Discussion in 'Support' started by Flexi, May 10, 2014.
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Has anyone ever had balance issues or diziness with t or h
Yes, I have.. Pretty severe in the beginning. Less now days. It has always puzzled me why.
Yes, I current have this
yup. T and H and dizzy.
dx'ed a month ago with Ménière's Disease and bilateral superior canal dehiscence.
They are doing some clinical trial to treat menieres with steroid injections. Check it out if you're interested. http://menieresdiseasestudy.com/
yeah, I'm hoping I never get to that! I'm trying diet as a first step. My symptoms aren't that bad right now, but I have stored that for future reference!
How bad is yours?.
I.e do you fall over etc
What test do they do to diagnose you?
Luckyman316 can you elaborate what yours is like. Since T and H i find myself constantly concentrating on everything my body does. I cant work out wether i do have balance issues etc or wether its anxiety again and im just nit picking at things that dont exist
Sorry if i sound silly.
Your vestibular system is in your ear too. And if that gets damaged to0 somehow, then I guess you could have balance issues.
mine's not bad. I would have a sense of unbalance, would bump into doorways when walking thru, just mild stuff compared to what I know it can be like.
dx: reported to doc about symptoms, mostly.
the superior canal dehiscence - it was visible on the high-res CT scan, and I did a VEMP test. (I believe VEMP for this and not Meniere's, but I don't know... all done in one day)
Check this out: https://www.tinnitustalk.com/threads/benign-paroxysmal-positional-vertigo-and-tinnitus.4036/
Thnx sound wave. That was really good info.
Have any of you guys had issues with vision at all. Very minute bluriness ocasionally. Is this at all associated with minieres or bppv.
I have only ever had vertigo a few times in my life. Last one over a year ago and lasted about 10 secs. Usually the dizziness/vertigo was after 8 hours of constant driving as soon as i stood up.
Dizziness more frequent and again mainly after long hours of driving.
This was all before T and H which ive had for about 2 months now.
I feel quite dizzy a lot of the time and have had a coue of attacks of vertigo recently. ENT wasn't interested, but then he wasn't interested in anything else I said either
I have blurriness, but then again I have had poor vision all my life. and about 7 years ago I had preemptive glaucoma surgery for closed angle glaucoma (iridotomy) and now I have a weak iris in my right eye... which happens to be the side I have ear symptoms. Docs have determined that my constricted pupil is un-related to the ear issues. After thinking about it, I did notice that side was dark when walking in from the sunny outside.... for over a year it was like that and didn't think too much of it at the time.
@tychobrae , sounds like you need an ENT who will take you seriously!
Hi @SueR. I was thinking of starting therapy with the sound generators for H. Did you get lot of improvement with them? My H got much better with time, but then it got a little worse again, so I think the sgs will be good for me. Thanks.
That doesn't sound silly.
I never had balance, vertigo ot dizziness issue before T.
Now I sometimes have and I am sure it is anxiety.
I was tested for everything else and all is ok.
@patty yes, i had great luck with SGs. I wonder if my success is because I started right away. Onset of H was on 11/18 and I got my SGs on 12/20. I don't even use them anymore and hardly notice my H. I wonder if using them early has avoided any miso. I wonder if the longer you wait, the harder it is to retrain the brain.
Thats great @SueR. Mine went away for the most part, but I have noticed lately that it came back some. When I go into noisy restaurants, etc. it seems really loud at times. Seems like it happens when I am more tired and stressed. Never had any pain, but at the beginning I think I had TTS (whatever it's called). That's gone now and I don't get jumpy etc. when a cabinet door slams, etc.
Yesterday I went to a busy, noisy restaurant for dinner with friends. We were seated next to a large group with three small children. I didn't use earplugs. At first it seemed really loud, so I just took a few deep breaths and the loudness passed. Did you ever try sleeping w/ the sgs? I know when I tried on hearing aids, the T sound really faded, and I was thinking of getting them and sleeping with them.
I've never slept with them.
What is sgs?
You do not sound silly and I can give you some clear cut examples...
-escalators: If I go up them, I have to hold on for dear life as I feel like I will fall backwards
-Open elevators: The higher I go, the more off balance I feel
-Going up ladders are no a struggle
-Forget about going to any events or theathers, I get weird balance feelings even when sitting down. This time last year, I was sitting at the top of a stadium for an event... today? Can't do it even if it's a small balcony
-Sometimes at noisy restaurants, I'll feel off or when sitting in a elevated chair at a bar
Like you, I think about it too. Not because I want to think about it but because it's constantly happening
for me, in noisy environments, I sway horribly. and if I have to go downstairs, I'm unsure about my steps. I sometimes have to trail walls.
and I consider my symptoms to be mild.
Thanks for your response. I have an appointment to start TRT along with the sound generators. I was wondering did the clinician advise you on how to handle flying with H/T?
My H isn't too bothersome anymore, but now it's balance issues (Meniere's). I used earplanes and took a decongestant (sudafed) about 30 min before flight (doctor recommended both). and she said to take meclazine if I have balance issues after flight. I didn't need it. total of 20 hrs of flying over vacation and I didn't have a problem.
yesterday I had vestibular testing and I'm still feeling the effects. increased H and balance issues.
I'm very unbalanced now, worse than at the beginning of T. The noise (which is very loud some days, a little quieter on other days), I can cope with now, I'm not habituated by any means though. It's the feeling of being unbalanced (not dizzy as such) that gets to me. I can move my head and feel I'm toppling over. I don't have meniers as my MRI was clear and so were the other tests. I had a TIA and total hearing loss in right ear.
It sounds like you and I are very similar.
I'm curious about your Meniere's comment. From what I have been told, there's nothing to "see" on an MRI which indicates Meniere's. If you see something on an MRI, it means not meniere's, it's what it is you see (acoustic neuroma, superior canal dehiscence, etc.) I was dx'ed with Meniere's.
I suppose I should have tagged you so you know I'm addressing your post, @slipware!
Yes. Almost to the point of getting some Vertigo medicine.