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.
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.
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.
There are two main types of 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.
The actual movement of the eyes in nystagmus can’t be cured but some things may help with managing your nystagmus.
You can get more in-depth information on the different types of nystagmus in our downloadable Understanding Nystagmus guide.
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:
For information about Northern Ireland please download our Benefits, Concessions and Certification in Northern Ireland leaflet:
Knowing RNIB is there is so reassuring, like a comfort blanket
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.