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Old 12-06-2011, 06:42 AM   #31
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Re: Bilateral hypofunction

Dizzym:

Manybikes is right on, I use the same tricks when on a computer, close eyes when scrolling down. Manybikes in an invaluable resource.

To answer your question, I just went back to work after almost a year, I am an attorney, and now I just do research for cases, I can sit at a desk in a quiet room. I could not be a teacher or salesman with this. I did see a counselor with bvl when I was in a bad place, it helped a lot. I was luck to have found a therapist with bvl to help me, she understood!

Here is my story of the last year---- I had bvl but testing showed some function in my left ear, it wa sendin bad signals I my brain all the time, causin brain fog/ dizziness/vertigo! My dr made the decision to give me antibiotics shots in the leg/butt for two weeks---- 2 shots a day for two weeks/ no shots on the weekend. It killed the remaining bad function and then I slowly started to get better. I had nothing to loose, the dr said I had 10-15% function left and that was my problem. The first 6 months was bad, but than I could see improvements. It got worse than better/. With no function I have no brain fog, dizziness/vertigo---- just bad balance, the oscillopsia is starting to settle after a year and does not give me much trouble, I am getting used to it.


Dizzym: I could not work until I lost all function, and than it was about a year after that. I can now take each day as it comes and not worry about vertigo/dizziness--- I can live with bad balance--- I can use a hiking stick or wheelchair on my bad days. Before I was basically homebound.

Many bikes is an inspiration to many myself included!

Keep askin questions---I am here to help as is Manybikes and many others.
Life for me is finally getting better all the time.

 
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Old 12-06-2011, 06:55 AM   #32
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Re: Bilateral hypofunction

Dizzym:

Manybikes is right on, I use the same tricks when on a computer, close eyes when scrolling down. Manybikes in an invaluable resource.

To answer your question, I just went back to work after almost a year, I am an attorney, and now I just do research for cases, I can sit at a desk in a quiet room. I could not be a teacher or salesman with this. I did see a counselor with bvl when I was in a bad place, it helped a lot. I was luck to have found a therapist with bvl to help me, she understood!

Here is my story of the last year---- I had bvl but testing showed some function in my left ear, it wa sendin bad signals I my brain all the time, causin brain fog/ dizziness/vertigo! My dr made the decision to give me antibiotics shots in the leg/butt for two weeks---- 2 shots a day for two weeks/ no shots on the weekend. It killed the remaining bad function and then I slowly started to get better. I had nothing to loose, the dr said I had 10-15% function left and that was my problem. The first 6 months was bad, but than I could see improvements. It got worse than better/. With no function I have no brain fog, dizziness/vertigo---- just bad balance, the oscillopsia is starting to settle after a year and does not give me much trouble, I am getting used to it.


Dizzym: I could not work until I lost all function, and than it was about a year after that. I can now take each day as it comes and not worry about vertigo/dizziness--- I can live with bad balance--- I can use a hiking stick or wheelchair on my bad days. Before I was basically homebound.

Many bikes is an inspiration to many myself included!

Keep askin questions---I am here to help as is Manybikes and many others.
Life for me is finally getting better all the time.

 
Old 12-06-2011, 09:50 AM   #33
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Dizzym:

Manybikes is right on, I use the same tricks when on a computer, close eyes when scrolling down. Manybikes in an invaluable resource.

To answer your question, I just went back to work after almost a year, I am an attorney, and now I just do research for cases, I can sit at a desk in a quiet room. I could not be a teacher or salesman with this. I did see a counselor with bvl when I was in a bad place, it helped a lot. I was luck to have found a therapist with bvl to help me, she understood!

Here is my story of the last year---- I had bvl but testing showed some function in my left ear, it wa sendin bad signals I my brain all the time, causin brain fog/ dizziness/vertigo! My dr made the decision to give me antibiotics shots in the leg/butt for two weeks---- 2 shots a day for two weeks/ no shots on the weekend. It killed the remaining bad function and then I slowly started to get better. I had nothing to loose, the dr said I had 10-15% function left and that was my problem. The first 6 months was bad, but than I could see improvements. It got worse than better/. With no function I have no brain fog, dizziness/vertigo---- just bad balance, the oscillopsia is starting to settle after a year and does not give me much trouble, I am getting used to it.


Dizzym: I could not work until I lost all function, and than it was about a year after that. I can now take each day as it comes and not worry about vertigo/dizziness--- I can live with bad balance--- I can use a hiking stick or wheelchair on my bad days. Before I was basically homebound.

Many bikes is an inspiration to many myself included!

Keep askin questions---I am here to help as is Manybikes and many others.
Life for me is finally getting better all the time.
Uga,

Thank you again for sharing a bit more of your story. One of the hardest things for me to live with is the fact that I cannot work. I have worked all my life, I loved my last job and I feel very isolated and useless now…I am a translator/editor/language consultant, so my job involves the use of a computer and scrolling up/down all the time! Working from home is also very complicated because if I sit in front of a computer screen for a while, I find it very difficult afterwards to do anything else. I get this weird sensation when I move my eyes/head away from the screen, my oscillopsia and dizziness get worse.

Uga, do you suffer from anxiety/panic attacks? Or did you when you were at your worst?
I used to have panic attacks all the time when it all started, then they went away, but I still do get very anxious when I am having a bad day/episode…
Uga, I cannot believe you saw a therapist who also had BVL! What are the odds?? I am sure that must have been great help too.
I have never met anyone in person with BVL, I have not even “met” anyone though the internet from Europe, where I am from… it is so rare and because it is so “invisible”, it makes it even more difficult for other people to really understand what we go throught…

Uga, when you had the 10-15% function left, did you also feel off balance, I mean, did you also need a cane/wheelchair to move around? My balance is actually very good (the specialist could not believe when I did the Posturographic test and it showed that my balance was better than "normal" people - no problems keeping my balance, not even on uneven surfaces/with eyes closed), so I am so afraid to lose that if I end up losing all my vestibular function..

Again, thank you so much for your great advice. And I am so happy to hear you are getting better and better

 
Old 12-06-2011, 10:33 AM   #34
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Re: Bilateral hypofunction

Dizzym:
Life for me was tough with just 10-15% function, because it always caused me vertigo/dizziness as bad signals always through me for a loop. My balance has always been ok, I did not notice the difference between the 10-15% and no function. The only change for me was I now have no vertigo or dizziness. It took me a year to adapt but all is good. With bad signals I could not use the computer for a long time, now it is ok. I made myself watch action movies when I lost function and that helped.

Anything that made me feel weird or off or anything hat gave me trouble I did over and over. In other words I moved towards the uncomfortable and in time it became comfortable. I could not do this with function because it was ever changing and fluctuating and my brain was constantly adapting, never settled. Now I think my brain just got used to having no signal from the ears and this it was easier to adapt.

The reason I sometimes use a chair or stick is not for bad balance, it is because some days I push myself sooooo much the fatigue gets to me.

Do not feel bad about the working part, it will come, I could only work after all function was lost. I could not drive, I could not do much, when I lost all function I got worse for a few months and then at about 6 months I started getting better.

My balance is fine, I just get tired easily, my body is still adjusting and now my problem is fatigue. I can only go about 2-4 hours and I feel exhausted. On those days I use my chair, I keep it at work. It gives me my freedom and independence without the fatigue on the days I need it. About 1 or 2 times a week depending on my stress level ect...

I hope to be where Manybikes is one day.

One thing I did when I lost function was I went to the shopping mall and sat on the bench and watched people walk by, lots of commotion, hat helped me. I sat here all day.

I also used to write and believe it or not I got coloring books and used to color. At first I could not stay in te lines now I have no problem.

I also played ping pong and that helped with the oscillopsia.

As for panic and anxiety attacks, I only got them when I was having vertigo--- how can you not get anxiety when your world can spin at any time. Now I know the verrigo and dizziness are gone, I just focus on getting better and pushing myself. Now there is nothin to panic about, but yes, I used to when the vertigo/brain fog was problem for me. ---- it is very natural. Have you tried to take a Valium/Xanax or an antidepressant to help with the anxiety?

Last edited by uga; 12-06-2011 at 10:53 AM.

 
Old 12-07-2011, 06:55 AM   #35
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Re: Bilateral hypofunction

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Originally Posted by dizzym2010 View Post
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!!
Hey Dizzym

I no longer get vertigo, that portion of my ordeal ended quickly. The computer did initially bother me a lot. Just after I went BVL I had to do a safety presentation for the small airline I was working for. I had to read from a power point presentation....I was unable to stand at all through any of it and had to remain seated. The walking part is also not easy all the time but I try to do it as often as possible.

 
Old 12-12-2011, 04:18 AM   #36
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Dizzym:
Life for me was tough with just 10-15% function, because it always caused me vertigo/dizziness as bad signals always through me for a loop. My balance has always been ok, I did not notice the difference between the 10-15% and no function. The only change for me was I now have no vertigo or dizziness. It took me a year to adapt but all is good. With bad signals I could not use the computer for a long time, now it is ok. I made myself watch action movies when I lost function and that helped.

Anything that made me feel weird or off or anything hat gave me trouble I did over and over. In other words I moved towards the uncomfortable and in time it became comfortable. I could not do this with function because it was ever changing and fluctuating and my brain was constantly adapting, never settled. Now I think my brain just got used to having no signal from the ears and this it was easier to adapt.

The reason I sometimes use a chair or stick is not for bad balance, it is because some days I push myself sooooo much the fatigue gets to me.

Do not feel bad about the working part, it will come, I could only work after all function was lost. I could not drive, I could not do much, when I lost all function I got worse for a few months and then at about 6 months I started getting better.

My balance is fine, I just get tired easily, my body is still adjusting and now my problem is fatigue. I can only go about 2-4 hours and I feel exhausted. On those days I use my chair, I keep it at work. It gives me my freedom and independence without the fatigue on the days I need it. About 1 or 2 times a week depending on my stress level ect...

I hope to be where Manybikes is one day.

One thing I did when I lost function was I went to the shopping mall and sat on the bench and watched people walk by, lots of commotion, hat helped me. I sat here all day.

I also used to write and believe it or not I got coloring books and used to color. At first I could not stay in te lines now I have no problem.

I also played ping pong and that helped with the oscillopsia.

As for panic and anxiety attacks, I only got them when I was having vertigo--- how can you not get anxiety when your world can spin at any time. Now I know the verrigo and dizziness are gone, I just focus on getting better and pushing myself. Now there is nothin to panic about, but yes, I used to when the vertigo/brain fog was problem for me. ---- it is very natural. Have you tried to take a Valium/Xanax or an antidepressant to help with the anxiety?
Uga, sorry I took a few days to reply to your message..Had another vertigo episode and everytime it happens I feel completely exhausted (as if I had a hangover) for a couple of days..(

I am getting the idea, from all I have been reading about your experiences, that I would be better off without any function at all! I remember thinking that before and discussing it with my specialists, but none of them (even in different countries) agreed to it, as they believe it is better to have a little bit left than nothing.. And since I have no idea what is causing the damage and how long it might take (or not) to lose what is left on one side, I feel very frustrated because I dont know how much longer I can deal with this..

Yes, I only have panic attacks when I have a bad dizzy day/vertigo episode, so no matter what the doctors say, I know it is completely connected to it. I was also very active all day long, worked, danced, used the gym, was involved in all sort of activities all the time and never had anything like this! Sometimes I do take xanax (when needed) because my docs say it is a vestibular surpressant (and I should be using the vestib functin I have left) and besides it is highly adictive...

It is very motivating to hear your story, so thank you again for your words and I am sure you will get to the same level as manybikes anytime soon!!!

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

Quote:
Originally Posted by manybikes View Post
Hey Dizzym

I no longer get vertigo, that portion of my ordeal ended quickly. The computer did initially bother me a lot. Just after I went BVL I had to do a safety presentation for the small airline I was working for. I had to read from a power point presentation....I was unable to stand at all through any of it and had to remain seated. The walking part is also not easy all the time but I try to do it as often as possible.
Thanks manybikes. I have just had a really bad vertigo episode a few days ago, and still feeling the effects of it..it is just exhausting!

My question is, when you mentioned that you could not stand for long during the power presentation and that walking can be difficult sometime, what exactly do you feel? Because in those circumstances I do feel dizzy (and/or have vertigo) with the sensation that I am about to fall (although I can physically stand/walk perfectly) you don't feel dizzy anymore, right?

Sorry for all my questions!!

 
Old 12-26-2011, 07:01 AM   #38
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Re: Bilateral hypofunction

Hopefully Manybikes will be along to answer you dizzyme.

Dizzyme: do you have trouble walking in crowds, lots of movement, uneven surfaces?

The one thing I am afraid of is falling and breaking an arm or shoulder or something. Have you ever considered using a hiking pole/stick to give your brain another reference point.

The one thing that does worry me about having no balance is getting older and into my 70's. I would rather use an electric chair than anything else.

Falls scare me as they can kill.

How is your oscillopsia dizzyme? Has it settled down a bit? Do you drive with the bouncy vision?

 
Old 01-08-2012, 10:17 PM   #39
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Re: Bilateral hypofunction

Quote:
Originally Posted by dizzym2010 View Post
Thanks manybikes. I have just had a really bad vertigo episode a few days ago, and still feeling the effects of it..it is just exhausting!

My question is, when you mentioned that you could not stand for long during the power presentation and that walking can be difficult sometime, what exactly do you feel? Because in those circumstances I do feel dizzy (and/or have vertigo) with the sensation that I am about to fall (although I can physically stand/walk perfectly) you don't feel dizzy anymore, right?

Sorry for all my questions!!
Hi Dizzym2010

Sorry for the delay in getting back to you, I usually get an email notification but it didn't get it this time.
In answer to your questions:
I always used to feel unstable, and yes, I would feel like I was about to fall down (even though I wasn't). When standing and talking to someone I would always try to be near a chair, table, wall or anything that I could touch for some kind of stability. At the time it was almost impossible for me to stand in front of a group of people and talk without some kind of support (podium). The power point presentation I had made had video clips in it, if I watched them for too long I would get a dizzy sick kind of feeling.
I could not walk and look sideways at the same time, basically I felt like a total wreck.
The fact that you can stand/walk perfectly is a big bonus for you, how is your balance/walking ability in low light or darkness?
What is your vertigo like?
For example, when you get vertigo are you visually able to keep objects still and in focus?
When I used to get a vertigo attack they were very brief and almost violent in nature where even if I was sitting down I would have trouble not falling, it would feel like someone grabbed my head and was trying to throw me to the floor. If you are having a vertigo attack have someone look at your eyes, if it is a true vertigo attack your eyes will be vibrating at an incredible rate...kind of spooky!

Anyway, the vertigo attacks stopped in the first year and the sensation of feeling dizzy/swimming head etc. would come and go but eventually disappeared altogether. It is the ocsillopsia and weird sensations in the head that can be the most bothersome and take awhile to subside or go away.

In short, no, I no longer feel dizzy at all. I am however always aware that I have limitations that FIET's (functioning inner ear types! lol) do not have. These limitations are few and I feel have very little impact on my life now.

Feel free to ask questions, I know what you are going through is very very hard to deal with. Trying to describe some of the things we feel and experience is almost impossible to describe to others.

 
Old 01-11-2012, 02:11 PM   #40
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Dizzyme: do you have trouble walking in crowds, lots of movement, uneven surfaces?

The one thing I am afraid of is falling and breaking an arm or shoulder or something. Have you ever considered using a hiking pole/stick to give your brain another reference point.

The one thing that does worry me about having no balance is getting older and into my 70's. I would rather use an electric chair than anything else.

Falls scare me as they can kill.

How is your oscillopsia dizzyme? Has it settled down a bit? Do you drive with the bouncy vision?
Uga, sorry I did not reply sooner, but I never got a notification on my email about your post. In fact, I have just received one regarding manybikes last post and that was how I saw yours.
I do have a lot of problems walking in crowds, specially if under some bright fluorescent lights... any type of strong visual stimulation (like movement, lights, computer screens) are very hard for me to deal with...
Fortunately, my balance is actually very good, so I don't have many problems with uneven surfaces or even to walk in the dark. My main issues seem to be the visual ones. There are times, that even if I can stand or walk, I just get the feeling that I am falling or that everything around me is moving and the sensation can be so bad, that I just need to lay down (I get dizzy even sitting down sometimes!). And no, I don't drive anymore, I get very dizzy very quickly after driving for just 10 min...
Uga, have you ever fallen due to the dizziness or are you afraid you might one day? so how is your balance in general?and do you drive?

 
Old 01-11-2012, 02:46 PM   #41
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Re: Bilateral hypofunction

Quote:
Originally Posted by manybikes View Post
Hi Dizzym2010

Sorry for the delay in getting back to you, I usually get an email notification but it didn't get it this time.
In answer to your questions:
I always used to feel unstable, and yes, I would feel like I was about to fall down (even though I wasn't). When standing and talking to someone I would always try to be near a chair, table, wall or anything that I could touch for some kind of stability. At the time it was almost impossible for me to stand in front of a group of people and talk without some kind of support (podium). The power point presentation I had made had video clips in it, if I watched them for too long I would get a dizzy sick kind of feeling.
I could not walk and look sideways at the same time, basically I felt like a total wreck.
The fact that you can stand/walk perfectly is a big bonus for you, how is your balance/walking ability in low light or darkness?
What is your vertigo like?
For example, when you get vertigo are you visually able to keep objects still and in focus?
When I used to get a vertigo attack they were very brief and almost violent in nature where even if I was sitting down I would have trouble not falling, it would feel like someone grabbed my head and was trying to throw me to the floor. If you are having a vertigo attack have someone look at your eyes, if it is a true vertigo attack your eyes will be vibrating at an incredible rate...kind of spooky!

Anyway, the vertigo attacks stopped in the first year and the sensation of feeling dizzy/swimming head etc. would come and go but eventually disappeared altogether. It is the ocsillopsia and weird sensations in the head that can be the most bothersome and take awhile to subside or go away.

In short, no, I no longer feel dizzy at all. I am however always aware that I have limitations that FIET's (functioning inner ear types! lol) do not have. These limitations are few and I feel have very little impact on my life now.

Feel free to ask questions, I know what you are going through is very very hard to deal with. Trying to describe some of the things we feel and experience is almost impossible to describe to others.
Manybikes,
I also did not receive notifications a couple of times recently. So no worries and thank you so much for replying.
It is really hard to describe to what you call FIET (love it!lol) what we feel and experience, so it is really nice when you can talk to someone who knows exactly what we are going throught, like the "falling down sensation" (even though we can stand still) or the spinning vertigo episodes. I do get the dizzy feeling often if I sit too long in front of the computer (reading, scrolling up/down), so I can imagine how hard the PP presentation must have been. When I get the bad vertigo episodes (they are rare and happen maybe 4 times a year) it is exactly like you describe, I cannot even sit down, its as if something is pushing me to the floor. In fact, when it all started, it was with a violent spinning vertigo episode, I could not even get up from the floor for a while. You are so lucky that you no longer have those vertigo episodes, I don't get them often, but when they do, they are really scarry and I have developed panic attacks in the past as a consequence of those.. I am not sure I would describe my vision then as out of focus, its is more like with every move I make with my head/eyes, everything moves at an amazing speed..

I am very fortunate that my balance is good and for some strange reason I actually feel more comfortable in the dark. In my house, I always have candles on in the evening and sometimes when I out and there is too much visual stimulation (like bright lights) I just close my eyes for a few seconds while standing/walking..strange isn't it? most people with BVL seem to have more problems with no or very little light..

I have been pushing myself a lot, trying to go out everyday, trying to expose myself to my "triggers" as much as possible. Is there any other advice you might have for trying to teach our brains to compensate for the vestibular loss? Have you ever done VR exercices for oscillopsia? I did some a while ago but after a month, I did not feel any improvements...

I hope one day I will get even half way to where you are manybikes. Thanks again for the support.

 
Old 01-11-2012, 03:52 PM   #42
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Re: Bilateral hypofunction

Quote:
Originally Posted by dizzym2010 View Post
Manybikes,
I also did not receive notifications a couple of times recently. So no worries and thank you so much for replying.
It is really hard to describe to what you call FIET (love it!lol) what we feel and experience, so it is really nice when you can talk to someone who knows exactly what we are going throught, like the "falling down sensation" (even though we can stand still) or the spinning vertigo episodes. I do get the dizzy feeling often if I sit too long in front of the computer (reading, scrolling up/down), so I can imagine how hard the PP presentation must have been. When I get the bad vertigo episodes (they are rare and happen maybe 4 times a year) it is exactly like you describe, I cannot even sit down, its as if something is pushing me to the floor. In fact, when it all started, it was with a violent spinning vertigo episode, I could not even get up from the floor for a while. You are so lucky that you no longer have those vertigo episodes, I don't get them often, but when they do, they are really scarry and I have developed panic attacks in the past as a consequence of those.. I am not sure I would describe my vision then as out of focus, its is more like with every move I make with my head/eyes, everything moves at an amazing speed..

I am very fortunate that my balance is good and for some strange reason I actually feel more comfortable in the dark. In my house, I always have candles on in the evening and sometimes when I out and there is too much visual stimulation (like bright lights) I just close my eyes for a few seconds while standing/walking..strange isn't it? most people with BVL seem to have more problems with no or very little light..

I have been pushing myself a lot, trying to go out everyday, trying to expose myself to my "triggers" as much as possible. Is there any other advice you might have for trying to teach our brains to compensate for the vestibular loss? Have you ever done VR exercices for oscillopsia? I did some a while ago but after a month, I did not feel any improvements...

I hope one day I will get even half way to where you are manybikes. Thanks again for the support.
Hey DizzyM

The reason I no longer get the vertigo attacks is because I no longer have any vestibular function in either side. I have been told that vertigo is primarily caused by uneven or faulty inner ear function between the two sides. If one inner ear is sending a different message from the other it can cause vertigo. People who suffer from Menieres can get severe vertigo attacks than can last for hours.
If you are getting attacks of vertigo and can do things like easily walk in the dark or walk with your eyes closed, this may indicate that you still may have vestibular function but it is.....malfunctioning.
I can walk in darkness but I am not totally comfortable with it. The lights of oncoming traffic while driving at night used to be hard to deal with....I felt like a bug being attracted to one of those zappers!
Adaptation is a process that will vary for each individual. If there was some activity I was having trouble with I would just continue to do it little bits at a time. Re-learning how to drive in freeway traffic for example took quite awhile to adapt to. Initially I avoided freeways altogether as I just could not safely handle it...way too much stimulation. For the longest time I would drive on side streets that had low speed limits and plenty of space to pull over if I had to. I then worked my way up to short duration drives on the freeway when traffic was minimal...eventually (and slowly) was able to work my up as my confidence started to build.
To show how bad it was I was initially unable to drive if it was a windy day!!

I cannot stress enough that you must always put safety first, it is good to push yourself but always plan or map out your activity ahead of time. If any of your activities have an element of danger to them...have someone with you that can help or assist if things go wrong.

Yes, I did do a lot of VR exercises like the focusing on objects while shaking my head, standing tandem foot with eyes closed etc. These type of exercises are an excellent way to re-train the brain,but the results are never immediate.

I understand your frustration, I had many days where I would be literally in tears thinking that I would never improve. It does come but it is a painfully slow process. I got used to measuring my progress in months, not days or weeks. I have been BVL now for six years and I still continue to improve. Every year I am able to do more things that I never thought I would do again.

Hang in there DizzyM, you will get better.

Your description of your vertigo is right on, to me it was like watching a movie where the film reel goes out of control and you see the frames whizzing by but are unable to stop them to see what they are.

Last edited by manybikes; 01-23-2012 at 09:18 PM.

 
Old 01-12-2012, 11:47 AM   #43
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uga HB User
Re: Bilateral hypofunction

Dizzyme:
Yes I do drive but not on highways nor at night, but I think one day I will be able to do both.

To answer your question, I think my balance is good for someone with no vestibular system but compared to a normal person it is probably not the best, but is improving. Daylight is ok--- night/darkness is terrible. Always have a night ligh or bathroom light on at night.

I do worry about falling as falls can be dangerous and do serious damage to you, broken bones, concussions or even death. I have a hiking stick/pole that is collapsable and I can adjust the height I take with me just in case.

There have been times I have used a wheelchair in very busy places like amusement parks, Xmas shopping in busy malls---- it is electric and I love it. It takes away all my worries about falling, getting bumped, and the fatigue as well. For me if it came to it I would rather have no vestibular function at all and use an electric chair when I had to than have vertigo and bad function. I remember those days of bad function and vertigo--- they were awful!
Life is getting better for me all the time. I now have control over my future with vertigo and dizziness I was basically homebound.

 
Old 01-17-2012, 03:10 AM   #44
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Re: Bilateral hypofunction

Manybikes and Uga,

The day after my last post I had another vertigo/spinning episode. It was the 4th or 5th I had in the past 12 months. Horrible. I actually had my shopping trolley with me and I had to stand against the wall of a shop, holding on to the trolley for a while. I was alone and had tears rolling down my face. I did not know how/when I would be able to get back home and when the world would stop moving. I have been feeling like having a "hangover" since then. Extremely tired and more off balance (more sensitive to visual stimulation) than usual. And not doing very well emotionally. I am almost 38, had a wonderful job and career and a very active life and lots of plans. I am housebond most of the time now, I do get "better" days sometimes, but I am still not at the point of being able to work or even make simple plans like travelling for a few days. Every daily task can still be a challenge on "bad days".

I have read from some of you that seems like it would be better if I lost my function completely. Acording to my last tests, I have lost one side, but still have 30% left on my right side,which is obvioulsy malfunctioning. I talked to two of my specialists (who are 2 of the top specialists here in Europe and from 2 different countries) and both think it is better to have some function left than none at all. They say that the oscillopsia and the problems in the dark and uneven surfaces you get from a total bilateral loss would be much more difficult to deal with and that if the 30% I have left remains stable then I have a bigger chance of a better recovery. Right..but does not seem that it is getting any stable, since 8 months before my last tests I had about 30% vestib function on both sides and now I have lost one side completely and besides, I am having several vertigo episodes, which seem to indicate that I am losing more and more... But of course, I cannot force my doctors to "kill" my right side, so I just have to wait and hope that either my function remains stable or that I end up losing it sometime... But in the meantime, I am just finding it hard to cope with it all. I try to keep myself as active as I can, to do my exercices, but I am still not feeling like I am actually improving, as sooner or later I seem to have another vertigo episode that affects me and my symptoms all over again... I feel like I spend all my time hoping and working towards a recovery, but that I really have no control over it and that sooner or later, I get hit by another vertigo episode and have to start all over again...its exhausting. both physical and emotionally.

Anyway Manybikes and Uga, I am sorry for all the rambling and thank for listening and for being such an inspiration. Do you think I should still keep on doing my VRT exercices and pushing myself everyday even though my situation is clarly unstable and I end up having to "relearn" things over and over again? I am just wondering if there is any point, if I am still losing my vestibular function and I cannot adapt to something that is going to change... (if you know what I mean - sorry if I cannot express myself very well sometimes in English!).

Can you remember how you both dealt with the phase while you were still losing the vestibular function? Any advice on how I can cope with it??

I really hope and I am sure you will both improve even more each day! And Uga, I think it is great that you found a way to still move around and avoid falls. If it works for you and it allows you to have a more "normal" life, then I think it is the right thing to do! I though about it, but my visual symptoms are too intense sometimes anyway, so even with some support or even when I am sitting down, I can still go through hell with all the visual issues, so I do need to stay away sometimes from any form of (visual) movement..(

Thank you again for your support

 
Old 01-20-2012, 03:13 PM   #45
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Re: Bilateral hypofunction

Quote:
Originally Posted by dizzym2010 View Post
Manybikes and Uga,

The day after my last post I had another vertigo/spinning episode. It was the 4th or 5th I had in the past 12 months. Horrible. I actually had my shopping trolley with me and I had to stand against the wall of a shop, holding on to the trolley for a while. I was alone and had tears rolling down my face. I did not know how/when I would be able to get back home and when the world would stop moving. I have been feeling like having a "hangover" since then. Extremely tired and more off balance (more sensitive to visual stimulation) than usual. And not doing very well emotionally. I am almost 38, had a wonderful job and career and a very active life and lots of plans. I am housebond most of the time now, I do get "better" days sometimes, but I am still not at the point of being able to work or even make simple plans like travelling for a few days. Every daily task can still be a challenge on "bad days".

I have read from some of you that seems like it would be better if I lost my function completely. Acording to my last tests, I have lost one side, but still have 30% left on my right side,which is obvioulsy malfunctioning. I talked to two of my specialists (who are 2 of the top specialists here in Europe and from 2 different countries) and both think it is better to have some function left than none at all. They say that the oscillopsia and the problems in the dark and uneven surfaces you get from a total bilateral loss would be much more difficult to deal with and that if the 30% I have left remains stable then I have a bigger chance of a better recovery. Right..but does not seem that it is getting any stable, since 8 months before my last tests I had about 30% vestib function on both sides and now I have lost one side completely and besides, I am having several vertigo episodes, which seem to indicate that I am losing more and more... But of course, I cannot force my doctors to "kill" my right side, so I just have to wait and hope that either my function remains stable or that I end up losing it sometime... But in the meantime, I am just finding it hard to cope with it all. I try to keep myself as active as I can, to do my exercices, but I am still not feeling like I am actually improving, as sooner or later I seem to have another vertigo episode that affects me and my symptoms all over again... I feel like I spend all my time hoping and working towards a recovery, but that I really have no control over it and that sooner or later, I get hit by another vertigo episode and have to start all over again...its exhausting. both physical and emotionally.

Anyway Manybikes and Uga, I am sorry for all the rambling and thank for listening and for being such an inspiration. Do you think I should still keep on doing my VRT exercices and pushing myself everyday even though my situation is clarly unstable and I end up having to "relearn" things over and over again? I am just wondering if there is any point, if I am still losing my vestibular function and I cannot adapt to something that is going to change... (if you know what I mean - sorry if I cannot express myself very well sometimes in English!).

Can you remember how you both dealt with the phase while you were still losing the vestibular function? Any advice on how I can cope with it??

I really hope and I am sure you will both improve even more each day! And Uga, I think it is great that you found a way to still move around and avoid falls. If it works for you and it allows you to have a more "normal" life, then I think it is the right thing to do! I though about it, but my visual symptoms are too intense sometimes anyway, so even with some support or even when I am sitting down, I can still go through hell with all the visual issues, so I do need to stay away sometimes from any form of (visual) movement..(

Thank you again for your support
Hi DizzyM

Your Doctors are probably right. Dealing with no vestibular function is very very difficult. If your one side stabilizes, that remaining 30% can make the world of difference in your life. Despite being able to adapt to my present condition I would still love to have some remaining function.
My experience with the vertigo attacks were fairly short lived. I only suffered with them for less than a year. They would come and go but only lasted for seconds, because they would come at random with no warning there was really no way to cope other than wait it out. It is a condition that can have some mental impact on you, I understand how you feel. I suffered somewhat from anxiety during this time.
Manybikes

 
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