was just thinking about you and wanted to say thanks for the help. Things are coming along slowly, but coming along ok.
here are some of my problems, concerns and questions.
I seem to get very very very very fatigued, i am hoping the fatigue improves over time, what was your experience?
manybikes:
i have trouble with large open spaces with big crowds and lots of commotion and noise, i often have to use a wheelchair in these places, i hate to give in, but i don't want to fall as i still have problems tracking fast moving objects. I am hoping this improves over some time. There are times i feel safer in a wheelchair becauese it give me a sense of security, safety and a sort of anchor. I feel bad, but sometimes i do use one if necessary, especially at sporting events, taking my kids to the carnavil ect.........
Manybikes:
i do the vrt for my bouncy vision, oscillopsia: how long before you started to see improvement in the oscillopsia? Does it still bother you? Can you read fine print or magazines such as sports illustrated and those type of things?
Daylight, not too bad, i could not imagine driving in the dark. Anything in the dark is tough.
manybikes: did the shower ever give you problems, closing your eyes and getting the soap out of the hair ect......... Can you close your eyes in such places or did you just learn to do it all with eyes open. It seems when i close my eyes i am very prove to falling.
thanks sooooooo much manybikes, you have helped me more than you will ever know.
uga
Hi Uga...good to hear from you!
The fatigue is normal..your brain is working twice as hard now because it has taken on the additional duty of full time balance control..this is mentally fatiguing. The muscles in your body are also now working harder because they no longer have the automatic messages from the inner ears to twitch just right to keep balance. As you progress this feeling of constant fatigue does diminish considerably, I still will get tired out a little sooner than others depending on what I am doing. For example, if I am on a motorcycle trip and do a 400 mile day, I am pretty bagged by early evening. I have ridden with others my own age and they have a bit more energy after such a ride but not by a whole bunch.
The oscillopsia can be a bit of a wild card, mine would come and go at different levels of severity for the first couple of years, after that it just started to constantly get better. I still notice it occasionally but in general it has ceased to bother me much anymore. Yes, I can read fine print provided I wear my glasses...but this is due to eyesight not oscillopsia, so I am pretty much normal in that respect. I know how you feel, oscillopsia is just an outright bugger to deal with and it is annoying beyond what you can describe to someone, but it does diminish and pretty much disappears altogether in time. Just another one of those brain re-training things.
Yep, I am familiar with the whole shower deal. Yes, initially having a shower I would have to sometimes keep one hand on the wall and use the other to shampoo etc. This was pretty short lived (less than a year). Once I started to get more confident I was able to shampoo and rinse with my eyes closed. Now I make it a daily ritual to soap my face with my back to the shower stream and turn around keeping my eyes closed to rinse. Doing this does not bother me at all anymore and I have no issues at all balance wise.
Being in a crowded noisy place with low lighting like a bar can be challenging at first, even being in sporting events in open areas like you describe can also offer considerable challenge. I remember going to a concert where I had to inch along between seats (on the second tier) to get to mine...then they turned off the lights cause the band was going to start...yikes...I ended up in some women's lap (didn't spill my beer) although she was pretty good looking it was embarrassing for me and she just wrote me off as another drunk. Oh well, still enjoyed the concert !
Anyway, you will adapt to these situations but it does take time!
Hope all is well with you Uga. You are in the most difficult stages right now..you will get better!!
Hello, I realise that this thread is a few months old, but I was hoping you would still read this post..
Uga, I was wondering how you are doing?
Manybikes, I read many, many posts from you and your story is indeed an inspiration
I was diagnosed with BV Hypofuction about 11 years ago. It also started very suddenly with a vertigo episode and then the constant unsteadiness and all the other visual/coordination issues you know so well. I did some VRT and was perfectly normal for several years. Then I experienced a similar vertigo episode and again, the other symptoms that remained for about half a year. During that time, I did some more VRT and gradually I had my life back for another few years (I mean, no symptoms whatsoever). Unfortunately, about 2 years ago, it all came back again, but this time nothing seems to help and although I can have "good" days or even weeks, I do relapse over and over again.. I repeated the vestibular tests about a year ago and had lost about 65% on the left side and about 70% on the right one. However, 6 months later I had zero function on the left side and the same 30% left on the right one, which means that my situation is not stable. I don't know if that would have any influence on the fact that I keep on relapsing, but I am starting to think so.
Manybikes, did you get the vestibular tests done over the years to see how it developed?
Uga, I really hope you are doing better. If you have the chance, drop a line to let know how you are doing.
Thanks: I do check the thread. I have no function in either ear and in many ways I think that is better than having bad function. It is tough, but I do not get dizzy or have vertigo. My oscillopsia is starting to settle down and that is good.
I just don't have balance in either ear. I use my eyes and feet/proprioception for balance. In busy environments with lots of activity I use a cane and when I went to disneyworld this summer with the kids I did opt for an electric wheelchair/scooter. It was wonderful, I did not have to worry about fatigue, getting bumped and could just enjoy the days and nights
Dizzym: I have heard having no function in many ways is better than bad function. The only way to go is up with no function as it cannot get worse, so in that aspect I am thankful.
I do ok except on uneven surfaces and in the dark. I also put my safety first and if using a mobility device gives me more freedom and independence I use them only when needed. I push myself but I don't push myself off a cliff if you know what I mean.
Ask as many questions as you need, I always check the thread.
Many bikes is my inspiration as well. As you can see he has been my benchmark, that is where I want to get! If the ear continues to give you trouble I would prefer not to have them, I went through vertigo for about a year as my ears died, it was the worst, I prefer life now, I have control over my future, with verrigo I was helpless.
Your friend
Uga. Let me know if I can help, yes life is better today than this time last year!
Thanks: I do check the thread. I have no function in either ear and in many ways I think that is better than having bad function. It is tough, but I do not get dizzy or have vertigo. My oscillopsia is starting to settle down and that is good.
I just don't have balance in either ear. I use my eyes and feet/proprioception for balance. In busy environments with lots of activity I use a cane and when I went to disneyworld this summer with the kids I did opt for an electric wheelchair/scooter. It was wonderful, I did not have to worry about fatigue, getting bumped and could just enjoy the days and nights
Dizzym: I have heard having no function in many ways is better than bad function. The only way to go is up with no function as it cannot get worse, so in that aspect I am thankful.
I do ok except on uneven surfaces and in the dark. I also put my safety first and if using a mobility device gives me more freedom and independence I use them only when needed. I push myself but I don't push myself off a cliff if you know what I mean.
Ask as many questions as you need, I always check the thread.
Many bikes is my inspiration as well. As you can see he has been my benchmark, that is where I want to get! If the ear continues to give you trouble I would prefer not to have them, I went through vertigo for about a year as my ears died, it was the worst, I prefer life now, I have control over my future, with verrigo I was helpless.
Your friend
Uga. Let me know if I can help, yes life is better today than this time last year!
Uga,
Thank you so much for your reply and for the great news. It is really nice to hear you are feeling better and able to cope with your daily challenges.
I also have the feeling sometimes that having no function on either ears or at least a stable situation is better than having a ear sending not enough/wrong information to the brain. The vertigo episodes are extremely rare (although I had 2 this week!), I do think they happen when the ear is being damaged again, but my specialist does not think so.
I do suffer from all the symptoms you have described throughout the posts and when I "overdo" any of my "triggers" my dizziness becomes worse: basically anything that envolves too much visual (especially if combined with postural) stimulation really has a negative impact. Shops, crowds, even one to one conversations, computers, any form of physical exercice, travelling by train/car,...
So I was wondering Uga, can you work with computers for a long time? And if so, are there any tips you can give me?
Also, are you doing any form of VRT?
You said you don't have any dizziness..so how would you describe your symptoms, apart from the oscillopsia (which by itself is a very uncomfortable feeling!)? I do suffer from dizziness, like a "floating" sensation and the occasional vertigo..
Of course sitting down is always easier than standing/walking, but I do have problems even sitting down sometimes, specially if I am talking to someone..it just seems to be too much for me to deal with, I get very anxious and then I feel worse...I am lucky I can keep a normal posture/gait (I think all the years I spent dancing classical ballet and practising yoga have something to do with that) but the visual problems are just too much to cope with, so I even had to quit my job..
Thank you so much for your kind words and support. And again, I am so happy to hear you are dealing with this so well
Uga, good to hear that you are starting to feel better and that you are starting to get out and about. It will continue to get better for you.
Dizzym210, in answer to your question about inner ear testing, my situation was very similar to Uga's, it took less than a year from the time I started having troubles to finally having an ear irrigation to test my inner ear function. By the time the test was taken I had no detectable function in either ear, I have also had the spinning chair test and the results were the same...zero..nada..kaput inner ears. The cause is listed as idiopathic...they just quit working for no apparent reason.
Your case is really different, it appears your function comes and goes or is just slowly deteriorating. What course of action have the Doctors tried? do they have any idea on what is causing the decline in function?
Thanks many bikes: you are my inspiration, and have been a big help.
Dizzym:
Yes, the oscillopsia/bouncy vision is tough. I feel mine is getting better or I am just getting used to it/central compensation.
I think there is some truth to having no function vs bad/fluctuating function. With no function the brain can adapt with bad/fluctuating function the brain is always fighting and confused. I know people with menieres who just kill their ears because of bad function and vertigo. It hard to adapt to something that is always changing.
I do worry about falling and hurting myself though, especially at night or uneven surfaces. A friend of mine who lost all function uses an electric wheelchair, she broke her shoulder and arm and just decided to be safe. In many ways she may be better off than me because my brain is constantly fighting to keep me upright, the fatigue is unbelievable at times. She has the seat of her pants for balance and does not get the fatigue as I do. She gets her exercise by riding a stationary bike and walking in the treadmill at the gym, but in terms gettin around a busy city like new York where she lives, she just uses her wheelchair on the streets. ----- she is happy!
I fight through it, but there are times in places like Costco, home depot, Wal mart I take the store scooter.
To answer your question I had a harder time as I was loosing function than I do with no function. I would rather have no function han bad function giving me bad signals and vertigo.
Hi Manybikes, Nice to hear from you. Like I mentioned before I read many, many posts from you in other threads too and you are an inspiration!!
My BVL seems indeed very unstable. It all started about 11 years ago, and although I had "normal" years in between, for the past 2 years it has been really hard. I am from Europe (therefore my appologies if my English is not very good sometimes) and have seen specialists in several countries. I have done all sort of tests, including for autoimmune disorders and nothing (apart from several caloric tests who showed BVL) seems to be "wrong", so they have also concluded that the cause is idiopathic. I think in my case - for whatever reason - my function is just declining very slowly. The strange thing is that - although I have zero function in one ear and 30% left in the other - I do feel more comfortable at night and have no problems standing or walking in the dark. In fact, light (mainly fluorescent light and computer screens)/patterns/movement are my biggest triggers which worsen my symptoms. The interesting thing is that 2 of the top specialists in Europe I have seen (one of them in the Netherlands, where I now live) say that it is better to have at least a bit of vestibular function left than none, as it can help with the compensation and with zero function on both ears you can never "get rid of" of symptoms such as oscillopsia and there is a much slimmer chance you will ever get better. Maybe they should be checking this site and your posts lol
Manybikes, after I was diagnosed with BVL, 11 years ago, I did a VRT called optokinetic stimulation during 2 weeks which gave me my life back for years. Then the second time I got worse, it took me about 6 months of the same treatment to have an effect, but after that I was perfectly fine for another 5 years. Then about 2 years ago I got the spinning/vertigo episode all of the sudden (I was working at the office and they even called an ambulance as I had to lay down on the floor and could not get up) and after that the whole "unsteadiness" sensation that never went away... I did the same VRT treatment that had been succesful in the past over and over again and each time it only helped for about 1 month, then it all started again, specially everytime I tried to get back to work. Travelling, working with the computer, the lights at the office were just too much for me to cope with I think, so eventually I had to quit my job. I have now "good days", sometimes "good weeks", during which I really try to push myself and do as much as possible. But when I push myself too much or sometimes, even out of nowhere, I get really bad episodes and cannot even leave the house. It has been a very tiring and frustrating period... So listening to stories like yours really keep me motivated and hopeful that one day it will get better
Manybikes, did you/do you work with computers? And if so, how was it for you when it all started?
Uga, I am really happy to hear how much progress you have been making. I agree that the fact that my BVL is unstable makes it very hard for me to compensate. I asked my doctors about "killing" my right ear (as they do sometimes with patients with Meniere's) and all of them did not think it was a good idea, as they believe that having a bit of function left is better than nothing... But then again, they know so little about BVL and from what you tell me, I am not sure they are right.
I sooo understand your fatigue. Same here, everything just seems to take so much energy that I feel I always need a long time to recover. The other day I was having dinner with some friends and just the whole conversation at the table (you know, moving your head/talking to different people) made me feel worse and the next day I felt I had a hangover (and I did not even drink any alcohol)!
Uga, are you working at the moment?
Again, thank you both for all the information you shared, it means a lot to me!
I just thought I'd join the conversation. It is cool to find that there are others with this tormenting disorder.
I'm a 24 year old from Canada who has been diagnosed with bilateral vestibular loss last year. I've had honestly horrid episodes of rotary vertigo just about daily for the last 4 years. There were many dark and lonely days during the early years. Sometimes I didn't know how I could even go on. I worked my way to the top, from my GP, CTs and MRIs to a neurologist, to an ENT, to a couple of different hospitals to see more technical neurotologists. It took me about 2 years to finally see someone who could accurately diagnose me. When I first saw doctors in the beginning they would tell me that it was anxiety or TMJ and that I was young so I must be good to go. "You're young, you'll be alright.". I could have sworn I was having strokes and my life was circling the drain. I never let anyone tell me that it was all in my head though. Even my own family told me to give it up. I never did.
I even ended up in the ER a few times over the years, with doctors telling me I simply had BBPV and that I was overreacting. I even had a doctor laugh in my face and tell me "neurotologists" don't exist. Well, they do! It's an ENT with an extra degree in neurology. Living in a smaller town is hard because there isn't much awareness about vestibular issues.
The first 3 years we're an absolute mess. I didn't know what was going on because I was getting this horrible vertigo but I had no hearing problems or nothing noticeably wrong with my ears. Well, last year they found that I had bilateral vestibular loss and they don't know what caused it. 3 months later I went back to the same hospital for a check up and they found that my left ear is completely dead and that my right has about 10-15% left in it.
My BVL is not stable. I still get the odd horrible rotary vertigo episodes that can leave me down and out for a couple of days. Even at 10-15%, it is still possible to get vertigo I guess. The oscillopsia was also very very hard for a while but it seems to have died down some. Now days, I will suddenly feel strange and off balance and I'll move my head and bam, the oscillopsia is back momentarily.
I think my body is simply attacking my inner ears for some strange reason and will continue to do so until they are both completely done. It's been 4 years so I don't know why they would stop now. Do we know that these disorders don't spread to other parts of the body and start attacking them? I hope not.
I just recently have started to feel like perhaps the worst is over. I used to skateboard a lot and was a performer as well and now days I couldn't do either which is depressing. I still have my old friends ask me to do these activities with them but for some reason I have never had the heart to tell them what my problem is. I am somewhat embarrassed. I'm not sure why.
Anyhow, I hope we can all stay in touch because I have never met anyone else with this affliction.
Thank you so much for your reply and for the great news. It is really nice to hear you are feeling better and able to cope with your daily challenges.
I also have the feeling sometimes that having no function on either ears or at least a stable situation is better than having a ear sending not enough/wrong information to the brain. The vertigo episodes are extremely rare (although I had 2 this week!), I do think they happen when the ear is being damaged again, but my specialist does not think so.
I do suffer from all the symptoms you have described throughout the posts and when I "overdo" any of my "triggers" my dizziness becomes worse: basically anything that envolves too much visual (especially if combined with postural) stimulation really has a negative impact. Shops, crowds, even one to one conversations, computers, any form of physical exercice, travelling by train/car,...
So I was wondering Uga, can you work with computers for a long time? And if so, are there any tips you can give me?
Also, are you doing any form of VRT?
You said you don't have any dizziness..so how would you describe your symptoms, apart from the oscillopsia (which by itself is a very uncomfortable feeling!)? I do suffer from dizziness, like a "floating" sensation and the occasional vertigo..
Of course sitting down is always easier than standing/walking, but I do have problems even sitting down sometimes, specially if I am talking to someone..it just seems to be too much for me to deal with, I get very anxious and then I feel worse...I am lucky I can keep a normal posture/gait (I think all the years I spent dancing classical ballet and practising yoga have something to do with that) but the visual problems are just too much to cope with, so I even had to quit my job..
Thank you so much for your kind words and support. And again, I am so happy to hear you are dealing with this so well
Hi Dizzym2010
Computers can be hard on you. I think the hardest part is scrolling up/down. This is hard for your brain to deal with.
I used to temporarily close my eyes while scrolling or moving down. Try blinking your eyes shut when you have to scroll down, just long enough to avoid the actual moving of the screen...I hope I described this right, let me know if I didn't.
The fact you are able to keep normal posture/Gait is very good, and you are right, your dance training may be playing an important role. I trained for years in Tae Kwon Do and I believe this may have assisted in my recovery.
I still often catch myself walking with poor posture with my head down. I always try to walk head up with good posture. Also, try walking with legs close enough together so you can hear your pant cuffs hit each other as you stride. I found that initially I was walking with too wide of a stride. This is not easy at first but you will find that as your brain learns to compensate it will feel normal again.
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?
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.
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.
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
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?
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.
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!!!
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?
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?
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.
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?
