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I'm newly diagnosed with almost total loss of vestibular function in both ears.


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Old 01-16-2017, 08:59 AM   #16
WellImbalanced
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hmm that's interesting. I tend to feel worse in the AM and then after the workday ends (usually pretty late for me). I totally agree about the "new normal" - I can't tell if I'm getting better or just adapting.

I do those stabilization exercises too, but honestly I don't notice much effect. It sounds like you and I have similar levels of loss so if you find that they are helping please let me know!!! I will do the same.

The issues seeing faces or anything far-off when I am walking are my main issue. I really hope that goes away with time. Glad to hear you are getting better! This is such a rare condition that it's just reassuring to know that I'm not the only person going through this on earth lol. Take care and thank you for your reply!

 
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Old 01-17-2017, 03:57 AM   #17
Barfa
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Yep, I have a harder time seeing signs and people at a distance. Up close isn't as bad as it used to be. How's your balance these days? Are you wobbly...ever stagger? I still need to think about what I'm doing when I walk, especiallly outside and when it's relatively dark. Although I never feel like I'm going to fall. And I still feel weird when I stand up, walk, turn my head, etc. If someone calls me outside and I twirl around I can feel unsteady. Some days are definitely worse than others. And I still tend to feel more normal after a glass of wine, which seems to counterbalance the general "tipsiness" I feel.

As for the gaze stabilization exercises, I think they've helped with the blurriness and dancing eyes. My therapist said she has people who are able to whip their head back and forth really quickly and still keep the X in focus. I'm not that fast yet, so there's room for improvement. It's also possible that the exercises don't do much, as you've found. I think just being active and living life is therapy...

 
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Old 02-16-2017, 04:40 PM   #18
uga
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

How is everybody coming along?

Barfa you are spot on, the best therapy is trying to live a normal life and stay active. Any activity that pushes the brain is helpful. As they say, do the uncomfortable and it will soon become comfortable.

Is the Oscillopsia getting better everybody? How is the balance?

Sam/uga

 
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Old 02-21-2017, 07:28 AM   #19
Barfa
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hi Uga, thanks for checking in. No real changes to report. some days are better than others but I can't really see a pattern as to why that is. Being well rested helps, but there are days I've stayed up too late and had more than usual to drink and actually feel better the next day. Go figure...

 
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Old 04-03-2017, 10:46 PM   #20
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hi all,

I second Barfa's sentiments and thank you for checking in UGA.

I do not really feel any better. I recently went camping with some friends (in Georgia no less ). I used to love camping, but in the dark I was a total mess. Honestly, I felt pretty emasculated and not like my old self. I am only 34 and I worry what the rest of my life will be like. I have a supportive girlfriend but I don't know if she's the one, however I am scared of being single because I sometimes feel as if no one would want me with this problem and I also worry about how on earth I could take care of children .

Overall this illness is very frustrating and frequently depressing. I have been in school for 15 years training in my profession (I can't say what it is or the admins will delete my post). Early next year I will be in a very challenging leadership role and I worry about my ability to concentrate and lead others.

It's tough. Every day I pray that I will somehow miraculously feel better. I still try to exercise, but anything with a lot of movement is difficult. We went bowling for work a couple weeks ago, and even that was a challenge and I felt a little embarrassed. Moreover, The PT doesn't seem to help at all and I just feel tired at the end of each day.

I apologize for not responding sooner and venting in this post. I guess I just feel like others with this issue are the only people who can truly understand.

 
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Old 04-07-2017, 11:12 AM   #21
Blucharisma
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Quote:
Originally Posted by Barfa View Post
Hi Uga, thanks for checking in. No real changes to report. some days are better than others but I can't really see a pattern as to why that is. Being well rested helps, but there are days I've stayed up too late and had more than usual to drink and actually feel better the next day. Go figure...
Any changes now? I just read thru this post...and although I don't have bilateral loss, I relate to a lot of what everyone in here is saying. The eye shaking thing is killing me. I start VRT next week at Hopkins though so I'm glad to read the encouragement about that. Just wondering if you've been feeling any better...if your eyes have calmed down

 
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vestibular disorders, vestibular neuritis



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