Can you help improve our information on nystagmus?
We would like your views on our information about nystagmus. Your views will help us make our information as useful as possible for other people diagnosed with this condition. We’re looking for people:
- who live in the UK, and
- who have nystagmus or who are caring for someone with nystagmus.
We would like to hear from you if you are willing to answer a few questions (either over the phone or by email) about what information would have been most helpful to you when you were diagnosed with this eye condition. In addition, we’d like to hear your suggestions on how our current information could be improved.
To find out more please contact the RNIB Eye Health Information team on 020 7391 3299 or by email [email protected].
– What are the different types of nystagmus?
– Living with nystagmus
– What are the effects of nystagmus on sight?
– How can nystagmus be managed?
What are the different types of nystagmus?
There are two main types of nystagmus: one which appears in the first few months of life called “infantile” or “congenital” nystagmus; and another which develops later in life which is usually called “acquired” nystagmus.
Infantile or congenital nystagmus
This type of nystagmus can be caused either by a problem with the eyes themselves or by a problem with the parts of the brain which control eye movements. But sometimes children develop nystagmus without these problems.
The way the brain and eyes work together is known as the visual system. All babies are born without fully developed visual systems. In the first few years of life, our vision develops through our eyes and brain being stimulated by what we see. If a baby is born with an eye condition which affects how well they can see, then their visual system may not have a chance to develop normally and this can lead to nystagmus.
Some eye conditions which can cause reduced vision in children include:
- congenital cataracts
- ocular albinism
- retinal dystrophies, such as cone dystrophy or congenital stationary night blindness
- optic nerve conditions, such as optic nerve coloboma or hypoplasia
However, in many children the nystagmus can happen for no known reason and a cause can’t be found – this is called “idiopathic infantile nystagmus”.
Nystagmus that develops later, in adults, is called “acquired nystagmus”. Anything that damages the parts of the brain that control eye movements can result in acquired nystagmus.
Acquired nystagmus is usually a sign of another underlying condition such as stroke, multiple sclerosis, brain tumour, head injury or the effects of a drug.
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What are the effects of nystagmus on sight?
If you have nystagmus, your eyes are always moving, although it may not always be obvious to you or others. The way that nystagmus affects vision varies from person to person; however, it doesn’t lead to total loss of sight.
How your vision is affected if you have infantile nystagmus varies a lot, and can often depend on the underlying cause of your nystagmus. Some people may be able to read most sizes of print without help, while others may have a significantly reduced level of vision. Most people with nystagmus have some useful vision and normally nystagmus doesn’t get worse with age.
Your vision can vary in quality when you have nystagmus, depending on which direction you’re looking in or whether you’re looking at something far away or close up.
Your vision can also vary depending on how you’re feeling. The more stressful or tiring you find a situation, the worse your vision can become. Your vision may also become worse when you’re feeling unwell, or if you’re anxious or upset.
Having nystagmus may mean that you need longer to see or read things. The constant movement of your eyes means that you have less time to focus on what is in front of you, for example printed text.
The effects of nystagmus may improve when your head is held in a particular position, which can help you to see things better. This is known as the “null zone”. This is often the direction of your gaze where your eye movements are slowest and most stable. Slowing or making eye movements more stable may mean your vision becomes clearer. Children with infantile nystagmus often find their null zone naturally. Parents or teachers may notice that a child tilts their head to one side, or looks at things sideways. Some people with nystagmus also find that nodding their head helps to improve their vision.
Nystagmus can cause poor depth perception and people with the condition may find it difficult to judge distances and height.
If you develop nystagmus later on in life, you may experience a constant awareness of the world moving around you, or in front of you. This is known as oscillopsia.
As the nystagmus is new, your brain has not adapted to the unexpected eye movements and so it sees the world moving. This is very disabling and can make things very difficult to see, as well as sometimes making you feel sick and dizzy.
Depending on what has caused your acquired nystagmus, it may be a short term condition that might get better. However, some people have the condition for the long term which can cause problems with how well they can see as well as being disorientating.
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How can nystagmus be managed?
There’s no cure for nystagmus at the moment. Having nystagmus can cause reduced vision but there things which can help manage the condition and make the most of your sight.
- Glasses and contact lenses will ensure that you, or your child, have the best vision possible. They can’t correct nystagmus but having clearer vision can help slow the eye movements in infantile nystagmus.
- Low vision aids, such as magnifiers can help with reading. Tinted glasses may be useful to control glare. A low vision assessment will look at using these types of aids and explore which ones may help.
There are also some other options which can sometimes help to manage nystagmus. These options don’t work for everyone as their suitability varies from person to person. The options are:
- Prisms can sometimes be prescribed in spectacles. Prisms can’t correct nystagmus, but can sometimes be helpful in aligning the eyes to make the null zone easier to use.
- Surgery, very occasionally, can be used to change the position of the muscles that move the eye. The surgery can’t correct the nystagmus, but can be helpful in reducing the amount a person needs to turn their head to get to their null zone, making it more comfortable to keep their head in the best position. Researchers are looking at whether surgery can be used to correct the nystagmus itself, but this research is in its early stages.
- Medication and drugs may be used in some cases of acquired nystagmus, for example if the nystagmus is caused by multiple sclerosis. Drugs can sometimes help control eye movements and reduce the symptoms of oscillopsia.
- Botulinum toxin (Botox) injections into the eye muscles may occasionally be used to help some people who have acquired nystagmus that is caused by a neurological problem, such as multiple sclerosis. Botox weakens the eye muscles and helps to slow down the movements. The effects are only temporary, but can sometimes help to reduce the symptoms of oscillopsia in the short term.
You may hear of research into other management therapies such as acupuncture or biofeedback, which aims to reduce nystagmus through audio signals. However, it’s uncertain whether any of these therapies actually work and more research is needed.
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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 our Sight Loss Advice Service. You might also find the information on our children, young people and families pages helpful.
For children with infantile nystagmus, having the right support at school can make a big difference. When a child is first diagnosed with an eye condition, a qualified teacher for visual impairment (QTVI) can provide support with development, play, learning and education. This support is continued from infancy into school and higher education, and other support is available when moving into employment. At an early stage, ask your local authority to put you in contact with a QTVI. They will support you and your child as soon as a visual impairment is suspected or diagnosed. If you have difficulty getting help, or need the details of the specialist teacher in your area, contact our Helpline.
Depending on how much of a person’s sight is affected by nystagmus, they may be eligible to be registered as sight impaired (partially sighted) or severely sight impaired (blind). Registration can act as a passport to expert help and sometimes to financial concessions.
Low vision assessments and making the most of your sight
A low vision assessment can explore how to make the most of your sight. This may mean making things bigger, using brighter lighting or using colour to make things easier to see. Your GP, optometrist (also known as an optician) or ophthalmologist (also known as a hospital eye doctor) can refer you to your local low vision service for an assessment. You can also find out tips for making the most of your sight by downloading our guide:
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.
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