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Old 02-20-2012, 02:22 PM   #61
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Re: Bilateral hypofunction

Hi Uga,

Thank you for your message and advice!

I work in IT - my balance is not so much of a problem (i think it was all these years playing basketball and tennis) but the brain fog and vision makes it hard to concentrate. I don't feel as productive as I used to but I hear that it gets better eventually.

We have a ping pong table at work and I have scheduled a couple of games this afternoon Thanks for the advice?

How are you feeling these days?

Gregory

 
Old 02-20-2012, 02:37 PM   #62
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Re: Bilateral hypofunction

Hi Dizzy,

I'm in a similar situation to you. My balance is actually fine (that's why the VRT therapist sent me home without any treatment to follow!) - it's the visual symptoms I am having a hard time with. I don't get any vertigo attacks so I believe my situation may be stable. You are right, once the problem is stable compensation can then occur so hopefully you get there really soon!

I would love it if you could ask your doctor about the BP. To be honest I would even consider saving up and purchasing one if it is available. I will be in Europe in August and can definitely make a small detour via the Netherlands. My parents live in north eastern France so it's not so far away.

I am able to work at the moment but thinking requires more effort than usual! What about you?

Greg

 
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Old 02-20-2012, 02:47 PM   #63
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Re: Bilateral hypofunction

Thanks Manybikes - I'm looking forward to some good night sleeps and waking up feeling rested. I'm trying not to be anxious about the whole thing and to be honest your story helps me everytime I start worrying about the future.

I agree with the fact that anxiety only makes it worse. I believe it also slow/stops compensation. I also read somewhere that oscillopsia tend to get better in people who a positive outlook and internal locus of control.

I'm trying to remember this everytime I feel down or frustrated.

Greg

 
Old 02-21-2012, 04:52 AM   #64
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Re: Bilateral hypofunction

Greg:

As you can see, I started this thread I reach out to Manybikes, he is an inspiration to so many people most of whom he will never meet. When it first hit me I thought my life is over, but people kept telling me the body and brain is amazing and you will be amazed. At this point almost 2 years, my oscillopsia is not a problem and most days I do not notice it at all. The only time I notice it is when I am fatigued or very tired.

You are soooo very right---- anxiety and stress are not good for our condition. I also stay very hydrated with water and powerade/Gatorade.

If te anxiety is killing you and stress I would recommend see a counselor and possibly an anti-depressant. I was on one for a year and it helped tremendously, as I got better I went off it. The mental aspect of this disease is just as hard as the physical. You can beat both I promise you.

My visual problems/stew started to get better at the 6 month mark and by 9 months I cod tell good days were ahead.

For the visual I also use to get a coloring book and try to stay in the lines at first I could not, now I am normal. Also I used to write letters to myself and that helped, my handwriting improved as well.

Keep chanllenging your brain, eyes and proprioception, it will come.

My two best things were playing ping pong to make my eyes and brain work together as well as going to an arcade and playing the games like pin ball, centrpede, ect.... I now play wii with my kids.

I am doing great and you will too one day.

 
Old 02-21-2012, 01:26 PM   #65
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Re: Bilateral hypofunction

Hi Greg,

No problem, I will talk to the doctor about the BP. How long do you plan to stay in Europe? And would you be interested in renting or purchasing it? Anyway, I will try to talk to him this week and will let you know if you could have the possibility for you to try it, as a non resident in the Netherlands.

I think that the fact that you were playing basketball/tennis before definitely plays a role in how you can still have a good balance. I also did classical ballet for over a decade, until my late teenage years (I am 37 now) and have been doing yoga for 5 years now and I think that having that background has definetely helped with the postural issues.

Unfortunately I have not been able to work since the last "episode" started, about 2 and a half years ago. I worked as a language editor/translator, which meant spending all the time in front of a computer, reading, writing, scrolling up/down and having to switch between 3/4 languages constantly...that together with the travelling (I needed to travel 1h by train to get to the office) was just too much to deal with - My dizziness got worse and I simply could not focus/concentrate after a while..I tried to work from home, but again, it was too demanding - a few hours in front of the computer trying to concentrate, just took too much energy from me and I would get much worse again... and then of course, with all the vertigo episodes in between, I simply could not commit to my work.. This has also obvioulsy affected me psychologically (I used to be a bit of a workaholic) but I am just trying to accept that right now I can not work, but hopefully in time, things will get better and I will have a bit of my life back..I just wish my situation would become stable, because I know from my past experience (I had several "normal" years in between episodes) that I can compensate.

Have you heard of Computorized Dinamic Posturography, not as a diagnosis test, but used as Vestibular Rehabilitation Therapy? It combines both postural and visual exercices and it did wonders for me in the past. I have done it a couple of times over the past 2 years and it did work for me..until I got hit again and again by the vertigo (and therefore decompensation) attacks..

Yes, anxiety is one of the worst triggers. I don't know anyone with BVL who did not have to deal with it - I mean, with all these symptoms, who wouldn't?


Quote:
Originally Posted by greggaway View Post
Hi Dizzy,

I'm in a similar situation to you. My balance is actually fine (that's why the VRT therapist sent me home without any treatment to follow!) - it's the visual symptoms I am having a hard time with. I don't get any vertigo attacks so I believe my situation may be stable. You are right, once the problem is stable compensation can then occur so hopefully you get there really soon!

I would love it if you could ask your doctor about the BP. To be honest I would even consider saving up and purchasing one if it is available. I will be in Europe in August and can definitely make a small detour via the Netherlands. My parents live in north eastern France so it's not so far away.

I am able to work at the moment but thinking requires more effort than usual! What about you?

Greg

 
Old 02-21-2012, 01:36 PM   #66
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Re: Bilateral hypofunction

Uga,

It is so nice to hear how you keep on improving!

I am curious to hear more about your tips to deal with the vestibular/visual problems. I have actually got a wii fit balance and been doing some of its exercices. Any particular games you would recommend? I think I am going to check if there is any place here where I live where I could play ping pong. I have also heard from other people with BVL (and who have a pretty normal life now) how good those type of exercices (coordinating postural and eye movement) are.

You are an inspiration too


Quote:
Originally Posted by uga View Post
Greg:

As you can see, I started this thread I reach out to Manybikes, he is an inspiration to so many people most of whom he will never meet. When it first hit me I thought my life is over, but people kept telling me the body and brain is amazing and you will be amazed. At this point almost 2 years, my oscillopsia is not a problem and most days I do not notice it at all. The only time I notice it is when I am fatigued or very tired.

You are soooo very right---- anxiety and stress are not good for our condition. I also stay very hydrated with water and powerade/Gatorade.

If te anxiety is killing you and stress I would recommend see a counselor and possibly an anti-depressant. I was on one for a year and it helped tremendously, as I got better I went off it. The mental aspect of this disease is just as hard as the physical. You can beat both I promise you.

My visual problems/stew started to get better at the 6 month mark and by 9 months I cod tell good days were ahead.

For the visual I also use to get a coloring book and try to stay in the lines at first I could not, now I am normal. Also I used to write letters to myself and that helped, my handwriting improved as well.

Keep chanllenging your brain, eyes and proprioception, it will come.

My two best things were playing ping pong to make my eyes and brain work together as well as going to an arcade and playing the games like pin ball, centrpede, ect.... I now play wii with my kids.

I am doing great and you will too one day.

 
Old 02-21-2012, 02:40 PM   #67
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Re: Bilateral hypofunction

Quote:
Originally Posted by dizzym2010 View Post
Hi Greg,

No problem, I will talk to the doctor about the BP. How long do you plan to stay in Europe? And would you be interested in renting or purchasing it? Anyway, I will try to talk to him this week and will let you know if you could have the possibility for you to try it, as a non resident in the Netherlands.

I think that the fact that you were playing basketball/tennis before definitely plays a role in how you can still have a good balance. I also did classical ballet for over a decade, until my late teenage years (I am 37 now) and have been doing yoga for 5 years now and I think that having that background has definetely helped with the postural issues.

Unfortunately I have not been able to work since the last "episode" started, about 2 and a half years ago. I worked as a language editor/translator, which meant spending all the time in front of a computer, reading, writing, scrolling up/down and having to switch between 3/4 languages constantly...that together with the travelling (I needed to travel 1h by train to get to the office) was just too much to deal with - My dizziness got worse and I simply could not focus/concentrate after a while..I tried to work from home, but again, it was too demanding - a few hours in front of the computer trying to concentrate, just took too much energy from me and I would get much worse again... and then of course, with all the vertigo episodes in between, I simply could not commit to my work.. This has also obvioulsy affected me psychologically (I used to be a bit of a workaholic) but I am just trying to accept that right now I can not work, but hopefully in time, things will get better and I will have a bit of my life back..I just wish my situation would become stable, because I know from my past experience (I had several "normal" years in between episodes) that I can compensate.

Have you heard of Computorized Dinamic Posturography, not as a diagnosis test, but used as Vestibular Rehabilitation Therapy? It combines both postural and visual exercices and it did wonders for me in the past. I have done it a couple of times over the past 2 years and it did work for me..until I got hit again and again by the vertigo (and therefore decompensation) attacks..

Yes, anxiety is one of the worst triggers. I don't know anyone with BVL who did not have to deal with it - I mean, with all these symptoms, who wouldn't?
Hi Dizzy!

Thank you so much for your help. I would be interested in purchasing one - simply because I may not have enough time to try it. I'll be in Europe for 3 weeks -2 out of these 3 will be at a wedding. I can definitely drop by the Netherlands for a couple of days though.

I could definitely not do your job in the state I am in at the moment. The brain fog is so much that I couldn't deal with switching between languages all the time. What languages do you speak?

I'm a bit lucky that I can organise my workload if needed and some of the tasks I do don't require too much brainpower (because I have done them many times in the past). On the other hand, learning something new is quite daunting at the moment!

I'm sure things will get better for you - I think we need to stay positive because it helps us heal a lot faster. Reading about Uga's and Manybikes' progress definitely helps.

When you say you have vertigo episodes, are these so bad you can't function at all?
Also, do you get the rollercoaster dreams? I tend to have such dreams almost every night.

I have heard of CDP (I think I'm going to get tested with this in 4 weeks time) for diagnosis but not for treatment... That's interesting. I feel that Australia is lagging behind when it comes down to treating vestibular disorders.

Maybe i should just come back to Europe to get a decent treatment... In the meantime I will try ping pong and arcade games as Uga suggested.

Thanks again for all your help.

Greg

Last edited by greggaway; 02-21-2012 at 02:41 PM. Reason: spelling mistake

 
Old 02-21-2012, 02:54 PM   #68
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Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Greg:

As you can see, I started this thread I reach out to Manybikes, he is an inspiration to so many people most of whom he will never meet. When it first hit me I thought my life is over, but people kept telling me the body and brain is amazing and you will be amazed. At this point almost 2 years, my oscillopsia is not a problem and most days I do not notice it at all. The only time I notice it is when I am fatigued or very tired.

You are soooo very right---- anxiety and stress are not good for our condition. I also stay very hydrated with water and powerade/Gatorade.

If te anxiety is killing you and stress I would recommend see a counselor and possibly an anti-depressant. I was on one for a year and it helped tremendously, as I got better I went off it. The mental aspect of this disease is just as hard as the physical. You can beat both I promise you.

My visual problems/stew started to get better at the 6 month mark and by 9 months I cod tell good days were ahead.

For the visual I also use to get a coloring book and try to stay in the lines at first I could not, now I am normal. Also I used to write letters to myself and that helped, my handwriting improved as well.

Keep chanllenging your brain, eyes and proprioception, it will come.

My two best things were playing ping pong to make my eyes and brain work together as well as going to an arcade and playing the games like pin ball, centrpede, ect.... I now play wii with my kids.

I am doing great and you will too one day.
Thanks Uga!

Your story is uplifting - I will try out the handwriting, games and ping pong.

Do you still have trouble with fluorescent lighting? I find my vision gets really blurry in such environments. Does it get better?

Sorry for all the questions!

Greg

 
Old 02-21-2012, 03:08 PM   #69
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Re: Bilateral hypofunction

Quote:
Originally Posted by greggaway View Post
Thanks Uga!

Your story is uplifting - I will try out the handwriting, games and ping pong.

Do you still have trouble with fluorescent lighting? I find my vision gets really blurry in such environments. Does it get better?

Sorry for all the questions!

Greg
Hi Greg

Just thought I would jump in here. Yes, oddly enough hand writing does help, I guess it helps you focus. Fluorescent lighting did bother me a bit but not much. I found that everything seemed too dark for awhile, e.g.: even though the room was well lit I thought it wasn't.
Strange things happen to us and everyone will have something different. Some of these phenomena could be emotionally based and some physically...it is often hard to tell. When you describe them to a Doctor they will often just give you kind of blank stare and say "really?" (I'm not being critical here, there are so few of us that many Doc's don't have experience dealing with us)
Now...about colouring inside the lines...hmmm...when I was young I drove my teachers crazy cause I wouldn't stay inside the lines..or play nice

 
Old 02-21-2012, 03:41 PM   #70
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Re: Bilateral hypofunction

Quote:
Originally Posted by manybikes View Post
Hi Greg

Just thought I would jump in here. Yes, oddly enough hand writing does help, I guess it helps you focus. Fluorescent lighting did bother me a bit but not much. I found that everything seemed too dark for awhile, e.g.: even though the room was well lit I thought it wasn't.
Strange things happen to us and everyone will have something different. Some of these phenomena could be emotionally based and some physically...it is often hard to tell. When you describe them to a Doctor they will often just give you kind of blank stare and say "really?" (I'm not being critical here, there are so few of us that many Doc's don't have experience dealing with us)
Now...about colouring inside the lines...hmmm...when I was young I drove my teachers crazy cause I wouldn't stay inside the lines..or play nice
Yes! Your comment that "everything seemed too dark". I get that too!

I'll definitely try the handwriting. I remember you suggested this to Uga in the earlier posts and it seemed to have worked for him as well.

As for the colouring...well...I must admit I had trouble staying inside the line as a kid as well. I blamed it on being left handed. Never too late to learn though!

How is the weather at your end? Been on the bike lately?

ps: I lived in Canada (Toronto) for 6 months about 10 years ago and have the fondest memories of this country and its people. When I get better I'll check out BC as I definitely hope to snowboard again. Whereabouts are you?

 
Old 02-21-2012, 03:59 PM   #71
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Re: Bilateral hypofunction

Quote:
Originally Posted by greggaway View Post
Yes! Your comment that "everything seemed too dark". I get that too!

I'll definitely try the handwriting. I remember you suggested this to Uga in the earlier posts and it seemed to have worked for him as well.

As for the colouring...well...I must admit I had trouble staying inside the line as a kid as well. I blamed it on being left handed. Never too late to learn though!

How is the weather at your end? Been on the bike lately?

ps: I lived in Canada (Toronto) for 6 months about 10 years ago and have the fondest memories of this country and its people. When I get better I'll check out BC as I definitely hope to snowboard again. Whereabouts are you?
I haven't been on the bike lately due ice on roads..gravel..the usual winter stuff. Looking forward to spring! . I see no reason why you won't be able to snowboard again, and yes, BC has some great ski resorts.

Cheers

Last edited by manybikes; 02-21-2012 at 04:06 PM.

 
Old 02-22-2012, 12:15 PM   #72
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Re: Bilateral hypofunction

Hi Greg,

It would be a pleasure if I could be of any help, we know how difficult and frustrating all these BVL symptoms can be. I will contact this doctor I told you about, so hopefully later this week or next week, I will let you know what he says. He is a lovely man, very interested in conditions like ours and he even has contact with some of the people who originally developed/worked with the BP in the US.

Totally relate to what you said about learning new things - my memory is much worse in general and even my speech/writting have been affected. I find myself struggling for words often and I make spelling mistakes all the time (which for someone with a language background is even more frustrating!). I speak Portuguese (mother tongue), Spanish, English, French and some Dutch but I do find now that my brain has less flexibility to swap between languages or even to learn a new one..

It is great that you can still manage to work and hopefully with time the brainfog will disappear..I still get it often, specially if I am focused/concentrated on something for some time. Even having dinner, sitting down with friends can be a challenge - it is difficult for me to follow converstations, to turn my head left and right... at some point I just feel "off", as if I am "detached" from what is happening..do you get that too?

As for the rollercoaster dreams, never happened to me - Doesn't sound like much fun..At least I feel normal in my dreams

The vertigo episodes are hard to describe.. I feel as if I am seing images through a super sensitive hand held camera - from the slightest movement with my head/eyes, everything moves too at an amazing speed...I get the feeling as if I am about to fall (although I don't)... These sensations can last from a couple of minutes to half an hour and after I feel normal and "focused" again, it usually takes me days or even weeks to recover..during that time I feel like I have a massive hangover, extremely tired and over sensitive to any type of movement (so my oscillopsia also worsens).

How did your symptoms develop? Mine started with a severe episode like the one I described, only a hundred times worse. I was at the office, and just had to lay down on the floor for ages, with my eyes closed. Did you have a similar episode or did you develop your symptoms gradually?

The CPD as VRT is actually not available in the Netherlands, but in my home country (Portugal) and in France too, which from what I understand is one of the most advanced in vestibular rehabiliation programs in Europe. But since you will be doing it as a test soon, maybe you can check with the doctor if they work with it also as VRT. I am sure at least he would have heard about it.

I think that ping pong or arcade games are definitely great tips to help you train your brain, so good luck with it. It would definitely be too much for me at the moment, so think for the time being I will stick to my wii fit yoga




Quote:
Originally Posted by greggaway View Post
Hi Dizzy!

Thank you so much for your help. I would be interested in purchasing one - simply because I may not have enough time to try it. I'll be in Europe for 3 weeks -2 out of these 3 will be at a wedding. I can definitely drop by the Netherlands for a couple of days though.

I could definitely not do your job in the state I am in at the moment. The brain fog is so much that I couldn't deal with switching between languages all the time. What languages do you speak?

I'm a bit lucky that I can organise my workload if needed and some of the tasks I do don't require too much brainpower (because I have done them many times in the past). On the other hand, learning something new is quite daunting at the moment!

I'm sure things will get better for you - I think we need to stay positive because it helps us heal a lot faster. Reading about Uga's and Manybikes' progress definitely helps.

When you say you have vertigo episodes, are these so bad you can't function at all?
Also, do you get the rollercoaster dreams? I tend to have such dreams almost every night.

I have heard of CDP (I think I'm going to get tested with this in 4 weeks time) for diagnosis but not for treatment... That's interesting. I feel that Australia is lagging behind when it comes down to treating vestibular disorders.

Maybe i should just come back to Europe to get a decent treatment... In the meantime I will try ping pong and arcade games as Uga suggested.

Thanks again for all your help.

Greg

 
Old 02-22-2012, 04:32 PM   #73
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Re: Bilateral hypofunction

Hi Dizzy,

Again thank you for talking to your doctor for me.

Yes, I get the detached feeling too after trying to follow conversations with multiple people. I put this on the oscillopsia since we have trouble focusing with head movement it then only accentuate the dizziness. I'm hoping the VRT eye exercises will help. Are you doing them?

My symptoms developed after a bad cold. I blew my nose and developed sharp pain in my left ear. The next I went on a mountain hike and hard excruciating pain in my ear during the descent. I have been feeling off since then. The problem is that I had an operation on my right ear as a kid so I believe I had been compensating all along for unilateral loss and was living a normal life. Now that the left side is damaged and I have gone BVL I'm struggling to compensate. But I have hope. The brain is amazing and I'm sure I will adapt. And so will you.

I also noticed that France is quite ahead of the pack when it comes to VRT - I should try to organise an appointment when I'm there in August.

How do you find the Wii Fit? Does it help?

Greg

Last edited by moderator2; 02-23-2012 at 03:07 PM.

 
Old 02-23-2012, 10:25 AM   #74
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Re: Bilateral hypofunction

Hi Greg,

I agree with you, I think the brain has an amazing capacity to adapt, so I do believe that we will eventually get better And yes, I think that the wii fit does help, as I can train the postural and eye movement coordination. I actually got the tip from another person with BVL that I talked to on this site (this person also had good balance but with all the visual issues and both wiifit and BP really helped).

Last edited by moderator2; 02-23-2012 at 03:06 PM.

 
Old 02-23-2012, 04:18 PM   #75
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Re: Bilateral hypofunction

Hi dizzy,

Thank you for your message -

Thanks again for going out of your way to help me.

Today is not so good but I'm hanging in there!

Last edited by moderator2; 02-23-2012 at 05:10 PM.

 
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