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  • Bilateral hypofunction (BVL)

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    Old 01-01-2014, 06:38 PM   #1
    uga
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    Bilateral hypofunction (BVL)

    Howdy
    It has been a few years since I lost my vestibular system and while things are not easy they have definitely improved over the last few years.
    I just wanted to thank Manybikes for his encouragement and advice to never give up and make yourself move. Crowds, busy places with lots of visual stimuli are still difficult. Even watching trees sway on a busy day can give me problems and just about anything outdoors is not easy but getting better. I feel so much secure with my walking stick as even putting my hand on a stick or came gives me so much more stability and confidence.
    I hope the new year brings more improvement and my goal is to get where Manybikes is. Thanks for the encouragement Manybikes, your posts are invaluable.

     
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    Old 01-02-2014, 09:05 AM   #2
    biteneck
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    Re: Bilateral hypofunction (BVL)

    Quote:
    Originally Posted by uga View Post
    Howdy
    It has been a few years since I lost my vestibular system and while things are not easy they have definitely improved over the last few years.
    I just wanted to thank Manybikes for his encouragement and advice to never give up and make yourself move. Crowds, busy places with lots of visual stimuli are still difficult. Even watching trees sway on a busy day can give me problems and just about anything outdoors is not easy but getting better. I feel so much secure with my walking stick as even putting my hand on a stick or came gives me so much more stability and confidence.
    I hope the new year brings more improvement and my goal is to get where Manybikes is. Thanks for the encouragement Manybikes, your posts are invaluable.
    Hi Uga,
    I wanted to say hello and that I was diagnosed May 2012 with vestibular neuritis and then told it should get better. Well, I started to feel better in summer of 2013 and then in Sept 2013 I felt bad again. This time full of anxiety and dizzies in stores. I feel like my brain is slipping away or I am in a bad dream and cannot wake up. It's very scary and I would like to know if you ever felt like this. I also still get dizziness in stores and that was also better in he summer of 2013. So I would like to know what happened that is now causing me trouble again. My inner ear doctor told me just in December 2013 that the 25% weakness in my left inner ear is not much and I should be ok. He then diagnosed me with migraine associated vertigo. I do not know what to do anymore. How long did it take you to overcome most of this? I have major agoraphobia, where I am afraid to go outside. I have major anxiety in the darkness outside and all this anxiety stuff just started in September 2013. I even get anxiety feelings at home but mostly when I have to go out or be somewhere. I am not driving and that's another issue. Major depression and frustration that I am unable to drive. Please let me know if any of this sounds familiar or if you have any advice. I miss my old feeling and my old self. I feel like I'm never going to be happy or cheerful again. So depressing. I'm glad you are doing better!
    Happy New Year!
    Nicole

     
    Old 01-02-2014, 12:04 PM   #3
    uga
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    Re: Bilateral hypofunction (BVL)

    Nicole,
    I woke up one day and I tried to get out of bed and stumbled before falling down. For about 3-6 months I would get horrible vertigo. It was the worse feeling in the world as I could not do anything or plan anything. After a series of attacks they just stopped and my eyes started to bounce around, I could not focus on anything. I was basically homebound as I could not drive. It was then I was diagnosed with having zero inner ear function with a variety of tests. The last few years I have come a very long way as my oscillopsia has gotten a lot better and I am ok as long as I have my hiking stick. I must say I was a wreck with the vertigo, bu now I cannot get dizzy or vertigo as my ears are completely dead. I much prefer life now as I adjusted and compensated. I still have some trouble in the home depots and Wal-Marts of he world but at least I know I will not get the vertigo so I can push myself through it.
    I walk like a drunk at times and I get tired easily but I know that is my brain working overtime so I push through. My biggest problems are at night and busy places as I have trouble tracking fast moving objects. I also worry about falling as I get old, but as my PHysical Therapist says we will cross that bridge when we come to it. My brain fog is slowly clearing up and because I know I cannot get dizzy or vertigo I no longer have issues with anxiety.

     
    Old 01-02-2014, 03:21 PM   #4
    biteneck
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    Re: Bilateral hypofunction (BVL)

    Hi there,
    May I ask how this happened? Did the doctor say what caused this? I thought that if the inner ear was -0- that you would not be able to hear. How is your hearing? I would love to not feel dizzy. I have the dreamy-state and unreal feelings in my head. I'm wondering if those feelings are more associated with migraine associated vertigo. My doctor just diagnosed me with that or as he called it visual vestibular hypersensitivity. I have 25% vestibular weakness in my left ear and my doctor said that should not be causing any problems, then diagnosed me with the MAV. I guess I am very interested in these dreamy-state/unreal feelings I get in my head where I feel like I'm going to pass out. It's so scary to feel the worse ones when I feel like I'm in a bad dream and cannot wake up. That scares me so much and I feel like I'm dying. Have you ever felt this?
    Thank you!!

     
    Old 01-02-2014, 04:09 PM   #5
    uga
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    Re: Bilateral hypofunction (BVL)

    They do not know what caused my loss, several doctors have indicated a possible virus. My hearing fine, I just lost my balance apparatus. For the first 3-6 months I guess I was still loosing the last of my function and I always felt like I was disconnected from reality. The brain fog was surreal and I could not walk and look from side to side as I moved my head. I did not recognize people on the street because of the bouncy vision. I had to stop walking to see good and focus. After a while it seemed everything kind of settled down and every so often I would have a sort of relapse. Now I keep my balance with my eyes and proprioception. After a period of physical therapy and my brain compensating for the loss of ears I must say things are either getting better or I am used to it. I can ride roller coasters all day and not get one bit of a dizzy feeling, it kind of weird. I get off and just walk away as everybody is complaining about being dizzy.

     
    Old 01-11-2014, 05:47 PM   #6
    biteneck
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    Re: Bilateral hypofunction (BVL)

    Hi Uga,
    Thank you for your reply. I sometimes think that would be better to have the vestibular be dead because of not getting vertigo. I hate the dreamy feeling. Did you have that and has it gotten better? How did they find out your vestibular is at zero? Testing?
    Thank you!

     
    Old 01-11-2014, 07:03 PM   #7
    uga
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    Re: Bilateral hypofunction (BVL)

    Hello,

    They found out I had zero vestibular function in both ears from a battery of tests that included an eng (hot and cold water in my ears) as well as a rotary chair test. I must say that my main problem now is I have no balance and thus it causes me problems in busy places with lots of movement and on uneven surfaces as well as darkness. I now rely on my eyes and proprioception for balance. I do not get dizzy in fact I cannot get dizzy because I have no inner ear function left.
    I do know that migraine associated vertigo is very common and one of the symptoms is having a hard time with balance as well as difficulty in certain places such as stores.

     
    Old 01-11-2014, 08:20 PM   #8
    biteneck
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    Re: Bilateral hypofunction (BVL)

    Hi Uga,
    I also have the floaty feeling and unreal like I'm in a dream feeling. I find it very hard to concentrate and think. To learn new things is difficult for me now. I used to work in accounting and am afraid I will never be able to do that again. I'm feeling really depressed. Do you work?
    Nicole

     
    Old 01-11-2014, 08:51 PM   #9
    uga
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    Re: Bilateral hypofunction (BVL)

    Yes,
    I do work now as a librarian at a University. I recently went back to work after being on disability for several years. I am an attorney by trade but I could no longer perform my job duties as a result of my BVL. I am hopeful I can continue as a librarian as the pace is a lot slower and the stress a lot less, but time will tell. I am cautiously optimistic.

     
    Old 02-12-2014, 09:03 PM   #10
    Linma2428
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    Re: Bilateral hypofunction (BVL)

    I have bilateral hypofunction also. I 've had this since 1986. The last 4 years or so have been better than the previous years. In Nov I started falling and now am falling all the time. The doctor wants me to have another ENG. The last one I had 10 years ago. I wasn't having vertigo much at all was having off balance and eye issues. I had the ENG the doctor had no reponses he said. I felt inside a slight spinning. Afterwards though I got home with severe vertigo for a month. I am afraid the same thing is going to happen. The doctor that did the test had no help to give after the test and all that went on. I have a different doctor now. I just don't know why its necessary to do these test. I've had 3 ENG over the years not to mention all kinds of other test. Never did they give me an actual diagnosis. I don't know why they don't just treat it like its Meneires and see if I do better and throw in PT which I had before that helped. Has anyone had that happen had the ENG and it affected them for a while afterward?

     
    Old 02-13-2014, 01:37 PM   #11
    biteneck
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    Re: Bilateral hypofunction (BVL)

    Hello,
    I noticed that my hearing was very muffled after the tests. My head felt fuzzy. It's almost like taking those tests make you worse than you were before. Now I cannot get rid of that feeling like I am in a dream. I pray it goes away soon.I was dx with MAV in December. Dr. put me on Klonopin. I hope to get on a good medicine for MAV at my follow-up appointment.
    Take care.

     
    Old 02-13-2014, 08:17 PM   #12
    Linma2428
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    Re: Bilateral hypofunction (BVL)

    Well that would be real crummy to have that happen from a test. Maybe it will clear up. Don't know how long its been since your test but mine got better in a couple months.

     
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