Thursday, January 20, 2022

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.








Does looking up increase your problem?





Because of your problem, do you feel frustrated?





Because of your problem, do you restrict your travel for business or pleasure?





Does walking down the aisle of a supermarket increase your problem?





Because of your problem, do you have difficulty getting into or out of bed?





Does your problem significantly restrict your participation in social activities, such as going out to dinner, going to movies, dancing or to parties?





Because of your problem, do you have difficulty reading?





Does performing more ambitious activities like sports, dancing, and household chores, such as sweeping or putting dishes away; increase your problem?





Because of your problem, are you afraid to leave your home without having someone accompany you?





Because of your problem, have you been embarrassed in front of others?





Do quick movements of your head increase your problem?





Because of your problem, do you avoid heights?





Does turning over in bed increase your problem?





Because of your problem, is it difficult for you to do strenuous housework or yard work?





Because of your problem, are you afraid people may think that you are intoxicated?





Because of your problem, is it difficult for you to go for a walk by yourself?





Does walking down a sidewalk increase your problem?





Because of your problem, is it difficult for you to concentrate?





Because of your problem, is it difficult for you to walk around your house in the dark?





Because of your problem, are you afraid to stay home alone?





Because of your problem, do you feel handicapped?





Has your problem placed stress on your relationship with members of your family or friends?





Because of your problem, are you depressed?





Does your problem interfere with your job or household responsibilities?





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. 

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