Nystagmus is a complex condition and affects people's everyday lives in countless ways. We can broadly divide nystagmus into two:
- Early onset nystagmus (also known as congenital nystagmus or CN)
- Late onset nystagmus (also known as acquired nystagmus or AN)
With congenital nystagmus the initial focus tends to be on concerns such as not being able to drive or see the board at school. But the social and emotional consequences of having nystagmus – which often receive little attention -- are just as great and can be just as damaging. The following comments from people with CN give an idea of what this condition is like on a daily basis.
“I feel nystagmus has a huge effect on me emotionally and this can lead me to feel quite low and sometimes worthless. It's so frustrating that people expect you to perform miracles and work as fast as everyone else. It would be amazing to meet someone like me who has nystagmus. I'm crying out to meet people like me. I feel people don't understand me at work as I work slower than everyone else. It's frustrating and not my fault."
“I have recently received the information pack (from the Nystagmus Network) and I have learnt so much: I could not believe that there are so many people out there with this problem. Lots of things now make sense: my inability to play any sport that involved a ball when I was at school, my problems driving, the difficulty in focusing in crowded places, my poor space awareness and the struggle to read busy train timetables at stations!!!”
“Nystagmus has affected my life in social aspects. I have problems in social situations in everyday life as people who don't know me think I am retarded or they avoid me or tease me and bully me.”
“Very many thanks for the attachments which I have read with interest; as you say, there is little apparently known about late onset/acquired nystagmus. And for the likes of us more is needed to be known with the hope that something could be done.”
“It was always difficult trying to explain my eye condition to others when I didn't fully understand it myself and wasn't in possession of all the facts. Indeed, I was 21 before I even knew that my eye condition was Rotary Nystagmus and that was only after I went to my GP's surgery and asked for the name from my medical file.“
“Actually asking for sponsorship has helped me at work as sending people the link means they read up about nystagmus and are now more appreciative of what I go through on a daily basis, so I feel much more comfortable with everyone now.“
“I found this forum just recently. I've never known anyone else with nystagmus, and my ophthalmologist kept telling me stuff about how my nystagmus may have affected my personality, way of relating to the world, whatever. I never really gave it much thought, especially since I didn't have anyone to really talk to about it. After reading a few comments here, I'm very excited to learn more from other people. It never occurred to me that the complaints I've had might be valid, since most people will tell me that I'm exaggerating or that they don't know what I'm talking about.“ (Comment on forum)
Acquired nystagmus has many causes or associated illnesses including Multiple Sclerosis (MS), stroke and a range of neurological conditions. Below are some comments made by people with AN to the Nystagmus Network.
“I have acquired nystagmus and it's like living in an earthquake all the time.”
“My nystagmus is due to MS. It started with my shaking eyes when I was trying to read. It's worse when I'm tired, but it's always there. I'm talking to you now with eyes shut because it's easier like that. The eye hospital was useless initially – they didn't even tell me about the low vision clinic. Very few people working with MS patients seem to know anything about how nystagmus might affect us. It's good to talk to someone who understands.”
“I had a good job as a contractor. I have not worked since October 2008 as my condition affects me in many different ways. I am very unhappy and do not know where to turn. My whole life has changed; I can't work, I need a stick when I go out as I feel I am going to fall over and have done. I have lost a lot of confidence and have withdrawn. I feel as though I am going through a form of mourning, which it is. It is a loss. A loss of my life before this condition happened to me; loss of confidence.”
“I have progressive cerebellar ataxia and was diagnosed with nystagmus at age 63. I can read large print and watch TV if I sit still. But I can no longer drive and have had to give up my business. I've been on an expert patient programme with a dozen others and some of us still meet up. We find it helps to share experiences of being in the same boat. Even just talking to you has made me feel better.”
“My husband has nystagmus due to a stroke. We live on a farm, so the loss of mobility is a big problem. As is the oscillopsia. The local eye doctors are little help, but his stroke consultant is good, is trying to get support and is not giving up on us. My husband holds his head to one side to get his best vision. But unfortunately that leads to postural pain. He is frustrated that he can no longer farm or do DIY or pursue his other interests. He attends a stroke group, but no-one else there has vision problems. We find that nystagmus is not taken seriously as he looks healthier than most of the others in the group.”
“I’m 76 years old. I’ve just been told by my optometrist that I have acquired vertical nystagmus. I have dizziness and other symptoms. The dizziness is the bane of my life. I don’t expect miracles, I just want information and a diagnosis as to what’s causing the nystagmus.“
“Came across the website and found it interesting, thank god I am not the only one! I have acquired nystagmus. Was in a motorbike accident, serious head injury, coma for a month and have been left with diplopia, a divergent squint and up-beating and down-beating nystagmus, as my specialist says, I have got the lot...... Socially it’s a bit of a nightmare for me, making eye contact is hugely difficult and people are quick to judge. I pick up on people’s expressions all the time. Holding down a job presents a huge problem as my eyes are constantly moving, its impossible to focus.“
“I've been feeling quite dizzy recently, sometimes I feel quite sick with it. I feel like I'm falling, or like the floor is coming up towards me. Watching TV, things are going backwards and forwards all the time. But when I tell people about nystagmus, hardly anyone takes me seriously.“