Vesties’ Village

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My Experience

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(@lufflestrassa)
Active Member
Joined: 1 year ago
Posts: 2
Topic starter  

I wanted to share my experience with vestibular issues in case it will help someone. This was so scary.

I work in healthcare. I did have Covid Jan 2020.  I got vaccinated 2/27/21 and 3/20/21 (workplace mandate).  I got a booster 10/24/21.

In March of 2022 I had the "flu".  I took two at home covid tests that were negative.  I was sick enough to sleep in recliner for a few days and not watch TV but not enough to go to doctor.  I felt as it I had recovered come beginning of April.  This is where it gets scary. (Background- healthy as an ox 46 year old) no medical issues.

I got up in early April and could not walk.  My BF said it looked like I was drunk. I got a prednisone pack and it did nothing. Stumbling...cannot drive, cannot go down stairs or inclines. I have to hold on to things to move. I remember lying in bed crying and screaming why me. Was I dying?   I finally went to ER (first time in 46 yrs) They immediately did a cat scan for stroke-negative. They drew blood, had a neurologist come in and test reflexes etc.  Finally I was discharged (patient not in imminent danger).

They did want me to follow up with a neurologist. This is a large hospital in a metropolitan area BTW.

I proceeded to have a brain scan? (electrodes put on scalp), another cat scan, MRI's of head, neck, back. Went to ENT, chiropractor, and had tick illnesses checked.

Nothing wrong!

Ok- well why can't I walk?

Finally, I saw neurologist in June- she said I had post viral vestibular disorder aka vestibular neuritis.  I said what caused this. She said some virus.  I said will I ever be "normal"?- "well we don't know."

She said the vestibular nerve was damaged. She sent me to Vestibular Therapy. Thank god for this! I had never heard of this. I had to relearn everything.  I was pulling to the right. My eyes were pulling to right.  I just finished therapy in November. This took up March to November. I am almost normal but not exactly.

I hope this helps people to give hope.

This year the hospital did not mandate the covid vaccine.  I am glad.  What scares me is I'm not sure what went down.  Is it the vaccine? Covid? I don't know and no one else does either.

I am now working on walking to gain cardiovascular health back that I lost sitting down for 8 months.

 


   
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(@pinkway)
New Member
Joined: 1 year ago
Posts: 4
 

Hi everyone and thanks for sharing your experience. I found a lot of useful information here


   
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(@jorgemcron)
New Member
Joined: 1 year ago
Posts: 1
 

thank you for sharing your experiences.

This post was modified 1 year ago 2 times by Jorge M Cron

   
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(@gordonpd)
New Member
Joined: 1 year ago
Posts: 2
 

I am also interested


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

It’s hard to imagine how scary it was for you to experience all this. But it’s good that you found a path to recovery and received support from doctors. It has been a long and difficult journey, but your experience may be helpful to others facing similar issues. It is important to stay on the path to recovery and continue to work towards regaining your health. Be strong and don't lose hope that everything will be fine.


   
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(@debsteintx)
New Member
Joined: 1 week ago
Posts: 2
 

Hi y'all,
Just found this forum and am so excited. Reading some of the posts, I had no idea how many different forms of vestibular disorders there are! In 2022, I was an extremely active recently retired lifelong equestrian, living on my dream ranch in TX with my husband of 38 yrs. Although I competed in endurance racing in my younger days, I mostly did a lot of trail riding and caring for my 2 horses. In September of 2022, my primary care doctor referred me to a urologist due to recurring UTIs that didn't resolve despite treatment. Tests were done at the urologist and I was told that I needed an IV antibiotic for a 7 day regimen in order to resolve the infection. I asked about the antibiotic and hearing that it was gentamicin, I laughed, because I had used that on my horses. I DID NOT research the drug and was not advised that it is ototoxic. First dose was on the 21st of October and last dose was on the 28th. On November 2nd, I awoke with no balance and distorted vision, which I now understand was oscillopsia. I did NOT have vertigo, nothing was spinning, and I was not nauseous. I just walked like a drunken toddler, stumbled often, and couldn't see straight. Living on a ranch where most of our time is spent outdoors was not doable in this condition. I could no longer ride or even take care of my horses, because my lack of balance created a hazardous condition when I was around them.

I will spare you all the details, but I saw my primary doctor, 3 neurologists, an ENT and an otolaryngologist over the next year. Multiple CTs, MRIs and vestibular tests later, I was told that I "probably" had suffered a cerebellar stroke, even though the tests did not show that. another neurologist was convinced I had Superior Semicircular Canal Dehisence, and the otolaryngologist tried to convince me that I had vestibular migraines. My condition was entirely static, it did not change from day to day, it was always the same. None of the doctors tied my condition to the gentamicin, even though it was present in my files.
While doing my own research on the Johns Hopkins website, I saw a link for Bilateral Loss of Labrynthine Function, which is exactly what I had. It clearly stated that it was the result of destruction of the tiny hairs in the inner ear canals, mostly likely caused by an aminoglycoside antibiotic, such as gentamicin. I then researched all I could and found that many people have this reaction to gentamicin or one of the other aminoglycoside antibiotics that are commonly prescribed. . When I questioned the otolaryngologist about whether the gentamicin caused my condition, she did not want to concur, most likely because she was worried that I was considering legal action against the prescriber.

I wasn't, I just wanted a diagnosis.

Deb in N TX


   
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(@darcyb)
Joined: 12 months ago
Posts: 5
 

@debsteintx I am so sorry for all you have experienced. But I am so glad you found VeDA. We do have so much information on our website as well as many different support groups to connect with if that is ever of interest to you. There are a lot of different vestibular disorders and some people experience more than one. I have had vestibular disorders for over 18 years. I am so glad I have found the community within VeDA as it helps so much to connect with others that know what what I am living with.


   
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