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  • Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

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    Old 05-24-2015, 02:02 AM   #1
    Hugo84
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    Question Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Hello,

    I'm a 30 year old male from the Netherlands.
    6 months ago I attracted BVH and I'm having balance, cognitive and vision issues ever since. My oscillopsia is not severe, only my heartbeat shakes it up a bit.

    My balance is going fairly ok, I can walk, bicycle and sport, but it certainly isn't straight and feels awful. I keep active and move a lot, I walk and jog plenty of kilometers per week.

    So the realization that it's going to be permanent just hit me and I feel terrible. I'm hardly coping with it.

    The problem is, I cannot find rest. I sleep for 4 hours and I wake up a bit to turn, and then my whole body has an awful sensation because of the turning. My heart starts to race because anxiety kicks in, and I cannot do anything about it. This disturbs my sleep heavily. Sleeping is awful and the days are too. I'm a mental wreck currently.

    I hope there is anyone around with a similar condition that can relate to this issue and give me some advice on coping with this. I jut want to recharge a bit so I can start coping better and have a more positive mindset to improve faster.

    Looking forward to a response.

     
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    Old 05-24-2015, 06:29 AM   #2
    Candi1006
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    Re: Bilateral Vestibular Hypofunction / Loss (BVH/BVL)

    It seems like a lot of your symptoms are worse at night, right? Do some of the vestibular exercises with your eyes closed. That is my worst thing too, night time. But since doing the eyes closed exercises I have been doing so much more better.

    I know thinking about having it for life is scary, but it doesn't stay as bad as it is... I actually have lots of normal days and even had normal months. My dizziness is mild when it does happen and yes it causes anxiety when it happens, but you get used to the dizziness when it happens and it will get better.

    You are very active so you will recover quicker.

    Take care,

    Candi

    Last edited by Administrator; 06-20-2015 at 07:24 AM.

     
    Old 05-24-2015, 10:52 AM   #3
    Hugo84
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Hi Candi,

    Thank you for responding on such short notice and the kind words!
    Do visual symptoms, absolutely maddening, go on during the night too? Guess we only have the pulse oscillopsia in common, but that's probably the BVH and not your migraine... What is your dizziness like? Do you get vertigo? I only had vertigo when I was 19 for a dozen minute-long attacks within a few months, docs should have given me a warning that my ears were weak -- got tinnitus at 26 and now bigger tinnitus and BVH at 30...

    I haven't had any instructions on VRT yet, but I do some exercises with walking with my eyes closed, all kinds of funny walks. I used to be an avid skater/surfer/snowboarder so my balance is trained, it just lacks the vestibular feedback now and pretty much lost that elegance...
    Hope to get into VRT soon since I made all these things up just to 'measure' my balance and are not fine tuned to any structural progress, but things are going a bit slow on the healthcare side...

    I wondered what you presume as normal?
    Is that good enough to cope with all symptoms or that the symptoms diminished?

    I read you have been on AD's for a while and I'm considering taking them as well, just to get rid of this up and down emotional rollercoaster propelled with anxiety and depression. Did they help you to become more steady in your emotions and helped you dealing with the symptoms?

    My knee muscles feel like jelly most of the time and that feeling is pretty intense. I think this is anxiety doing it, since that is in overdrive... Perhaps someone can relate to this?

    Last edited by Administrator; 06-20-2015 at 07:20 AM.

     
    Old 05-26-2015, 09:35 AM   #4
    Candi1006
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Hi,

    My normal def. isn't like others' normal who don't have this condition.

    For instance I'm at a theme park now with family and the hour and 1/2 drive here is hectic if my husband drives over 55 mph. I start getting off balance.

    I do not have vertigo per se, but sometimes when I close my eyes and lay down I feel like I am about to spin.

    I was a skimboarder and worked out 5 to 6 days a week before all of this happened. I was literally as fit as I could be and then got hit with this madness.

    I not sure about what is caus My what with my symptoms.

    I've heard that there is a type of migraine that can cause BVH. I have to take verapamil otherwise I would have a daily migraine. This has certainly gotten worse over time too, I mean the vision stuff. The balance stuff is a little worse too in some areas.

     
    Old 05-27-2015, 12:20 PM   #5
    Hugo84
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    I was pretty fit too. I lived quite balanced with healthy cooking, sporting, work and friday night party'ing. Don't understand how quick you can go from fit to this....

    I think the visual perception and cognitive constrictions are the hardest for me to deal with. Balance is working out so far... Nights are terrible lately, hope this resolves soon, a good night sleep is such a precious gift... Need to get that anxiety under control first.

    Good to hear that you are still doing normal activities, hope you were able to enjoy the themepark as well. You can deal with the crowds and all the vivid colored moving objects? I think I would be exhausted after 30 minutes...

    Do you do any eye related exercises?

     
    Old 06-03-2015, 04:40 PM   #6
    uga
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Hugo84

    I have had bilateral hypo function for several years and things do improve over time but it is slow and progress should be measured in months and even years not days and weeks.

    Do your caloric testing show total loss of balance and vestibular function?

    My brain fog has left me but the fatigue is something I have just gotten used to. Ask as many questions as you need, if I can help I will.

     
    Old 06-08-2015, 04:50 PM   #7
    hyjung776
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Hi

    Please find out about SCM(sternocleidomastoid) trigger point massage. That is on your neck. I couldn't drive well for one year and 6 months but after the massage, I got cured. I had exact same symptom with you. If you get cured, please spread the word for others as well. Hope you get better soon. I am sure you will!!-Jenny

    Last edited by Administrator; 06-20-2015 at 07:27 AM.

     
    Old 12-18-2015, 02:07 PM   #8
    DizzyMary
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    I have 100% loss on both sides and haven't been able to drive on the highway for 5 years. I am wondering what type of driving issues others have had and what may have helped. I am curious about the massage and what exactly it helped..?

     
    Old 12-26-2015, 09:32 PM   #9
    uga
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    I do not drive on the highway for safety reasons but I do drive in back roads without much problem during light traffic times.

    My oscillopsia has gotten better over the years but I still stay off busy crowded interstates and freeways.

    How is your overall balance during the day? Are you able to function reasonably well?

     
    Old 02-09-2016, 04:36 AM   #10
    srle
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Quote:
    Originally Posted by uga View Post
    I do not drive on the highway for safety reasons but I do drive in back roads without much problem during light traffic times.

    My oscillopsia has gotten better over the years but I still stay off busy crowded interstates and freeways.

    How is your overall balance during the day? Are you able to function reasonably well?

    Hi Uga,

    I have also BVH for four months now. Mayor issue is the brain fog, decreased cognitive part, which is very difficult to cope with. I stil try to do professional and parenting tasks but it gets so difficult.

    You said that your brain fog is better now, how did it happen, did you use any supplements, exercises?

    I would so much appreciate any word from you on this. Thanks

     
    Old 02-10-2016, 03:04 PM   #11
    uga
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Quote:
    Originally Posted by srle View Post
    Hi Uga,

    I have also BVH for four months now. Mayor issue is the brain fog, decreased cognitive part, which is very difficult to cope with. I stil try to do professional and parenting tasks but it gets so difficult.

    You said that your brain fog is better now, how did it happen, did you use any supplements, exercises?

    I would so much appreciate any word from you on this. Thanks
    It was a long process and progress should not be measured in days or weeks but months. I pushed myself very hard and did things that made me uncomfortable but gradually my brain adapted and I now live a pretty normal life outside of the fatigue. That is my biggest issue now. I am tired at the end I the day. I also did vestibular rehab exercises whenever I got an extra few minutes in the day.

    At about the 2 year mark I felt pretty normal and now there are times I almost forget I have no balance mechanisms in either ear. Be careful in the dark!!!

    Do you have oscillopsia or bouncy vision? For that was tough at first but gradually around the one year mark mine started to improve and now is pretty much non-existent. Except for a short lived relapse every so often for a day or so but always seems to go away.

     
    Old 02-10-2016, 11:01 PM   #12
    srle
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Quote:
    Originally Posted by uga View Post
    It was a long process and progress should not be measured in days or weeks but months. I pushed myself very hard and did things that made me uncomfortable but gradually my brain adapted and I now live a pretty normal life outside of the fatigue. That is my biggest issue now. I am tired at the end I the day. I also did vestibular rehab exercises whenever I got an extra few minutes in the day.

    At about the 2 year mark I felt pretty normal and now there are times I almost forget I have no balance mechanisms in either ear. Be careful in the dark!!!

    Do you have oscillopsia or bouncy vision? For that was tough at first but gradually around the one year mark mine started to improve and now is pretty much non-existent. Except for a short lived relapse every so often for a day or so but always seems to go away.
    I do not have oscillopsia, nor I have major problems with balance and vertigo. Its this heavy brain fog, worse in the morning, but it somehow gets bit better in the afternoon. It really affect me hard, I feel like spaced out and its very difficult to perform normally.

     
    Old 05-22-2016, 01:56 PM   #13
    uga
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Quote:
    Originally Posted by Hugo84 View Post
    I was pretty fit too. I lived quite balanced with healthy cooking, sporting, work and friday night party'ing. Don't understand how quick you can go from fit to this....

    I think the visual perception and cognitive constrictions are the hardest for me to deal with. Balance is working out so far... Nights are terrible lately, hope this resolves soon, a good night sleep is such a precious gift... Need to get that anxiety under control first.

    Good to hear that you are still doing normal activities, hope you were able to enjoy the themepark as well. You can deal with the crowds and all the vivid colored moving objects? I think I would be exhausted after 30 minutes...

    Do you do any eye related exercises?

     
    Old 05-22-2016, 01:59 PM   #14
    uga
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Hugo 84
    How are you coming along? Are things getting better?

    How if the balance and fatigue?

    I am hoping it us slowly improving for you.

     
    Old 05-22-2016, 02:01 PM   #15
    uga
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    Re: Bilateral Vestibular Hypofunction/Loss (BVH/BVL)

    Quote:
    Originally Posted by Candi1006 View Post
    Hi,

    My normal def. isn't like others' normal who don't have this condition.

    For instance I'm at a theme park now with family and the hour and 1/2 drive here is hectic if my husband drives over 55 mph. I start getting off balance.

    I do not have vertigo per se, but sometimes when I close my eyes and lay down I feel like I am about to spin.

    I was a skimboarder and worked out 5 to 6 days a week before all of this happened. I was literally as fit as I could be and then got hit with this madness.

    I not sure about what is caus My what with my symptoms.

    I've heard that there is a type of migraine that can cause BVH. I have to take verapamil otherwise I would have a daily migraine. This has certainly gotten worse over time too, I mean the vision stuff. The balance stuff is a little worse too in some areas.

    Candi, have you lost all inner ear function in both ears?

     
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