Nystagmus is a condition which causes constant movement of the eyes which you can’t control.
It’s caused by a problem with the way the eye sends messages back to the brain or how parts of the brain which deal with eye movement make sense of the information.
Nystagmus normally starts in childhood.
We’ve pulled together a comprehensive guide to nystagmus that you can download and some useful, practical advice for coping with the condition.
Nystagmus is constant uncontrolled movement of the eyes. The movements are usually side to side but can also be up and down or in a circular motion. Most people with nystagmus have reduced vision.
When visual pathways or parts of the brain that control this movement don’t develop properly or get damaged later in life, eye movements can become poorly controlled causing nystagmus.
In the below videos, Phil and Molly describe how nystagmus affects their sight and how they manage with this eye condition day to day.
Our Understanding nystagmus guide is accredited by the Royal College of Ophthalmologists.
It’s designed to give you a detailed understanding of your eye condition and helpful advice on next steps.
You can get more in-depth information on the different types of nystagmus in our Understanding nystagmus guide.
This type of nystagmus is noticed in very young children, usually soon after they’re born or in the first years of life. It can be caused by a problem with the eye itself or by a problem with the visual pathway from the eye to the brain.
This type of nystagmus develops later, generally in adults. Acquired nystagmus is often a sign of another condition like stroke, multiple sclerosis, brain tumour or the effect of a drug or head injury.
Diagnosing nystagmus can be the first sign of a serious disorder of the eye or brain. It’s really important that when nystagmus first develops, it’s checked by an ophthalmologist (hospital eye doctor) or neurologist as soon as possible.
Investigations will depend on the type of nystagmus you have, your age and what your doctor thinks the underlying cause is.
It’s very likely that an eye clinic will monitor the condition and this might mean seeing a number of different professionals.
A detailed breakdown of the ways in which your ophthalmologist might investigate your condition is available in our downloadable Understanding nystagmus guide.
The actual movement of the eyes in nystagmus can’t be cured but some things may help with managing your nystagmus.
Glasses, contact lenses and low vision aids: these won’t correct nystagmus but having clearer vision can help slow eye movements.
Surgery: Very occasionally surgery can be performed to alter the position of the muscles that move the eye so that it’s more comfortable for you to keep your head in the best position Surgery can’t correct or cure your nystagmus.
Drugs: Drugs can sometimes be used in acquired nystagmus to help reduce your awareness of the constant eye movement.
Bio feedback: Researchers have developed techniques to help you become more aware of your eye movements in order to control them. There’s no clear evidence that these techniques work but some people with nystagmus have reported good results.
You can get more in-depth information on the different types of nystagmus in our downloadable Understanding nystagmus guide.
Through having that help from RNIB, I've got my confidence back. I lost it for such a long time, so it was just lovely to get back out in to normal life again and not be stuck indoors
Trying to adjust after a diagnosis of nystagmus can seem overwhelming at first and it might involve some changes to your life.
We’re here to support you every step of the way, and to answer any questions you may have about your sight loss or day-to-day living.
Living with nystagmus shouldn’t mean an end to doing most of the things you like to do.
We will help you maximise your vision and make the most of the sight that you have.
If you haven’t already now would be a good time to join RNIB Connect, our connected community of everyone affected by sight loss.
NHS Direct is the website for the NHS Direct health advice services, with information and advice about nystagmus