Nystagmus Puns

Hi everyone! I was born with an eye condition called Nystagmus which leaves me with very little control of my eyes. They tend to shake around which leaves me with very poor vision. A lot of us with the condition are legally blind. I have recently created a podcast called the Dancing Eyes Podcast for people with Nystagmus. We talk about what life is like with the condition and share our own personal experiences. Not sure if this is the right place to post this but if anyone thinks they would find any value in this I would love for you to check it out and have a chat with me. Here a link for anyone who may be interested https://youtube.com/channel/UC80SABvgXcK0eP6-6SksymA

Hello everyone!

As the title suggests, I am a writer and am very interested in writing a character with nystagmus. This interest in the condition came to me when I wanted to design a character to be albino. Upon further investigation, I was intrigued to find that the lack of pigment meant nystagmus was a common condition for people born with albinism. Since I have never heard of nystagmus until I stumbled across it on the internet, I thought it would be unique to write a character with the condition.

That being said, some aspects of nystagmus are a little hard for me to wrap my head around. From my understanding (please correct me if I'm wrong), especially with congenital nystagmus, it is a constant eye movement people are born with. It can affect sight, stability, focus, depth perception, etc. I am positive that different people experience these symptoms on different levels, but I wanted to ask some questions and clarify a few things to make sure I don't misrepresent the condition in my writing.

The character of interest:

The character I am looking to write is a fur trader in the 1840's - 50's. This would entail that his day-to-day would be hunting game for it's fur, as well as using survival skills to make it through the harsh winters in the rocky mountains. I envision him to be born with the condition, though it has gotten better with age. He has learned to manage it well enough to shoot a rifle. He has a peculiar head tilt to help his condition, and he also has some heavy glasses he wears whenever he needs to focus on prey.

My hesitations with giving this character nystagmus are,

1. Hunting requires a lot of focus, especially if you want to shoot something from far away. I understand a lot of people with nystagmus struggle with depth perception and often wouldn't be able to see that far ahead of them. Would it be too much of a stretch for the character's head tilt and glasses to be able to fix this problem?

2. Nystagmus may get better over time, but would it be realistic for a character in their late teens to have nystagmus, but have it be so well managed by this time, enough to do an activity like hunting?

3. Would it be insensitive to write a character in the way I envision them? Is there anything I should not do when writing a person with nystagmus? Are there things I should include to better represent the community?

Any insight on nystagmus or answers to my questions are very much appreciated! As a writer, one of the most important thin

These links are something I was researching lately. It is about lack of magnesium presenting as dancing eyes, or Nystagmus. It also means inability to stop eye movement.

https://www.reddit.com/r/Nootropics/comments/5pwspf/magnesium_wtf/?utm_medium=android_app&utm_source=share

https://en.m.wikipedia.org/wiki/Magnesium_deficiency

https://en.m.wikipedia.org/wiki/Nystagmus

I have tried magnesium citrate, but decided to try to increase the dosage and use chelated magnesium, magnesium lactate and citrate. Seems like it is working. :)

I am much, much less triggered.

I think I only saw 2 ocular albinism so far and I’ve noticed they usually have nystagmus along with other things like light sensitivity and different eye pigment colors, but how exactly does albinism causes nystagmus? I thought it all had to do with pigmentation of the eye

I've been doing a lot of self discovery and realized I may be on the spectrum. I'm on reddit very consistently on the r/autism and r/aspergers subreddits but don't hear many mentions of Nystagmus. I'm curious if any of you have it.

I've never gone to an optometrist (i think maybe once in adolescense) but I have always had difficulty with my eyes in a few ways (worsening in high-school and now especially in collegs)

Im schizoaffective (also diagnosed as bipolar one) but honestly just hoping some people have found things that help.

My eyes will shake or move rapidly back and forth from left to right. So rapidly that I can't read or drive or anything it looks like I'm in an earthquake. It'll usually only lasts maybe 5 seconds but itll happen every minute during periods where it is acting up, making it hard to function.

Another thing is that my eyelids will not be able to close my eyes are fluttering so bad. Thankfully, this particular one is more rare now. Sometimes I physically have to hold my eyes closed in order to sleep and I often take hours upon hours (and usually crying) to fall asleep it'll be so bad. The second i don't physically hold my eyelids down it's like they're on something else. This one is the worst but also currently the most rare so I am grateful. It started happening in middle schooll, and then got worse or better depending on my meds in high-school or college

Just hoping someone else can help guide me to what works best because I'm desperate. Most psychs I've been to kinda dismiss it or don't know much on it and so not sure where to go from there. Thanks.

Edit: another note. My eyes will move rapidly often when my eyelids are closed. This part has been happening for many many years. Usually I'd like show it to my sister when I was 10 like look how weird this is but overtime it got worse. Many times if I voluntarily close my eyes, one can see my actual eyeball moving back and forth. If I hold my hand gently on one eye I can physically feel it moving under my eyelid like REALLY quick back and forth. Also don't really know what that means

Hey y’all, I’m 23 and I was born with horizontal congenital nystagmus (or “dancing eyes” as my mother so endearingly calls it) I mean it’s one of those things I wouldn’t have known unless I really looked in a mirror so I never really thought about it.

Lately, however, I’ve been noticing that a lot of my symptoms could be due to nystagmus. Here’s a quick run down of my experience with it:

• I have corrected vision but I still have a hard time seeing far away • I can hardly drive at night because of my poor depth perception • My null point occurs when I tilt my head back and look out of the bottom of my eyes, I naturally do it when driving and looking far away so I have terrible neck and shoulder pain • Bad peripheral vision because my eyes hurt when I look around without turning my head

those are some symptoms I know are directly related to the condition. Now onto what I need some help with!

I’ve been prone to motion sickness since I was a child. Dramamine was always a must for road trips and boats. But since I moved from Chicago to Colorado last year, my motion sickness has been brutal. I do the 15 hour drive 4-5x a year with my sister to visit family (I have two dogs so driving is a must) and I’ve never made it a trip without vomiting.

Within the past 6 months, it’s become severe. For example, I just went back to Chicago for Thanksgiving and I threw up in every car I got into. It’s better when I drive but none of the classic tricks helps, and taking dramamine everyday tends to make me super drowsy and I already have chronic fatigue.

I went to an urgent care before coming back to Colorado and got the Scopolamine patch. It was a game changer, I could look down at my laptop in the passenger seat to finish grading!

That said, the doctor said I should visit an inner ear specialist to check everything out. I probably won’t be able to get an appointment for a few months though.

I guess I’m just wondering if any of y’all suffer from motion sickness and if you think / have been told it’s due to nystagmus. I’ve read some on the vestibular system but the articles I find are a bit wordy. Is there anything that’s helped long term besides medication, or should I wear the patch for all car rides? I’ll definitely need to see a professional but I’m curious if this is a common thing amongst us eye dancers!

Thanks for reading ♡

I’m on Keppra for anti seizure. I’ve noticed sometimes my eyes kinda twitch laterally kind of like nystagmus. I didn’t know if this could be seizure activity that the meds are dumbing down? Or even side effects of the Keppra? Has anyone had a similar experience?

Our primary care referred us to a opthalmologist but he can't see us for 2 weeks. Is that too far out?

Hello everyone! I am rather new to the topic of nystagmus, but I have been doing some searching in the internet regarding research and studies. It really looks like there is not much out there and best advice/information for daily life I found in this subreddit. Therefore I was also wondering if current research can be shared?

I am from Germany and found a summary of current recommendations (end of 2021) from doctors active in this field. To my disappointment I did not find any clue regarding international reasearch, it is only national (authors from Germany, Austria, Switzerland - https://dgn.org/wp-content/uploads/2021/11/030137_LL_Augenbewegungsstoerungen_2021.pdf). The institution of the guideline is called "Deutsche Gesellschaft für Neurologie" and the main author is "Prof. Dr. Christoph Helmchen" (Lübeck). The content is about the different forms of nystagmus and medication experience. However, there is of course a huge disclaimer referring to individual cases, therefore the name "guideline". Still, I thought maybe there are specialists in other countries that do research in this field and might want to connect with these authors/doctors enabling international research groups. At least this document was created rather recently indicating research is still being done.

The guideline shall also help to identify the primary disease where nystagmus can also occur:

"Eye movement disorders occur in numerous diseases as clinically indicative signs. They can therefore help in the clinical differential diagnosis of diseases or even explain the clinically leading symptom (e.g. oscillopsia). Therefore, clinical signs (e.g., nystagmus) and diseases are listed here." - translated with DeepL.com

From the person that is affected by nystagmus (downbeat) I know that the current diagnosis is that the cerebellum cells are degenerating causing this nystagmus. This is said to be the most common cause. Medications were not successful so far.

Hey! So I have an eye disability called Leber Congenital Ameourosis, and this is basically severe Retinitis Pigmentosa, so it causes tunnel vision and night blindness and all sorts of other nasty things. My right eye is worse off than the left eye, and it has started to show double images and involuntary movement, which the optomitrist said was probably Nystagmus after I brought up the possibility of Nystagmus to her. After I brought this up, she wanted to see if Prism lenses might do the trick for me, so she brought me in for some tests, and prism did in fact seem to help quite a lot with my issues I was facing. I am now eagerly awaiting my prism lenses to arrive there, but I'm a little worried after doing more research on Prism, and was hoping you guys could give me a little more insight/alleviate my worries a little? I'd love to fully trust what my doctor says, but at the same time, I have such little vision left that is usable that I don't want to mess up what vision I do have.

So here's my concerns:

I I see mention online of prism needing to be increased over and over again with greater prescriptions each year to the point where surgery is needed to correct the issue, and this is pretty scary for me. If it's between needing surgery, and not getting prism at all, I would choose not getting prism at all.

The second question in a way relates to the first one-- is adding prism going to make my vision without glasses worse? Like, for example, since people need to get higher prism prescriptions, does this mean that their base vision is worsening due to relying on the prism, thus making it substantially worse?

Lastly, if prism does in fact cause base vision to worsen due to relying on it, is this something that can reverse? Like if I get these prism lenses, and I go back a year later and they tell me that I need new prism lenses, and I decide to just stop using it and seek other methods, will my vision get better and get back to that point where I don't need that super strong prescription for prism again?

I guess the bottom line of what I'm asking is, am I about to get stuck into a rabbit hole where surgery lies at the end, and many many different pairs of glasses? I want this Nystagmus to be alleviat3ed as much as possible, but I don't want to mess up my eyes even more than they already are. I already live with the perpetual fear that one day I am going to wake up and be completely blind and never get to have the joy of sight again until a cure is foun

I went too deep down the Google rabbit hole and now worried he should be seen sooner

Hi there, glad to be here, I really need your advice.

English is my second language, sorry for any grammar mistakes.

I'm the only person in my family with Infantile Nystagmus, none of my parents, grandparents, siblings , cousins, nieces or nephews had to deal with Nystagmus, so it's just me.

I want to get married, I told her that if there is a chance of passing down my condition, I would never have a kid of my own, she wants kids, please share your experience here:

Is there a way to know, with a high degree of certainty, that my children will inherit my condition or not?

If you have nystagmus, are your children healthy or they have the condition as well?

I really appreciate your advice, thanks

Edit_01:

In X-Linked Infantile Nystagmus, fathers with nystagmus will have no affected children but all of their daughters will be obligatory carriers and half their grandsons can be predicted to inherit this form of nystagmus.

Mothers of sons with nystagmus, are carriers and have a risk that half of their male offspring will inherit this condition and Half of their daughters will be carriers like their mother.

sources:

https://pubmed.ncbi.nlm.nih.gov/20301748/

https://disorders.eyes.arizona.edu/handouts/nystagmus-1-congenital-x-linked

So for context, I'm going to be seeing my eye doctor again pretty soon and talk to her about all of this, and how my experience has been from the first Prism prescription to this new one, but here's the TL;DR:

I have LCA. It is pretty horrible, I have around 8% or so of my total visual field left. Acuity in the right eye is really bad, the left eye is the champ that is still going kind of strong. The right eye has the tendency to cause double images quite often, and tends to "wiggle" around, which I discovered was Nystagmus. We talked about adding Prism into my lenses to try and lessen the Nystagmus, and it was very successful at improving my overall acuity, but it didn't "quite" solve the issue. Basically instead of the eye jumping around, it is now a sharp image that wobbles around a lot slower, but is misaligned. So if I look at a picture of an apple, instead of seeing one sharp apple, and one that is dancing around, I see two apples, one being very sharp, and one being kind of sharp. Since the Prism doesn't seem to work in my case for negating the Nystagmus/Diplopia, I'm wondering if it is safe to try this new stronger prism prescription that I was given? The first weaker one we tried was pretty great initially, and remained pretty great after a while of testing, but it still doesn't solve its intended purpose, and this stronger one doesn't seem to either, although I haven't even tried this new one out for a day. I'm just really scared to screw up the remaining vision that I do have since the little that I do have is so precious to me now.

Thanks for any help you guys can provide! <3

Plz help

I have always had an issue with my eye where I have to concentrate not to see double for up close. I also have pretty bad motion sickness for an adult. A few years ago I did a little vision therapy but couldn't keep up the schedule.

I recently had a baby and had a ton of dizziness and some nausea after the birth (to the level of getting motion sick in a rocking chair). I ended up in the ER, and they saw nystagmus in one eye and said the dizziness was likely vertigo. They suggested meclizine but it isn't super breastfeeding safe especially for a preemie so I haven't been taking it. And I'm still dizzy, 10 days later. I did have a head ct which was normal.

I guess I'm wondering would the nystagmus been noticed in a vision therapy evaluation? And should I follow up at all given that I haven't been willing to take the medication? The ER paperwork doesn't say to follow up unless it gets worse but supposedly it was in whatever was sent to my ob to follow up with neurologist.

hi.

i'm from Japan now ( i'm Italian ) and i work here as a games programmer, as you can imagine i have my eye get tired soon during my job, and i would ask to other how you guys deal with your Nystagmus?

there is some cure? since there isn't much info about this.. anyone have find information on a possibility of cure?

nad yes i'm Albino.

I've had chronic nystagmus since childhood and I have found over time certain minor changes in my life have improved the quality of my life by preventing my eyes from getting strained.

Here are my tips. Please share your tips too!

• When using the computer make your cursor size as large as possible. This helps prevent your eye from moving too much looking for it especially if you're short sighted.

• Most important improvement for me: put the cursor speed to the slowest possible. This can be done on both MacOS and Windows. Also use a trackpad instead of a mouse. This will make the cursor move pretty slowly across the screen but in return it will not strain your eyes and force it to make wild movements back and forth and allow you to use the computer for hours. The reason trackpad is better than the mouse is because it constrains the distance you can move. With a mouse, you end up moving your hands fast across the table and the cursor ends up moving quickly again.

• I find smaller monitors (15 to 21 inch roughly) are more comfortable for my eyes than large computer monitors. Less angle for my neck and eyes to move in means there's a lesser chance of Nystagmus getting triggered. But for a lot of people the opposite is true and they prefer larger monitor with low resolution so please see what works best for you.

• Understand where your null point is and position yourself in ways that make your neck and face less strained. For me, I tend to angle/look a little to the right. This is where my vision is best and my eye movement is the least (yours may be different). So accordingly when I watch TV I sit a little to the right of the couch. When booking movies in the theatre or plane tickets or concerts or sitting in a classroom I always sit on the right side. That significantly relieves my neck and eyes from having to do large angle movements.

• Turn off animations wherever possible: windows, games, etc. Animations or any fast movements will trigger your Nystagmus.

• Learn to enjoy using your hearing for more activities: eg. audiobooks instead of reading, listen to podcasts, etc. Sharpen your hearing skill and try to make your life more centred around it to visual activities.

• I had to give up playing most video games. It's unfortunate but the strain on my eyes from gaming is huge and it takes a day to resolve afterwards. Not worth it. I have substituted my itch for video gaming with boardgames, socializing more and also just running my own busines

Specialist apt is set up but unsure what to expect!

I’m 16 with nystagmus I was worried when I going to get my permit I would t because of this I ended getting my permit when driving one of the main things I had trouble was with centering in the lane I’ve had my license since March and have improved to where it’s not a problem did anyone else have any problems or what was it like or is like to you driving with nystagmus?

Hi all,

I'm 24 with congenital nystagmus. I tried to start driving but was rejected due to not meeting the eyesight standards (20/40). I have since had laser eye surgery and wear glasses and I am currently at 6/15 so still short of the required standard.

Does anyone know if there is anything else I can do to help improve my eyesight?

I have heard some people with nystagmus have better vision with contacts rather than glasses so I may try that. Does anyone know what contacts are best or is that dependent upon the individual? And I'm assuming that the difference gained by contacts would still be short of 20/40

I had nystagmus since I was born but recently it has gotten worse. Since august, whenever I look with my eyes to the left I used to feel extremely disoriented, felt like everything was shaking until I looked another way or moved my head up. Now even if I barely look to the left and/or try to focus on an object I get disoriented badly, I feel like everything is shaking / moving (I don't know how to put it otherwise). I wear glasses and last time I went to the ophthalmology was in July. Has anyone experience this or have any idea why this is happening? This is starting to take a toll on me and my day to day life. Any help is welcomed!
P:S: This mostly happens when I'm close to ex. my monitor, phone, book etc. When I'm far away this doesn't happen that often. Also I'm myopic and I'm pretty sure I also have astigmatism and strabismus.

34F, Latina, USA, 134 lbs, 64 inches tall, no drugs/smoking/alcohol. DX: PsA, Hemiplegic Migraines, ADHD, Asthma, Autoimmune thyroid issues. Taking Ajovy, Adderall, nurtec, folate, Mag. Waiting on referral to new neuro and for scans, will likely be months before I have an appointment. Started having severe vision problems about one month ago, was told it was my brain by eye doctor. As of 3 days ago, new symptoms of enlarged right pupil, nystagmus when I look up or to right. Bowel and bladder issues, right side facial spasms, left sided weakness, confusion, neuropathy, sudden weakness, severe fatigue, thoracic back pain, legs suddenly stop working, will drop things without warning. Had scans of only my brain in February and they were WNL. I’ve gotten significantly worse suddenly. I was diagnosed with Hemiplegic migraines less than a year ago. Do I need to seek urgent evaluation or can this wait? I don’t want to go to the ER if I can avoid it.

Nystagmus is an involuntary eye movement. For years I kept looking up “eye twitch” or “eye spasm”, but all results say that’s due to stress, lack of sleep or excess caffeine. However, when I look to the far left or right— even when relaxed or refreshed— my eyes go absolutely crazy and I can’t keep them still.

Does anyone else have this? It’s GOT to be related to brain fog somehow. But I’ve never gotten a definitive diagnosis, only one neurologist saying my eye exam response was “a little strange” (thanks, doc!).

I'm in my mid 30s and have had congenital nystagmus my whole life. It is a very obvious constant lateral back and forth movement. When I was younger, I would almost daily be asked about it. Now as I've gotten older, few people mention it.

To be honest, I have read about head turns etc. I don't know what that is. I don't think I have one I have glasses, stopped wearing soft daily contacts, as being a physician and on 24-30 hour calls, contacts dry out. My vision is 20/25 at very best. 20/30 is my norm without struggling. I have read a few letters at 20/20 but that's near impossible. My vision is 20/50 or so uncorrected. I think -1.5 in one eye, -1.75 in the other.

Thought I'd share in case any parents out there are worried about their kiddo. I'm doing just fine and never think about my eyes unless I'm nervous for a driver's license vision test.

Hey I need a person who suffers from nystagmus because I think might have it I have many questions this shitty decease is ruining my life. I would love to talk with someone who has it, please 😔 I would love to get some answers because I am scared of getting blind or get squint eyes or st

I've been doing a lot of self discovery and realized I may be on the spectrum. I'm on reddit very consistently on the r/autism and r/aspergers subreddits but don't hear many mentions of Nystagmus. I'm curious if any of you have it.

Who here has Nystagmus I was just diagnosed this year.