Nystagmus
Nystagmus is a condition which causes constant movement of the eyes which you can’t control.
Nystagmus is 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.
Our Understanding Nystagmus guide is accredited by the Royal College of Ophthalmologists, and is designed to give you a detailed understanding of your eye condition and helpful advice on next steps.
You can also download our full guide on nystagmus as Word document (30KB)
Understanding nystagmus
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.
Types of nystagmus
There are two main types of nystagmus:
- Congenital nystagmus. 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.
- Acquired nystagmus. 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
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.
Management
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.
Living with nystagmus
It can seem overwhelming at first if you or your child have just been diagnosed with nystagmus. Although nystagmus can cause problems with your sight, with the right support at the right time, most people can lead full and independent lives.
We’re here to support you every step of the way, and to answer any questions you may have – just get in touch with the our Helpline. You might also it find helpful to talk to our Eye Health team about nystagmus, get support from our Sight Loss Counselling service, or find out more about our children, young people and families services.
Below are some guides that may be useful:
Getting emotional support
Benefits, concessions and registering as sight impaired
- Benefits, Concessions and Registration (PDF, 2.4MB)
- Benefits, Concessions and Registration (Word, 180KB)
For information about Northern Ireland please download our Benefits, Concessions and Certification in Northern Ireland leaflet:
Making the most of your sight
Knowing RNIB is there is so reassuring, like a comfort blanket
Peter Seaman
Products from our shop that can help
Helpful organisations
The Nystagmus Network is a UK-based charity which supports people affected by the condition and leads the research into finding a treatment.
IN-vision is a UK charity dedicated to increasing awareness of infantile nystagmus and furthering research into a cure.
