Monday, August 2, 2010

Oscillopsia

People often wonder about me.  Why a perfectly 'normal' looking person doesn't work. I do look normal don't I?  However, behind that 'normality' I have a disability.  It's one that is very hard to understand when I tell you about it, so best given  by way of the video below...



The disability is bilateral Oscillopsia.  Basically, when I lost all my balance, I lost my built in 'image stabiliser'.  The video shows you what it is like for me when I walk.  If I bump into someone I know in the street, I will not recognise them until I stop and get everything in focus.  As I'm deaf, I'm not likely to recognise them by sound.

In addition to the up and down movement image stabiliser that I've lost, I also have it from side to side.  When I turn my head  say from desk to computer to type a document, that constant movement would render me seasick quite quickly.  I also have it in a forward and back movement as well, so if someone applies the brakes too often in a car, it can make me carsick.  I also get carsick on long drives even when I drive.

Any movement that is repetitive can render me unwell.  This includes everything, even simple everyday things can make me feel terrible.

I cope by breaking up my day.  I never do the same thing for too long.  I always make sure I sit down half way through and come back later to finish it.  As long as I can keep my head absolutely still, I can do things for long periods of time, but anything where movement is involved - forget it!   I have a stockpile of seasickness pills in my cabinet, but I try not to take them as they make me sleepy.  I prefer to have all my faculties working at all times.  I will only take them if I absolutely have to, at the times it is the worst.

I rarely talk about this.  I don't see it as a illness, but as a weakness.  I know I know, silly, but that's just the way I view it.  However, in my recent hospital stay, after my ankle operation and I was in plaster, and unable to put weight on my foot, the nurse that was looking after me seemed to think I was being 'too cautious' when I refused to have a shower.  The shower was a chub bath and I wouldn't use one even if I didn't have a plaster on for safety reasons.  I realised then that the only way I'm going to make people understand is to show them a little video, and what better way than to send them to my blog.

This bilateral Oscillopsia is also the reason I am fairly accident prone.  It's much easier to lose your balance when things are not stable for you, and the lack of a balance mechanism means that sometimes you don't realise you are actually falling, and by the time you do, it's too late to right yourself.

In the last 3 weeks, being on crutches after my tendon reattachment has been really trying.  I've fallen once.  But lost my balance many times, but fortunately been able to right myself by leaning on walls etc...  The biggest frustration is not being able to bend down and pick things up while balancing on one leg.  Many people take for granted that if they drop something, they can just bend down and pick it up.  Picking something up is a mission for me when I have two legs to balance on, but at the moment, to pick something up off the floor is nigh impossible.  One legged with no balance is simply dangerous.

Today, I just smashed a mug and a glass while trying to empty the dishwasher, and broken glass and crockery is all over the kitchen tiles.  I don't DARE try and pick it all up as if I do, I have a high chance of falling over and then cutting myself.  This means I have to have patience until I can jump on the first person that comes to the door, and ask for help!!

Even trying to make health providers understand why you need help is a mission.  Usually I just give up.  But being in plaster for the last 3 weeks, has made me come to realise that I do need people to understand more what it is like, and that I probably do need a bit more help than the average person who has the same operation just for simple safety reasons.

I didn't always have Oscillopsia, but over the years, it has got worse.  Websites with information about this tell me that it gets better over time, but for me it's been the opposite.  It's got worse and continues to do so.  I wonder if it goes hand in hand with the vertigo that I get as well.  But I won't go into that. Let's just understand my bilateral Oscillopsia today.  I would rather bury the rest in a hole and not talk about it ever!

If you have any questions, please feel free to comment and ask in the blog, I'm only too happy to answer them as long as I can!


 

33 comments:

Anne Marie said...

Oh my, I can understand. I had three years of vertigo problems that sometime I have days like this. Cannot hold the vision in one place, it keeps on shifting.

Fortunately I somehow rode it out, I suspect it was viral.

Thanks for sharing, it is good for people to see how it can be that bad, it is not just like feeling spinning in the head, it involves vision as well.

Robyn said...

Hi Anne-Marie,

Oscillopsia is not vertigo. Vertigo is something quite different.

Oscillopsia also doesn't come and go. It's there all the time.

Cheers
Robyn

Vivie said...

Robyn , that seems hard to live with.

Did you ever consider to get a helper dog ? it would help you in so many ways , but I don't know if you have them down under.

I have just bad balance , and I fall on my arse often enough , and ITS frustrating , I can't imagine not being able to even bend down for fear of falling over!

just for a chuckle , I managed to trip myself up y'day , on the diving board of the boat , and I ended up in the water, dressed.LOL ( I had already removed CI fortunately! )

If I was close I'd come and I'd pick up the broken mugs and help you around.Lots of hugs!

Robyn said...

Hi Vivie,

It's not hard to live with, but when you injure yourself and need to be in a plaster cast, then it gets harder.

Glad you didn't go in the drink with your CI :)

Cheers
Robyn

Jean Boutcher said...

Robyn,

I seem to recall having discussed Meniere's Disease (vertigo dizzy spells) in the 1990s on Deaf-L (now defunct). I suffered it due to the equibrium (imbalance of fluid in the left ear if I slept on the left side or when my head turned to the left side for more than five minutes during driving or conversing with someone on the left side. Results: dizzy spells. Since I had a bad auto accident from the dizzy spells from looking at the left lane on the highway, I have not been permitted to driver a car ever again for more than 25 years. Since the incident, I decided to sleep on the right side and to never turn my head to the left side ever again. True enough, I have not had dizzy spells ever since then.

My hearing aids have never caused dizzy spells as long as I avoid turning my head to the left side for more than five minutes.

Do you mean that oscillopsia has appeared recently and that you continue having occasional dizzy spells? What is the cause of oscillopsia?

Take good care of yourself.

Robyn said...

Hi Jean,

Nice to see you :) Oscillopsia is something quite different than vertigo, in the fact that it is there all the time 24/7. The vertigo is another thing entirely, and yes I still get severe incapaciting vertigo on a regular basis.

The Oscillopsia appears when your balance mechanism has been compromised. In my case my balance mechanism has been entirely obliterated, and so the Oscillopsia is a result of this.

There a number of causes which you can find on various vestibular websites.

Cheers
Robyn

Charlotte said...

I think thats what my great grandmother had, she used to shake her head sideways constantly. I can't remember what she got as I was quite young when she died. She was stubborn old coot, who was at 100, got on with her life. Sadly a fall/broken hip had ended her wonderful life.

Robyn said...

Charlotte,

If your grandmother used to shake her head sideways constantly, then I doubt she had Oscillopsia. With Oscillopsia you need to keep your head very still.

Cheers
Robyn

me said...

Robyn, thank you for posting this. I had never heard of oscillopsia until now but now if I one of my patients had this then I will understand a little. I know from being deaf that you can never understand fully until you experience it.

Charlotte said...

Thanks Robyn. I was just trying to understand the disease and what it does. And trying to work out what my GGma had.

Much thanks for clearing it up

Charlotte

Anonymous said...

Hi All - I suffer from Menieres disease (vertigo & ringing in the ear). After going through a series of treatment, I had to have gentamicin injected into the left ear to 'kill' the nerves so that they don't send a signal to the brain that I was having a vertigo. It did stop the vertigoes (only get very minor ones now), however I have developed oscillopsia. Robyn's video says it all. I have days when my vision is very shaky and others when it is not so shaky. I have been to a vestibular physio therapist who gives you various exercises to get your brain use to the movements so that it is not as distressing. Have a look at this site - www.dizzyday.com. Dr Kate Murray took me through these exercises. They do help but we have to be patient. I keep my movements to a minimum but try and exercise and shop and do all the normal things as best as I can, in the hope that the brain gets use to it and weaken the severity of the movements. I only drive short distance and have reduced my work hours. I try desperately to play a short game of golf but all the walking eventually makes me sick - easier with a cart. My dream is to be able to play a full game of golf again! Happy to have a chat. Regards - Shiva

Anonymous said...

I can't believe it. Finally, I have the reason for how I developed oscillipsia. I received IV Gentamicin during my battle with Leukemia. I always comaplined that after Chemo I never reagined my balance and always described the boucing vision adn the fatigue from that. Bumping into people and falling down at night were always just blamed on the drugs taken during cancer. No one ever told me this was FOREVER. Now I know. If anyone can tell me how to get a copy of the video showing the bouncing vision; I would luv to share it with friends and family whom say I look normal to them and they just don't undertstand. Shoot even my physical therapist that was helping me after bi-lateral hip replacement didn;t understand my complaint and told me vertigo will go away. IT IS NOT VERTIGO!
Feel free to email me at tdrennie@surewest.net
thanks.

Donna T. said...

I had a "vertigo" spell in late September and was told it was a virus. It went away, then came back 10x worse 2 months later and has stayed with me at varying degrees for the last month. I keep trying to explain to people that it feels a little like the sound effects from the old T.V. show "The Million Dollar Man." Now I have a word to put to it: oscillopsia. I also have a 1.5 cm AVM in my right frontal lobe, so have an appointment with my neurosurgeon in a week to be sure that's not the cause. I have a weird sense of relief that I can now tell people that this imbalance (you are so right that it's NOT VERTIGO) has a name! It is hard because if you look at me sitting still, or leaning on the wall, I look completely normal, so therefore other people don't think there's anything wrong with me. Frustrating. Thank you for blogging about this!

Donna T. said...

In my comment I meant to say the T.V. show was "The SIX Million Dollar Man."

rjohnson914 said...

Hi Robyn,

I believe I have Oscillopsia. I just learned about that term last weekend, thanks to a friend.

The video you posted here is a very good example of what I 'm experiencing.

It all started with my second cochlear implant surgery a year ago this month.

Is there any treatment for Oscillopsia?

Many thanks in advance for replying.

Anonymous said...

I also suffer from oscllopsia.

I have a bilateral vestibular loss. Gaze stabilization and other forms of vestibular physiotherapy are supposed to help, but have not helped me much as I think they work better if you only have a unilateral vestibular loss.

It is a terrible problem and I feel dizzy all the time, but thing are much worse with sort of horizontal or vertical head motion.

Many years from now vestibular implants will be available, but for now, there seems to be no treatment :-(

Anonymous said...

Hi Robyn, I am doing some research on oscillopsia and came across your blog and I am curious to know how many have reported these symptoms as a result of their cochlear implants. I had simultaneous bilateral implants in June of 2011, and a series of vertigo attacks shortly afterward, about five weeks apart. Each attack reduced my balance and the last one has produced symptoms very similiar to the Oscillopsia you describe here. My VNG test came back abnormal, with no caloric response. Last week at the allergy clinic, it appears I have an allergic reaction to the silicone adhesive used in the implant.

I find the Oscillopsia most distressing. I wonder how permanent this will be and whether there is a good therapy process for it. I am normally very active but trail running is tough and bikes are a no-go and I'm not driving with the kids in the car. I have only had this condition for five months but it's been a drain!

Reading your blog I felt some reassurance I may not be alone out there. How are you coping? What do you do? I like where you said you break the day in parts, I think that's quite wise, and I will do the same myself.

Keep up the great pics!

M

Robyn said...

The last few comments happened while I was away and I found them today.

M - thanks for your post today - if you read the rest of the comments people have mentioned therapy there. I for one have done some therapy with physios, but never found it useful.

My oscillopsia will never improve as it's the balance nerve that has gone and will not grow back.

Glad you like the pics!

Cheers
Robyn

Herb B said...

Hi y'all, In 2007 I had two 'attacks'that they first diagnosed as BPPV then Menaires but finally they admitted they had no idea what was happening to me. The first 'attack' lasted three weeks with me retching every time I moved my head. Dry heaves are no fun I must say. I had hearing loss in my rt ear as well as the imbalance and sea sickness.
The second atteack lasted 4 weeks and completely obliterated ny hearing in my left ear so I was diagnosed with sensorineural deafness.
I received vestibular physiotherapy but only had modest improvement. I was encouraged to keep up with the exercises but after 6 months of no improvement I had a consulation with a surgeon who said I was probably as good as I was going to get.
I had CI surgery which has given me some semplance of hearing but it is not perfect by any description.
My oscilopsia varies between mild and extreme due to many different factors. illness, low light and fatigue are the worst. Your video is good but my symptoms are a great deal more severe at times. The world turns to Jello for me when it is severe and it is comparable to your video when it is mild.

I would love to communicate with others who have this problem. Email is best for me.

hjb1950@Telus.net

Namaste

Herb

Anonymous said...

Hi Robyn, I appreciate your post here, especially the video. My oscillopsia is a more rapid vibration in my eyesight rather than a slow bouncing up and down when I'm walking or running. Thankfully it hasn't progressed (yet) to affect my driving vision, unless the road is really rough. I mitigate my walking by buying soft-sole shoes. Hard dress shoes make it difficult to see while walking. I hardly ever run anymore, but if I do it is only on a rubber indoor track. I prefer walking at night now, when the effect is barely noticeable (pupils are dilated?).

I've been living with this for almost 10 years. I used to think it was due to a certain prescription drug or even Apartame, but now I think it stems from a car accident I had in 1995. I hit my head pretty hard on the door frame but it didn't knock me out. After that, I noticed the world started bouncing when I ran (but not when I walked). Over time, the condition began to affect my walking.

I've seen a few ENTs and had that acuity test done where you try to follow the laser with your eyes. I have a documented condition, but there's no underlying cause like a tumor (had a CAT scan and several MRIs). Doctors have shrugged and said I'll learn to live with it. It's true, your brain does compensate in some ways, but I can't shake the feeling it is slowly getting worse. I periodically scan the Internet for new information about oscillopsia, but I rarely see anything truly new.

Hang in there, Robyn. We're all in it together.

Mark, Toronto, Canada

Anonymous said...

Robyn...oh my...You are just like me. I could have written this .. minus the broken ankle.

Deb in PA

Anonymous said...

Have just been diagnosed with Oscillopsia as a result of taking Gentamicin for a bad ear infection. I did not fit the "at-risk" person for receiving this condition as I am not elderly or have a kidney condition or have taken it for a long period of time. I was told that certain people are just not able to tolerate this antibiotic. Lucky me. I am about to start my vestibular rehabilitation therapy next week and struggle if I should be driving. Very hard to be a defensive driver. Does anyone have any words of wisdom about Driving? The House Clinic in Santa Monica? Vestibular Rehab? Exercises to keep me fit not just for balance but to stay healthy? Having a hard time finding anything with Cardio?

thanks!

Dawn from OC

suerob said...

Hi, Robyn.
I've just found your blog about Oscillopsia and though I realise your original blog was a few years ago I'm guessing, from what you've said, that your own condition is the same or even worse than when you first wrote.
I wouldn't wish this on anyone but to find I'm not the only one with it is such a relief.
I had a very bad ear infection nearly four months ago (lifelong history of ear problems, bilateral deafness)and initially went through the vomiting on movement and spinning vertigo but that has passed, leaving me with balance problems (I now use sticks), what I gather is Retinal Slip (have to keep re-aligning my eyes on any given point. Exhausting) and what I had been calling a bouncy walk, which I have just discovered has the name Oscillopsia.
I found some videos on a Gentamicin site, including the one you have posted. I am a little worse than that one right now, with my vision all over the place, not just up and down. I cannot work (public library. Impossible), cannot drive (or rather haven't even attempted to, I know I wouldn't be safe)and although I try to be active find it all pretty tiring. Right now I'm sitting at my desktop pc but I've had to stop every few moments due to nausea. The screen is way too big, my eyes have to travel across it too much and I know I couldnt cope with the computers at work, let alone carry books. I have an iPad, which is small enough for most of my needs.
My hearing is also affected oddly, so that my hearing aids (which I am only allowed to wear one at a time in alternate ears on alternate days) give me external sound that seems as if it's in a tunnel and internal sound(in my head) that is loud and boomy, so when I speak it almost makes me jump. On top of that tinnitus brings its own slant on being deaf, which you probably know too well.
I, too, am a photographer (mostly nature) but have not yet got back to it properly. I need to - I think it will be one thing to keep me going during this enforced sick leave - but right now I find using a camera a bit daunting and I need to experiment more with monopod and tripod. I've tried insect macros and have found the bending over and getting close usually ends up with me heading to the ground in a flailing heap!
As for Photoshop - ah. Processing my images is a test of eyes and stomach. Again, frequent breaks are necessary.
Getting out and about is a challenge. I have discovered the bus service! Journeys can be exhausting with the constant movement but I'm determined to not be confined to the house, so I weight up the pros and cons of each journey.
Walking? Whoo-hoo. Who would have thought there are so many sloping pavenets, kerbs and uneven paths? I think I find them all. I'm just thankful the spinning vertigo is no longer with me. What I have now I can at least live with, albeit with a very affected lifestyle.
Well, I could waffle on, but much of what I've said you'll recognise, I'm sure.
All the best,
Sue

Robyn said...

Hi Sue,

I'm sorry that you are having a hard time of it. I've had it for so long now, that although you don't ever get used to it, one does adapt somehwat.

I can only use my computer providing i keep my head dead still. If I move from paper to screen (typing documents), it renders me ill quite quickly. But if I keep my head still, and even type with my eyes shut, I can manage. Fortunately I have touch typing skills second to none.

i can drive during the day, but not for long distances, and I'm not very good driving at night. i do if I have to, but I try not to.

I'm not so good at macro photography any more as like you said, you can end up on teh ground in a heap. I think it's ended up making me a lazy photographer.

Photoshop - processing - yes - frequent breaks are needed. I can only do a few at a time and sometimes an outing can take days to finish. I'm still finishing images I took a year ago, because I can't get to them for too long.

I walk - or used to before I injured my ankle - for long periods. Walking definitely helps me. Keeping fit helps the balance - strengthen those legs and core body, and things do get better!

Cheers
Robyn

Robyn said...
This comment has been removed by a blog administrator.
Anonymous said...

Hi everyone... I came back here and noticed that I've left a comment here a little while ago and forgot that I did. What has prompted me to return here is just the other day my co-worker(s) didn't seem to believe me when I said I couldn't come in to work because of my oscillopsia and fatigue both at the same time.
It's been two and a half years since oscillopsia started after my second cochlear implant surgery. Result: the same. I have to learn to accept that this oscillopsia and imbalance are staying with me. It gets worse when I'm tired or fatigued. So I sleep a lot! I always feel better after sleeping.
My email is

rjohnson914@gmail.com.

Namasté

Renée

Shawn Marie said...

I will have to come back and read these comments but I just wanted to pipe in after reading your initial post.

I have been noticing that when I read I can't keep my eyes focused on the words I'm reading. It's like the words are moving and I'm trying to keep my eyes up to speed. It sometimes feels like my eyes are rolling. When I typed in the words "vision bouncing" in Google, Oscillopsia came up right away.

I have also noticed that when I drive it's as if my eyes are like cars without shock absorbers. My vision bounces. It's terrible at night, and tonight I had an hour and a half drive that was nearly unbearable on the highway. I got off and took the back roads, where I could drive slower, and have more control. It sometimes makes me feel like I'm going to fall down, or even fall asleep at the wheel if I drive when I'm even slightly tired. Very weird.

It makes me feel nauseated at times, but not too bad. I'm wondering what kind of doctor one sees for this. Maybe you've said already, and I'll come back and read this after some sleep.

I do think I have a mild form, but when I watched that little film that is what my driving is like - maybe with slightly less bouncy jumps. It's distracting and hard to fixate my vision on the road. Ugh.

Robyn said...

You'll need to see an Ear specialist as it has everything to do with the balance nerve which is close to the auditory nerve.

Anonymous said...

I developed oscillopsia as a result of gentamicin toxicity. I was never warned this may happen and am warning everyone I know to refuse the IV drug if they are prescribed it. There are alternative and very effective antibiotics -- but they are more expensive!

Anonymous said...

Hi I also developed oscillopsia as a result of gentamicin toxicity while I was in hospital in the UK with pneumonia and pyelonephritis in 2011. I also was not warned that this could happen as a result of the gentamicin. I left hospital in a wheelchair unable to walk by myself but have recovered enough to walk short distances with a walking stick. Crossing a road by myself is very difficult.

Anonymous said...

Hi! I'm Luisa and I have meniere’s desease since my 13 years ... probably before. I'm practically deaf. Use implant in one ear and hearing aid in the other. After the implant (2 years ago) I’m diagnosed with some bilateral vestibular loss. Currently I have a constant feeling of dizziness and severe imbalance. The doctor is afraid that I became with total loss of the vestibular system and the implications that this entails. Can you tell me how it happened with you, so sudden or gradual? How soon developed osccilopsia? How is your day-to-day today? With the years is was got worse or better? What you can or can’t to do? Any advice you want to give me? Thanks in advance
If you prefer to write pintoluisa118@gmail.com

Herb B said...

There is a group of people wth Gentamiacin poisoning called Wobblers Anonymous
http://www.wobblers.com

And I found some good support there. Actually the woman who wrote the book Terra Inferma carries on a correspondence with me. She is a very bright woman and the book is a real eye opener.

I am getting worse all the time. I no longer am allowed to drive motor vehicles and because of inactivity due to cancer treatments I am an invalid at times. Truly tradgic,

Anonymous said...

My husband has had what his Neurologist calls Oscillopsia in both eyes on and off for the last 6/7 years, recently seems to be getting much worse but has had some times without any symptoms aat all. He had loss of balance in right ear by 50% and the specialist said he had permanent damage to his vestibular ocular nerve (think thats the right name. He was diagnosed with Follicular Lymphoma 3 years ago and despite 2 different types of chemo he relapsed requiring a stem cell transplant with massive doses of chemo in September 2013. Since December 2013 he has suffered Oscillopsia, which the neurologist now thinks may be caused by the Lymphoma However recent PET scans show he has no trace of lymphoma disease, but his eye problems are getting worse.

His current symptoms come and go throughout the day, but are markedly worse during the evening or when he is tired. He cannot sleep as even when his eyes are closed and he is trying to sleep, as he gets the symptoms when his eyes are closed.
Does anyone else get the symptoms when their eyes are closed or during/trying to sleep?