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Longtime sufferer and just recently joined

Hi, my name is Jeff. I’ve been dizzy/off kilter every day for the last 24 years. On good days I’m on a boat in calm seas (this is my baseline normal) and on bad days I’m in a clothes dryer going end over end.

Mine started pretty normally when I was 13. Was at a family reunion and woke up at about 2 am with my eyes moving on their own followed by being horribly sick. I didn’t know it at the time but this was my first episode of nystagmus. I crawled to the hotel bathroom and vomited for hours. I thought I was crazy (how do you tell your parents your eyes moved on their own and that’s why you are sick?) so I kept it to myself and they chalked it up to a stomach bug. This was the 90’s so there was no internet so I just kept my feelings on constantly being “off” to myself.

By the time I was 18, I had 4 diagnosed concussions from sports and martial arts (was hoping they would help my issues) and had never been treated or diagnosed. In my early 20’s, things got really bad. I had numerous falls ; often hitting my head (I’m up to 9 diagnosed concussions at this point and who knows how many went undiagnosed). I’ve woken up more times than I’d like to admit on the bathroom floor because I fell in the shower and hit my head. Or slammed my head into the wall as I treated it get to the bathroom during a bad dispose to be sick.

I’ve seen numerous neurologists (they’ve never been much help) multiple ENT’s (Dr Stark in Conroe, Texas told me I was the most severe case he’d seen in 27 years and I’d eventually end up being a case study at some point) and finally found a functional neurologist that really got into the nutty gritty. He had the goggles on me and was tracking my eyes as he had me do different movements and he found something interesting. Everyone is look to the left, my eyes would bounce and have trouble tracking and targeting. I’d have numerous small quick movements as I tried to focus on a target. This was only looking to the left. When I looked to the right, my eyes would snap to the target. His theory was that, when I looked to the left, I was unable to filter out all the visual “noise” that most people ignore between point A and Point B. Every time I would turn, I’d have to process all of that stimulus, every single time, and it would be overwhelming.

So, we started training my eyes. Looking at otternw, snapping to targets, holding my eyes steady as he swiveled my chair slowly back and forth. Eventually he wanted me to get much more intensive treatment and so he sent me to vestibular therapy. Elaine George in The Woodlands, Texas is an Angel of a human being. She is beyond wonderful. She suffered from vertigo during her pregnancy and decided to move from orthopedic PT to vestibular PT.

Day 1 she did her eval. My everyday home exercise was to be holding a popsicle stick and turning my head while keeping my eyes locked on. This was to be done at a metronome pace. My starting point was 50 bpm. She said the goal was to get to 240 bpm. I thought she was crazy. 50 felt like too much already. She was honest with me and said this therapy was going to suck sometimes. I was going to vomit and feel bad on treatment days. She wanted me to get tot the point of uncomfortable and then have a recovery. She would also do the Crystal moving maneuvers at the end of every session (which have never helped me). So, I would vomit every time I went, 3 days a week, for 3 months. By the end of those 3 months, I was not only turning my head at the pace of 240 bpm, I was doing it while walking around the therapy room as others walked by me. I was able to desensitize the stimulus enough that I could function. Elaine also gave me the best advice I’d ever received that I can’t believe no other doctor gave me: whatever position you are in when an episode hits, you need to do the unnatural thing and stay in that position. It’s going to be the longest 60-90 seconds of your life but it will pass. You not only need to train your brain to react to stimulus in a certain way but if it is simple nystagmus, letting the crystals settle my be all you need. That revelation was mind blowing.

24 years later, my vertigo is definitely more than a simple inner ear issue. There is some disconnect between my eyes and my brain as well as inner ear issues. The numerous concussions I’m sure didn’t help. I will definitely be donating my brain to science. If you are suffering from vertigo, do not delay getting treatment. If I had addressed this when it first started back in the 90’s as a child, I could have possibly been “cured” with 3 visits to an ENT (assuming it was simple nystagmus). My vertigo has developed into a full blown phobia of being dizzy. I hate the motion of planes and boats and going over railroad tracks in a car and other motions that most people find normal. When I get on a plane, I don’t fear it crashing. I fear it moving. Just a simple 1 hour flight involves me putting on a patch and pounding Dramamine/meclizine. I don’t wish this on anyone.

Sorry, that’s my long winded post. I hope I didn’t bore anyone too terribly. Any other decades long sufferers around here?

2 Likes

Welcome! Sorry to hear you’ve been suffering and for so long!

The inner ear influences the position of the eyes via the VOR or the Vestibular Occular Reflex.

Welcome Jeff!

Unfortunately, there are several of us with decades long issues. I’m older than you (at 48) but have had issues for pretty much my whole life, too. I was never normal. The first ER visit was in the middle 90s after years of disequilibrium. Major seizure with brain damage in 2006. First IV cocktail for migraine in 2017 marked the beginning of the chronic, disabling stage of VM. You’ll find you’re in the company of many long term veterans here. Welcome. We get it. We sympathize. We strategize.

I’m glad VRT was a big help to you, even if you can’t get to perfect. It was for me, too.

Have you tried any meds?

Emily