Nikki Posted January 27, 2011 Report Share Posted January 27, 2011 Right now I'm going through one of my bad bouts. I'm so so dizzy, my blood pressure and heart rate are fluctuating a good bit..and I just feel horrible. Too much noise or movement always bothered me when I wasn't feeling good but lately I'm noticing that when I'm already feeling horrible any kind of movement I make bothers me. Just turning my head a tiny bit left or right (while laying down even)..Or turning to go down the hallway can totally throw me off and make me feel almost spinny for a second. Even just focusing my eyes on something makes me more dizzy. I was just trying to send a text to someone and just looking down to find the right buttons to press gives me that dizzy/spinny feeling. I was just wondering if anyone else gets like this? Does it sound like it could be just from POTS/dysautonomia? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 27, 2011 Report Share Posted January 27, 2011 It's awful, I know. I have a hard time sorting out what part of the dizziness is from the POTS and what is caused by the inner ear disorder. Have you been to a neuro-otologist? Quote Link to comment Share on other sites More sharing options...
Nikki Posted January 27, 2011 Author Report Share Posted January 27, 2011 It's awful, I know. I have a hard time sorting out what part of the dizziness is from the POTS and what is caused by the inner ear disorder. Have you been to a neuro-otologist?Yes, at first I had seen an otolaryngologist in my town who did a bunch of tests (hearing tests, ENG, caloric test..) then he sent me to a neuro-otolgosit in Hershey who did more hearing tests, a VEMP test and sent me for a CT scan of my ear at his last attempt at finding something wrong - he was thinking maybe a tiny hole in my ear or something..but all the tests came back good or 'within normal ranges'..So I really don't know what else there would be to test with my ears. I recently saw my neurologist and he said he thinks some could be inner ear related but when we asked wouldn't something have show up with all the tests I had done, all he said was, 'You would think so..' and he didn't say anything more about it..Other than I'm a big mystery. :-/ Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 30, 2011 Report Share Posted January 30, 2011 Nikki -- I'm sorry, I am stuck in the same boat as you. I do have some positive test results on inner ear tests and they still don't know exactly what the problem is. There seems to be a lot of us out there with vestibular symptoms, that are probably inner ear related, but the science just isn't there to help us yet. The general explanation I have gotten is that there is too much fluid in the inner ear (and one Dr. said there may be leak) which causes the symptoms of dizziness/unbalance. The standard treatment is to follow a low salt diet and possibly take diuretics to reduce the amount of fluid in the body (therefore the inner ear), but this is the OPPOSITE advice as what to do to treat POTS -- add salt and fluid. What a catch 22. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 25, 2011 Report Share Posted February 25, 2011 I can relate - its a **** illness. Ive had hepatitis and ankylosing spondylitis and POTS is ten times worse than both. Just hold on because eventually in nearly all cases it improves. Two years ago I couldnt even sit in my chair at work for 2 hours without fainting. And now I run 4 kms three times a week. Quote Link to comment Share on other sites More sharing options...
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