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


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Old 10-29-2016, 02:02 PM   #1
Barfa
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Talking I'm newly diagnosed with almost total loss of vestibular function in both ears.

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

My problems started with two bouts of vestibular neuritis, 2nd one 9 months after the first. Last one was in early July of this year. Caloric testing and rotational chair confirmed the almost total vestibular loss. The brain is amazing in its ability to compensate. I'm pretty much living my life as I always have: driving, exercising, and drinking wine in moderation, which actually makes me feel better. I'm lucky that my job lets me work at home and my husband is very supportive.

My fear is that there's something eating away at my inner ears, and that my hearing will go next. So far I've had no problems with that, but that's my biggest concern right now. Does one lead to the other?

I'm 63 years old, and feel grateful overall that I'm not in pain and that I can live with this thing, but head movements and changing positions definitely remind me that I'll probably be a fuzzy-head for the rest of my life. :-/

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Old 11-15-2016, 02:50 PM   #2
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hi Barfa, this is actually my first post here! You are not alone - I have been diagnosed with complete bilateral loss as of ~Aug 2016. Prior to that I had progressive unilateral loss starting in 2001. I am 34. now, and it has been a long challenging journey with periods without problems and then boom, constant oscillopsia. I am hoping to find survivors of bilateral loss and get some info on what I can expect in the years to come.

wishing you the best.

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Old 11-15-2016, 07:13 PM   #3
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Thanks for your note, WellI. Because what we have is so rare, it's hard to find info on the long-term prognosis for people like us. It's disheartening to hear that you can feel fine for a while, and then slip back into periods of "dancing eyes." I had hoped once the brain "adjusted," that I'd get better and stay better. Have you noticed any patterns or anything that precedes your slipping back?

I got my second bout of VN -- which led to my bilateral loss -- the month before you were diagnosed. I've just started vestibular therapy, mostly gaze stabilization exercises, since oscipillopsia -- when I change my position, move my head or walk, is the most troublesome part of what I have. My eyes are lazy...I need to concentrate on focusing them. Balance is coming along, and although I'm still wobbly, I can manage it.

What caused your loss, and why the gradual deterioration? Have you found no vestibular function is actually better than partial? (They say the benefit of what we have is we no longer get vertigo or dizziness. They sometimes purposely destroy remaining vestibular function in folks with partial function because it can actually feel worse than total loss...) How is your life, and how are you functioning? Would love to hear about your experience if you feel like sharing...

 
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Old 11-15-2016, 08:45 PM   #4
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

I have only noticed that stress and sometimes alcohol (which like you - makes me feel much better) bring on worse days.

I have done VRT a couple times before and similar to your story what is seems happened is that in 2001 I had unilateral attack; lots of vertigo, nystagmus, vomiting etc. Took about two years then better until 2007 when I went to a beer festival and woke up the next day sick again. Symptoms then got better until 2011, then better again until 2013. In 2013 I FINALLY got rotary chair etc. (despite having been to 4 different specialists/VRT/MRIs in two different states; pardon my French but BS really). ENG showed complete loss in right ear with very small loss in left ear. I had oscillopsia here and there suggesting progressive bilateral loss, but I would always get better within weeks. Cut to 4 months ago - oscillopsia that is present every day; I can't make out peoples faces when I am walking and they are far away, I am constantly tired.

In 2013 we discussed ablative therapy to get rid of right ear function. Kind of glad I didn't - personally I would rather let it go naturally in the hope that I might spontaneously get better. My job is usually pretty stressful, however I am also pretty good at getting around Pubmed (lots of info is free on there btw; including "Bilateral Vestibular Loss" articles - "review articles" are good for beginning). Life is not great with this, but I am trying to remain positive and take the stories from UGA and manybikes as inspiration/motivation.

As far as my function - today the MD said that people who have my level of loss (pretty much total) over a short term are wheelchair-bound. I get around/work everyday/drive fine etc. So I guess I am doing alright! I told him, "no wonder I feel like "expletive" all the time! We both got a good laugh.

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Old 11-17-2016, 04:47 AM   #5
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Wow, you've traveled a long road. At least you know what's going on now. It's funny how little doctors seem to know about this affliction. And their assumptions -- that "most people" are in wheelchairs or need a cane -- can be way off. Depends on age, level of fitness, degree of anxiety, and how you lost vestibular function. As you and I have found, it's possible to live a pretty normal life. I know what you mean about walking and people's faces being blurry. Highly recommend gaze stabilization exercises. Through VT, I found out I'd been doing the wrong!

I didn't realize the importance of turning the head as slowly as you need to in order to keep the X "stationary." what I hate most is the stuffed, "wooly-headed" feeling I have now when I move around...just not feeling like myself. But I can live with this. At least there's no hearing loss (yet!) and no chronic pain.

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Old 11-17-2016, 07:32 PM   #6
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Yeah I have to get back into the VRT - I am really hoping it helps. I want to believe that perseverance, passion, and will can conquer anything; we'll see . I just want to feel better you know. For me the oscillopsia, fatigue, and brain fog (sort of like the woolly headed feeling you describe) are the main issues. I have dealt with the postural instability for so long that I'm ok so long as my eyes are open and I'm not in complete darkness.

Thx for your encouraging words!

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Old 11-22-2016, 09:17 AM   #7
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hey, I feel the same as you. Do you feel worse in the dark? Do you feel like you get mentally fatigued and struggle to speak?

 
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Old 11-24-2016, 04:02 AM   #8
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Yes, yes and yes! I think my brain is working so hard to keep me upright that the language doesn't flow as easily -- I find myself grasping for words when I speak -- and I'm really tired by the end of the day.

What's your diagnosis and how long have you had it?

 
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Old 11-29-2016, 05:59 PM   #9
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Reading these posts brings back a lot of memories as I too have total vestibular loss.
It will get better over time, not a straight line but zigzag.

Push yourself but don't be afraid to use devices that will make life easier and relieve the fatigue and brain fog while you get better. Over time life should evenaturally return to somewhat normal.

I am aware of my loss but it has little impact on my life now.

Cheers

Uga/Sammie

 
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Old 11-30-2016, 06:06 AM   #10
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Thank you for the reassuring words, Uga. Do you ever lose the strange head sensations, or will I always feel slightly off...not quite myself?

 
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Old 11-30-2016, 01:41 PM   #11
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

I think it is different for everyone.
I can go months woth feeling normal and then have a setback but I try to remind myself it will be temporary. I know and aware of my imbalance but if you push yourself then the uncomfortable will become comfortable. Busy/noisy environments still bother me as well as the dark.
I know my limitations and if I have a setback with the brain fog/fatigue ect..... I do not hesitate to use a scooter or chair use things when you need them to help with quality of life.... while your brain adapts. Our brain is working overtime to keep us upright, it gets tired... it's ok to give it a break sometimes.

I am normal 80%of time. Also John Hopkins has started clinical trials for a vestibular prosthesis do help is comino soon.

 
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Old 12-01-2016, 03:35 AM   #12
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Thanks, Uga. The John Hopkins trial sounds promising...fingers crossed. In the meantime, I can live with this. No pain, no hearing loss, life could be worse! 🌻

 
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Old 12-07-2016, 11:47 AM   #13
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

vestibular neuronitis was what I got diagnosed with

 
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Old 01-05-2017, 05:48 PM   #14
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hi Barfa, hope you are feeling better. I still have symptoms, but some days I think I feel better and have more energy than others. Still rugged in the dark tho . Hope you are feeling better and interested in your progress!

 
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Old 01-06-2017, 05:25 AM   #15
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Re: I'm newly diagnosed with almost total loss of vestibular function in both ears.

Hi again, Well...thanks for checking in. One thing I've noticed is the longer I walk on any given day, the better I feel (up to a point, if I don't get over-fatigued). We're in FL for the winter, walked about 45 minutes to have breakfast on the beach, and same for the return trip. Started off woolly and wobbly as usual, by the end felt much more "normal." On the other hand, close work -- reading, iPad (which I spend hours on), etc., make me feel worse when I stand up. Also, tend to feel worse in the mornings than the evenings.

I think I'm regaining a sense of feeling more like me, but it could just be I've gotten used to the "new normal." One good sign is I'm not as fatigued at the end of the day. Hope that means ny brain is adjusting and doesn't have to work as hard.

One great exercise my therapist gave me, a variation of gaze stabilization that also works on balance: I stand with one foot in front of the other, hands crossed on chest, and look at an X on the fridge, turning my head while keeping the X in focus.

In general, although I still have a wooly head, hard time seeing signs and faces when I walk, that's getting better...and though I have the occasional stagger, I never feel like I'm going to fall, even in the dark.

How about you...how are you feeling??

 
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