Nystagmus

Nystagmus (pronounced nis-tag-mus) is a condition that causes uncontrolled, constant rapid movement of the eyes. This movement is likely to cause vision problems. The underlying cause of nystagmus is often neurological, involving how the eye and brain work together to produce vision.

Nystagmus can occur in infants and adults, although the causes may be different. It is a common cause of vision impairment in children, who will benefit from early help and support to make the most of their eyesight. For adults, nystagmus can be a sign of another underlying condition that needs treatment. 

Nystagmus causes

The causes of nystagmus can vary depending on whether you are born with it (infantile nystagmus syndrome) or develop it later in life (acquired nystagmus). 

Sometimes, in both children and adults, no underlying reason for nystagmus can be found. This is known as ‘idiopathic nystagmus’.

Causes of infantile nystagmus (which is also called congenital nystagmus) include: 

• A developmental issue with the eye or brain, or the way they interact.
• Genetics, as it can be hereditary.
• Other conditions, including albinism and Down’s syndrome.

Acquired nystagmus can be caused by:

• Neurological conditions, such as multiple sclerosis and stroke.
• Inner ear conditions such as Meniere's disease.
• Brain tumour
• Head injury
• Some prescription medications
• Alcohol and recreational drug use
• Vitamin B-12 deficiency

Nystagmus types

The brain and eyes work together to provide our ‘visual system’. If this doesn’t work correctly, it can lead to nystagmus. There are two main forms of nystagmus.

Nystagmus treatment

There isn’t currently a cure for infantile nystagmus, but a range of treatments can help manage the symptoms. Acquired nystagmus may improve if the condition that has caused it is treated.

Getting a nystagmus test 

If you notice changes to your vision or any of the symptoms of nystagmus, see your optician. They will be able to do a sight test and check how the eyes move.

Eye tests and nystagmus

The NHS recommends having regular eye tests every two years. People with a family history of eye conditions and risk factors such as diabetes should have them more often. Opticians can diagnose a range of eye conditions before noticeable symptoms begin. 

Nystagmus diagnosis in children

If you suspect your baby has signs of nystagmus, speak to your health visitor or GP. They can refer your child for assessment by an ophthalmologist (eye doctor) and orthoptist to confirm a diagnosis. 

Tests to diagnose nystagmus are painless and can be adapted for children so they won't be distressed. The ophthalmologist will monitor the eye’s movements and aim to confirm the type of nystagmus, including the direction the eyes move and whether they move together or independently of each other.  

Further tests might be needed to find any underlying cause of nystagmus. For example, a CT or MRI can check for neurological causes. Children should also have an orthoptic assessment. Understanding more about why your child has nystagmus can help doctors give you a better idea of the effect it's likely to have on their vision.

Nystagmus diagnosis in adults

Adults may notice the symptoms of acquired nystagmus themselves. See your GP or optician if you experience symptoms such as seeing things moving despite them being still, accompanied by dizziness, coordination problems, and sometimes nausea. Occasionally the condition can be picked up by your optician at a routine eye test.

You may see an ophthalmologist for investigation to try to find the cause. They might refer you to a neurology department for further tests, which could include MRI or CT scans, blood, and genetic tests. You could also see an Ear, Nose, and Throat (ENT) specialist to assess the condition’s impact on your balance and coordination.

Getting diagnosed is the first important step, but what happens next? Find out more about living with nystagmus and the support available for children and adults.

When to get medical advice

Speak to your health visitor or GP if your baby isn’t fixing their eyes or following objects as expected between six weeks and three months old, or if their eyes seem to be moving all the time. 

Adults who experience nystagmus symptoms, such as things around them appearing to move even when still (‘oscillopsia’), issues with balance, dizziness, and nausea, should speak to their GP. It’s important to get help, especially as nystagmus can be caused by an underlying condition that may require treatment.

Living with nystagmus

Children with nystagmus are likely to have a visual impairment, but this doesn't mean they won't see at all. They'll benefit from help at an early age to learn about managing their symptoms and to ensure their visual development is supported in the right ways.

Living with nystagmus can have its challenges, but with the right support, children and adults will be able to live independently.

Frequently asked questions