Nystagmus Q&A

We need a good place  for questions and answers here at the Shifty Eyes blog.

I know a lot of people reading this blog are parents and loved ones of people with nystagmus. Sometimes it can be hardest on those who do not have shifty eyes. It’s very difficult to understand what it is like, especially for those with smaller children. I mean, I have a hard enough time articulating my experiences with nystagmus. It can be almost impossible for children who may not even realize that they have it.

So, if anyone has any questions for me on what it’s like to live with shifty eyes, please feel free to comment me here.

xoxo

Jo

P.S. My expertise lies in day to day living and social situations. And by “expertise” I mean I live from day to day and encounter social situations :p I’m not a doctor, so I’ll do the best I can with medical questions, but you should always always refer to a specialist. If I can’t answer, I’ll certainly try to help you locate the information you need.

Advertisements

20 thoughts on “Nystagmus Q&A

  1. Hi Jo – My baby daughter (6 mos old) has recently been diagnosed with nystagmus. Obviously her mother and I have lots to learn about what this means for her and for us, and we have a lot of time to do so. Your blog has been helpful and hopeful – a refreshing alternative to the more medically themed nystagmus content most other places on the internet.

    I happened to notice in one of your posts that you live in Los Angeles, as we do. I was wondering if you had any good local contacts/resources that you’d be willing to share such as opthamologists, reading/vision therapists, educational/learning resources, school resources, etc. that you’ve had success with in the past. Just trying to build a resource list for the future.

    Thanks!
    Bryan

  2. Did you play sports in school?

    Do your parents have ‘shifty eyes?’

    Has your vision gotten better/worse over the years?

    Have you tried contacts – do they help?

  3. Dear Jo,

    This blog is amazing. I’m currently in my 3rd year at the University of Leeds studying a history BA. I’m applying for MA’s at the moment (fingers crossed!). It is so inspiring to hear about how proud and happy you are as a nystagmus sufferer. I am also the equality and diversity intern in my department, which means I offer support for all different types of people and organise widening participation events. AND I’m the chair woman of the staff student committee! Generally I’m a pain in the arse for the department, but I generally bumble along and manage all of this.

    I’ve had a few issues with discrimination but was able to sort it out with the help of the tutors who recognise my drive and dedication. From the sounds of things my condition is more severe than yours. I lose my vision completely or near to completely on average mmm maybe once a week, and during deadlines my sight level is very low. In fact ‘my old peepers’ are going off at the mo as I’ve been reading for my essay all day!

    I have also experienced the kind of social awkwardness that the condition can provoke. The standard question I get asked is ‘why don’t you wear glasses?’ When I list the full extent of my condition, very short sighted, eye movement, sight deteriorates under emotional stress or other things like tiredness / alcohol, lack of peripheral vision and poor balance / hand eye co -ordination. It ALWAYS really shocks people who know me in my day to day activities!

    I’m proud to have nystagmus!
    Amy

  4. My son is 3 months old and we just got a diagnosis today that he has a form of nystagmus. Up till today we had never heard of this. All day long we´ve been so worried and looking for answers on the internet. So right now there are still so many variables to explore and more tests to conduct. I´d just like to say that reading this blog and the testimonials has been the most positive info I´ve found on the web today! Thank you for the site. What I´ve read here has been inspiring!

  5. Hi Jo, I really like and appreciate your blog. It’s the 1st and only positive representation of life with nystagmus that I’ve come across. I see that your last post was in April of this year….are you still intending to keep blogging? I’m hoping my daughter will be able to read it when she’s older (she’s only 7 now) because I really would like her to have this positive resource. Thanks for all that you’ve done in writing your blog!

  6. My 3 year old son has a genetic disease and one side effect is Nystagmus. His eyes flutter up and down, they sometimes stick momentarily, and it seems more pronounced lately. He does not speak so he cannot attempt to describe what he sees. What does he see anyway? This is silly, but I am sitting here purposefully fluttering my eyes to see what it’s like, or will that even give me an idea…From what I have read, heat, fatigue, stress, illness, can all effect Nystagmus, making it worse. I have had quick eye flutters myself in the past, just one or two, of course I could not see anything while it was happening. Can anyone describe what they see? How they see things? See pictures clearly? See people clearly? What’s your eye-hand coordination like? What do you experience or what do you see your kids experience? Can you see colors clearly? Am I over thinking all this?

    Thanks guys,

    Momma to Drew

    • I was born with Nystagmus.
      I can only speak for myself – but everything looks normal – as far as I can tell.
      Even though apparently my eyes go back and forth, I can see everything and everyone just fine. Nothing looks out of focus – I don’t even notice this – but I have to shift my head a certain way – to either make things appear in focus – or maybe this is what stops my eyes from being all giggly.
      Don’t worry. Everything is fine.

  7. Hi Jo,
    Great blog. So nice to see someone talking about this.
    I’m 35 years old and my nystagmus has been getting worse over the last few years. I too live in Los Angeles.
    Someone had asked if you have a good doctor for treating our condition.
    If you do, could you share their information?
    My wife is expecting our first child – and I want to try to address my sight issues once and for all now.
    Thanks you,

    JQ

  8. hi my names katie, im 16 and i have nystagmus. normally it is so slow that no body notices, including me and its only noticable when i look into the far corner of my eye or stare at something to long. But sometimes i have episodes where my eyes move horizonatally from side to side really fast and i see the world moving side to side. It can last for a couple of days or just an hour and seems to be affected by tiredness, stress and enviromental factors like cold and sun.

    i was just wondering if you have herd of this before or know anything about it?
    thanks

  9. hey im 16 now but when i was in grade 5 i “learned” how to make my eyes shake. ive met other who can do this too. im just wondering if there is a name for this “skill” and i do have a friend with the actual nystagmus

  10. I don’t know if this blog is still going, but I’d like to say I just saw it for the first time today. As a middle aged woman, I’d always been told I had nystagmus but no doctor ever seemed alarmed and, as ignorant as I was, I thought maybe it was my prescription he was referring to, not a disorder. I KNOW, pretty dumb, huh? Well, I have an excellent eye doctor who recently was stunned to realize no one has ever discussed it to me, nor that I’d never had symptoms. Well, I DID and still do have symptoms I now know are attributable to nystagmus. For those who may share of of these, here they are: chronic fatigue, clumsiness, not able to night drive, difficulty in crowds (get dizzy). For years I’d been to doctors specifically to address my problems with being tired all the time! This eye doctor explained that because the brain and eyes are always working overtime to focus, it’s bound to easily tire someone with nystagmus. I find this to be true when I’m riding in a car or in large busy facilities, such as a warehouse store or crowded airport.

    Also, I have always been very uncoordinated and was teased as a kid because I truly could never hit a baseball or catch one, for that matter. I was considered a sissy. I also was terrible at tennis, water or snow-skiing and even hiking, as I always felt very unsure-footed. It all makes sense now and, though I am a fully functioning adult, it is nice to know that my lifelong symptoms have had a root cause.

    It’s interesting to read that nowadays that parents with children who have this condition can openly discuss it with teachers. This way, the teacher can know of this sometimes handicap of children and have a better understanding of some of the shortcomings in the child’s learning abilities. I was always a good reader, but I did not catch on well when it came to learning in other subjects.

    I hope this has helped even one person out there!

  11. Hi guys. I m dip frm india, i recently happened to stumble upon your blog,its really inspiring hearing to all of your accounts , I m 17 yrs old .and have had nystagmus since birth, I had a really cool schoolife despite my inabilities, yeah it was hard at many instances bt i was somehow always darn confident about myself and luckily God always saw me to safety, i was above average in all sports, ( always have hated it when it comes to hitting balls however ) , neways that was alrighty stuff ,bt now at junior college ,things have changed to hell , I have never been more self-consious abt my visual disorder as ever before, i hate making eye contact with people and always try to remain beyond the radar , I have turned to an inconfident person and m always in fear of humiliation before friends, to add to my woes, relationship peer presure only kills me more the same , Most of my friends are commited to somebody or the other ( including high school losers ) and they more or less expect the same of me ! I even got proposals ,bt i never could accept them, bcoz i always felt that they knew little of my ìnabilities, Anyways all this was alright untill i actually fell in love with someone, and fate knows whatever the heck made me actually propose to her , well she happened to have someone whereof i was wrongly informed by a clsmate. and so she rejected ,bt later i learnt it frm her frnd that she too loved me wanted to break up with her bf, this incident drove me further down the ladder and i after a long mental assylum finally decided that she deserved far better than nystagmus me, however after some time when i had finally resolved my decision to forsake my love for the greater good .fate had another test for me, .she finally brokeup with her bf and made it obvious .that she wanted to be with me, there were like 4 to 5 handsome , rich . and purposefully bright guys trying to have her, bt that made no difference to her intentions, Right now i am in the middle of this trauma , my frnds
    find me awkward for not taking this chance, even my gal frnds find me insane as does she. Bt i however am aware of my limitations, ( which m sure you guys are familiar with ) More importantly i dont want to lose this somewhat normal life i am livìng and love her all the more to acquint her with my weaknesses, But whenever I meet her glance .ì jst feel darn sad at what i am being forced to give up because of this disorder. !’ I jst hope i somehow survive through this stance, ! I knw my post might be jst a piece of trash to some of u , bt neways I felt like sharing it here ! Thanx for yous patience in examining th , :X

  12. Hello fellow nystagmus suffers

    I have had it all my life ….. I am a graphic designer and top of my field and teach …. I have played high level footballs in brazil and rep teams …..nystagmus doesn’t stop you form loving and living …. It is a pain in the arse as you do use your eyes for everything and first thing people look at but people get past it once thy now the person you are …. I have great mates who could care less about it at all …. Live in and conquer your dreams guys as you can beat it ….
    I am about the marry the lady off dreams as well as she couldnt care less about it …. So it looks funny here and there but rise above and have some fun with it and don’t be embarrassed as it is who you are

  13. What is it like for someone to play baseball or some similar sport? My sons friend has nystagmus. Im a nurse and these two play bb. I just would like to know what its like and hoe the disorder arffects his ability to play. He does have a null point but no visual aids are needed and apparently not on any medication. Is there anything that can be done to help him be able to play. Do night games make it worse. Maybe depending on his null point maybe one position played would be better than another. Just want to help.any info as to what its like in his shoes would he helpfull. Thanks

  14. hey I am a seventeen year old girl from India. I have nystagmus when I came to know about this I became extremely self conscious people think I am introvert n under confident I am good in studies bt have problem in communication with people. how can I be confident in social situations

  15. I am seventeen year old girl suffering from nystagmus I have become self conscious of this problem n feel afraid to communicate with people they think I am introvert n very under confident I am good in studies bt becomes weirdo in social occasions pls help

    • Rashi,
      Having nystagmus is nothing to be ashamed of. Don’t second guess yourself in social situations. My job as an editor requires me to be social and interacting with people in person and it has never been an issue.
      The few people that notice it think it’s cool. Try to find a doctor that knows about this condition – if it’s really bad, consider having the surgery.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s