I have recently lost my vestibular function and am wondering does this ever get better, I am worried the oscillopsia will never improve and I will be disabled forever. The one thing I love to do is fly fish as that is my passion in life. From all te experts and senior members will I everbe able to fly fish again.
I feel so much safer in a wheelchair, especially in crowds and busy places.
My dr told me I would motive and I will never get dizzy or have vertigo again.
Yes, it does get better. The oscillopsia does subside as your brain learns to compensate. You will have periods of great improvement and periods of relapse.
Not fun but you have to continually push yourself in order to improve.
The Following User Says Thank You to manybikes For This Useful Post: uga (07-26-2011)
Yes, it does get better. The oscillopsia does subside as your brain learns to compensate. You will have periods of great improvement and periods of relapse.
Not fun but you have to continually push yourself in order to improve.
manybikes:
thank you,
do you ever have trouble in crowds or stores or does that get better as well. from your experience how long did it take for you to feel somewhat normal and able to make it through the day. does the fatigue ever go away. i know the brain is working overtime to keep me upright. i have often wondered what is better no function or bad function which gives you vertigo.
many bikes: i want to thank you from the bottom of my heart. i would like to know more about your experiences and how long it took to overcome them. Do you still have trouble or do you pretty much lead a normal life at this point. How long have you been without function and what was the recovery like. i so want my life back.
everything is much appreciated.
I went bilateral about 6 years ago, I was 50 years old....ugh!
Yes, I more or less lead a normal life now, most people including my friends really don't notice that there is anything wrong with me.
I ride my motorcycle on a regular basis and have minimal problems walking in malls and stores etc.
However, walking in very dark situations on uneven ground etc. is still not entirely easy.
The oscillopsia at first was a horror show ( I am sure you are aware of that). It does slowly get better...and I mean slowly!
I get periods where it will almost disappear and then I will relapse and it will return, but when that happens it is always mild and not as bad as when it first started.
It took a good 2-3 years before I really started feeling confident doing a lot of things I used to.
You really have to push yourself pretty hard to learn to adapt. However..always always keep your safety at the top of the list, don't start driving the freeways at night thinking you will get good at it in a week! For example, I used to slalom waterski, 3 years ago I was determined to get back into it and broke my back in the process...not smart! You must be careful! I have now switched to the Airchair for my water sports...fun stuff.
Do everything little bits at a time . It is one of those deals where it is 3 steps forward and 2 steps back.
The Following User Says Thank You to manybikes For This Useful Post: Imbo (04-21-2012)
thanks a million, your story is inspiring to know there is hope. i just want to be able to sail, flyfish and enjoy my water sports like you do.
after all these years, has your brain fog, mild confusion ect.......improved. I have been told once the brain realizes it can no longer count on the ears for balance, it will eventually clear up.
Is there anything you used to be able to do that you cannot do now. i know there will be limitations with things in the dark and uneven surfaces but all in all how do you function with 100% being a normal person. My dr. told me i would eventually get to around 80-90% normal with limitations in the dark and uneven surfaces?
After all these years do you still get the oscillopsia or has your brain compensated and now it does not even realize you have it. I have been told it will be a non issue as the months and years pass by, i will still have it, but the brain ignores it so to speak.....
I think my biggest problem is patience, i want it all to be ok in a few months and now realize it will take years.
When you were first diagnosed how long before you could drive confidently, could you lift things without falling over, how was reading ect......
You are very much appreciated, i want to thank you for responding and taking time out of your busy day to offer support and encouragement.
If i can get back to 90% over time i will be happy, i just want to fly fish again and go for a sail one day. Do you swim? My dr. told me to do anything i want, but be careful, just no scuba diving or underwater swimming, i now wear a lifejacket when in the lake just as precaution.
thanks a million, your story is inspiring to know there is hope. i just want to be able to sail, flyfish and enjoy my water sports like you do.
after all these years, has your brain fog, mild confusion ect.......improved. I have been told once the brain realizes it can no longer count on the ears for balance, it will eventually clear up.
Is there anything you used to be able to do that you cannot do now. i know there will be limitations with things in the dark and uneven surfaces but all in all how do you function with 100% being a normal person. My dr. told me i would eventually get to around 80-90% normal with limitations in the dark and uneven surfaces?
After all these years do you still get the oscillopsia or has your brain compensated and now it does not even realize you have it. I have been told it will be a non issue as the months and years pass by, i will still have it, but the brain ignores it so to speak.....
I think my biggest problem is patience, i want it all to be ok in a few months and now realize it will take years.
When you were first diagnosed how long before you could drive confidently, could you lift things without falling over, how was reading ect......
You are very much appreciated, i want to thank you for responding and taking time out of your busy day to offer support and encouragement.
If i can get back to 90% over time i will be happy, i just want to fly fish again and go for a sail one day. Do you swim? My dr. told me to do anything i want, but be careful, just no scuba diving or underwater swimming, i now wear a lifejacket when in the lake just as precaution.
thanks
manybikes.
Hey Uga:
Yes, the brain fog does go away. If I remember it took about a year and a half before it really cleared up for me. You will find that people will think you seem a little spaced out or something, this is due to the fact that you often have to concentrate on other things (like balance etc) when you are in a social setting so it gives others the impression you are not really paying attention to them. You definately won't be able to drink as much as you used to !
The only things I can no longer do is Slalom waterski, this is due to the fact that you are temporarily under water when doing a single ski deep water start and are unable to balance properly....I was getting a little too old for slalom anyway. Riding at night on my motorcycle is also something I only do if absolutely necessary, I can do it, but I consider it an unnecessary risk.
I do not have much trouble walking in the dark but walking in the dark across a field is a little trickier. I was recently at a outdoor party with a bon fire and when I walked away from the fire into the dark I wobbled a bit..of course..ahem..I did have a few beers!
It took about 2 years to be able to drive confidently in all conditions including night driving. Freeways and windy or rough road conditions seemed to be the hardest to overcome. Driving is no longer an issue now although I am a more cautious driver than what I used to be.
Climbing step ladders also takes a bit of practise.
I spent a fair amount of time in the gym working out on the treadmill. It is an excellent way to regain/re-learn balance skills. I also spent a lot of time on a bicycle re-learning how to ride two wheels (always wear a helmet and protective gear). Before BVF I used to do 800-1000 mile days on my motorcycle, after BVF for the first year or so a mere trip around the block was sheer terror... I'm not kidding. I now ride to work everyday and tour with very little problem.
Driving my ski boat also felt a little strange for the first year or so but I adapted quickly to that...you never have to worry about being sea sick ever again! Swimming never did bother me much, I suppose it depends on how confident you were in the water prior to BVF. I do get a quick shot of being disoriented if I dive in a pool but it really doesn't bother me much. When you think about it even normal people rely on visual clues when under water. When you scuba dive and are in murky water you have to watch your bubbles to know your orientation so your inner ears do not seem to be a factor in water. If you are a good swimmer, go to a pool and try a few lengths (make sure someone is around just in case you do have trouble)
You are lucky, sounds like you have a good doctor. Most of the doctors I went to would just shrug and say " I don't know" when I asked these types of questions.
I would say that "Yes" I am about 90% back to doing everything I used to enjoy.
Fly fishing may take a bit of practise because you are in moving water and often on a slippery uneven surface but it is definately doable. Make sure you always wear a life vest just in case.
Don't hesitate to ask questions Uga, I would be glad to help in any way.
When you were loosing function did you have vertigo? I did and I can honestly say total loss off function is better than bad function and vertigo, what do you think?
I will have to go to the gym and use the treadmill, do you feel after all these years you are still improving or do you feel you have reached a plateau?
Is there ever a time the oscillopsia still bothers you or is it pretty much a non factor now?
Thanks manybikes,
I just get impatient nd now realize this is a long gradual process that takes time and practice. I guess it is sort of like having both balance nerves cut in a way or two labyrinthdectomies only this is a natural laby.
You are a godsend, my appreciation for you is immense.
When you were loosing function did you have vertigo? I did and I can honestly say total loss off function is better than bad function and vertigo, what do you think?
I will have to go to the gym and use the treadmill, do you feel after all these years you are still improving or do you feel you have reached a plateau?
Is there ever a time the oscillopsia still bothers you or is it pretty much a non factor now?
Thanks manybikes,
I just get impatient nd now realize this is a long gradual process that takes time and practice. I guess it is sort of like having both balance nerves cut in a way or two labyrinthdectomies only this is a natural laby.
You are a godsend, my appreciation for you is immense.
Hi Uga:
Yes, when I first started losing function I would get violent but short bursts of vertigo. I agree with you, the sudden shots of vertigo while walking or driving were very hard to deal with. Some people who have Menieres will get vertigo that last for days, given the choice, what I have now is preferable. Preferably I would like to have no inner ear issues whatsoever !!
Yes, every year I still continue to improve. However, because the improvements come slowly it is often hard to tell until you look back to where you started...it is then that you realize just how far you have progressed. I do activities now that not long ago I thought were gone forever.
I can honestly say I have my life back..not perfect but good enough.
I know all too well the place that you are at right now Uga and it is real hard to deal with. Very few people can understand just how cruel our condition can be, it is an invisible affliction that is almost impossible to describe to people with functioning inner ears.
You will experience plateaus and relapses on your journey to adapt and these will cause you great frustration, I had times where I was literally brought to tears.
You may go through a period of great improvement then suddenly relapse, sometimes for weeks or months. I never have been able to figure out what factors come into play that can cause a relapse...just one of the mysteries of our very rare condition.
I now have very very mild oscillopsia, there are periods of time where it almost disappears. If I do have a relapse (very rarely now) I notice it but it is mild enough that it really doesn't bother me much. I can walk down the street and read signs and recognize faces etc. without stopping. The oscillopsia is one of the toughest effects to deal with but it does get better, much better, pretty much a non factor for me now.
I remember when I first started on the treadmill I had to hang on to the side rails and could only look straight ahead. Now I run on the treadmill and don't even think about the side rails, and I watch the TV on the wall at the same time (I can even read the running script on CNN !)
I would practise by walking on the treadmill and taking my hands off the rails. Once you master that you can progress by walking the treadmill and turning your head to look left or right. I also bought one of those half dome type balance balls, I practise standing on that while slowly turning my head back and forth without losing balance.
I still also practise putting one foot in front of the other and closing my eyes to see how long I can stand (be near a wall when you first try that one)
You will find some of these exercises pretty difficult at first but you have to hang in there and be persistant. The brain is lazy and really doesn't want to deal with all the extra work load.
You really have to push yourself to do things that no longer feel natural or comfortable but the payoff is great.
The only thing that other people notice different about me now is that my head will sometimes have a mild shake if I spend too much time looking at the computer or while trying to read small print (I do need glasses but don't like wearing them)
You are certainly welcome Uga, just let me know anyway I can help.
I have heard that about meniere's patients, vertigo for hours if not days. I hear they often just kill their ears to stop the vertigo and just go without vestibular function
Manybikes:
did you ever use walking assistance the first year or so, like a walking stick, cane, wheelchair?
I am hoping the oscillopsia settles in the comming months. How long before your fatigue lifted so you could make it through the day.
My dr told me that having no function is better thn bad function, if you have bad function/uneven function than the vertigo comes and that can be worse.
It sounds that after about 3-5 years I should relatively normal, was that your experience?thanks manybikes!!!
Do you see anyproblems bein ale to sail again one day?
Manybikes: do you still have the lightheadedness, concentration lapses or disorienttion feeling anymore?
Following fast moving objects is troublesome, does that improve as well?
I have heard that about meniere's patients, vertigo for hours if not days. I hear they often just kill their ears to stop the vertigo and just go without vestibular function
Manybikes:
did you ever use walking assistance the first year or so, like a walking stick, cane, wheelchair?
I am hoping the oscillopsia settles in the comming months. How long before your fatigue lifted so you could make it through the day.
My dr told me that having no function is better thn bad function, if you have bad function/uneven function than the vertigo comes and that can be worse.
It sounds that after about 3-5 years I should relatively normal, was that your experience?thanks manybikes!!!
Do you see anyproblems bein ale to sail again one day?
Manybikes: do you still have the lightheadedness, concentration lapses or disorienttion feeling anymore?
Following fast moving objects is troublesome, does that improve as well?
Thanks my friend!!!!
Hi Uga
No, I did not require a cane/wheelchair etc. at first. I did however stagger like a drunk in broad daylight and walking in low light conditions was horrible.
I should have actually used a cane but I was stubborn. Everyone is different Uga, so if you really need a cane etc. do not hesitate to use it. No sense falling down and hurting yourself. This is something you always have to remember, you can be easily injured so always be aware of your limitations as you start to adapt. Push yourself but always be safe and be happy with your accomplishments as they happen.
The fatigue seemed to come and go. I was always able to make it through the day but I would sometimes (depending on what I was doing) be totally bagged by early evening.
I no longer after any feelings of light headedness or disorientation but you may find that because you are concentrating on balance you may give people the impression that you are being aloof, distant or ignoring them in certain social situations. Hard to drink, stand, chat, chew gum and laugh all at the same time at a party LOL :0 But you do get over it!
Yes, you can get concentration lapses simply because you are overloading your brain, your brain is not used to doing 100% of the balance work so it takes time to re-train it.
I do not sail but I do spend a fair amount of time on the water in my ski boat. You will find that the rocking of the boat will give your head this weird kind of sloshy feeling, standing up and walking around on the boat will also take practise. Now when I am in the boat I really do not notice anything different and the weird sloshy feeling has disappeared.
Several years ago I went on a Alsakan cruise. When we were in rough seas I had absolutely no idea it was happening unless I looked outside. We were having a few drinks in our cabin with friends and I noticed the glasses on the table started to move..it was surreal because I could not feel the boat rocking (kind of hard to explain). It didn't surprise others because their inner ears were signalling the movement to them.
Fast moving objects can take time to get used to. You will find that going to a big screen action movie will really throw you off. Same with watching action on TV or your computer. Once again, you will adapt to these situations.
No, I did not require a cane/wheelchair etc. at first. I did however stagger like a drunk in broad daylight and walking in low light conditions was horrible.
I should have actually used a cane but I was stubborn. Everyone is different Uga, so if you really need a cane etc. do not hesitate to use it. No sense falling down and hurting yourself. This is something you always have to remember, you can be easily injured so always be aware of your limitations as you start to adapt. Push yourself but always be safe and be happy with your accomplishments as they happen.
The fatigue seemed to come and go. I was always able to make it through the day but I would sometimes (depending on what I was doing) be totally bagged by early evening.
I no longer after any feelings of light headedness or disorientation but you may find that because you are concentrating on balance you may give people the impression that you are being aloof, distant or ignoring them in certain social situations. Hard to drink, stand, chat, chew gum and laugh all at the same time at a party LOL :0 But you do get over it!
Yes, you can get concentration lapses simply because you are overloading your brain, your brain is not used to doing 100% of the balance work so it takes time to re-train it.
I do not sail but I do spend a fair amount of time on the water in my ski boat. You will find that the rocking of the boat will give your head this weird kind of sloshy feeling, standing up and walking around on the boat will also take practise. Now when I am in the boat I really do not notice anything different and the weird sloshy feeling has disappeared.
Several years ago I went on a Alsakan cruise. When we were in rough seas I had absolutely no idea it was happening unless I looked outside. We were having a few drinks in our cabin with friends and I noticed the glasses on the table started to move..it was surreal because I could not feel the boat rocking (kind of hard to explain). It didn't surprise others because their inner ears were signalling the movement to them.
Fast moving objects can take time to get used to. You will find that going to a big screen action movie will really throw you off. Same with watching action on TV or your computer. Once again, you will adapt to these situations.
Manybikes
thanks Manybikes!!!
I am going to start going to the gym and use the treadmill. i now realize this will be a long long road to haul, but one i can overcome with hardwork and determination.
i have read that having no vestibular function is better than having bad function that leaves people with constant vertigo in such diseases as menieres like you mentioned.
like you said be safe and celebrate the small acomplishments that will be my motto and everything will change for the better.
manybikes:
did you ever think you would have come as far as you have come, looking back on things?
from the naked eye, do you appear to have a normal gait/walk?
do you worry about being bumped in busy places? do you have trouble when walking up and down hills or stairs?
manybikes, what are your off days like now compared to the early days of having no vestibular function?
thanks,
sorry to bother you, but you have given me hope in a better tomorrow.
i appreciate everything you tell me and what to expect.
I am going to start going to the gym and use the treadmill. i now realize this will be a long long road to haul, but one i can overcome with hardwork and determination.
i have read that having no vestibular function is better than having bad function that leaves people with constant vertigo in such diseases as menieres like you mentioned.
like you said be safe and celebrate the small acomplishments that will be my motto and everything will change for the better.
manybikes:
did you ever think you would have come as far as you have come, looking back on things?
from the naked eye, do you appear to have a normal gait/walk?
do you worry about being bumped in busy places? do you have trouble when walking up and down hills or stairs?
manybikes, what are your off days like now compared to the early days of having no vestibular function?
thanks,
sorry to bother you, but you have given me hope in a better tomorrow.
i appreciate everything you tell me and what to expect.
Hi Uga
I never imagined I would be able to do the things I do now. I was told by one of my Doctors that I would never ride a motorcycle again. Believe me, there were some low points in the beginning where I really thought I would never get better.
To other people I appear perfectly normal, my gait/walk appears normal. Last week I went in for an eye exam, on my form I stated that I was BVF. The eye Doctor made a point of walking behind me on the way to the examining room. When we arrived he told me he was observing me walk and was surprised that I appeared to walk normally down the hallway, he asked me how I did it. I replied "thousands of hours of practise".
Even my wife has told me that she often forgets that there is anything wrong with me....other than my personality ! LOL
In the beginning being in crowed busy spaces with a lot of people can be very challenging, this no longer bothers me much, nor does it bother when I get jostled or bumped. Stairs and hills do not bother me but I usually use the handrail when climbing or descending stairs...which even normal people often do. I now can stop half way up a staircase and chat with someone, this used to be very hard to do.
I don't get many off days anymore, when I do it the only thing I will notice is maybe a slight increase in oscillopsia but nothing that stops me from doing whatever activity I have planned. My off days get fewer every year.
Another thing I did to challenge myself was to take a part-time job at the local golf course as a greens cutter. They use the walk behind type machines where you have to cut straight lines, every shift I end up walking about 2 miles. At first this was very challenging, now it is easy...other than having to get up at 5:00 AM !!
I replaced slalom skiing with the Airchair (you will have to google it to understand), oddly enough normal people have more trouble riding the thing than I do.
You are right Uga, it can be a long frustrating process but you do get better and you do learn to adapt.
Just out of curiosity, what caused your BVF? how old are you? how long have you been BVF?
I never imagined I would be able to do the things I do now. I was told by one of my Doctors that I would never ride a motorcycle again. Believe me, there were some low points in the beginning where I really thought I would never get better.
To other people I appear perfectly normal, my gait/walk appears normal. Last week I went in for an eye exam, on my form I stated that I was BVF. The eye Doctor made a point of walking behind me on the way to the examining room. When we arrived he told me he was observing me walk and was surprised that I appeared to walk normally down the hallway, he asked me how I did it. I replied "thousands of hours of practise".
Even my wife has told me that she often forgets that there is anything wrong with me....other than my personality ! LOL
In the beginning being in crowed busy spaces with a lot of people can be very challenging, this no longer bothers me much, nor does it bother when I get jostled or bumped. Stairs and hills do not bother me but I usually use the handrail when climbing or descending stairs...which even normal people often do. I now can stop half way up a staircase and chat with someone, this used to be very hard to do.
I don't get many off days anymore, when I do it the only thing I will notice is maybe a slight increase in oscillopsia but nothing that stops me from doing whatever activity I have planned. My off days get fewer every year.
Another thing I did to challenge myself was to take a part-time job at the local golf course as a greens cutter. They use the walk behind type machines where you have to cut straight lines, every shift I end up walking about 2 miles. At first this was very challenging, now it is easy...other than having to get up at 5:00 AM !!
I replaced slalom skiing with the Airchair (you will have to google it to understand), oddly enough normal people have more trouble riding the thing than I do.
You are right Uga, it can be a long frustrating process but you do get better and you do learn to adapt.
Just out of curiosity, what caused your BVF? how old are you? how long have you been BVF?
Cheers
Manybikes
Manybikes:
i am 38 years old and the cause of my vestibular loss is something they do not know, but think it is autoimmune or viral of some sort.
i lost my function about 3 months ago, i think looking back on it i was loosing it for about a year or two as i was just always feeling off and dizzy at times. i had several violent vertigo spells lasting a few hours and than it just went.
i would give anything not to be dizzy and have vertigo that was the absolute worst. i do not see how people with meniers cope with it. i have a friend who has meniers in both ears and he is thinking about killing off his vestibular function just to spare himself the horrific vertigo spells. his spell can last the whole day and it takes him about a week to recover. There are periods of time he cannot leave the house or even get out of bed.
you are rigth it is a crazy illness, but at least it wil not kill us. i tell myself it could be worse, there are kids dying in hospitals and such.
it is good to know that it does get better, and there is hope, i carry your story with me everyday knowing that you have a life and do pretty much what you want to do.
it will just take time and patience, that is hard for me to accept since i want it to be better in like two or three weeks and now realize it will be two or three years.
is it true that someone with no vestibular will never get dizzy again? i guess without the ears you cannot get dizzy or seasick!!
the hardest thing to do is make myself move and yet that is the very thing i need to do to retrain my brain. I guess when i am feeling horrible that is my brain and eyes fighting for balance!!
Manybikes:
can you look up these days in the clouds to see airplanes and such or do you not do that, very very hard for me?
do you jog in public or just on the treadmill?
amazing that if someone were to see you today they would not know you have no balance function in either ear, the brain is an amazing thing.
do you still need to always be aware of movement even today or does the everyday movement come naturally to you in a sense that you do no need to pay attention to what you are doing?
Are you able to multitask, have many different things going on at the same time. can you talk and drive at the same time or do you need to concentrate at all times on one thing?
Manybikes:
if you are sitting down or relaxing in bed do you feel normal? It seems the only time i feel halfway human is when i am sitting absolutely still.
As my dr. told me, anything physical is physical therapy.
Your story is very similar to mine. I think it may have taken a year or more to lose my function, the trouble is I had no idea that that was my problem. I was feeling off for quite some time and I would tell my Doctor that something was wrong, he would always tell me it was because I was getting older. I started to get short episodes of vertigo and they thought I had BPPV....not!! Anyway, both sides cratered and that's when they discovered I had suffered BVF....a little late at that point.
You are right Uga, there are others who suffer much more than we do.
You have to compare yourself with someone who has lost a leg or arm, what we have can be just as debilitating and just as hard to adapt to. The frustrating difference is the rarity of our condition and the fact that is is invisible. There are a multitude of support groups for all kinds of conditions/afflictions but as you are now finding out, trying to find someone with your handicap (or condition) that you can relate to is not so easy. If someone sees that you have a damaged or missing limb they understand and even strangers will try to help....not so for us (this is the invisible part). When I used to stagger on the street people would just regard me as a useless drunk.
I even contacted every disabled motorcycle organization I could find. There were guys riding motorcycles with a missing arm, leg, foot,eye...you name it, but no one had a clue what BVL was and had never heard of anyone riding with that condition. There was even the odd time where I would explain my condition to people and they would actually laugh...I'm serious!! People simply cannot relate to what is happening to you Uga, sad but true.
Anyway....enough feeling sorry for ourselves ! lets get on with it!
Yes, I can jog in public, a small amount of oscillopsia but no big deal. I still do most of my jogging on the treadmill only because I use it as a warm up for weight lifting etc.
Yes, your Doctor is totally correct, just everyday living tasks and doing things is therapy that helps you adapt that much faster. The bottom line here is "use it or lose it". Going out with friends, walking to the store etc. all of these activities will be absolutely frustrating, exhausting and will literally bring you to tears. The sooner you get going into regular type activity the better off you will be. And yes, the head exercises are very good, they help retrain your eyes. I still do them, not very often anymore but I still do.
Yes, I know exactly what you mean about looking at Airplanes when they fly over. I have been in aviation most of my life and when an airplane flies over I always look. At first this was no easy task, I can now stand outside on a windy day and stare into the sky to look at clouds and airplanes....(try explaining that last statement to a normal person!!)
Yes, movement now comes natural where i no longer really have to think about what I am doing. However, if the task is in the dark or requires a great deal of balance (like walking on a plank) then, yes, I do have to think about it.
Yes, I can now multi-task, when I first started driving I could not listen to the radio, chat with anyone in the vehicle and could barely turn my head for a shoulder check. I could also not drive on a windy day because the sway of the vehicle would throw me off.
None of the above is a problem for me anymore, I now drive confidently while talking, listening to music...all the old bad habits I used to have !
Yes, laying in bed was initially the only time that I would feel alright. Every morning I would wake up and pray that somehow I would be normal when I took those first few steps. The process was slow Uga, but I can now get out of bed and very rarely do I feel off.
You are much younger than I was when I went BVL so I believe your youth will put you at a great advantage for adapting.
Feel free to ask as many questions as you like Uga, I will try to help in anyway I can.
Your story is very similar to mine. I think it may have taken a year or more to lose my function, the trouble is I had no idea that that was my problem. I was feeling off for quite some time and I would tell my Doctor that something was wrong, he would always tell me it was because I was getting older. I started to get short episodes of vertigo and they thought I had BPPV....not!! Anyway, both sides cratered and that's when they discovered I had suffered BVF....a little late at that point.
You are right Uga, there are others who suffer much more than we do.
You have to compare yourself with someone who has lost a leg or arm, what we have can be just as debilitating and just as hard to adapt to. The frustrating difference is the rarity of our condition and the fact that is is invisible. There are a multitude of support groups for all kinds of conditions/afflictions but as you are now finding out, trying to find someone with your handicap (or condition) that you can relate to is not so easy. If someone sees that you have a damaged or missing limb they understand and even strangers will try to help....not so for us (this is the invisible part). When I used to stagger on the street people would just regard me as a useless drunk.
I even contacted every disabled motorcycle organization I could find. There were guys riding motorcycles with a missing arm, leg, foot,eye...you name it, but no one had a clue what BVL was and had never heard of anyone riding with that condition. There was even the odd time where I would explain my condition to people and they would actually laugh...I'm serious!! People simply cannot relate to what is happening to you Uga, sad but true.
Anyway....enough feeling sorry for ourselves ! lets get on with it!
Yes, I can jog in public, a small amount of oscillopsia but no big deal. I still do most of my jogging on the treadmill only because I use it as a warm up for weight lifting etc.
Yes, your Doctor is totally correct, just everyday living tasks and doing things is therapy that helps you adapt that much faster. The bottom line here is "use it or lose it". Going out with friends, walking to the store etc. all of these activities will be absolutely frustrating, exhausting and will literally bring you to tears. The sooner you get going into regular type activity the better off you will be. And yes, the head exercises are very good, they help retrain your eyes. I still do them, not very often anymore but I still do.
Yes, I know exactly what you mean about looking at Airplanes when they fly over. I have been in aviation most of my life and when an airplane flies over I always look. At first this was no easy task, I can now stand outside on a windy day and stare into the sky to look at clouds and airplanes....(try explaining that last statement to a normal person!!)
Yes, movement now comes natural where i no longer really have to think about what I am doing. However, if the task is in the dark or requires a great deal of balance (like walking on a plank) then, yes, I do have to think about it.
Yes, I can now multi-task, when I first started driving I could not listen to the radio, chat with anyone in the vehicle and could barely turn my head for a shoulder check. I could also not drive on a windy day because the sway of the vehicle would throw me off.
None of the above is a problem for me anymore, I now drive confidently while talking, listening to music...all the old bad habits I used to have !
Yes, laying in bed was initially the only time that I would feel alright. Every morning I would wake up and pray that somehow I would be normal when I took those first few steps. The process was slow Uga, but I can now get out of bed and very rarely do I feel off.
You are much younger than I was when I went BVL so I believe your youth will put you at a great advantage for adapting.
Feel free to ask as many questions as you like Uga, I will try to help in anyway I can.
Manybikes
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?
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?
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.
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.
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.
