I’m not dizzy I’m jiggy-blurry! Oscillopsia explained
This website name is all wrong! I’m not dizzy and I will probably never feel that sensation of dizzy again. Dizzy is not the problem anymore. I have lost my balance so walk a bit drunk like because sometimes just keeping myself upright on wonky ground is a problem, but its not dizziness…what it IS, is oscillopsia.
It seems that this is one of the hardest things for people to understand so I’d like to explain it properly and show you what it’s like.
The science lesson
The inner ear is a teeny weeny little chamber in the base of the skull. It has two main sensors. One is for hearing and the other for detecting motion.
The motion sensor part is filled with fluid which moves according to how the head moves. These movements are picked up by the hair cells on the chamber walls and converted into electrical signals. These signals are then sent via the vestibular nerve to our brain, providing information on where we are within the space. This information is essential for our muscular, skeletal and nervous systems which are then instructed on what they need to do to maintain our body’s position, and balance.
For the purposes of this lesson though, the important part is that the information from the vestibular nerve is also sent to the muscles around the eye. The information about our head position and orientation, is used by the muscles to compensate our eye movements. This allows our eyes to fix their gaze, regardless of how our head is moving. This is nature’s simple and magnificent image stabilisation system. Its called the Vestibulo-Ocular Reflex (VOR).
Oscillopsia
If we didn’t have these compensatory eye movements, then everything would be blurry and in motion because our eyes couldn’t adjust for the movements of our head and body.
This is what it’s like for me. My Vestibular-Ocular Reflex (VOR) is completely defunct. My inner ear has been damaged so badly that it doesn’t provide enough information to my brain about where my eyes should move to compensate for movement of my body.
It’s called Oscillopsia and it means the loss of the natural system of image stabilisation and therefore the inability to see things clearly whilst moving. It means that if there is any movement of the body (walking, laughing, nodding, being in a car, talking etc), my vision jumps, jiggles, blurs and moves.
The only time its not happening is if I am sitting still and not talking or nodding.
Living with Jiggy-Blurry
This video shows what vision is like WITH image stabilisation (Vestibular-Ocular Reflex) and WITHOUT (Oscillopsia). I alternate between the two.
There are more videos on my youtube page.
This is a very tiring condition (as are all balance issues) because our brains are having to work overtime to interpret where we are in space and to make sense of all the erroneous visual information our eyes are capturing.
Currently there is no way of measuring the degree of oscillopsia people experience. Some people may only experience it now and then or when their head is in certain positions. Mine is the same all the time, though it can feel particularly worse after I’ve been looking at a screen for a while or sitting in one position too long.
Causes
Damage to vestibular function can happen as a result of autoimmune disease/Menieres Disease, tumors, Meningitis and sometimes just ‘idiopathic’, meaning they have no idea why it happens. But what’s most shocking is that the most common cause (50%) of vestibular damages is Ototoxic medications. These medications such as gentamicin (all antibiotics ending -micin) and others like Aspirin, some chemotherapy drugs and non-steroid anti-inflammatory drugs, are KNOWN to damage the inner ear. Yet these drugs are widely prescribed and used in hospitals with no warning. Please avoid antibiotics ending in ‘micin’ and I will write a fuller blog soon.
When the inner ear is damaged, oscillopsia is just one problem. The rest of the body will not be receiving correct information about the persons location in space and the person will also have to deal with imbalance, unsteady gait, dizziness, vulnerability to falls, fatigue (brain having to work so much harder to balance), possible hearing loss etc and many will also report or complain of a foggy mental feeling. I’m not sure what the basis for this is. It may simply be brain-tiredness.
Treatments and solutions
All this time I thought that as my body learnt to compensate for my lack of balance, that my vision would stabilise also. So far nothing has changed though and my research this week is revealing that it very well may not. If it doesn’t improve then I will not be able to drive again which has is such a horrific thought I can’t even bare to consider. Jogging, jumping, skipping and cartwheels in the park are also unlikely experiences for me again.
Advocurenf2.org answers the question of Can Oscillopsia Be Cured?
Yes, if the vestibular problem that causes them can be cured, or if the brain can learn to adapt to the vestibular problem. This is not always possible. In cases of severe bilateral loss of vestibular function, oscillopsia may be permanent. If the vestibular problem comes and goes, the brain cannot permanently adapt, and visual problems will be present whenever vestibular symptoms are present.
Some reports suggest that with time the severity can decrease; not because the function returns but more likely because people just adapt and tolerate it. Really very little is known about it, and how to improve it.
Dizziness-and-balance.com website by Dr Hain, expert in balance disorders states that most patients do see some improvement in vestibular function (and so oscillopsia also) over the course of a few years after the initial damage, due to these mechanisms:
- Regeneration: First, there is limited evidence that the damaged vestibular hair cells in the inner ear can regenerate, although the extent to which this occurs and the degree to which they are functional is not presently clear. Birds and reptiles seem to regenerate much better than do humans. At the present writing, most experts feel that regeneration does not account for any substantial amount of recovery.
- Marginal cell recovery: Some recovery presumably occurs because marginal hair cells recover. If this occurs, it probably happens only in the first year.
- Plasticity: The brain can rewire itself to adapt to the new situation. This is a mechanism that probably occurs in all people, although with more effect and speed in younger persons.
- Substitution: Recent experimental work suggests that high frequency vestibular-ocular responses to rotation recover via a pathway that does not require vestibular input. Thus in time, oscillopsia should improve no matter how severe the vestibular deficit. Recovery of visual acuity occurs in roughly 5 weeks. Practically, performance on the “dynamic illegible ‘E’ test” seems to recover substantially in all patients after 2 or more years, although in persons with severe bilateral loss, return to completely normal is very unlikely.
That’s great news for most people. Unfortunately I’ve been told I have total bilateral loss.
The only treatment for oscillopsia is currently medication to try to sedate the eye movements, but even the scientific papers say the results are disappointing.
Things that we jiggy-blurry people hope for
A pair of camera googles! Now that I am using a walking stick I have already lost all street cred so would be wiling to wear a pair of cameras on my eyes to help me see straight and drive. Cameras all have image stabilisation inbuilt and so when I look at my camera phone when taking a video, the image is stable. Any engineers out there please make us some image stabiliser camera glasses. Take my idea, make it yours, make millions … just please give me one and make it affordable for the other jiggly-blurry people!
The other hope for myself and others with bilateral vestibular failure is the John Hopkins Foundation who are working on a vestibular implant to restore balance for people with damaged vestibular function.
What we really need is a way to regrow the hair cells. God willing we who have had ours damaged are all praying that time comes soon. Sending energy, inspiration and resources to the scientists!
The difference between Dizzy and Jiggy
So despite the name of this website, I will actually never feel dizzy ever again. You can spin me in circles 100 times and I will not feel it because my vestibular system is gone. I don’t have the sensors to tell my brain where I am in space. If I shut my eyes or lose my balance and fall, I just arrive to the floor…there is little sensation of falling. It’s a very strange experience. When my eyes are shut, I have no sense of where I am, only gravity, holding me down!
Since the vestibular attacks in February 2015, I’ve had no vertigo or spinning (which I am immensely thankful for). But what I HAVE had is this constant, possibly permanent, oscillopsia…and off course the imbalance and unsteadiness of not having a natural balance system.
But I’m not going to change the entire name of this website to ‘Healing the Jiggy-Blurries’ though I think its quite catchy and certainly is more cheery than the actual reality of it.
If you have oscillopsia for some time, please let me know whether it has got better for you over time. Has anything helped you? Are you able to drive now? What was the degree of your oscillopsia? There is so little personal information online for us to refer to so please do share.
Thank you for reading me today. Best wishes everyone x
August 23, 2015 @ 2:20 pm
Hi Candice-so sorry to hear that you have this too. I have had oscillopsia and bilateral loss since around 2007. Your video shows exactly how it is for us. The only thing that stops it for me is to lay down or have my head stable against the back of a chair or couch and not move any part of my body. I still work full time and drive-but daytime only. I don’t want to give into it, so I persevere with it. I am lucky to work in a store where the counters are close to the walls so I can hold on whenever I have to. I get brain fog, have memory loss and am exhausted by the end of the day-but am happy to have a job that I can still do. I find it hard to learn new things and concentrate on anything I am doing. I enjoyed reading your blog and will continue to do so-anything I read about our condition helps me to understand it and explain it to those who listen. Thank you!!
August 23, 2015 @ 2:55 pm
Nancy thank you for your message. I’m intrigued how you drive? Is it legal? I feel like it would be the equivalent of drunk driving.
August 23, 2015 @ 9:54 pm
I am better at driving than as a passenger-I guess holding onto the wheel, keeping my neck stiff and concentrating on the road keeps things to a minimum. I dont drive where I dont know where I am going or at night. I also have been dealing with this for 8 years + so your body does adapt to some of it.
August 24, 2015 @ 2:12 am
That really gives me some hope. Thanks Nancy!
August 23, 2015 @ 10:23 pm
I just read your piece about oscillopsia. I really like “jiggy- blurry,” which, as you say, is more accurate that “dizzy”, which, as you explain, we will never feel again. This is so hard for normal people to understand. The video with contrasting versions is excellent. I’m really loving your blog. Though i have been a wobbler since 1988 it is still deeply helpful to me to read about what you are going through, and you explain it so well. I want everyone to read it!
August 24, 2015 @ 1:47 am
Hi again, Candace. I just want to let you know that I posted your blog on my FaceBook page. I want all my friends to read it.
August 24, 2015 @ 2:11 am
Thanks Anna. I’m so pleased my blog is resonating with you. Sorry to hear you’ve been going though this for so long. We’re lucky to have the internet now to find other sufferers and support each other but it must have been tough back in the 80’s without that. I hope this blog helps the people around you to truly take the time to understand what is like for you, appreciate how amazing you are for having lived with it and give you the support you need x
August 24, 2015 @ 3:26 am
Hello. I have had Bi lateral Vestibulopathy for 11 years. My eyesight jiggles with my heartbeat. I can, however, drive. It took me 18 months to get to the point that I could. I also reposted this to Facebook. This is a very good example of what I and many others go through. Thank you
August 25, 2015 @ 12:27 am
Thank you Ronda for your feedback and your encouragement x
August 24, 2015 @ 3:54 am
Candace, I enjoyed your blog. I had gentamicin in 2013 and have not been the same since. While I am disappointed that this happened to me and took away some of my quality of life; I at the same time am very thankful that I still have a life to live. There are things I cannot do anymore but I try to focus on things I still can do. I was able to go back to work. I started slow and worked my way up to 4 days a week. I no longer need a cane to walk around so that is good. Also I am able to drive. I had divorced just before this happened and I refused to give up my independance. And best of all I am still able to scuba dive which is a passion of mine. I’m even able to travel by myself and handle my luggage as I head to the Caribbean for my diving.
I HATE oscillopsia but I will not let it get the best of me. I keep pushing myself and hope that some day my brain will not notice it so much. Keep positive!!
August 24, 2015 @ 11:12 am
Wow Debra. That’s amazing that you still do so much. I take it that the Gentamycin didn’t destroy your whole vestibular function. You must have some function left to be able to scuba dive?. I was told I can never dive again and have to be very careful swimming as I would have no concept of direction in the water. You are very inspiring and I hope I can also get to that active place again.
August 24, 2015 @ 4:24 am
Hi Candace, we have seemed to contacted this deficit about the same time. I have the same symptoms as you but i still drive also. Which is hard because i really can only look at whats in front of me, if i look at on coming traffic it causes me to spin more. I have been out of work this whole year plus last winter. Its hard because i was a semi tractor driver. I’m to old and out of shape to do manual labor. Night driving effects me to where its riskier, but the way you describe it as like driving intoxicated is exactly how i said the same to my friends,family,etc… I see a physical therapist who gives me exercises to do to try and retrain my eyes. so my advice is to see about doing the same for yourself. good luck with your health and future.
August 24, 2015 @ 11:08 am
Hi Mike yes I am also doing gaze stabilisation exercises. I’m not sure there has been any improvement but I continue to do them. Amazed to hear you and so many others are still driving. I hope you find your work soon..I think it’s a good idea to learn a new skill that you can offer from home..maybe on the computer or something. I’m going to do the same.
August 27, 2015 @ 4:44 pm
Oh wow that’s wonderful news I’m so excited for you. I will look it up online. I wonder if it works for people with vestibulopathy. Do you know?
August 24, 2015 @ 4:55 am
This is my life for the last 3 years due to gentamicin poisoning. Still cannot drive and feel as though my iq had dropped considerably. I walk best barefoot but it’s not very practical. I suffer muscle pain and strain due to my changed posture when walking which limits my ability to get around. I require obscene amounts of sleep now and get depressed because it just makes me feel lazy. I can keep the jiggly vision at bay at home but in public there is just to much going on.
August 24, 2015 @ 11:04 am
So sorry to hear your story. I also feel that the oscillopsia is hardly there at home. Going outside is always a shock to the system. Shops are really hard.
August 24, 2015 @ 6:56 pm
Thanks so much for your explanations and videos of oscillopsia. Interesting to hear you feel you are incapable of feeling dizzy. I can now go on the merry-go-round spinner things on the playground with my son and not get sick, where I used to get nauseous immediately. I need to plan a trip to the amusement park soon to ride some roller coasters! The strange thing is, though, I can still get bouts of BPPV where everything spins around me and I DO feel sick. It only lasts a minute when it happens, but it is weird that other than those times I have no dizzy sensation.
August 25, 2015 @ 12:26 am
I don’t know too much at all about BVVP Jeff but it seems as though rather than your vestibular function being damaged with BVVP, the crystals more likely ‘interfere’ with the function. That’s probably why you can still get dizzy, but also be sometimes apparently immune to dizziness. I’m not sure how fun amusements parks will be for me. Certainly my hammock doesn’t have the same feeling of relaxation as I cant feel the swing really anymore, apart from the visual swing-jiggy-blurry!
August 27, 2015 @ 4:37 pm
I have had oscillopsia for 18 months and sometimes feel like I live in a different universe from the one other people around me are living in. I recently read “The Ghost in My Brain,” by Clark Elliott, who recounts his 8-year (and ultimately successful) struggle with traumatic brain injury. Part of his recovery involved consulting with a specialized optometrist who prescribed him glasses that affect the way light enters his retina and the neural pathways it follows from there (this is a gross oversimplification). The glasses are not intended to “correct” the problem but rather gradually to retrain the brain. Thinking this approach might work for oscillopsia I found an optometrist in my area who does neuro-optometric rehab and began wearing my glasses yesterday. In just a couple days I’ve noted somewhat less jiggliness and hope that, coupled with exercises at his office, I will one day live in a non-moving universe again.
Please note that I was not damaged by gentamicin – my vestibular function is intact but just not coordinating with my visual system.
August 27, 2015 @ 4:44 pm
Oh wow that’s wonderful news I’m so excited for you. I will look it up online. I wonder if it works for people with vestibulopathy. Do you know?
August 27, 2015 @ 5:36 pm
I don’t know, Candice, but it might be worth a look-see. The optometrist that helped fix Clark Elliott is Dr. Deborah Zelinsky, mindeyeconnection.com
September 14, 2015 @ 1:12 am
Hi Candice,
I have BVD and I’ve had it for over 9 years. The weird thing is I have better days and not so good days. I always have oscillopsia, just some days are more manageable than others. I do know that stress plays a HUGE role with me. When I’m stressed my head shakes. Being cold also really effects me. I can’t control the head shaking, resulting in my vision shaking like crazy. I think mine is also idiopathic. I did have back surgery two months before I came down all the sudden with this condition. Had all the tests and was told 0 function. I work, Assistant Principal at a High School and drive. How do I do it? No choice. Time has told me that this is the new me and try to adjust. I use to be active, now I just try to get through the week. I do not wish this condition on my worse enemy. You appear normal to all on the outside, but hurting deeply on the inside, and nobody understands.
September 14, 2015 @ 11:56 am
Hi Greg, I feel your pain deeply. You’ve done so well to manage your condition. I applaud you. Every day I consider the option of just opting out of this life but we must go on. There is a gift here for us in or personal development. I’m impressed that you drive and you carry on so well with your demanding job. Wouldn’t it be nice if all of us with these issues could support each other in person, we could have a dizzy town where everyone is a Wobbler, and we could feel understood and cared for and take everything slowly! . Well at least we have the online groups. Please do check out the support groups and forums on my links page. All the best to you x
September 17, 2015 @ 7:13 pm
I was so happy to come across your blog. I facilitate a small Facebook support group for bilateral vestibular hypofunction, though I myself have only been coping with BVH for about 18 months. My oscillopsia is constant, in spite of stabilizing my body/tensing every muscle, due to the miniscule movement of breathing and my heart beat. I have noticed a decrease in my nausea and vomiting. Also, I have 3% function in my right ear (cause of BVH appears to be: left ear- Ramsay Hunt Syndrome/shingles of the inner ear/complete vestibular nerve paralysis and right ear-10 day course of intravenous vancomycin antibiotics, due to suspected meningitis, during Ramsay Hunt Syndrome/mastoiditis.)…and my minimal vestibular function does cause dizziness. I also can’t process movement that I see on tv, computer scrolling, great difficulty reading, watching my children play sports. I don’t drive (predominantly because I have small children and live in a very densely populated area) or work. My ability to focus on anything is maxed out at about one hour, given naps before and rest after 🙁 Hang in there…Hoping for improvement and knowing God has faithfully brought me through this far. Blessings as we “walk” this path together!
September 17, 2015 @ 9:26 pm
Oh Kristin that’s so unfortunate that you had the antibiotics as well as the RH syndrome/shingles. It makes me angry that those antibiotics are even manufactured for use 🙁 wonderful that you are supporting others in similar situations – its surprising, and sad, that there are enough people with these conditions in your location for you to support.
Blessings to you to Kristen. We will have to learn how to turn our trips, stumbles and sways into a funky dance 🙂 xx
August 6, 2016 @ 11:19 pm
Hi all, I am interested in this quote:
“oscillopsia … seems to recover substantially in all patients after 2 or more years, although in persons with severe bilateral loss, return to completely normal is very unlikely.”
I have bilateral loss, but I wonder what is meant by “severe”? What I mean is, if I only had my problems in ONE ear, I doubt they would be considered “severe” and I would probably make an easy recovery.
Unfortunately for me it’s a case of mild problems on both sides.
August 7, 2016 @ 1:03 am
Hi nick, when you go for testing at a neurootologist they should be able to indicate the level of damage. I have total vestibular loss which means zero left. if my eyes are closed I can barely walk. For me the oscillopsia hasn’t left me but my brain has managed to cope better. It’s almost like eventually you get used to the world always looking that way. But for you if you have it mild then I think, as the quote says, it will get better over time. It’s worse to have it in one ear as then you’d be feeling dizzy all the time. I think you have a good good chance to get back to normal. See my videos on YouTube. If I’ve got none left and can do what I do, you can do even better!
August 21, 2016 @ 10:28 am
Hello Candice, I have had Oscillopsia since my daughter was born in 1976, it took 7 years to say the right thing to the doctor for him to send me to the ENT department of the local hospital. ( I told him that the image I see when I walk down the road, moves like a jogged camera)! The ‘technician/doctor’ I saw at the hospital recognised my symptoms but put me through a few tests and suggested that it was caused by the Antibiotic I had been given for Bronchitis during my late pregnancy, I couldn’t remember what it was called, but knew I had taken one a day and that it was a dark green bomb shaped capsule. The technician named it and said it was known to cause balance problems and deafness.
I wasn’t aware until last month that this condition had a name, I have always had to explain that I loose my balance easily, can’t walk in the dark without holding on to someone, can’t glance in a shop window without wandering about as if I am drunk, and have days when I constantly feel inebriated, but I never vomit, I feel nauseous but am not sick. My symptoms sound mediocre in comparison with those I have read on this blog, and I think my brain has coped with it. I don’t hear very well now, but then I am 75 so age has contributed to that. I do drive (I learnt in my late 30’s, automatic) but not at night any more, and parking in a confined space is a nightmare. I have never had any medication for this except the original dizziness, and will inform my doctor when I next see her, incase it has any bearing on the medication I receive for an ongoing back condition.
The only reason I started to investigate ‘Oscillopsia’ was a visit from my cousin, a doctor who lives in Canada. We were discussing aging and it’s disadvantages, hearing aids in particular, when I described how I found out about this awful ‘dizziness/vertigo’ I had experienced after my daughter was born, and he knew immediately what it was, named it and said that he has it too, whether our being first cousins has any influence on the condition, susceptibility or random instance he may look into.
Thank you for all the information in this blog, I cannot tell you how it has made me feel now that I know I am among ‘friends’, and not suffering alone, I have never met anyone else who has these symptoms which was a bit odd and lonely!
Thank you x x 21st August 2016
August 22, 2016 @ 11:47 pm
I’m so sorry to hear this. I cant imagine how awful it is to go through this and not have names or information about what’s happening to you. My doctor and ENT were rubbish but I’m lucky I had the internet so at least I could find solace in research and looking for others also affected by similar issues.
I was born in 1976. That’s a long long time to have coped with this. I guess after a time, we forget what it was like to not have it.
The thing that did this to you is an antibiotic called gentamicin (or that family of drugs). This horrid drug should be banned because it destroys peoples lives. For a small percentage of people who take it, the vestibular system is destroyed. There are now thousands of people worldwide whose lives have been ruined by it. It makes me so sad that this continues to happen. People are not even getting compensated in all cases. Did you know 50% of all cases of vestibular failure are caused by drugs? There is a whole community of these people at Wobblers Anonomous (USA) (see the links page). Please do sign up there you will get a lot of support and understanding there. They are a lovely bunch.
Thank you so much for your kind words and feedback. I’m glad this blog is helping people. Please let me know if you would like to write a post about your experiences.
best wishes x
August 24, 2016 @ 3:28 pm
Hello Candice,
thank you for your reply.
After I had sent my experience to you I remembered that I had some Acupuncture treatment, one of my neighbours was a young qualified acupuncturist and after talking to her about my ‘dizzies’ , (which happened randomly), she said she could try to help reverse some of the symptoms, she said that she obviously couldn’t cure it but it was worth a try. I had a treatment every week for months, I was lucky because as a friend she only charged me a nominal fee, it could have cost a lot. Unfortunately she no longer practices locally. It as amazing!
Now whether that is the reason I function as well as I do or it is just a coincidence I can’t say, but I don’t have days where everything spins as it did, I have days where I feel disorientated (a bit drunk), but nothing like the first few episodes where I had to hang on to something to get from one place to another, which was not funny with a small baby.
I just thought that others might possibly try it, if they haven’t already.
Best wishes to everyone, Colette
September 24, 2016 @ 10:50 pm
Hi there. I’m so glad I stumbled upon this. About a year and a half ago, I started having weird problems with my vision, everything that you have described. I’ve had cat scans, MRI’s and I’ve seen specialists and I still haven’t gotten a diagnosis. Every single day, my eyes shake and it was so sudden too. I see everything moving side to side, but in rapid motion. Sometimes it’ll get go bad, that I feel overwhelmingly dizzy and I have to go to sleep, or I feel like I’m going to pass out. I’ve dealt with this for so long now and on a daily basis and I can’t believe that Doctors are stumped. I hate the thought of this being permanent. I’m a photographer and living with this and trying to do what I love, has been an incredibly hard thing for me. I also feel tons of pressure in my right ear, is that a symptom? It’s so hard to deal with this on a day to day basis. My quality of life is diminished, and I have severe anxiety and depression over it. I don’t drive, I wear sunglasses all the time, so people can’t see my eyes shake. I just feel defeated. I’m deal with this issue and nothing is getting solved or fixed or examined properly. I’ve pretty much diagnosed myself, due to the same kind of experiences all of you have been going through. I really hope there’s a cure for this, but it seems like most doctors don’t even know what it is.
December 31, 2017 @ 2:29 am
Tanya – apologies for the delay responding I just found your message in my spam folder! Please can you read my posts on medical medium. Have you had any thyroid issues in your life? It sounds like you have the same as me. The medical establishment don’t understand what’s happening but if if you have what I have it’s the Ebstein Barr virus inflaming the vagus nerve (vestibular issues) and causing inflammation and hair cell damage in the inner ear (hearing loss). By following the anti-EBV protocol I am trying to stave of any further damage and hopefully heal. Hope you will get some benefit from what I’ve written, feel free to get in touch if you need help on the protocol x
September 26, 2016 @ 12:58 am
Wow, there are people out there like me! I have vestibular nerve damage in one ear. I’m 48 and have been living with the disorder for three years. Vertigo does happen ocassionslly as part of it. My first bout of vertigo happened when I was driving on the interstate. I am still able to drive but only locally. Bridges are very difficult to cross. I do have anxiety when driving, worried I’ll have another episode of vertigo. I have not attempted the interstate since I had vertigo. Jumping into the ocean or into a pool leaves me feeling not knowing which way is up. I sent an email to apply for the Johns Hopkins study but never heard back from anyone. I called and left a message and got no response. The doctor that diagnosed me at Chapel Hill North Carolina left me feeling that I had no options and any recovery was dismal. I guess one day there will be enough of us out there that someone’s forced to find a cure. Thank you for this post!!! Most people I tell about this think I’m making it up! My only way of explaining it was to say keep your eyes open and shake your head that’s what I see standing walking driving.
September 26, 2016 @ 2:15 am
Jennifer, the only hope now is that our brains get used to it. I’m driving now. Please, you absolutely must never jump into water again, or dive. Your doctors have failed by not explaining the dangers to you. We might not find our way up again. I was told that no matter how well I seem to walk there are some things I’ll never be able to do. Swimming so far is very difficult. When I drive over a bridge I look straight down at the road and sometimes I put my hands beside my eyes to shield any peripheral vision. The hardest is the dark. I am a complete cripple in the darkness and need assistance to walk. You still have some vestibular function left in order for you to have vertigo. Maybe you can improve your brains ability to adapt to the jiggly blurries by doing more vrt. Are you doing your vrt exercises? (No nor am I!! 😉 but we should!! 🙂 X
September 26, 2016 @ 2:45 am
Candice,
I’m crying, i’m so happy to talk to somebody who understands what I’m going through. My doctor didn’t give me any advice or explain situations to be concerned abou; like swimming. I’ve done the rehab and it didn’t seem to help. I gave up. I honestly keep thinking every day I will wake up and it’s going to be gone. Do yo think the rehab works? Please, any advice is welcome!!!
September 26, 2016 @ 2:59 am
Sweetheart I know how isolating this whole thing is. Nobody sees it nor can possibly understand. You’ve done so well coping this far. Think of how much you have improved. I know you have. The vrt is very important part of training the brain to work around the jiggles. Absolutely important. Did you do it with a proper physiotherapist? Once you get your exercises you must do them few times a day every day and then as they get easier the physiotherapist should increase the challenge. There is no guarantee it will change the oscillopsia but all in all it is beneficial. I was seeing a physiotherapist monthly until early this year (starting whenever I wrote my post about it). My problem was I got lazy with the excersizes so stopped improving but I would like to start doing more to help me walk at night. I hope you can find someone near you to help as the excersizes need to be tailored to you. A neurootologist may be able to refer you.
Gentle excersizes is good to get brain used to movement. Look at one spot and try to keep your eyes on it.
I’m sorry you didn’t get the advice and support you need. I’ve lost faith with the medical system. So many gave been let down by it. Though I did manage in the end to fight through the system to get vrt, hearing therapy, psychologist and occupational therapy to help me back to work. one thing my neuro-otologist said is that most of her clients, even those with complete vestibular failure like me, go on to lead normal lives. Keep hold of that. We are getting there one day at a time. I know progress feels so slow and we all feel so alone. We are also so incredibly strong to be managing afflictions like this every day. Much love to you X
September 26, 2016 @ 3:49 am
You are so inspiring!!! I’m so sorry for you’re situation!! How do you find the strength to help others when you’re struggling ? I’m sending you a really big hug right now! Have to go to sleep. Can we talk tomorrow?
September 26, 2016 @ 11:49 am
Best wishes x
September 26, 2016 @ 6:02 pm
Yes i think our brains do get used to it and do adjust, but I know how you all feel. I’ve had the condition for 40 years since my daughter was born, (I had a powerful antibiotic before she was born because of Bronchitis), which is what caused the nerve damage. I drive, but only in daylight now, I can’t walk on rough ground, I lost my balance in the garden recently turned too quickly and went down with a wallop, I had the most spectacular bruises but nothing broken! I can’t take a walk for pleasure anymore as it just isn’t, I have to look where I am walking, which also is disorientating, so have to stop to look around at the countryside. My symptoms are nothing compared with a lot of you, I am 75 now, I still do lots of lovely things, I am still a flower arranger and arrange flowers in beautiful places. Don’t get despondent, try acupuncture, it helped me, but you need a good practitioner. Best wishes, colette.
September 26, 2016 @ 10:17 pm
In my experience, those who’ve suffered from the impacts of gentamicin or similar (antibiotics) seem to have a harder time adapting to the vestibular failure. There is no information out there at this time about why that is so. It’s great you are still doing things you enjoy
September 27, 2016 @ 9:26 am
I am amazed that so many of you are getting help, in many ways, and i am thrilled for you. when I explained to my doctor recently that I had just discovered a condition I have had for 40 years actually had a name,she looked as surprised as I was. He didn’t ask me about it or seem to know anything about it and I guess because I have adjusted to it went on to talk about my blood pressure!! i now doctors do not like to be told by their patients what they think they have but I hoped i would get more help. Love to you all .Colette
October 7, 2016 @ 4:52 am
Hi Candice and all. Just wondered if people can explain to me what driving is like for them ? What confuses me is that I can drive fine, no problems, but when I walk things bounce and move side to side, especially further in the distance. But I don’t understand how I can shake my head about when driving and things don’t move. It just happens when I walk. Any idea how that can work ? Could it mean I might not have oscillopsia ? I have not been to the docs yet about it. I keep getting waves of dizziness and the first 2 months were the worst. I feel eye-dizzy if that makes sense. The only tablet I remember having before it began bad was 1 Ibuprofen Sinus tablet, called Nurofen Sinus, but I wasn’t feeling too great before that either really. Hope all are doing well !!
October 7, 2016 @ 7:35 pm
Hi Jon, that’s great that you can see fine when you’re driving. Things always bounce for me. Sounds like you may just have a smaller degree of oscillopsia. Also if you have a very smooth running car that will help to buffer the bouncing. Candice
October 15, 2016 @ 4:02 am
Hi Candice. Thanks for the reply 🙂 Can I ask, when things bounce for you, are they clear or blurred ? I am still trying to find out if I do indeed have oscillopsia or not, because I can shake my head all over the place and things appear to stay still, but when I walk they don’t, it is all very confusing. For instance, if you looked at a poster on your wall with words on, and shook your head, would it all be blurred or could you still read the writing ? I am looking at a calendar on my wall right now, and shaking my head, and I can still read the word October fine. But I heard people with oscillopsia find their vision is blurred with head movement so they wouldn’t be able to read writing. Or maybe it can change depending on distance ? Some doctors seem to have never even heard of this, it is very confusing who to see, especially when living in a small village out of the way of cities. Thanks for all your help and sorry that you have to go through some a terrible illness.
October 15, 2016 @ 4:07 pm
Hi Jon, I’ve got total vestibular failure so even if I shake my head whilst looking at a poster seated, I can’t read the writing and it all gets blurry. It could just be different degrees of damage. I would try walking or jogging on the spot whilst looking at the same poster. Sounds like oscillopsia to me but I don’t know enough about other disorders to be able to compare.
February 25, 2017 @ 8:59 pm
This was visited upon me in October, 2016. As you all know it is a living nightmare. The ENT docs got it very fast faster my family doctor discovered she couldn’t help. However as you also know they diagnose, test, and report but can do nothing.
I have improved. I will keep working on compensation and improving
Horrible. Never heard of it.
February 26, 2017 @ 1:53 am
I’m 18 months into having severe bilateral vestibular loss, caused from a toxic medication. Nothing makes it better, I try hard every day to do more and more and every night I am nauseous, sometimes I throw up. My head pounds, but doesn’t hurt. I feel disoriented and have a hard time comprehending what other say to me, I forget more than I did before this happened. I can’t focus on reading or looking at details on things. I can not be in groups of people without something to hold me up because I get so confused, it’s like I don’t have depth perception. I’ve tried to work out and I’m able to, but at the end of the day I get physically sick. I walk everyday in my yard and have to rest afterwards, not because my body is tired, but because my head is tired. This isn’t how I imagined my life. I am unable to drive due to oscillopia. I can not go back to my job at this time. Some days are better than others. I try everyday to be optimistic and give myself tasks to do throughout the day, I am so tired every night it not like anything I’ve ever experienced it’s so hard to explain to people. I’m so glad I read this, I know I’m not alone?
February 27, 2017 @ 9:49 pm
You are going through an awful time. I know how hard it is for your condition to not be understood by people. Show them videos I have a Youtube page where I store things I find. Unfortunately the onus is on us to raise awareness. I’m wondering what help you are getting? Crucial is Vestibular Rehabilitation Training to help your brain compensate. 18 months and it doesn’t sound like you have compensated much. From what I’ve heard from discussing this with people and I am no expert, and I’m sorry to say that it does seem as though, those people who have been damaged by drugs in hospital do seem to have a bit more trouble compensating afterwards. And do join the wobblers site/facebook page. This is a site for people who have been damaged by the gentamycin type drugs and you will find lots of support and understanding there. My fingers and toes are crossed for you. x
February 28, 2017 @ 2:25 am
Thank you for your reply. I have been to the university of Michigan for my vestibular rehab and to Grand Rapids mi for rehab. They have taught me how to move so I look more normal. The oscillopia is what bothers me the most. I have joined the wobblers and haven’t found much help there. I explained my condition to them and a man came back with at me with he works 80 hours a week and drives to and from everywhere he goes, he said he doesn’t have oscillopia anymore. And told me to keep my chin up because it will go away. When? I asked all of my drs and they said it won’t because of the severity of my vestibular loss. The man I am speaking of probably had a mild to moderate case.
I went to the end of therapy and the therapist, in both place, told me that there wasn’t much more that they or anyone else could do for me. I emailed dr Tim Hain from the balance center in Chicago and he told me he would see me, but if the university of Michigan treated me he wouldn’t have any different way to help me than they did. Well thanks for listening and understanding. It’s just good to communicate with someone who knows exactly what I am going through.
Angie
December 31, 2017 @ 1:01 am
I had a mild version of this 3 years ago when I was heavily pregant and suffered a fall. It comes and goes now. But at the time I saw 12 doctors, couldnt function normally. It was terrifying.
A Chinese doctor said he could help me (a friend of my daughters). He gave me the most painful but deep accupressure massage around my head and spine. I felt better after 2 session. The tinnitus went too.
When I feel it all coming back, I go see him.
Im also trying to follow Medical Medium. I will do anything not to exlerience it. I couldnt even walk in the Autumn leaves, cough, laugh.
December 31, 2017 @ 2:09 am
That’s wonderful! Are you able to post his details? I know many people with menieres and types of vertigo or tinnitus have found relief by visiting special chiropractors who manipulate the upper cervical discs. I hope to visit one in USA soon. There are very few in UK who practice that form of manipulation.
January 29, 2018 @ 7:38 am
Wow wow wow. I’m so happy I found this. I’m almost at the one year mark of having what’s been best-guessed diagnosed as autoimmune inner ear disease. It first attacked my left ear when I was eight months pregnant. I’m now totally deaf on that side. Then six weeks post-partum it started in my right ear. We pumped me full of steroids and managed to save some of that ear but I’ve been on a high-dose of steroids ever since. If I begin to taper I have more inner ear degradation. So I’m about to be switched to immunosuppressants for the long term.
I’m a professional musician and acrobat so winding up with a disorder that profoundly effects hearing and balance feels like a tragedy of Shakespearean proportions. The hearing loss is difficult but the balance is by far more debilitating and effects my mental health wayyyy more.
It gets a little easier over time but each day has ups and downs, or good days and bad days. Funnily enough, I’ve managed to regain some of my acrobatics. I just did My first backflip today since losing my balance. But then trying to hike while the sun was in my eyes and I kept careening headlong off the path. In some ways the smaller things are harder than the acrobatics, which I’ve been doing for twenty years and is basically controlled falling and also is so disorienting anyways that I guess my body already knows how to meet that challenge.
I dove into a pool and nearly drowned because I couldn’t find my way out of it. Tried to submerge again in the ocean in only two feet of water, same thing happened. I do drive but like others not at night. I wish I felt steadier carrying my daughter. Sometimes I wobble a little bit. I often look drunk to people. If my heart is beating fast the pulsing of the world can be really aggravating.
So good to read this. It really truly is something people can’t understand. Especially the brain fog. I have a hard time getting my partner to understand that the little things, there’s just not the same amount of space in my brain anymore but It seems he just thinks I’m making excuses. I don’t think he understands how my forgetfulness can be related to my balance.
Interesting that a number of people have said this came up for them while pregnant! A clue maybe? A direction?
Ahh I feel like there is so much more to write and share. I’d love to find some of these Facebook groups people have mentioned.
January 30, 2018 @ 12:36 am
You’ve really been through the mills! So sorry. Long term immunosuppressants are the equivalent of putting the whole school in detention because one child raised her voice. Be careful and stop if you notice other symptoms. Please read the latest post on EBV and all the posts on medical medium. There you will find information on the cause. The cure will take a much longer time but if you get onto the protocol at least perhaps you won’t need the long term meds. The main thing to glean is that your immune system is not causing the problem so by suppressing it you give your body twice the challenge, but I do agree that some times we have to do anything to hold on to the hearing we have. The natural approaches take longer to work.
The body is under stress during pregnancy which is maybe why the virus kicks up a notch.
I really feel for you. You are maybe the only person whose written to me who has both severe balance and hearing loss. I’m amazed you can backflip!! I can’t even stand in the sea so I’d love to know how you did that. Did the motion not make you fall? Perhaps you still have some balance! But I’m sad to hear it’s so impossible to go under water. Could you try goggles next time maybe?
Facebook groups should be listed in the resources section. Search groups for ‘sudden hearing loss’ and also ‘wobblers’.
Perhaps you would like to write a guest blog here? we’d all like to hear your story. Just email me it if you feel like it.
Yes it’s so hard that others don’t understand. I think that’s why the online communities are so important. We can support each other. Maybe you could send him a few posts to help him understand. Sometimes it’s more believable when we’ve heard things a second time from someone else.
Sending prayers of strength and love x
April 18, 2018 @ 5:31 pm
Wow! What a post! Your article explains to a T EXACTLY what it is that I live with on a daily basis. I had a long childhood history of vertigo attacks and they suddenly stopped around 15. Unfortunately, in November of 2000, my vestibular system broke down for good. I went so far as to get a labyrinthectomy done in my left ear, which I kind of regret doing. Now I’m living with permanent oscillopsia. Over the years, my brain helped pick up the slack, but as you know, it is my constant companion. In a word, it sucks. Lately I’ve had a flare up combined with some low-grade vertigo probably due to fatigue (being a dad will do that). On the bad days, I take meclizine to take the edge off. I’m sure you know, that drug just knocks you on your butt. What I really need, I think, is an uninterrupted night of sleep. That can do wonders.
Thanks for taking the time to write out this post. I’m going to share it on my facebook so everyone has a better idea of what I live with and appreciate what I have to endure a little more and not be so disappointed if I decline invitations or have a blue day.
April 27, 2018 @ 6:23 pm
Thanks so much for your message. The Jiggly-blurries suck! I do hope you get a good nights sleep. It’s always easier to cope with these challenges when our resources are topped up well. x
April 29, 2018 @ 6:36 pm
Good evening Candice
Thank you so much for posting this!
I am very relieved to read this post as I feel so alone with this problem.
I am a 48 year old woman in the UK. I am sorry but this is lengthy!
A few years ago my GP (who is ENT trained) diagnosed me with BPPV after suffering with some dizzy episodes. These dizzy episodes only surfaced every now & again.
At the beginning of August last year (2017) I went to bed feeling well apart from a persistently painful neck of which I’d been battling with for some months & woke up feeling very unsteady & my vision was wobbly when I moved. I put it down to an off day. This continued for 2 weeks when I finally saw a different GP who was useless. I explained to the GP that I was suffering intense pain in my neck & some pain in my right ear alongside the wobbly vision & imbalance. He told me I was tired & to enjoy my holiday which was a week later!
My holiday was awful it felt like I was permanently on a moving ship & people walking towards me were blurred I couldn’t make out their features until stationary.
Here I am 9 months later & still suffering, I get a lot of headaches & Tinnitus am I am so fatigued. I manage to still work (on the Cardiac ward, administrative) at my local hospital & can still drive, however my vision is far worse as a passenger in the front than when driving! It is better when sat in the back of a car.
I have had a head and inner ear MRI which only showed up a nasal polyp, a neck MRI which showed natural degeneration, blood tests which were normal. I have spent £300 on osteopathy which didn’t help my neck but since doing physio stretches it’s improved some. I have had so many pain killers over the months that I’m surprised I have a stomach left!!
The bouncy vision remained & I have been undergoing 3 months of vestibular rehab which isn’t helping as much as we had hoped for. I have now been referred to a neurologist & my appointment isn’t until July.
In the meantime I will continue with the rehab, what else can I do?!
I am losing faith & feel so despondent, anxious, low & alone. My husband can’t see it so therefore it doesn’t exist!!
I don’t know what a neurologist can do but July can’t come quick enough for me.
Love to you all, this is such a debilitating illness! 😔
Kerry
Cheltenham
May 2, 2018 @ 12:57 pm
Dear Kerry, I’m so sorry you are having such a hard time. Its hard also not having a diagnosis but it seems that when it comes to the inner ear, doctors know so little.
Perhaps you could show your husband the videos I and others have made and posted on YouTube to give him a sense of what you are going through? I also recommend joining the ‘wobblers’ Facebook group (link in resources section). Most of them were damaged by antibiotics and have the same issue as you – they are a well of support to help you through the difficult days. You want to rule out anything structural but after that I am finding that most ear issues involving tinnitus and vestibular issues are often related to viral infections (see my posts here).
It it a neurologist you are going to? Please see my post here…better to get to a NEURO-OTOLOGIST – – these are the experts in the inner ear. You can ask (demand and don’t take no for an answer it is your right) to be referred by your GP.
Given that all this happened at the same time as neck issues, you might also look into upper cervical chiropractic. I have not been myself but it is on my list of things to try.
You can get through this and I promise it will get better in time as you get used to it and learn how to adapt. I’m sorry you have been through so much. Best wishes xx
May 7, 2018 @ 3:14 pm
Thank you Candice, I appreciate it so much to know that there is help & support out there.
Since posting my first message, I have had more blood results back & it appears I’ve proved ‘Positive’ (significant) on my ANA blood test. The doctor wishes to speak to me so I have arranged to do so in the next few days.
It will probably lead to nothing, or it has picked up my autoimmune ‘vitiligo’ which I have, OR possibly I have another autoimmune disease on board?? 😬 let’s hope not! I will keep you posted.
Kind regards
Kerry (UK)
May 14, 2018 @ 3:05 pm
Hi Kerry,
I’m glad you are making some headway in getting a diagnosis. In the book Medical Medium Anthony Williams presents a case for why all autoimmune conditions are actually viral so it may be useful to you to look into this – whether autoimmune shows up on your tests or not. It didn’t for me but I still got labelled with the condition (autoimmune inner ear disease). You can find out more by reading my posts with Medical Medium in the title or the EBV one below.
Wishing you the best
Candice
July 22, 2018 @ 3:59 am
Hi Candice, thank you so much for this website, I was beginning to think I was the only person on the planet with this condition. Great use of the camera, that’s what I use as an analogy to try to get people to understand my condition. That, and imagine drinking a 6 pack of beer and walking around, that’s my world. I had a bout with Meningitis in February 2009 and diagnosed by the VA in Portland, Oregon. They basically cut me loose and left me to fend on my own. This past December I was able to use the Veteran’s Choice program to go outside the VA and be tested by the University of Washington Dizziness & Balance Center. They diagnosed me as having zilch vestibular function, so I can totally relate to what you’re saying.
Some other oddities of this condition: If I go underwater or close my eyes, I have zero reference of where I am. The first time I jumped in a pool scared the daylights out of me, I didn’t know where I was in space and totally freaked out. I opened my eyes and saw the sun but still couldn’t recognize “up”. I finally felt my feet touch the bottom and kicked up, getting my head above water. I have a very hard time walking in the night. I purchased a very powerful LED headlamp that you can light up a city block with for walking at night or when I go camping. The gentomicin also destroyed my hearing. I could hardly hear anything when I first came home from the hospital. Thankfully my hearing has recovered somewhat and with my newest hearing aids, my hearing is good enough to enjoy music again. I also have hyper acusis (extreme sensitivity to noise) and it drives me crazy. I wore ear plugs whenever I went out for the first 3 years until I found an audiologist who understood what I was going through and ordered me a pair of hearing aids that helped me cope. It’s still an issue that normal hearing people cannot understand. Doing the dishes, setting keys on a counter, restaurant noise, people laughing, traffic and little kids voices just drive me up a tree! I also experience a “pressure” on my brain that is nothing like a headache, just pressure. I had extremely painful pressure when I first came home from the hospital and the VA took two weeks to get me the meds to reduce the pain. I thought I was going to die the pain was so intense. It took me 3 months to get back on my feet to where I could walk without a walker (but with a cane which I still use today).
This condition has been a struggle for me, I’ve been very active my entire life and now I am relegated to simple walks and easy hikes. I’m thankful I can still get up off the couch and do something even if it is a challenge for me. I also experience everything you’ve discussed here, especially the “foggy brain”. If I go grocery shopping and hold a bag in one hand, it feels like it is pulling the nerves of my brain right down to my shoulder and makes me want to walk in circles. Just sitting here typing this, I have a foggy brain and really get tired of feeling like this.
The UW Balance center referred me to their PT and I’ve been working with her since February. So far I’ve seen no results, but your post about doing the exercises does inspire me to keep them up.
Thank you so much for letting me vent, it’s taken me over 8 years to find someone who really understands.
Darrell Patterson
July 26, 2018 @ 12:09 am
Hi Darrell,
I’m so sorry to hear you have the jiggly-blurries. I can’t believe no-one thought to tell you that you must never jump into water, or possibly go under water, again!?! Unbelievable! You could have drowned. I thought the level of health care was much better in the US and I’m sorry to hear that even with all the money you have to spend on your healthcare there is still not much support for you. if you do hear of any treatments do let me know as I am willing to travel and sell my everything to get better!
Yes the LED headlamps are an absolute lifesaver. I have two that I hang from my clothes if I am out at night where there are no streetlamps. It’s amazing what a difference they make.
That is WONDERFUL news that some of your hearing recovered. What kind of loss do you have? Part of me is yearning to find someone who has the same hearing loss, balance loss, tinnitus and oscillopsia so I don’t feel like the only person in the world dealing with all 4 conditions! I guess that’s also the relief you feel at finding my blog. It’s such a rare condition and those of us with these aspects of the inner ear issues, feel so isolated and misunderstood.
The hyperacousis must be tough, and I imagine that activates any tinnitus you may have?
The benefits of VRT are going to be lesser if you are only just getting it now – some 8 years after the inner ear was damaged, but do stick with it, any improvement is worth it. Things like walking with a bag should definitely get easier with the right kind of practice.
Think about maybe sharing your story on here as a guest post. It really helps people to hear other peoples stories and it also can be a real relief to be heard. If you’re interested do pm me. ‘
Wishing you all the best, let me know how you get on.
Candice
October 17, 2018 @ 1:53 am
Hi Candice,
I’m glad I found this. When I googled this I had no clue how to describe my vision. I’m 29 years old but I feel like I’ve had this for over 10 years. I guess I’m just used to it by now. I was on a course of 3 different antibiotics in 4 months for a ‘sinus infection’ so I don’t know if that’s what caused it. It seems to be worse some times and better other times. Do you think stress can affect it? I also experience vertigo sometimes and occasional ringing in my ears. I account that to weather change and sinus pressure that I get. I do see a chiropractor and it does seem to help. Have you ever found out what causes these inner ear issues to begin with?
October 28, 2018 @ 9:17 pm
Hi Madison, Do you know what antibiotics you took? Some can certainly affect the inner ear especially fluoroquinolones and quinolone antibiotics (Cipro etc) or ones like gentamicin when its by IV. It would be helpful to investigate. Otherwise it could be that the sinus infection was related to an ear infection. There are a variety of different causes for inner ear issues – in my case it is viral – not that the doctors could confirm any more than that. You can read more about it in my posts with the words Epstein Barr Virus in the title or pick up a copy of Medical Medium. Yes stress can make all health issues worse as the body has less resources available to deal with whatever the problem is, and viruses also tend to ramp things up when we are tired, low, weak. I’m glad to hear the chiropractor is helping you. Could you say what he/she is doing to help so we can give it a try?