Living With BPPV (Positional Vertigo) and The Challenges That Go With It

About 14 years ago I was walking back to my desk at work when a sudden and very strange feeling came over me. It was like the world was moving around me and I couldn’t find solid ground. It wasn’t like the dizziness you get from spinning around or after going on a crazy ride at a fair. It literally felt like the floor was on the ceiling and I had no concept of which way was up.

A very immediate trip to the doctor resulted in a diagnosis of BPPV (Benign Paroxysmal Positional Vertigo). I was told I had an inner ear issue and protein-like particles were throwing off my equilibrium. I was also told there was no way to predict if or when it would go away but that I wouldn’t die from it and there was nothing they could do medically to help me. And then I was sent home.

As a 23-year-old active woman, I was terrified beyond belief because the moving ceiling thing also made me puke non-stop. It was so bad I couldn’t work, or basically do anything. So there I was confined to my bed, hoping that this was not my new reality. And then I did what every curious person would do. I started to research online. I figured there had to be more information that would help me figure this thing out. Unfortunately, all the internet did was make me paranoid. I thought I was misdiagnosed and my reality was even worse than I had feared.

Thankfully the debilitating vertigo did go away after about a week and I went back to work and to the sports I loved. But the episodes came back randomly and without warning. The next time it lasted for only a few days. After that it came back for a day or so and would recur periodically a couple of times in a week.

Unfortunately, I could never anticipate an “episode” and sometimes it happened at the most inopportune times. My favorite example was a job interview. The very senior, hard-core woman who I was interviewing with invited me to take a seat on the sofa in her office and well that was it! It was like the walls were moving around me. Now I dare you to try to speak coherently, look someone in the eye and not appear as though you are high on some prescription meds while the earth literally feels like it has gone off course. It’s impossible. So I did the only thing I could do and shared the fact that I had this health issue (not exactly great material for getting hired) with the scary woman. Well to my surprise she leaned in with the most compassionate look on her face and said, “I have it too. Isn’t it the most inconvenient and terrifying thing!”

The good news is that I got the job (we were now kindred spirits) and the other good news is that (touch wood) after 14 years the episodes are shorter and less frequent. But the bad news is that there are many people walking around like me (many much worse) with very little that can be done.

There are some head manipulations that are believed to work but I went to the top specialists to have it done with little success. (Admittedly I was a skeptic from the beginning, but all he did was cup my head in his hands and twisted my neck from side to side.) There are also some crazy exercises that involve falling from a seated position on the side of your bed and then getting up and doing the same thing on the other side. (An attempt at this only won me a few bruises.)

With all that modern medicine can do, it still baffles my mind that these little pebbles are rolling around in my head and there isn’t a damn thing that can be done about it. So the next time someone tells you they have vertigo remember there isn’t a little pill that can cure them. But it might just help them land a job!

(Photo: Jakopo AKA Braco)

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    • Carole

      I have positional vertigo, especially when I exercise. I take a small dose of meclizine AM and PM, and it’s about 90% controlled. It’s also not as bad when it happen; I get dizzy but I don’t throw up.

    • Courtney

      Oh my gosh.. I’ve had this twice in my life.. once when I was 22 and last fall (28) after I got the flu shot and I *know* that flu shot triggered it.. both episodes lasted a week. I couldn’t get out of bed and with a toddler that is ROUGH. I wanted to chop my own head off…. What a nightmare this vertigo is.. I have meclizine in my medicine cabinet just in case but I hope I never need it again. Nightmare!!!!!!!! Now I have to leave this post so I can stop thinking about it. ;)

    • Greg

      I have had BPPV for 26 years and it is very misunderstoood. When I got my last bad bout (they normally respond to the Epley manuever and are gone in a week or so) it didn’t go away and has now gone on, in varying severity, for three months. I carry a sidearm in my job, but my employers were ‘skepical’ about how being dizzy was a problem. My Dr says I have one of the more severe case possibilities. Medication can help (Betahistine or Sert) but it is very rough to deal with, even after nearly three decades of experience. Best wishes to the author and other readers.

    • Jeremy Leciester D.C.

      It’s interesting that you mentioned a job interview was one time when it came on. I treat Vertigo patients and for some of them what is going on in their neck has a huge bearing on their vertigo. I wrote this blog post that talks about some of the research connecting neck problems and vertigo.

    • Gliss

      I was recently diagnosed with positional vertigo about 3 months ago. My doctor prescribed Antivert to treat it, but it made me so crazy I stopped taking it. I couldn’t work, I couldn’t drive, I couldn’t take care of my family. I have since decided I just have to live with it, because according to my doctor, I next have to see an ENT if the symptoms persist, which they have. It happens every time I look up to reach for something, when I look down as I’m getting dressed in the morning. It’s very frustrating, because although the episodes don’t last but a few seconds, they are very frequent. I try to avoid looking up or down, I try to keep my head as straight as possible when I’m driving, only using my eyes to look at the rear-view mirror, or making deliberatly slow movements if I have to look at my side mirrors. The scary part happened last night, when I realized that even as I’m lying in bed, if I move my head up to look at the ceiling, that horrible disoriented, off-balance feeling comes over me, and it only goes away if I close my eyes and breath deeply for a few seconds. It’s not easy, but I suppose I can live with it.

    • Robert Frost

      I’m currently a soldier in Afghanistan and I was diagnosed with BPPV a couple of weeks ago. At first I though I was just dehydrated and that was what was making me feel basically drunk. Then it got so bad that I had to go to sick call. After the diagnosis and a few Epley maneuvers I was given a prescription for meclizine. That day it got to the point where I was throwing up constantly. The meclizine has helped tremendously by keeping me from being nauseous even though it doesn’t keep me from being disoriented. It’s really been a help since you can’t really skip a work day in a war zone haha (which is every day). It was bad for a week and then I was good for a week and now I’m back to bad episodes. The only thing I worry about is how this is going to affect me when I get back to the civilian world stateside as I no longer have a wife that can drive me to work or take care of things when it gets bad. A lot of times I can hardly stay on my feet walking, let alone driving. From what I understand, it tends to come in 2-8 week bursts every six months or so, which sounds more manageable. Just don’t won’t to go from being a soldier to being a non-functioning member of society. Especially so quickly. Especially at the age of 24.

    • Jeff Gaunt

      Have you ever had the Epley maneuver performed, or failing that, the Semont maneuver? Both of these cure acute BBPV in over 90% of cases. I myself have a much more complicated and atypical type of vertigo that definitely involves BPPV, but has other underlying causes. I’ve been struggling with it for 15 years myself, and just hit another bump last week. Hope you feel better soon.

    • Mary Holzwasser

      Thank you for your story…I realize it was written 2 yrs ago but I hope you see my message..I am now realizing that this is something I just need to learn to live with because no matter how much i twist and turn my head with this manuever and that still dizzy…Such is my life..I need to learn to just deal with it

    • Momof4inQC

      People who don’t have BPPV don’t understand how horrible it is. I had an episode happen in the middle of getting dental work done- it was so awful, hard to endure, & even hard to explain to people who don’t understand. I need to make a hair appointment, but can’t decide if I can allow myself to risk it when I had an episode today. Now I can’t eat either because I feel like vomiting. I once tried the Epley Maneuver & it made me SO nauseous, & cured nothing. I was in the doctors office of a specialist once, when I told him I hate BPPV, that it’s horrible – he responded, “well, at least you don’t have cancer. This isn’t going to kill you, and there’s things to fix it”. He has NO idea. :(