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. 

Saturday, January 1, 2022

My Dizzy Dizzy Life, Part II

Could there be a happy ending?

After twenty years of living with chronic vertigo, I found something that can potentially stop an attack and I'm not trying to sell you anything. It just took me this long to find someone who could help me. My symptoms are random bouts of extreme vertigo and regular days ranging from slightly off-balance to not driving because of it.

There are degrees and categories of dizzy

There are variations of dizzy. I'm basing this entirely on living inside this fun house of a body for the past twenty years. I'm not a doctor or a medical professional. I'm just some dizzy chick who's had this for twenty years. There were times I'd try to squint to focus on something that seemed to be moving when I knew it wasn't. Sometimes I'd be walking and stop and my head would feel like it bounced on ahead without me. I'd turn and my head would feel like it kept right on turning. You can have a swimming feeling in your head. A bouncing feeling in your feet. A spinning room that makes it impossible even to walk. There were times I'd wake up spinning and swooping. 

For the past twenty years I've not watched the news (silver lining?). All that scrolling and busy screens make vertigo worse. Smart phones helped because for whatever reason the little phone screen doesn't bother me as much. I've written entire novels on my phone (I think I may have damaged my thumbs doing that), and I watch movies on it all the time. Sometimes I don't look at the screen much, but it's worked when regular televisions and monitors couldn't. 

After the first five years or so of searching for a diagnosis or cure, of running from doctor to doctor, I admittedly gave up on finding any help. Desperation and frustration made me set out to learn to live with chronic vertigo. It's not an easy thing to live with. Giving up was simply what I had to do to survive. I don't do well with meds and had more problems with side-effects than living with chronic dizziness—that is saying something. I'd had MRI's and CT's, seen neurologists and any specialist I could get a referral to (and some I self-referred myself to). My prescription med side effects included tachycardia, lots of skin conditions, being misdiagnosed with pheochromocytoma from a migraine preventative, and various bouts of instant depression whenever I could be coerced into taking a new and improved SSRI for depression that I didn't have (until the third day of taking an SSRI gave it to me). 

The biggest medical side effect was lost trust

I didn't walk into the first doctor's office apprehensive. In time I definitely became that way. That's why I have to accept that part of the reason that my vertigo has gone on so long is because I quit trusting that there was a doctor that could help me. 

There's a bottomless frustration bordering on despair that comes when you realize that doctors aren't listening to you. It happens after you've gone from physician to physician and when you begin to explain why you're there, what's happening, you once again get interrupted with someone finishing your sentences, asking if you've been depressed and if you've tried this or that anti-depressant? 

When it comes to reading people, I have a gift. I can see when I've lost someone's interest, when they don't have time for this, when they think they understand and they're going to brush me off. I realize doctors don't have much time for complex problems. I didn't realize that at first. I didn't realize I was a complex problem. In hindsight I don't think I was.

The end result was that after years of frustration and unable to garner any medical attention for a condition that got worse with "help", I moved on. You see, I wanted to live. If it had to be with vertigo, it was better than an ambulance ride and a thundering heart or even another doctor who thought I was a hypochondriac or a "hot-house flower".  

Fast forward twenty years

If you've been around The Glitter Globe for years, you know I've occasionally written about my vertigo. In fact, I call this blog The Glitter Globe because of my vertigo. I've often said if you took my brain and set it afloat inside a Glitter Globe, that's what vertigo feels like. Having vertigo can make focus challenging. It's like bobbing/spinning/drifting between realities. There's the nice stable reality most people get to live in, and the half-crazy Fun House one where my vertigo has me flitting between was that real or was that me? 

A few months ago when I was having a bad round of vertigo, I managed to get myself down the hall to my office. I have a nice comfy corduroy chair that I sit in. I put my feet up and don't move my head. Eventually the spinning slows. That night I searched online for books about vertigo. Since my vertigo started with six months of cluster migraine back in 2001, I've always figured what I had was Vestibular Migraine. I found a book that encouraged me to explore other options too. That's why I looked at BPPV.

Benign paroxysmal positional vertigo (BPPV)

My doctor referred me to a Physical Therapist with MSPT, DPT, and certified VRT after her name. If you have vertigo, it's the certified VRT that you need to find. It's a doctor with specialized training for Vestibular Rehab Therapy that you need. With vertigo it's doubtful you'll get the help you need with a doctor who doesn't have the training or experience you need.

Going to see this doctor I was nervous. I've been Epley Maneuvered many times in the past. It made my vertigo so much worse. I hated when doctors started talking about it. Eventually I refused to allow them to try it. When I wound up with vertigo in Greece a couple months ago, a friend who's a doctor said something to me that I needed to hear. She said, what you're describing sounds like BPPV, but don't just go to the doctor on the island for the maneuver. If a doctor doesn't do it all the time and doesn't really understand how to—they can make it a lot worse.

There's no crime in not knowing how to fix something. The crime is in faking it and hurting someone

My doctor friend is one of my favorite people. When I was trying to help Gummy through her dementia, she gave me great advice and I've respected her ever since. She often tells me that when it came to medicine she'd check her advice by asking herself, what if I'm wrong? As in if I'm wrong will this patient potentially die because of my advice? Or in my case, will this patient spend the next twenty years spinning? In a world where we can Google anything and talk about it like we know what we're talking about, we're all guilty of this. 

Unfortunately people have a tendency to believe doctors. At least at first

When I saw the VRT specialist I listened to her explain what we were going to do. In my head I was thinking, well, here we go. Spin City. Why did I agree to this? I was thinking who I could call for a ride home. And that maybe next spring I could fly down and stay with my friend in Texas to go see that Vestibular Migraine doctor down there. Maybe COVID won't be as bad then. At this point I was guilty of not trusting anymore.

Dr. VRT as we'll call her, had me sit on the table, legs straight out in front of me. She took my glasses and held my head in her hands and watched my eyes very closely and explained exactly how she'd drop me back, let my head dangle a bit off the table but be holding it and watching my eyes. Don't worry, she said, I've got you. Even if you throw up it's okay. I'm used to that. It happens all the time. Then she dropped me back flat, head turned towards her, and dangling off the table, watching my eyes. I couldn't focus on her then. I couldn't focus on anything. I was spinning. 

After a few more maneuvers she said, you definitely have BPPV. It's on your left side. I'm going to take you through the Epley Maneuver. There are three loops that make up your vestibular system in each ear. They're so small that they're no larger than the nail on your pinky finger. There are crystals inside of those tubes that can come loose causing vertigo. This exercise moves them into a place where they won't bother you. 

As we went through the movements, occasionally she'd kind of shake my head the way you would when you've trying to get the last of something out of a container. It never hurt. It was disorienting. But I'm used to that. What's weird is that when I left I wasn't spinning, and everything seemed straighter. Like the horizon, buildings, my house. For so long I've walked around seeing the world through a damaged lens, that seeing it straight felt off and weird. Like when you're nearsighted and you first get glasses.

Of course nothing is that simple. I've now had six weeks of treatments with daily exercises in between and I needed all of it. I wound up having BPPV in both ears and it showed up not long into my treatment. It makes it more complicated to correct because the maneuver on one side can trigger a problem to occur in the other. That's why, as amazing as the internet is, as incredible as it is to get information from YouTube, the odds of fixing something like this yourself seems about nil to me. Just like every doctor who attempted this on me over the years made it worse, winging it yourself can make it worse. There's a real knack to it and you need to find someone who has it. Someone who knows what they're doing. I can attest to the fact that it's not easy to find someone to help with dizziness. But if you have vertigo, don't wait twenty years to start searching for a doctor who specializes in Vestibular Rehab Therapy, VRT.

Am I perfectly stable without a wobble now? I can't say that yet, but I can say that I'm about 80% less dizzy. Now I'm working on teaching my brain that unpredictable movement isn't a cause for alarm. I'll explore the difficulties of long-term vertigo recovery in My Dizzy Dizzy Life, Part III, coming soon. Sign up for notifications (over on the right hand column, you may have to scroll down to find it) if you don't want to miss it. 

My Dizzy Dizzy Life, Part I

Vestibular Migraine is the Devil

Vestibular Migraine