Justin (46) Oscillopsia, Vestibular Neuritis, 2017

Hello to my bilateral oscillopsia friends!

What started 6 months ago as a fever, turned to a cold, to a sinus infection, to an ear infection, to some hearing loss (1 ear only), and left me with permanent inner ear nerve damage and the HELL we all live in called “Oscillopsia”. Also, I have no vestibular balance function either. I am 46 years old and a traveling salesman when I was struck with this. Diagnosis was “idiopathic”; but I am sure I was attacked by a super virus. Also, I was run down with stress and not taking care of myself when I started getting sick. ‘John Wayne-ing it’ and powering through sickness was a big mistake and I paid the price for it. I will never ignore by body when being sick again.

1st, I want to thank everyone for posting information and sharing stories as it helped me through dealing with this permanent damaged. I had considered killing myself when this took place as having a type “A” personality I thought I would never be able to do my job or enjoy life like I knew it was never going to happen again.

Like most, it took a long time until the doctors figured out what was wrong with me. 2 MRI’s / 1 CT Scan / 3 balance test / 3 hearing tests / blood test etc. Finally, a great Ear, Nose and Throat (ENT) doctor figured this all out. It was frustrating as some doctor’s said I had an anxiety problem. However, I feel blessed that I don’t have a brain tumor, cancer, MS or Meniere’s disease.

6 months ago I couldn’t walk around the block without a cane and completely frying my head for the day. The bouncing vision with no balance control and the fullness in the head was almost too much to deal with. 5 months ago I couldn’t walk backwards. I can now jog, drive a car, do sales calls and do chores/yard work. I still get what I call a “fried” brain when pushing myself to hard; but it’s a must to get better and build endurance to stimulation overload. I want to share some of the things that have helped me. I am back to work driving up to 1,000 miles a week (NO NIGHT DRIVING) but its taken everything I have to make it happen. I still struggle really bad in the dark but I am working on that with closed eye balancing exercises.

  • Personal Training (balance and coordination) – I can’t stress this enough. I try to do this everyday. Get a “Airex” balance pad. Start bare foot and then move to shoes as you get better.
Marsden Ball
  • Vestibular Rehabilitation Training / “Gaze Therapy” –  DO THESE! I know they fry your head. I do them at night right before bedtime as I can sleep off the foggy/fried head syndrome after the personal training session. here are some examples.

https://www.dizziness-and-balance.com/treatment/rehab/gaze%20stab.html

https://ahc.aurorahealthcare.org/fywb/x20521.pdf

http://us.vibram.com/shop/fivefingers/men/outdoor/

  • Make sure to get a “Marsden Ball” for your visual training too. Candice has posted a video below to show how to use it.
  • No more caffeine. I was a coffee junkie. Even a ½ cup of coffee fries my brain and hurts my balance control.
  • I have 3 pairs of “five finger shoes”. I have “Vibram” shoes as they give me tons of information to stay balance. I use these for PT and in my personal time/life.
  • I have a pair of “Vivo” barefoot shoes. These feel like your walking barefoot but look like nice normal dress shoes. I use these for work.
  • Find a really good Optometrist. I don’t need glasses normally. But I was referred to this Dr. that made me normal looking glasses with a prism in the lenses. It takes away about 50% of the bouncing! The Dr. spent about 3 hours creating the prescription needed to make the prism. The prism for the glasses prescription states this: TYPE: SVF, SPHERE: = Plano, CYLINDER = .25, AXIS= 120, HORZ. PRISM = 1.5 out.
  • Next, the Optometrist will put in occluders for my driving glasses which might take away another 25% of the bouncing vision. This is just opaque tape that blocks the middle of my vision. I don’t know why these glasses help but they do! Here is a picture (right) of the driving prism glasses with the tape (occluders). I recommend anyone to just try putting a card between their eyes to see if it helps with their vision bouncing! Attached is photo of the driving glasses. I can’t believe the benefit I get with the prism glasses and occluders. I don’t understand how they work, but told is forces your brain to use the outside parts making the bouncing vision less/slower. I am a traveling salesman and drive up to 1,000 miles a week now with these glasses. They slow down and minimize the bouncing along with stopping brain fatigue.

Extra Links: 

Also check out Candice’s posts on Oscillopsia here:

Dear Readers: you can ask questions and talk to Justin in the comments!