Discussion in 'Health and Fitness' started by Victoria, Apr 2, 2008.

  1. Victoria

    Victoria Pretzel In Training

    I've had this from birth but have never thought to Google it until about an hour ago. WOW! I had no idea this condition was considered to be such a problem, let alone a disability, what on earth...?!

    I now realise how little I know about a condition I was born with, I'm ashamed. As a child I knew there was no treatment and nothing that could be done so I've always just got on with things, and really never given it a thought.

    Does anyone here suffer from this condition? Have you had it from childhood? How does it effect your life? Do you find anything helps improve your vision?
  2. Victoria

    Victoria Pretzel In Training

  3. Cait

    Cait da Bionic is BACK!

    Interesting. I don't have many problems with my eyes (besides being light-sensitive, so I have to wear sunglasses even on cloudy days). One of my brothers tho, has a really hard time focusing his eyes on a page - they'll run all over the place and not focus on the words, so it's really hard for him to read.

    Can't say I've ever heard of Nystagmus tho... how much does it affect you?
  4. inthespirit

    inthespirit ignant

    Whats the experience of this condition like? Will you be looking say at the TV or something and your eye(s) will automatically start to drift off to something else? :confused:
  5. Taffyleigh

    Taffyleigh Valued Member

    Its amazing what you can put up with and not realise how serious it it. I've never come across someone with the same condition as you, but i can imagine it would be a nightmare at times. I have been an insulin dependant diabetic for 30 years (since i was 6) and even though i have been injecting all that time, it wasn't until a few years ago that i realised how serious the other side effects of being diabetic are. I now have large lumps on my body from where i have been injecting (called lipoma - apparently harmless but unsightly), my eyesight is suffering and i have leaking kidneys. I also suffer from asthma and IBS, if i was a horse they would of shot me by now. Even so when i get on the mats, i forget all my woes and get on with training except for checking my sugar levels a couple of times. I just think that there are people with a lot worse problems than me, and get on with life.
  6. Victoria

    Victoria Pretzel In Training

    to answer both you and cait, as I said I've had it all my life so never even thought to look into it, I can't believe how badly effected people with this condition are (and I apparently am!). Basically I'm blind as a bat but nothing can correct it. There is no treatment for this condition at the moment and it's only the last decade or so that doctors have learnt more about it - 20 years ago they were baffled still. Mine is neurological and I was born with it, I'll probably never find the cause.

    For me personally, it's "wiggling" of the eyes. I can't remember but that might be why chimp calls me Wonky :D

    For the most part I don't notice it because I'm used to it, and it doesn't stand out too much like it would if my eyes were rolling around my head. But I have a lot of trouble focusing on any one object, I can't read text far away and I have a very hard time recognising people from a distance because I can't focus on them. Glasses make no difference (I don't need glasses) as it's the nystagmus that's the problem. I can't read number plates for the most part although I'm lucky enough to be able to under certain circumstances. Most people with this condition can't drive and are partially sighted or registered blind, but my vision is unusually good for someone with my condition (because of this the hospital wanted me for research when I was child but my mother refused, so I've just volunteered myself now :D )

    Activities like working on the PC, watching TV, reading a book, my face is usually pressed up against the screen and I can't read E-Books passed the first paragraph. And the condition varies at certain times of the day and is even effected by emotion, for example when stressed or under pressure the condition worsens considerably. I suffer in job interviews when trying to look the interrogator in the eye! I also have a feeling my migraines are linked.

    I also have a problem with balance due to rubbish depth perception from the nystagmus, to quote my physiotherapist "your brain has no idea where your knees are in space" :D Which as you can imagine, is a right pain in MA and may be contributing to my knee problems.

    The biggest problem comes when my hypoglycemia plays up, my brain goes blergh and with the nystagmus I can't focus or concentrate on anything, it's actually quite funny in a sick way.

    But as I said I'm lucky my vision is by some miracle not affected to the extent others are, and when talking to people some don't even notice the movement in my eyes since my muscles have gained more control over the years - whereas some people with nystagmus can have very noticeably moving eyes and be almost blind. I can also see better than the average person in the dark(!) but am very sensitive to light. I can also read the smallest of print close up.

    Cait do your brothers eyes jump a little when you're in a conversation with him? It could be worth seeing a nystagmus specialist.
  7. narcsarge

    narcsarge Masticated Whey

    Not up on your condition V but in Law Enforcement, we use Nystagmus tests to determine Driving Under the Influence. Be careful if you ever have to "follow the pen" late one night! Let the officers know of your condition immediately. They will have to use something else....
  8. Victoria

    Victoria Pretzel In Training

    I don't envy you. Someone very close to me is type 1 diabetic and it can be challenging at times. They've had it all their lives like you and also have the lumps you discribed. It can cause an awful lot of other health problems so I'm glad you realised now rather than later ;)

    It is true when you've lived with a condition most or all of your life then it becomes 'normal' to you, and you don't understand what all the fuss is about, you just get on with things (well some don't...).

    Reading up on my condition today has been a right eye opener, I should thank Lou for the migraine discussion earlier :D
  9. Victoria

    Victoria Pretzel In Training

    Wow :eek:

    If I ever pass my test, I'll bare that in mind :)

    Funny enough, "follow the pen" at the doctors and hospital is great. Most aren't aware of the condition so the look on their face never ceases to be amusing. Priceless! The endocrinologist I saw last said "are you aware that you have nystagmus?". No, I've never noticed :rolleyes: Same as the optomologist who said "are you aware that you're colour blind?". You think?
  10. Cait

    Cait da Bionic is BACK!

    I haven't seen him in 2 years, so I don't really remember - I'll have to talk to him about it. We've always chalked it up to the ADHD that he suffers from.

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