My Image Stabilisation is Turned Off. What is Oscillopsia?

I hope you have enjoyed the video. Please let me know if you have experienced this as well and how you manage your symptoms.
Link to my Gofundme for a second cochlear implant (please don't feel any obligation to donate):
gofund.me/6b07...
My Instagram: / nellefindlay

[@IsaacCruz]

I HAVE THIS ISSUE TOO! Been dizzy for last two years and when I walk my vision isn’t stable. People in my life can’t understand fully which is understandable. Glad I’m not alone.

[@user-qv3oj7iw1c]

Super vam je video❤❤😊😊

[@reganes]

It's funny how many things most people take for granted. I recently had a cholesteatoma removed, as well as a tympanoplasty, mastoidectomy, and ossiculoplasty procedure in a single surgery on my left ear. During the surgery they severed my tympanic membrane. As a result for a few weeks I couldn't wear my glasses because of the surgical scars, couldn't wear my hearing aids because they'd expanded the ear hole and until the packing was removed, and everything tasted like a combination of butter and metal. So three (hearing, sight and taste) of five (add smell and touch) normal human senses weren't working properly - I felt a right mess! I went out one day as nature intended - without glasses, hearing aids and walked to the shops to buy an energy drink in the hopes that the strong taste would overwhelm the messed up taste bud signals (spoiler alert - it didn't). Wandering around our fairly affluent neighbourhood I looked like a drunk in the middle of the day. To make matters worse I sat down on a park bench on the way home, and was so exhausted that I fell asleep. I work up to an old lady leaning over me saying something - bare in mind, I'm a 45 year old bloke, - I stood up, and tried to get closer to her, to see if I could lip read her and try to understand what she was saying, but the poor lady completely freaked out and sprinted (yes the very old lady ran as fast as she could) away from me. I felt like such a freak. Now almost a year on - I have new hearing aids (on a lease - you have to pay for them yourself in New Zealand if you happen to have been born with a hearing disability), new lighter frames/glasses, can taste a bit better, and am back riding motorcycles and doing all sorts of silly and active things. In my experience - each adjustment is tricky at first, but gets easier if you stick with it - at first it does require a lot (an inordinate amount) of focus and a lot of practise, but like a many things in life it does get easier with time and practise. I've also had 3 decent back (L5-S1) surgeries in the past fie years , and needed to learn how to walk again after one of these - I was paralysed from the waist down for about 2 weeks prior to surgery, so I am speaking from a lot of experience with rehabilitation. Hang in there - keep doing what you can, and try to extend yourself just a little bit each time, try to make each day better than the last - even in some small way, a little determination will get you a long way - it does get easier I promise! Wishing you all the very best on your journey Nelle.

[@nellefindlay]

How embarrassing! I'm lucky that due to my appearance and general vibes, nobody is scared of me, they just think I'm a harmless weirdo. Thank you for the advice and positive wishes.

[@piglet5287]

Thanks for your lovely video. Your oscillopsia is the most similar I have found to my experience. Mine started with a bout of vertigo and nystagmus in Oct 2023 that left me hospitalised for a week. It came almost out of nowhere. As well as the imbalance I noticed that my vision was shaky whenever I moved head or body, like watching a film shot on a hand-held camera. Also objects seem to jump when I'm turning my head to the left, but not to the right! Things settled a little after the initial crisis, but from about a week afterwards until now, my balance and vision have not improved despite lots of balance and gaze stabilisation exercises. The oscillopsia is most noticeable when I walk outside, and my balance is easily upset by slopes, camber changes, yawning, sneezing! I have felt seasick walking like you, and still do sometimes. Indoors, I'm most aware of the jumping when I try to read sheet music while playing violin, because movement is inevitable then - but if I sit still reading a book I have no oscillopsia. Chewing food, cleaning teeth etc. all cause jumpy vision. Apparently this indicates a loss of VOR - Vestibular Ocular Reflex - which is part of the communication between inner ear and eyes - rather than true nystagmus, where the problem is with the eyes themselves and oscillopsia occurs even when the patient is still. An eye doctor told me functioning VOR requires the eyes to react within 15 milliseconds to head/body movements, so my balance crisis seems to have disabled this reflex. I'm being treated as for Menieres disease (with betahistine), although I don't have sudden episodes - the imbalance is continuous. But my GP - I'm in England - doesn't seem interested in a firm diagnosis and I have to wait until Dec 2024 to see a specialist, unless I go private (VERY expensive). Like you I can drive, although over longer distances I tire quickly and there is a slight blurring despite my vision with glasses being 7.5/6 and 6/6 LR at a September eye test

[@nellefindlay]

Thank you for sharing your experience. I don't see a lot about this online so it's good to be reassured that I'm not the only one. :)

[@piglet5287]

@@nellefindlay sorry I don't have more practical coping strategies - I'm only just getting to grips with it all. Crossing the road does require great care because in my case the head turn r to l makes my vision swim for a moment, creating some confusion just when I don't need it 😊For me the scariest thing is that my balance seems to be getting slowly worse....just hoping that Betahistine might be causing the problem so I'm about to start reducing the dose

[@prioritaire6]

Love your answers to this amazing video. Have had issues since i had covid in april 2020. No one was really interested, and said, problems might be there for a year or so. Got an appointment though with a ear doctor, that found my vestibular nerve impossible to provoke. Rest of appointments were skipped due to landslide of covid in the winter of 2021. When i finally could have a follow up, my vor-gain, was very bad. I suppose it all started out more like vertigo, a spinning sensation, sometimes out of the blue, like at mb Menier. But now it is more like oscillopsi. Some days just a bit, other days, more or less impossible to get around. Biking is generally easier than walking, but the best element for me is water, as while swimming i have no (or very little) issue with oscillopsia.

[@piglet5287]

​@@prioritaire6sorry have had technical problems replying! A relative, a GP, recommended the Brandt- Daroff manoeuvre, which is similar to the Semont Manoeuvre, though not identical. It's really for BPPV which I don't think I have (no sudden dizziness just continuous imbalance and oscillopsia). But here's a weird thing: when I lie as for Brandt-Daroff, with head at an angle, I get slightly jumpy vision even though I'm very still. I've never had jumpy vision when keeping still before. Whether that means I should stop doing the exercise, or do it more, who knows?

[@Magenta80]

I have this too! So I’ve had the bobbing since I was a child but only when running. When my symptoms got worse I thought I’d mention it to my ent doctor he asked why I never mentioned it before? Well to be honest I thought it was normal when running. But now it’s when I walk. I’m at the stage where it’s so overwhelming and trying to adapt with work life and going out on my own. Anyway thank you for your video.

[@Helenmaryjo]

Wow Nelle, you do have a lot to deal with. But you are doing so well, I think it's marvellous and you are an inspiration. xx

[@kittywampus]

It's funny that you mention this today. I have an appointment with my doctor tomorrow to talk about vertigo. I had an attack of it prior to my cochlear, but since the implant, I feel like a bobblehead doll. I ride a motorcycle so I find myself doing similar things to compensate like you have. I can't do quick left, right, left (america) checks at intersections. I have to do it slowly, or I'll get dizzy of sick. I'm hoping that my doctor has some ideas, but I'm glad you put a name to it. Thanks, and good luck with yours.

[@reganes]

This might sound a little odd - but try dropping your eye line lower than the horizon line when you do your head checks on your bike - tilt your head down just a bit, and look a little bit lower to the ground than you think you should and look out of the side of your eyes, this will engage your peripheral vision a bit more than the centre of your field of view - if you know what I mean? This engages your scotopic vision which looks for movement, if you detect movement then look again using the middle of your vision - which will take a lot more effort, and might trigger a bit of dizziness, but this will engage your photopic vision and spatial acuity and help you to determine where the movement is. - I hope this makes sense to you. I don't have a cochlear, but I am hearing aid dependent, have glasses and also ride motorcycles. I have an HD Softail Standard and a Vespa PX200 scooter - what do you ride? Take care and keep things shiny side up! :-)

[@kittywampus]

@reganedwards-scott5996 I'm going to give that a try this morning. I have a Himalayan right now. I had the lml px150 knock-off prior to that and a Yamaha vstar fake Harley once upon a time. Keep the shiny side up ✌️

[@nellefindlay]

Wow, I love the internet. It’s amazing how someone has such a specific issue and then some random person you never met has the same experience and can give you advice. Good luck with your appointment and motorcycling. :)

[@cchambersglenn]

You are describing classic vestibular symptoms. I used to have terrible vertigo and had surgery to remove the structures in my inner ear. I was very lucky to connect with a physician that specializes in dizziness and vestibular problems. I have had vestibular physical therapy several times. Sometimes I tolerated it pretty well, other times it made me terribly sick. You are so right about becoming so tired, especially at the beginning of a hearing loss or vestibular problem. And you are also correct about pronouncing oscillopsia. The “c” is silent. Sorry this was rather rambling. I just wanted to let you know that you are not alone.

[@soufiane4256]

I have the same problem as you. All you said is loss of balance when walking. Everything moves with the movement of the eyes. I cannot turn while walking. If you turn me in any direction, I will lose my balance like a drunk. With leg pain, it gives me a reason to struggle to keep my walking straight. This happens. In the leg, the calf muscles. I walk and focus my attention on the front. I deliberately look around me and not in front of me so that I do not become more dizzy. The severity of these symptoms increases when I am anxious. Cochlear implant recipient.

[@andyyip1759]

i love your vidoes, even thought i am not a native english and i cant listen to english, but i am proud for you.

[@nellefindlay]

Hi, I'm glad you enjoy my videos. What language do you speak? I can add subtitles :)

[@andyyip1759]

@@nellefindlay my youtube has auto caption enabled , so i can understand your talks, i speak cantonese and i got hearing loss from around 10 yo, and i am now almost 50, 500hz around 80db, 1000hz and above, almost 100db, so it is greatly impact daily activities, of course cant get a good job due to hearing problem. now waiting for cochlear implant surgery next month. i am not sure if could learn english well or not after my implant activated as i am not a native english speaker. i will do implant one side only, another side, i plan to get a new hearing aid and see if it could help for understanding of speech in a better way or not. thank you so much for sharing your experience.

[@nellefindlay]

我正在用谷歌翻译写这条评论，所以我希望你能理解我。我的视频有中文字幕，但它们是自动翻译的，所以我不确定它们有多好。 祝你下个月的人工耳蜗手术顺利！适应植入物后，你没有理由不能学习英语（或任何你想学的语言）。我目前在大学学习现代语言，即使听力受损，我也应付得还不错。 从我在网上读到的内容来看，像粤语这样的声调语言对于植入人工耳蜗的人来说更难，因为很难听到音调，但英语、法语、西班牙语等欧洲语言不依赖于能够听到音调，所以对于植入人工耳蜗的用户来说，它们更容易听到，所以一段时间后你可能会发现听英语比听中文更容易！

[@kellysettle5407]

I had a sphenoid sinus infection affected my eye and ear. Damaged cranial nerve 4 and 5 which control vertical and horizontal movement and gaze stabilization as well as visual tracking and having eyes work in binocular fashion n in unison with vestibular system. I have the symptom of oscillopsia also n an orbit that goes out of alignment. Patching all or part of one eye help enormously. Prism glasses are a treatment if u find dr that understands deficits. Many academic papers on subjects that get u way btr info than most drs. I use a blind cane when I do many things so I don’t have to look down on the worse side n cud relate to every symptom u perfectly lamented. I have speech apraxia and aphasia too from the injury so I am jealous of ur fluid descriptions. I took longer to get help with vision as so many other things n a loss of all visual memory which is aphantasia that made the current loss more problematic… I am 56 n broke I say when I was as 47. U r young and I think in this wild there must be btr treatments. There r vibration technology too n I also use it tape to help with forcing different facial n ocular muscles to support eye movement. I also have my bed n chair in my room at an angle n hv tv in wall on punt I can’t move as watch tv affected but I find having it on one side at angle btr than straight on as I can find a point to fixate on in a way that is btr. Sorry not in order well but there is also taping u can do on ur classes where u obfuscate part of few. The central n side vision fight each other so taking out either side with tape or a patch or redirecting with prisms may help. Good luck from Arizona n search videos of drs explaining to help show ur family as hardest thing th is telling others why u look and act drunk with ur eyes n balance when I don’t drink. Lol.

[@mattw-cx50]

Wow I've never heard of that condition before. I'm surprised you can drive a car. Can you ride a bike? Glad to hear you're managing things alright. I really enjoy your presence and that beautiful english accent too.

[@nellefindlay]

I'd never heard of it either until I got it. I've not tried riding a bike, but my balance function isn't great so probably not. My suspicion is that I'd be fine going straight and looking ahead, but if I had to turn my head to look behind me, then I would lose my balance. I'm glad you enjoy me videos and my accent.

[@ianwindley70]

I have this as well,i struggle with it ,even when sat down writing its like my head is shaking and the travel sickness is like oh my...

[@abitvandmotovlog4237]

It was started mine 3 months ago. With insomnia 😊😊 still fighting God knows i really struggle this life

[@noahautumn7611]

Have a good one 👍

[@kellysettle5407]

Cranial nerve four and six I meant look those up.

[@noahautumn7611]

I'm sorry You still looks good and pretty. 🌾⚘️

[@piglet5287]

It would be interesting to know if you or any of the comments people have found Gaze Stabilisation exercises any use. They ought to be useful because their objective seems to be to reset the VOR system after an inner ear problem. But So far I've not noticed any improvement to my oscillopsia or balance

[@nellefindlay]

Hi, from what I've been told and my experience, they don't actually fully get rid of the oscillopsia, they just help your brain get used to it and compensate better. I still have the oscillopsia, but now I can actually walk down the street without getting motion sick which is an improvement.

[@piglet5287]

@@nellefindlay happy the exercises helped you. I'm sceptical about them myself. Both an eye hospital doctor and a staff member at Nystagmus Network said there's little evidence for their effectiveness

[@kellysettle5407]

Meneirr’s disease of inner ear can cause oscillopsia also . Research that also. All connected the eye and jaw and ear.

[@nellefindlay]

That's what they (the doctors) think I might have but it's not confirmed and there's not really much point in doing any extra tests because it wouldn't change the treatment, but that's probably what I have.

[@catmando268]

Do you have trouble with screens?

[@nellefindlay]

Not too much as long as I don't scroll anything too fast or watch a shaky video. If there is a lot of movement on the screen it does make me feel sick, but if I'm just looking at a document or something, it's fine.

[@catmando268]

@@nellefindlay Ty for replying. I have severe case of oscillopsia.