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Old 08-05-2011, 10:11 PM   #16
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Manybikes: thanks again for the support,
i get the feeling i just need to keep moving even though it is difficult, that is the way the brain retrains itself?

Manybikes:
do you ever have trouble bending over or carrying heavy objects or has your balance system adapted to those sorts of things as well?

After 5 years what is your biggest issue?
I recently went to the beach and it was very difficult walking in the sand, but i could tell my brain and eyes were fighting for balance and trying to keep me upright. I guess i should try to keep walking on all the uneven surfaces i can.

Manybikes:
do the fast moving objects still cause you problems, are you able to watch sporting events on tv and things with a lot of back and forth/action.

What was your first year like when you were in the acute phase of the disease and the brain was just learing how to compensate. At what point/month into the disease did you feel you were making progress?

Manybikes: do you have complete loss of vestibular function. I have heard it is better to have a complete loss than to have uneven or bad function, do you agree with that?

Thank you my friend.
uga
Hi Uga:

Bending over does not bother me anymore but carrying heavy objects can sometimes be a little more challenging. For example, if you are carrying a large box where you do not have a good visual on your orientation you will feel off balance. Don't forget, from now on your balance will be visual and by what your feet/body feels, you have lost the third balance contributor, your inner ears. Your visual clues become very important.
It used to bother me carrying a suitcase for example, not anymore. If I have to carry a box up or down stairs it is a little more difficult but not bad.

After five years I lead a very normal life, I wish I could do more things in darkness with confidence but this is something you learn to live with, just like someone who has lost the use of a limb (for example) and has adapted, you do most things you used to but are still always aware that you are different. I now do most of the things I enjoy with very few limitations.

Yes, moving objects will take some getting used to. Action movies on a big screen will take you sometime to get used to. When I first went bilateral watching anything on a large screen was very difficult. You will adapt to this, I now enjoy going to the movies. Even scrolling down on my computer was hard at first, not now.

The first year for me was very bad Ugo, very bad. As I mentioned, I have been where you are now and it is a hard place to be. There is generally no magic moment but if I had to guess I would say that going into the second year things really started improving rapidly. This is not to say that you will adapt on the same time lines as me, you may progress more rapidly.
It's like 3 steps forward and 2 steps back type of process in the initial stages of adaptation, then it becomes 3 steps forward and only 1 back, then it just keeps going forward. Does this make sense to you? let me know if it doesn't.

Don't get discouraged, you may not realize it but you are making progress right now but it is hard for you to detect. Several months from now you will look back and realize the progress. You will have set backs but this is normal.

I have no detectable inner ear function in either side. I went to the House Ear Clinic in Los Angeles for testing and they told me my results were as bad as they had ever seen. Did you know that our condition is also known as Dandy's Syndrome? yep, it does have an actual name.

One of the things that seemed to help me a bit was hand writing. I used to do this occasionally. Sit down with a piece of paper and start writing, write whatever you want, I think the concentration and eye hand co-ordination helps. Like I say, try it, let me know if you notice any difference afterwards.
Also, if you go to the gym try one of those vibration therapy/exercise machines.

At this point are you able to walk fairly well in good lighting?
Are you able to work?

Cheers
Manybikes

 
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Old 08-11-2011, 06:46 PM   #17
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Re: Bilateral hypofunction

How are you doing Uga?

 
Old 08-12-2011, 09:32 AM   #18
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Re: Bilateral hypofunction

Thanks manybikes!

Things are tough, but I try to stay as active as possible, I wil not let this ruin my life. I am finding that it is important to push yourself, but dont push yourself over the edge.

Manybikes:
I took a leave from work to let things settle down a bit but want to go back to work asap, I drive 50 miles each way on the highway and eight now I am still unable to drive. Fast moving objects give me a difficult time and throw me in a sort of spin.

Manybikes:
how ling was it until you felt comfortable behind the wheel of a car?
I am getting the feeling the first year or two are tough with many peaks and valleys. The oscilopsia is my main distraction.

Many bikes:
how long was it unti you could read effectively without the brainfog ect....?
I still need an assistive device when going o busy places such as Wal Mart, Home depot, or sporting events---- I bring a cane or if it is reallly busy have used a wheelchair, feel bad about it but from a safety standpoint I have to.

Manybikes:

do you still struggle with concentration lapses?

Thank you a million, you are my hero and someone I always keep in mind on the bad days, knowing there us a lght at the end of the tunnel.

I just wish I was more patient!
Manybikes, maybe having no function is better than having bad function in both ears, I don't know if I could live with vertigo from some of te stories I read maybe I am fortunate in some ways!

Talk soon my friend----- I consider you a role model.

Sincerely,
Uga

 
Old 08-14-2011, 04:00 PM   #19
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Thanks manybikes!

Things are tough, but I try to stay as active as possible, I wil not let this ruin my life. I am finding that it is important to push yourself, but dont push yourself over the edge.

Manybikes:
I took a leave from work to let things settle down a bit but want to go back to work asap, I drive 50 miles each way on the highway and eight now I am still unable to drive. Fast moving objects give me a difficult time and throw me in a sort of spin.

Manybikes:
how ling was it until you felt comfortable behind the wheel of a car?
I am getting the feeling the first year or two are tough with many peaks and valleys. The oscilopsia is my main distraction.

Many bikes:
how long was it unti you could read effectively without the brainfog ect....?
I still need an assistive device when going o busy places such as Wal Mart, Home depot, or sporting events---- I bring a cane or if it is reallly busy have used a wheelchair, feel bad about it but from a safety standpoint I have to.

Manybikes:

do you still struggle with concentration lapses?

Thank you a million, you are my hero and someone I always keep in mind on the bad days, knowing there us a lght at the end of the tunnel.

I just wish I was more patient!
Manybikes, maybe having no function is better than having bad function in both ears, I don't know if I could live with vertigo from some of te stories I read maybe I am fortunate in some ways!

Talk soon my friend----- I consider you a role model.

Sincerely,
Uga
Hey Uga

Yep, the first year can really be tough to deal with but take heart in the fact that this is as bad as it gets, going forward it gets better, much better.

It took about two years before I felt confident driving in all conditions. Where I live in Canada winter presented a challenge. Imagine trying to drive on a freeway in a blinding snow storm...not easy. I started out by driving short distances in areas with very little traffic. I would always have my Wife with me just in case I needed help. We would often go for drives in the country away from city traffic. There were many times where I would have to pull over and have my wife take over driving as I would become exhausted and could not handle it. Driving on busy freeways and driving at night are the two hardest to adapt to. I used to navigate around the city initially by avoiding the freeways and using side streets, this way it gives you plenty of chances to pull over if you have to and the speeds are much slower....on a freeway this is not an option. It always took longer to get where I wanted to go but it was much safer.
I know what you mean about the oscillopsia....it is down right cruel! This does get much better Uga, your brain needs time to adapt.

Never be ashamed about having to use a cane when you are in busy public places, it's better than falling down. You will eventually no longer need the assistive devices but it takes a while.

I still do get the odd concentration lapse, they are very brief. I have no trouble reading a magazine or reading articles on the computer. I used to have a great deal of trouble reading, I would sometimes have to put my elbows on the table and hold my head so I could see the words. I have no problems now in that regard.

You are doing the right things Uga, it takes persistence, patience and a lot of hard work.

Thank you for the many kind words Uga.
I hope that my advice or encouragement helps you somehow. Keep me posted on your progress.

Cheers
Manybikes

Last edited by manybikes; 08-14-2011 at 04:05 PM.

 
Old 09-16-2011, 12:56 PM   #20
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Re: Bilateral hypofunction

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Originally Posted by manybikes View Post
Hey Uga

Yep, the first year can really be tough to deal with but take heart in the fact that this is as bad as it gets, going forward it gets better, much better.

It took about two years before I felt confident driving in all conditions. Where I live in Canada winter presented a challenge. Imagine trying to drive on a freeway in a blinding snow storm...not easy. I started out by driving short distances in areas with very little traffic. I would always have my Wife with me just in case I needed help. We would often go for drives in the country away from city traffic. There were many times where I would have to pull over and have my wife take over driving as I would become exhausted and could not handle it. Driving on busy freeways and driving at night are the two hardest to adapt to. I used to navigate around the city initially by avoiding the freeways and using side streets, this way it gives you plenty of chances to pull over if you have to and the speeds are much slower....on a freeway this is not an option. It always took longer to get where I wanted to go but it was much safer.
I know what you mean about the oscillopsia....it is down right cruel! This does get much better Uga, your brain needs time to adapt.

Never be ashamed about having to use a cane when you are in busy public places, it's better than falling down. You will eventually no longer need the assistive devices but it takes a while.

I still do get the odd concentration lapse, they are very brief. I have no trouble reading a magazine or reading articles on the computer. I used to have a great deal of trouble reading, I would sometimes have to put my elbows on the table and hold my head so I could see the words. I have no problems now in that regard.

You are doing the right things Uga, it takes persistence, patience and a lot of hard work.

Thank you for the many kind words Uga.
I hope that my advice or encouragement helps you somehow. Keep me posted on your progress.

Cheers
Manybikes
manybikes:

was just thinking about you and wanted to say thanks for the help. Things are coming along slowly, but coming along ok.

here are some of my problems, concerns and questions.

I seem to get very very very very fatigued, i am hoping the fatigue improves over time, what was your experience?

manybikes:
i have trouble with large open spaces with big crowds and lots of commotion and noise, i often have to use a wheelchair in these places, i hate to give in, but i don't want to fall as i still have problems tracking fast moving objects. I am hoping this improves over some time. There are times i feel safer in a wheelchair becauese it give me a sense of security, safety and a sort of anchor. I feel bad, but sometimes i do use one if necessary, especially at sporting events, taking my kids to the carnavil ect.........

Manybikes:

i do the vrt for my bouncy vision, oscillopsia: how long before you started to see improvement in the oscillopsia? Does it still bother you? Can you read fine print or magazines such as sports illustrated and those type of things?

Daylight, not too bad, i could not imagine driving in the dark. Anything in the dark is tough.

manybikes: did the shower ever give you problems, closing your eyes and getting the soap out of the hair ect......... Can you close your eyes in such places or did you just learn to do it all with eyes open. It seems when i close my eyes i am very prove to falling.

thanks sooooooo much manybikes, you have helped me more than you will ever know.

uga

 
Old 09-16-2011, 03:23 PM   #21
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
manybikes:

was just thinking about you and wanted to say thanks for the help. Things are coming along slowly, but coming along ok.

here are some of my problems, concerns and questions.

I seem to get very very very very fatigued, i am hoping the fatigue improves over time, what was your experience?

manybikes:
i have trouble with large open spaces with big crowds and lots of commotion and noise, i often have to use a wheelchair in these places, i hate to give in, but i don't want to fall as i still have problems tracking fast moving objects. I am hoping this improves over some time. There are times i feel safer in a wheelchair becauese it give me a sense of security, safety and a sort of anchor. I feel bad, but sometimes i do use one if necessary, especially at sporting events, taking my kids to the carnavil ect.........

Manybikes:

i do the vrt for my bouncy vision, oscillopsia: how long before you started to see improvement in the oscillopsia? Does it still bother you? Can you read fine print or magazines such as sports illustrated and those type of things?

Daylight, not too bad, i could not imagine driving in the dark. Anything in the dark is tough.

manybikes: did the shower ever give you problems, closing your eyes and getting the soap out of the hair ect......... Can you close your eyes in such places or did you just learn to do it all with eyes open. It seems when i close my eyes i am very prove to falling.

thanks sooooooo much manybikes, you have helped me more than you will ever know.

uga
Hi Uga...good to hear from you!

The fatigue is normal..your brain is working twice as hard now because it has taken on the additional duty of full time balance control..this is mentally fatiguing. The muscles in your body are also now working harder because they no longer have the automatic messages from the inner ears to twitch just right to keep balance. As you progress this feeling of constant fatigue does diminish considerably, I still will get tired out a little sooner than others depending on what I am doing. For example, if I am on a motorcycle trip and do a 400 mile day, I am pretty bagged by early evening. I have ridden with others my own age and they have a bit more energy after such a ride but not by a whole bunch.

The oscillopsia can be a bit of a wild card, mine would come and go at different levels of severity for the first couple of years, after that it just started to constantly get better. I still notice it occasionally but in general it has ceased to bother me much anymore. Yes, I can read fine print provided I wear my glasses...but this is due to eyesight not oscillopsia, so I am pretty much normal in that respect. I know how you feel, oscillopsia is just an outright bugger to deal with and it is annoying beyond what you can describe to someone, but it does diminish and pretty much disappears altogether in time. Just another one of those brain re-training things.

Yep, I am familiar with the whole shower deal. Yes, initially having a shower I would have to sometimes keep one hand on the wall and use the other to shampoo etc. This was pretty short lived (less than a year). Once I started to get more confident I was able to shampoo and rinse with my eyes closed. Now I make it a daily ritual to soap my face with my back to the shower stream and turn around keeping my eyes closed to rinse. Doing this does not bother me at all anymore and I have no issues at all balance wise.

Being in a crowded noisy place with low lighting like a bar can be challenging at first, even being in sporting events in open areas like you describe can also offer considerable challenge. I remember going to a concert where I had to inch along between seats (on the second tier) to get to mine...then they turned off the lights cause the band was going to start...yikes...I ended up in some women's lap (didn't spill my beer) although she was pretty good looking it was embarrassing for me and she just wrote me off as another drunk. Oh well, still enjoyed the concert !
Anyway, you will adapt to these situations but it does take time!

Hope all is well with you Uga. You are in the most difficult stages right now..you will get better!!

Cheers
Manybikes

 
Old 12-04-2011, 07:50 AM   #22
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Re: Bilateral hypofunction

Hello, I realise that this thread is a few months old, but I was hoping you would still read this post..

Uga, I was wondering how you are doing?

Manybikes, I read many, many posts from you and your story is indeed an inspiration

I was diagnosed with BV Hypofuction about 11 years ago. It also started very suddenly with a vertigo episode and then the constant unsteadiness and all the other visual/coordination issues you know so well. I did some VRT and was perfectly normal for several years. Then I experienced a similar vertigo episode and again, the other symptoms that remained for about half a year. During that time, I did some more VRT and gradually I had my life back for another few years (I mean, no symptoms whatsoever). Unfortunately, about 2 years ago, it all came back again, but this time nothing seems to help and although I can have "good" days or even weeks, I do relapse over and over again.. I repeated the vestibular tests about a year ago and had lost about 65% on the left side and about 70% on the right one. However, 6 months later I had zero function on the left side and the same 30% left on the right one, which means that my situation is not stable. I don't know if that would have any influence on the fact that I keep on relapsing, but I am starting to think so.
Manybikes, did you get the vestibular tests done over the years to see how it developed?
Uga, I really hope you are doing better. If you have the chance, drop a line to let know how you are doing.

 
Old 12-04-2011, 08:32 AM   #23
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Re: Bilateral hypofunction

Dizzym:

Thanks: I do check the thread. I have no function in either ear and in many ways I think that is better than having bad function. It is tough, but I do not get dizzy or have vertigo. My oscillopsia is starting to settle down and that is good.

I just don't have balance in either ear. I use my eyes and feet/proprioception for balance. In busy environments with lots of activity I use a cane and when I went to disneyworld this summer with the kids I did opt for an electric wheelchair/scooter. It was wonderful, I did not have to worry about fatigue, getting bumped and could just enjoy the days and nights

Dizzym: I have heard having no function in many ways is better than bad function. The only way to go is up with no function as it cannot get worse, so in that aspect I am thankful.

I do ok except on uneven surfaces and in the dark. I also put my safety first and if using a mobility device gives me more freedom and independence I use them only when needed. I push myself but I don't push myself off a cliff if you know what I mean.

Ask as many questions as you need, I always check the thread.

Many bikes is my inspiration as well. As you can see he has been my benchmark, that is where I want to get! If the ear continues to give you trouble I would prefer not to have them, I went through vertigo for about a year as my ears died, it was the worst, I prefer life now, I have control over my future, with verrigo I was helpless.

Your friend
Uga. Let me know if I can help, yes life is better today than this time last year!

 
Old 12-04-2011, 09:15 AM   #24
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Dizzym:

Thanks: I do check the thread. I have no function in either ear and in many ways I think that is better than having bad function. It is tough, but I do not get dizzy or have vertigo. My oscillopsia is starting to settle down and that is good.

I just don't have balance in either ear. I use my eyes and feet/proprioception for balance. In busy environments with lots of activity I use a cane and when I went to disneyworld this summer with the kids I did opt for an electric wheelchair/scooter. It was wonderful, I did not have to worry about fatigue, getting bumped and could just enjoy the days and nights

Dizzym: I have heard having no function in many ways is better than bad function. The only way to go is up with no function as it cannot get worse, so in that aspect I am thankful.

I do ok except on uneven surfaces and in the dark. I also put my safety first and if using a mobility device gives me more freedom and independence I use them only when needed. I push myself but I don't push myself off a cliff if you know what I mean.

Ask as many questions as you need, I always check the thread.

Many bikes is my inspiration as well. As you can see he has been my benchmark, that is where I want to get! If the ear continues to give you trouble I would prefer not to have them, I went through vertigo for about a year as my ears died, it was the worst, I prefer life now, I have control over my future, with verrigo I was helpless.

Your friend
Uga. Let me know if I can help, yes life is better today than this time last year!
Uga,

Thank you so much for your reply and for the great news. It is really nice to hear you are feeling better and able to cope with your daily challenges.

I also have the feeling sometimes that having no function on either ears or at least a stable situation is better than having a ear sending not enough/wrong information to the brain. The vertigo episodes are extremely rare (although I had 2 this week!), I do think they happen when the ear is being damaged again, but my specialist does not think so.

I do suffer from all the symptoms you have described throughout the posts and when I "overdo" any of my "triggers" my dizziness becomes worse: basically anything that envolves too much visual (especially if combined with postural) stimulation really has a negative impact. Shops, crowds, even one to one conversations, computers, any form of physical exercice, travelling by train/car,...

So I was wondering Uga, can you work with computers for a long time? And if so, are there any tips you can give me?
Also, are you doing any form of VRT?
You said you don't have any dizziness..so how would you describe your symptoms, apart from the oscillopsia (which by itself is a very uncomfortable feeling!)? I do suffer from dizziness, like a "floating" sensation and the occasional vertigo..

Of course sitting down is always easier than standing/walking, but I do have problems even sitting down sometimes, specially if I am talking to someone..it just seems to be too much for me to deal with, I get very anxious and then I feel worse...I am lucky I can keep a normal posture/gait (I think all the years I spent dancing classical ballet and practising yoga have something to do with that) but the visual problems are just too much to cope with, so I even had to quit my job..

Thank you so much for your kind words and support. And again, I am so happy to hear you are dealing with this so well

 
Old 12-04-2011, 05:37 PM   #25
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Re: Bilateral hypofunction

Hi Uga and Dizzym210

Uga, good to hear that you are starting to feel better and that you are starting to get out and about. It will continue to get better for you.

Dizzym210, in answer to your question about inner ear testing, my situation was very similar to Uga's, it took less than a year from the time I started having troubles to finally having an ear irrigation to test my inner ear function. By the time the test was taken I had no detectable function in either ear, I have also had the spinning chair test and the results were the same...zero..nada..kaput inner ears. The cause is listed as idiopathic...they just quit working for no apparent reason.
Your case is really different, it appears your function comes and goes or is just slowly deteriorating. What course of action have the Doctors tried? do they have any idea on what is causing the decline in function?

Cheers
Manybikes

 
Old 12-05-2011, 06:51 AM   #26
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Re: Bilateral hypofunction

Thanks many bikes: you are my inspiration, and have been a big help.

Dizzym:
Yes, the oscillopsia/bouncy vision is tough. I feel mine is getting better or I am just getting used to it/central compensation.

I think there is some truth to having no function vs bad/fluctuating function. With no function the brain can adapt with bad/fluctuating function the brain is always fighting and confused. I know people with menieres who just kill their ears because of bad function and vertigo. It hard to adapt to something that is always changing.

I do worry about falling and hurting myself though, especially at night or uneven surfaces. A friend of mine who lost all function uses an electric wheelchair, she broke her shoulder and arm and just decided to be safe. In many ways she may be better off than me because my brain is constantly fighting to keep me upright, the fatigue is unbelievable at times. She has the seat of her pants for balance and does not get the fatigue as I do. She gets her exercise by riding a stationary bike and walking in the treadmill at the gym, but in terms gettin around a busy city like new York where she lives, she just uses her wheelchair on the streets. ----- she is happy!

I fight through it, but there are times in places like Costco, home depot, Wal mart I take the store scooter.

To answer your question I had a harder time as I was loosing function than I do with no function. I would rather have no function han bad function giving me bad signals and vertigo.

I am here to help if needed.

 
Old 12-05-2011, 09:27 AM   #27
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Re: Bilateral hypofunction

Hi Manybikes, Nice to hear from you. Like I mentioned before I read many, many posts from you in other threads too and you are an inspiration!!

My BVL seems indeed very unstable. It all started about 11 years ago, and although I had "normal" years in between, for the past 2 years it has been really hard. I am from Europe (therefore my appologies if my English is not very good sometimes) and have seen specialists in several countries. I have done all sort of tests, including for autoimmune disorders and nothing (apart from several caloric tests who showed BVL) seems to be "wrong", so they have also concluded that the cause is idiopathic. I think in my case - for whatever reason - my function is just declining very slowly. The strange thing is that - although I have zero function in one ear and 30% left in the other - I do feel more comfortable at night and have no problems standing or walking in the dark. In fact, light (mainly fluorescent light and computer screens)/patterns/movement are my biggest triggers which worsen my symptoms. The interesting thing is that 2 of the top specialists in Europe I have seen (one of them in the Netherlands, where I now live) say that it is better to have at least a bit of vestibular function left than none, as it can help with the compensation and with zero function on both ears you can never "get rid of" of symptoms such as oscillopsia and there is a much slimmer chance you will ever get better. Maybe they should be checking this site and your posts lol

Manybikes, after I was diagnosed with BVL, 11 years ago, I did a VRT called optokinetic stimulation during 2 weeks which gave me my life back for years. Then the second time I got worse, it took me about 6 months of the same treatment to have an effect, but after that I was perfectly fine for another 5 years. Then about 2 years ago I got the spinning/vertigo episode all of the sudden (I was working at the office and they even called an ambulance as I had to lay down on the floor and could not get up) and after that the whole "unsteadiness" sensation that never went away... I did the same VRT treatment that had been succesful in the past over and over again and each time it only helped for about 1 month, then it all started again, specially everytime I tried to get back to work. Travelling, working with the computer, the lights at the office were just too much for me to cope with I think, so eventually I had to quit my job. I have now "good days", sometimes "good weeks", during which I really try to push myself and do as much as possible. But when I push myself too much or sometimes, even out of nowhere, I get really bad episodes and cannot even leave the house. It has been a very tiring and frustrating period... So listening to stories like yours really keep me motivated and hopeful that one day it will get better

Manybikes, did you/do you work with computers? And if so, how was it for you when it all started?

Uga, I am really happy to hear how much progress you have been making. I agree that the fact that my BVL is unstable makes it very hard for me to compensate. I asked my doctors about "killing" my right ear (as they do sometimes with patients with Meniere's) and all of them did not think it was a good idea, as they believe that having a bit of function left is better than nothing... But then again, they know so little about BVL and from what you tell me, I am not sure they are right.

I sooo understand your fatigue. Same here, everything just seems to take so much energy that I feel I always need a long time to recover. The other day I was having dinner with some friends and just the whole conversation at the table (you know, moving your head/talking to different people) made me feel worse and the next day I felt I had a hangover (and I did not even drink any alcohol)!

Uga, are you working at the moment?

Again, thank you both for all the information you shared, it means a lot to me!

 
Old 12-05-2011, 12:46 PM   #28
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Re: Bilateral hypofunction

Hi everyone,

I just thought I'd join the conversation. It is cool to find that there are others with this tormenting disorder.

I'm a 24 year old from Canada who has been diagnosed with bilateral vestibular loss last year. I've had honestly horrid episodes of rotary vertigo just about daily for the last 4 years. There were many dark and lonely days during the early years. Sometimes I didn't know how I could even go on. I worked my way to the top, from my GP, CTs and MRIs to a neurologist, to an ENT, to a couple of different hospitals to see more technical neurotologists. It took me about 2 years to finally see someone who could accurately diagnose me. When I first saw doctors in the beginning they would tell me that it was anxiety or TMJ and that I was young so I must be good to go. "You're young, you'll be alright.". I could have sworn I was having strokes and my life was circling the drain. I never let anyone tell me that it was all in my head though. Even my own family told me to give it up. I never did.

I even ended up in the ER a few times over the years, with doctors telling me I simply had BBPV and that I was overreacting. I even had a doctor laugh in my face and tell me "neurotologists" don't exist. Well, they do! It's an ENT with an extra degree in neurology. Living in a smaller town is hard because there isn't much awareness about vestibular issues.

The first 3 years we're an absolute mess. I didn't know what was going on because I was getting this horrible vertigo but I had no hearing problems or nothing noticeably wrong with my ears. Well, last year they found that I had bilateral vestibular loss and they don't know what caused it. 3 months later I went back to the same hospital for a check up and they found that my left ear is completely dead and that my right has about 10-15% left in it.

My BVL is not stable. I still get the odd horrible rotary vertigo episodes that can leave me down and out for a couple of days. Even at 10-15%, it is still possible to get vertigo I guess. The oscillopsia was also very very hard for a while but it seems to have died down some. Now days, I will suddenly feel strange and off balance and I'll move my head and bam, the oscillopsia is back momentarily.

I think my body is simply attacking my inner ears for some strange reason and will continue to do so until they are both completely done. It's been 4 years so I don't know why they would stop now. Do we know that these disorders don't spread to other parts of the body and start attacking them? I hope not.

I just recently have started to feel like perhaps the worst is over. I used to skateboard a lot and was a performer as well and now days I couldn't do either which is depressing. I still have my old friends ask me to do these activities with them but for some reason I have never had the heart to tell them what my problem is. I am somewhat embarrassed. I'm not sure why.

Anyhow, I hope we can all stay in touch because I have never met anyone else with this affliction.

 
Old 12-05-2011, 06:58 PM   #29
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Re: Bilateral hypofunction

Quote:
Originally Posted by dizzym2010 View Post
Uga,

Thank you so much for your reply and for the great news. It is really nice to hear you are feeling better and able to cope with your daily challenges.

I also have the feeling sometimes that having no function on either ears or at least a stable situation is better than having a ear sending not enough/wrong information to the brain. The vertigo episodes are extremely rare (although I had 2 this week!), I do think they happen when the ear is being damaged again, but my specialist does not think so.

I do suffer from all the symptoms you have described throughout the posts and when I "overdo" any of my "triggers" my dizziness becomes worse: basically anything that envolves too much visual (especially if combined with postural) stimulation really has a negative impact. Shops, crowds, even one to one conversations, computers, any form of physical exercice, travelling by train/car,...

So I was wondering Uga, can you work with computers for a long time? And if so, are there any tips you can give me?
Also, are you doing any form of VRT?
You said you don't have any dizziness..so how would you describe your symptoms, apart from the oscillopsia (which by itself is a very uncomfortable feeling!)? I do suffer from dizziness, like a "floating" sensation and the occasional vertigo..

Of course sitting down is always easier than standing/walking, but I do have problems even sitting down sometimes, specially if I am talking to someone..it just seems to be too much for me to deal with, I get very anxious and then I feel worse...I am lucky I can keep a normal posture/gait (I think all the years I spent dancing classical ballet and practising yoga have something to do with that) but the visual problems are just too much to cope with, so I even had to quit my job..

Thank you so much for your kind words and support. And again, I am so happy to hear you are dealing with this so well
Hi Dizzym2010

Computers can be hard on you. I think the hardest part is scrolling up/down. This is hard for your brain to deal with.
I used to temporarily close my eyes while scrolling or moving down. Try blinking your eyes shut when you have to scroll down, just long enough to avoid the actual moving of the screen...I hope I described this right, let me know if I didn't.
The fact you are able to keep normal posture/Gait is very good, and you are right, your dance training may be playing an important role. I trained for years in Tae Kwon Do and I believe this may have assisted in my recovery.
I still often catch myself walking with poor posture with my head down. I always try to walk head up with good posture. Also, try walking with legs close enough together so you can hear your pant cuffs hit each other as you stride. I found that initially I was walking with too wide of a stride. This is not easy at first but you will find that as your brain learns to compensate it will feel normal again.

 
Old 12-06-2011, 05:49 AM   #30
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Re: Bilateral hypofunction

Manybikes,

I replied to your other post yesterday but for some reason it was only posted today, so if you scroll up, you will see it... (I did get a message after posting my message saying it had to be verified first..)

Thanks for the tip on how to cope with the computer.. I try to take breaks every hour or so and I am now using special glasses (with anti reflective coating on both sides) that also help a little..but there are still times when I just get really dizzy after using the computer, particularly when I move my eyes/head away from the screen..horrible sensation! I willl follow your advice now and see if it helps too - thank you!!
When I am feeling bad, I do find myself walking with my legs further apart too and looking down, I had read before that it seems to be common with people with BVL... I do notice that my shoulders also get very tense.. But I will follow your advice and try to keep a normal posture and try to keep my legs together

From what you say, you do not have any more dizziness/vertigo episodes?


Thanks again for your support!!

 
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