Long shot...do you, or do you know someone with nystagmus?

I had never heard of this, so I looked it up. Of course I have no tips, but I am very sorry you have this. It must be terribly irritating.

I had never heard of it, but on the TLC show Outdaughtered, on of their quints has it and they have devoted several episodes including one on her surgery to it. Good luck as you search for help.

I'm sorry that you have to deal w/this condition. While I don't have any advice I do have ((((HUGS))).

Yes, I have it as well as diplopia due to progressive MS. Patching one eye helps with the diplopia. My eyes/vision are a mess. I'm so sorry you're dealing with this too.

Yes, I have equilibrium issues as well as vertigo occasionally. I am no longer ambulatory so the impact of all of these issues isn't as great as when I was trying to navigate on two feet. I find lowering my gaze and looking upward (looking flirty, lol) ''balances'' and aligns my vision temporarily, but is not a practical -or comfortable solution.SaveSave

I'm sorry to hear that PT wouldn't be helpful for you.  What about OT?  I did that as well to help minimize the motions that would set it off.

At my worst, my nystagmus was visible.  I couldn't look someone in the eye and my eyes would move independently of each other.  I walked down the hall bumping into walls like a drunk.  I couldn't tell exactly where the floor was, so I was constantly tripping just walking on a flat surface.  It got so much worse when I was tired.  At it's worst, I couldn't read, watch TV, or even sit up most days. I never walked anywhere unless I had someone to hold on to or a wall to touch.

Mine was caused by a mass on my right inner ear from a massive sphenoid sinus infection.  Since I had vertigo and nystagmus, it's hard to know just exactly what I did for what problem.  The nystagmus caused vertigo, but so did the mass pressing on my inner ear.  Basically, I had to rewire my brain around the damage and the only way to do that was to make me dizzy and make my brain compensate for it.  I lost most of the hearing in my right ear.  That comes and goes now, with about a 30% hearing loss at a minimum.  Because pressure on that ear varies day to day and hour to hour, hearing aids aren't an option for me.

I saw a vestibular therapist.  They are pretty hard to find.  There were 2 in the DC area at the time I was being treated, but I ended up at the Wounded Warrior Center at Walter Reed Bethesda.  We are still active duty military, but they don't normally treat family members.  However, my head injury was pretty rare and they did a case study of it, with different doctors and therapists coming in each week to talk to me and watch my PT.

I was set up in a room that was essentially like a big Wii.  There were two treadmill tracks (one for each leg), a 200 degree screen, and various games and images would be put up on the screen.  The treadmills could move independently, simulating rough terrain, waves in the ocean, hills, etc.  I was in a harness so that I couldn't fall.  I hated that thing with a fire of 1,000 suns.  It was just a torture device, but it did work.  I'd sleep for almost 24 hours after a therapy session.  The goal was just to keep me on the edge of throwing up, but not actually make me vomit.  It was all just to rewire my brain around the damage.

At home, I was given exercises to do daily.  I'd stare at one spot and move my head side to side, keeping my eyes on that one spot.  Then I'd move my head the same way, but have to look up and down, side to side.  Then I'd have to bounce on a big exercise ball doing the same things.  Then I'd take a nap.

As for OT things?  I think sitting where I could see a wall out of the corner of my helped a lot.  Also, sitting in a chair with arms helped too.  It keeps me grounded.  I call it knowing "my place in space".  Church was the worst for me and it's where my symptoms first escalated.  It's a big round room and I'd sit in the middle of it.  I still sit on the side of the church, on the end of the pew (vs in the middle of the bench) so that one arm is resting on the side.  

I crouch down on my haunches vs bending down to get something out of a kitchen cabinet.  I don't just turn and walk at the same time, I turn, and then walk (hope that makes sense.)  Walking down the stairs, I keep one hand on the bannister or skimming the wall.

Today I'm about 90% better.  I can drive and live a fairly normal life.  I still have rough days and I can tell before I notice the vertigo because I get really tired and crabby. Because sinus swelling heavily affects me, I'm on several different allergy meds and this time of year is fairly rough with the winds and the pollens blowing everywhere.  I take a lot of naps when my symptoms are acting up, as fatigue doesn't help the brain cope with the vertigo.  My symptoms are worse at night because I'm more tired and my allergy meds are wearing off (I do take allergy meds twice a day to help with this, but it's not enough.)

Hopefully this novel will give you an idea or two of how to get some help.  Honestly, it took 5 months for doctors to really take me seriously.  They thought the vertigo was nerves and menopause, then they decided it was my heart.  Nope.  It turns out my CT scan had been read incorrectly and my sphenoid sinus was 95% blocked instead of 95% clear.  It took 5 department heads at Walter Reed Bethesda, looking over my charts and tests, to find the problem.  I had 3 hours of vestibular testing, saving the caloric test for last.  They blow air into your ears and a normal person gets incredibly dizzy very quickly, so they save it for last.  When they blew air into my right ear, I had no reaction whatsoever.  And we had a diagnosis!

Mine improved after antibiotics. I’m not nearly as dizzy as I once was. I used to have to hold onto walls and handrails to keep from tipping over. Driving was scary because my vertigo was so bad.

Sorry you’re dealing with this without any explanation. Eye issues suck.

My, then 17 year old, daughter woke up after brain tumor surgery 4 1/2 years ago with nystagmus and an assortment of other eye issues including double vision.  Her struggles with walking and nausea sound similar to yours.  She could not walk 5 feet without vomiting.  She spent six weeks in the hospital and her weight dropped to a very unhealthy number because of the nausea. After discharge she went through 7 months of PT until they felt she was as good as she was going to be which was awful. 

With eye surgery, and vision therapy (still goes 4 1/2 years out from brain surgery) she is doing better. She still is not quite right...  Steps are hard, uneven ground is hard, and grass and gravel are hard.  She has to be very careful not to trip over curbs because can not see the change in the ground.  She gets nauseous doing things like unloading the dishwasher... moving her head down to see a plate to pick up and then moving her head up to see the shelf to put it on is too much.  

I was skeptical that vision therapy would help but it has!!!!! She has two teams she sees in two different cities for all her eye issues and all agree the vision therapy has made a dramatic difference.  They check her eyes often and update and change her prescription.  I am pretty sure vision therapy is available most places.  I do not know were you are and if you can travel for treatment but one of the doctors on my daughter's team has patients from all over the world come to see him.  He actually developed a surgical procedure for nystagmus!!!!  If you would like more information PM me.  

I have heard of it, and so sorry you are suffering with it. I have a congenital 3rd nerve palsy so I understand the double-vision, tilted head, etc. I also close one eye at times to read. It’s weird as it’s also hard to describe to people, and most don’t see my tilted head but some do. I now hold my head differently in photos so it’s not so obvious because photos make it very evident. I have learned over the years to move my head a certain way. Hope you can find some relief, and night driving is terrible for me. I avoid it at all costs. Hugs!

Ive had it with vertigo.  I had to stay in bed.