Vesties’ Village

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should I avoid things that increase symptoms?

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Active Member
Joined: 7 months ago
Posts: 2
Topic starter  

I am undiagnosed so I don't know if anyone can answer this, but -

Some things (like physical exertion) increase my symptoms of lightheadedness and head pressure. I love to dance but it makes me feel worse for a while, from an hour to a couple of days afterward. My question is, am I causing my condition to continue or worsen by doing activities that increase my symptoms? Or, is it like 'exposure therapy' where doing these things might actually improve my overall long-term condition?

Thanks for any thoughts! I still have a over a month before I can see a specialist so I'm kinda making things up until then. 🙂 I have been doing physical therapy exercises for 16 months but they don't seem to have any effect any more.

New Member
Joined: 4 months ago
Posts: 2

My problem started 2005.  I was losing my  balance.  It took me 12 years and many doctors to get the correct

diagnoses.  The first 2 diagnoses  and doctors were wrong.  Finally found a competent doctor in 2017.  He did a complete

examination and in March 2017 he told me I had Bilateral Vestibular Loss.  He sent me to physical therapy which was a waste of time.

Between 2006 and 2022 I  had many physical therapy sessions which were  also useless.  I learned there is no cure or treatment

for Bilaterial Vesibular  Loss.  I sit most of the day to avoid falls.  I transport to appointments using an electric scooter furnished

me by the Veterans Administration.   

There are trials being conducted at Johns Hopkins Medical Center called Multiple Channels Trials.  I think these trials have be

ongoing for the past 10 years or so.  They have a few people now walking in the program.  However, I beleve  I will be long dead

before the device is prefected for wide useage......  Anyone having balance problems consider 'Vestibular' as a possible cause.

I've learned doctor's are not well versed on 'Vestibular'.   That's my situition for the past 18 years......

This post was modified 4 months ago 2 times by John S. Bryant