Nystagmus Support Group

Nystagmus is rapid involuntary rhythmic eye movement, with the eyes moving quickly in one direction (quick phase), and then slowly in the other (slow phase). Nystagmus is a relatively common clinical condition, affecting one in every 5,000 to 10,000 individuals. Nystagmus generally causes a degree of vision impairment, although the severity of such impairment varies widely.

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  • Bornloser

    40 year nightmare

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    40 years with a severe congenital nystagmus and I wouldn't wish this on my worst enemy, death can't come any sooner, it's got to be the loneliest existance ever, a life with no friends, no buddies to have your back and endless jokes and ridiculeAll the optimists can say there's always a brighter tomorrow- that's one thing I'll never have
  • TomYork

    Vaccination

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    Hi,Do you vaccinate your baby born with nystagmus? Is it safe?Tom
  • mortax10

    I might need some help

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    Hi my name is Matthew and I am 43 years young and live in Australia Guess I am just trying to figure out what types of Nystagmus there are are what type i have. I don't Suffer with this, it's annoying but that's about it. I have found that my balance is effected by Nystagmus which I hate. sometimes my balance can get so bad I fall over.
  • ShanJon

    Newbie/ mother of son w Nystagmus

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    My son is 6yrs old and has nystagmus.  On Monday he had surgery to correct the null point position (chin down).  Has anyone had this before?  
  • Solodolo

    Curious

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    Hello I've been trying to get my driver's license for some time now and I was wondering what are some of the things you all have done to get licenses
  • Jared80

    Hi everyone

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    My name is jared and Im 36 years old with congenital nystagmus. Up until a few years ago I was under the assumption my vision problem was diabetes related as explained to me by our small town eye doctor. Imagine my shock to learn this is not the case and glad to see there is a group of others with the same disease. My vision over the past year or so has gotten really worse. Light is really...
  • ellen.olivia

    hello, new here

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    I've been looking for a support group like this forever. My name is Ellen, I'm 18 and I was born with vertical nystagmus.My nystagmus can last 4 hours or 5 minutes.
  • Stephanino

    Nystagmus and Driving

    I am 19 and I have nystagmus. I have not gotten my drivers license yet. I am very nervous about getting it because I am afraid I can't focus on everything and everyone around me at the same time. Is there any advice anyone can give me or any stories about someone with nystagmus and driving. It would be greatly appreciated. Thank you so much!!
  • Hey, im Paul 17 and after some years of trying my eye test at the optician, idid it. Im so happy about it and i want to say to everybody with Nystagmus and other eye diseases that you have to fight for it. Of course , if your eyes are very bad and far away from the standards, you have to see that you will have many problems and that ill be very dangerous for you and the others, if you drive a...
  • Stephanino

    Update!!! Nystagmus and Driving

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    Hey guys,I had previously written a topic on Nystagmus and Driving about 5 years ago and updated it about a year ago in a reply on my Topic. I now have another update. I previously had gone to the doctor at the age of 21 and was told by the really rude Optometrist that I'd never drive and gave me a thumbs up when he asked if I had someone to drive me because that is what I'd be doing for the rest...
  • kmo1kj

    New to this Support Group

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    Hi everyone! My name is Karen, and I have Congenital Nystagmus. I am in my early 40s, and will be visiting my eye doctor tomorrow, as my vision has been going downhill the past few months. I previously had reading glasses, which I can no longer see out of. I was online looking to see if contact lenses were an option for me when I came across this website. I have never searched for a support group...
  • momstagmus

    New to Group

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    Hi everyone, My 8 month old Son has Nystagmus. I am very new to this condition and a I am trying to learn as much as possible. I was wondering if anyone has tried acupuncture or acupressure to treat their Nystagmus? Any luck?Also, my pediatric optomologist keeps reassuring me that most likely my Son will out grow his Nystagmus and there is no treatment.. does anyone in the N. Cal area know of...
  • Karen-Hughes-Hanscom

    optic nueritis and nystagmus

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    hi in 2008 this optic nueritis and nystagmus .happend been thru tests been told ms maybe then dr say they don't know...hate being in the dark..
  • deleted_user

    Nystagmus and My Glasses

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    Alright so I have had nystagmus since birth and I have been wearing glasses since around the age of five. I was wondering why I never noticed any difference when I wore my glasses compared to when I didn't. They honestly don't even help me. My vision is uncorrected at 20/80 and corrected at 20/70 but honestly I think the doctor is just bs'ing me because like I said I dont see no difference. And...
  • I have a null point that causes me to turn my head about 45 degrees to get my best vision. When getting a refraction exam to find the best corrective lenses, I have trouble utilizing my null point to look through the lens. When I turn my head to utilize my null point, my left eye will be 2" - 3" away from the lens. I am concerned that this changes the viewing angle and gives inaccurate...