Acquired Nystagmus and Oscillopsia
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- Опубліковано 4 жов 2024
- Acquired Nystagmus and Oscillopsia - an explanation of the condition and symptoms, discussion of treatments and a call to arms for more research. By Professor Chris Harris, Royal Eye Infirmary, Plymouth.
I have been suffering from vertigo due to bilateral inner ear defects, and I am also experiencing Oscillopsia, which has been particularly challenging to manage. While I have noticed some improvements in my vertigo symptoms after several months of vestibular rehabilitation therapy (VRT)-such as reduced sensations of falling and a slight decrease in daily anxiety and fatigue-I still need to rest frequently. However, the effects of Oscillopsia remain unchanged or, subjectively, seem to be worsening.
If anyone is aware of specific training or treatments that can help alleviate Oscillopsia, I would be extremely grateful. I am also committed to supporting research in this area, including contributing financially, to the extent that I am able.
I was diagnosed with downbeat nystagmus a year ago. As a nurse, I had ruled out many problems and knew my eyes were not focusing prior to seeing a Neuro-opthamologist. I am taking Ampyra ER 10 mg every morning. It has made a huge difference. It takes 1-2 hours for it to stop the eye movement and I can resume a somewhat normal routine. I can not track things in the sky nor look around while driving or walking. Many of the things I once did and enjoyed I can no longer do.
i think i have Oscillopsia, i’m not sure, but i see everything moving all the time it’s terrifying
Same
Mine happens all the time too. But in a constant up down motion. Along with a very bad headache. This single headache along with the problem here has lasted one year nine months. All started just one week after my second vax. Mine sounds like the acquired version on here. 🙄
This was interesting. I learned a lot. Thanks for posting this.
I have acquired nystagmus and the doctors have no idea how it happened and we've tried everything. Every test comes back mormal except the VNG where you can see the nystagmus. It really sucks ☹️
Mine is all the time when I am moving. I am two years post acoustic neuroma surgery, translabrythine. This issue leaves me exhausted by mid day and I must lay down for about an hour. It also makes it difficult to walk for exercise. I haven’t fallen yet but I can sure look wobbly at times. Exhausting.
I have it all the time when I'm walking or moving and I suffer from imbalance and vertigo sometimes. Mine is a COVID-19 sequel. I don't know if there's a cure.
I have been a Type 1 diabetic for 42 years with neuropathy. I infrequently experience light headedness but, a few days ago while reclining and watching TV, for the first time experienced a sensation of the scene on the TV repeatedly rotating about 90 degrees outside the frame of the TV which itself appeared normal. I can only assume therefore that only one eye was affected although I am not aware of having nystagmus. This phenomenon lasted about 20 seconds and has not occurred again. My blood sugar was normal at the time. I have significant neck and shoulder stiffness which remains undiagnosed and some evidence of spinal pathology.
Did you find any solution? I have the exact same symptoms
@@veronicadiaz9454 went to a neurologist who couldn’t replicate the symptoms so assumed it might be central and sent me for a brain MRI which showed nothing abnormal. Sent me to an ENT but I’m still waiting for the appointment. In the interim, I had an episode which, as always, is sound induced, but only when the sound is resonant and not necessarily loud. In this case it was simply speaking on my cell phone. Here, my vision constantly rotated. On another occasion my visual field moved horizontally right to left, constantly repeating.I had the foresight this time to film my eyes and sent the clip to my neurologist who confirmed nystagmus. What’s causing it though is uncertain but, since it’s sound induced, would suggest Tullio’s Syndrome. The problem with being diabetic is that that is always suggested to be the root cause of any difficult diagnosis. Being close to retirement also relegates any malady to one’s age! My widespread myalgia and muscle stiffness is a case in point.
@@veronicadiaz9454 I wrote a reply and it disappeared! I consulted a neurologist who failed to reproduce my symptoms and suspected a central rather than peripheral pathology and sent me for a brain MRI but which was normal. He suggested an ENT, but I’m still waiting for the appointment. In the interim, I experienced another episode (I’ve had a few) but managed to take a movie clip of my eyes which confirmed nystagmus. This time, my vision rotated and yet my eyes flicked horizontally. Other episodes have had me experience horizontal shifting of my entire visual field. Almost always, these episodes have been brought on by resonant sound, not necessarily always loud. This suggests Tullio’s syndrome. Lyme disease can cause this and, while we do not have Lyme disease in my country, I did visit the salt caves in the Negev desert decades ago and was bitten and was severely ill, but it could have been the result of a spider bite. My episodes are of short duration but are worrying given the extreme disorientation that accompany them.
@@veronicadiaz9454 I’ve replied twice but my reply always disappears.
@@veronicadiaz9454 my follow-up to you always vanishes immediately.
I've had constant nystagmus and oscillopsia for 14 months since an attack of vestibular neuritis. I'm keeping up with my therapy and I really hope one day it goes away because it makes everything difficult
Me too but haven’t been seen for it
Hi how are u doing with vision therapy? I just got Saccadic intrusions which is similar and terrible. Do u have the fishbowl sensation?
@@beepboop9519 how are u doing with it now
@@ajpello2003 still have it, I've been told it's permanent 😟
@@kellybennett80 oh no what therapy r u doing???
My eyes have been rotating very severely but only for 10-15 minutes every time it happens and I assume it’s permanent because I’ve had it since i can remember
You need to add B1 vitamin deficiency as a cause for Acquired Nystagmus.
Yes found u Linda! :)
I have oscillopsia, but I've been told it's because of my nystagamus onset when I got Meniere's Disease.
is it always happened in both eyes or sometime unilateral too?
I have vibrating vision all the time when still or moving
The most visible on black and white stripes practically everything what is black colour
Looks like is jumping out of frame
This is going on around 2 years now and is more visible and disturbing it unbearable plus
No one helping me with this
I’m loosing my mind
Me vibrating view when i see small checkerd pattern
Same here started little by little in about 4 months it won't go away now
What if you are experience oscillopsia constantly, in any position, without Nystagmus? The oscillation gets worse if i dont sleep or eat well. It was very bad before, i had it in central vision and peripheral vision. now its alsmot gone in my central vision. What is really weird it that i could induce this myself when i was younger, by doing something with my eye muscles and/or eye focusing muscles.... then i only had it for a second or so.. but then i did this multiple times and it got stuck? can it be a muscle issue? It effects both eyes so i think its some sort of brain damage....
Hi, I experience the similar symptoms as you described. How are you doing right now, were you able to solve the issue?
Can this develop after a stroke that mainly effected my eye sight?
In my case, oscillopsia came from a vestibular bilateral damage originated by gentamicine prescripion.
I made this video to try to explain my symptom : ua-cam.com/users/shortsh98a7MAZB1I
Being not related to nystagmus maybe this is effectively not related to your point, however.
Anyway, I hope you can get more support for your research and find any kind of help for patients having this terribly uncomfortable symptom. 🍀🙏
Saludos desde México. 👋
To me it happens sometimes only and its always when Im trying to fall asleep. I close my eyes and after a few minutes while my eyes are closed I feel like Im.rotating or moving so I open my eyes and my vision is all shaking from one side to the other like an earthquake while everything around me is staying still.
That’s perfectly normal
I have AN 24/7 due to it being triggered by MS.