Vertigo/imbalance

[cristiana]

Hi Everyone

 

I am now having tests for my ongoing feelings of being on board a ship.  The ENT now thinks it isn't inner ear, so I just wondered, for any of you who actually have gluten ataxia, can you tell me, if you suffer from feelings of being imbalanced, vertigo issues etc, is it 24/7 or do certain actions set it off?

 

In my own case, I don't wake up with it - I usually find that bending down to pick something up, using the computer, carrying heavy objects sets it off.  The ENT thinks it is to do with the neck.   I did injure my neck and back shortly before this all started, so he may be onto something.  Sometimes I feel unsteady when I walk and that often coincides with lower back pain.

 

Many thanks.

 

 

[pricklypear1971]

I get it, occasionally.

I think bits associated with inflammation - for me, tmj from having my wisdom teeth removed ( one side was impacted and they messed up my jaw in that side).

I notice I'm more likely to get vertigo when allergies are bad (and tmj is bad).

I have luck with massage for my tmj, which relaxes the ligaments/tendons and relaxes everything.

[cristiana]

Thanks for your reply, pricklypear

 

That's interesting... do you get the spinning rooom vertigo .... or sort of swaying back and forth type, which is the type I get, along with feeling I'm on a ship's deck.

 

Also, do you feel your gait is slightly affected?

[pricklypear1971]

I get the Leaning Tower of Pisa /can't walk effect at its worst.

I get nausea, sort of slow-motion with a hint of spinning, most often with allergies. I can move around and do things but want to vomit on them, and get a terrible headache. Helps if I sit up/move around but not too much. I think I get fluid in my ear, and sitting up helps it drain.

[cristiana]

Thanks again pricklypear.  Glad I'm not the only one - although sorry you are going through it, if you know what I mean.

 

Just wondering, do you or does anyone else know if vertigo from gluten ataxia is a 24/7 feeling, rather than just lasting several hours every day?  I am not talking about the type which hangs around for a few days or even weeks as a response to recent glutening, but as a more chronic condition caused by sustained damage over a period of time, if that makes sense.   I mentioned the possibility of my having ataxia to one doctor and she dismissed it saying I wouldn't have got ataxia after my gastro symptoms stopped - the vertigo started about two months after adopting a gluten-free diet, when the gastro symptoms were a lot better.

 

Thanks.

[pricklypear1971]

I don't know....but I do know that gluten damage does not work the way your doctor is describing.

Ut uh. Different parts/systems recover at different rates...then that varies from person to person.

[notme]

i had vertigo, before i knew i had celiac.  they attributed it to an inner ear problem, maybe caused by inflammation from allergies.  it has since cleared up after i went gluten free

[cristiana]

Hi notme!

 

Did it take weeks or months?... for me, it hit two months after going gluten-free, that was July, and I still have it 

[notme]

it took a little while - i honestly didn't connect the dots and wasn't expecting it but suddenly i could carry TWO things down the stairs.  (not holding the railing for dear life)  and drive without feeling like i was falling off the road.  i think it's neurological, which is slower to heal.  hang in there!  mine was 'falling'  and  'leaning' - could not stand without feeling like i was falling.  sometimes trying to correct it, and falling anyway because it only FELT like i was off balance.