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Suffering for about a year now - things I have done and questions I need answers to? Vestibulo Ocular Reflex

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 vc96
(@vc96)
New Member
Joined: 7 months ago
Posts: 1
Topic starter  

I have had persistent vertigo for the last year.  Let me be very clear that it is not room spinning vertigo, nor the intense cannot even stand up straight vertigo.  It is much closer to feeling sea sick, motion sick, as if the car is still moving, swaying, unsteady, and floating type of vertigo.  

 

Exercise is tough, driving is tough, riding a bike is tough.  These activities and head movements seem to provoke or worsen the issue.  Even something so simple as walking around on hardwood floors and transitioning to carpet seems to provoke it.  It seems as if there is somewhat of a delay in locking onto something with my eyes, tracking it, and processing it whether it be ID an object, a person, or reading something.  The most clear example I can provide is driving at highway speed, turning my head quickly and locking on with clarity to something on the side of the road.  That is not what it used to be.  Activities I once loved - fishing, boating, running, biking, and weightlifting are no longer enjoyable or even tolerable some days. The same goes for air travel, it can be rough.  I have no ringing in my ears and have not had a head or brain injury that I know of.  I am 26 years old and was otherwise in good health. Tilting my head certain ways provokes it, fast acceleration, etc.  basically movement in general. Even scrolling on my phone can make me dizzy.  Occasionally, have nausea with it that feels like motion sickness type of nausea. I have not fallen or vomitted.  

What I've done so far:

- Visit the ED x3 - checked all cardiac markers and cleared me

- ENT x2 - checking for BPPV, hearing and other common causes -- all clear

- Optometrist - checked eyes and all OK

- Blood sugar, blood pressure, heart rate -- OK

- Weight - normal 

- CBC - normal

- CMP - normal

- Start rehab -- PT said I had some vestibulo-ocular-reflex and gaze deficiencies 

 

I do not have blood pressure issues or POTS. I am not taking any drugs, supplements, or other nutritional products at the moment. 

 

I have not had an MRI, CT or any other test.  

 

Things that help -- electrolytes and Claritin seem to help a little bit, but don't cure me.  Hard to tell here. 

 

The only thing I can possibly think of that correlates with this I took high dose Thiamine (B1) in various forms up to 150mg per day for about 1 year prior to this and throughout.  I stopped taking it in May and am slowly, I am talking very slowly seem to be improving?  I am wondering if the Thiamine depleted other B vitamins, electrolytes, and minerals. 

 

I am so incredibly concerned if I have something serious going on such as cancer, MS, etc.  

 

Does anyone have any advice? My number one priority is making a fully recovery and as time goes on and I have not recovered, I am growing increasingly more and more concerned. 

 

 


   
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(@myrna)
New Member
Joined: 4 months ago
Posts: 1
 

This is my story also. I'm having the same exact problems. I mean exact same thing for now one year and a half. No improvement


   
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(@crabmeat3937)
New Member
Joined: 4 months ago
Posts: 1
 

If anything you're not alone.  Your description of symptoms is also almost identical to mine.

Nothing is spinning but I have the sense that Im always unsteady or off-balance when I am moving around especially my head.   But I can hold different balancing positions just fine w/o falling over or becoming unsteady.  Also my weight and BP, RHR, and other basic health metrics, I would consider normal.

Im certainly not an expert but the tracking thing you mentioned could be from something called Nystagmus.

One condition that I do have is what I consider chronic acid reflux.  I was on PPI meds on and off for 4 years (Pantoprazole).  Whenever I was on that med for more than a few months I would have terrible feelings of dizziness and balance issues, along with a whole bunch of other issues like fatigue, head pressure, ear pressure, and tinnitus.  PPI meds are notorious for causing vitamin and mineral deficiencies with long-term use.

I have since stopped that med and now use Famotidine 20mg daily for about a year.  Since switching I have felt much better but the balance stuff has never completely gone away.  Some days I wake up and its not really an issue and other days its very noticeable.  It will usually last the majority of the day.

I've also felt that when it's more noticeable I am more sensitive to loud noise and even become more photosensitive to bright or flashing light sequences.

One thing I noticed is that my reflux seems to trigger bruxism while I sleep.  I have read this can cause TMJ/TMD which can cause inflammation around the ear.  

I also thought it could be BPPV, but after doing Epley maneuvers for each ear multiple times a day for many days, it still has not cleared up.  Im not sure this even improves it or not or if its just the tilting and stretching of my neck and head helps open up my eustachian tubes which maybe alleviates it for a short period.

Another theory is that its related to my reflux.  After I sleep, my sinuses feel a tad congested and am wondering if acid could be making its way up into my sinuses and inflaming my eustachian tubes.  Sometimes I feel like there is outward pressure from my inner ear on both sides of my head.  My ears can sometimes feel like they need to pop - I will keep yawning, but they never do.  However my hearing is never muffled or impacted.

I have read that balance issues can be related to low Vitamin D and B12, so I have started supplementing 5000IU vitamin D and a lower dose B complex.  Too recent to tell if it has any impact.

Trying to find answers.  I tend to become hyper-fixated on the symptoms and it makes everyday activities difficult.


   
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(@brownsunny148)
New Member
Joined: 3 months ago
Posts: 2
 

I also went to the hospital for examination and actively treated it, but it seemed that it could not be cured completely, and the progress was very little.
I'm really worried things will get worse in the future as I start to show signs of aging.
I always try to maintain a moderate weight and try to exercise every day, hoping we will be fine


   
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(@libbyboyd)
Active Member
Joined: 4 weeks ago
Posts: 40
 

The symptoms, including dizziness, feeling seasick, and feeling tired, could have a variety of causes, including vestibular system problems or eye problems. You've already had a lot of tests done, but it may be helpful to see a neurologist or vestibulologist to take a deeper look at your condition. It is also worth discussing with your doctor the possibility of an MRI or other additional tests to rule out serious problems.


   
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