone, trying to figure out what the heck this chronically recurring and random spinning is! What I'd say to you is if you're not getting answers maybe it's time to ask for a referral to a doctor who specializes in VRT. Vestibular Rehab Therapy. Don't wait for answers that might help you lead a more grounded life. 

And guess what? Guess who has been going sledding at night under a full moon lately? This chick that's who. I'm putting my new and improved vestibular system to good use and it feels incredible. 

My Dizzy Dizzy Life—Part I

My Dizzy Dizzy Life—Part II