Nystagmus
What is nystagmus?
Nystagmus is when a person's eyes move around, and they cannot control it. The eyes can move back and forth or up and down. These movements are often quick and can happen in different ways when looking in different directions.
What are the different types of nystagmus?
There are two main types of nystagmus: you are born with it or you get it later in life.
Nystagmus that you are born with starts in babies, usually between 6 weeks and a few months old. If it starts after 6 months of age, it means you got it later in life. Doctors may need to do tests like a brain scan to find out why the eyes shake.
Nystagmus you are born with can be split into two groups: children who cannot see well and children who can see normally.
What ocular/medical conditions are associated with nystagmus?
- Nystagmus can be linked to these problems:
- Cloudy lens in eye (Cataract)
- Eyes not lined up together (Strabismus)
- Lazy eye (Amblyopia)
- Problems with the nerve to the eye (Optic nerve hypoplasia)
- Being born without good vision (Leber’s congenital amaurosis)
- Missing the colored part of the eye (Aniridia)
- Being born without color vision (Achromatopsia)
- Needing very strong glasses (Severe refractive error)
- Missing parts of the back of the eye (Coloboma)
- Other problems with the nerve to the eye and back of the eye
- Having very light skin and eyes (Albinism)
- Taking certain medicines
- Not getting enough vitamins
- Problems from drinking alcohol during pregnancy
- Getting hurt
- Inner ear problems
- Stroke (most common cause in older people)
- Brain tumor (rare cause)
When babies have trouble seeing, their eyes cannot send clear messages to the brain. The brain needs clear messages from the eyes to learn how to keep the eyes still. Things that cause this include cloudy lenses in the eyes, problems with the nerve to the eye, being born without color vision, having very light skin and eyes, missing parts of the eye, and needing very strong glasses. All these problems cause bad vision in both eyes from birth. This type of nystagmus that you are born with often starts at 2-3 months old and lasts all through life.
The other type of nystagmus you are born with happens in babies who can see normally or almost normally, but the brain has trouble controlling eye movement. This type is more common, but doctors don't know what causes it. This type is called idiopathic infantile nystagmus (IIN).
Nystagmus you get later in life can start as early as 6 months old but can also show up later, even in adults. It may happen because of brain problems, medicine side effects, or other serious problems. Doctors may need to do tests like a brain scan, blood tests, or other tests to find the cause.
Anyone with new nystagmus should visit an eye doctor and their regular doctor to look for a cause.
Is nystagmus inherited?
Most nystagmus happens by chance in a child, and it doesn't usually run in families. However, some families have more than one person with nystagmus. This has helped doctors find genes that can cause nystagmus. These genes can be passed down in different ways from parents to children.
HOW DOES NYSTAGMUS AFFECT A CHILD'S VISION? WHAT WILL THEIR VISION BE LIKE AS AN ADULT?
The answer depends on what type of nystagmus the child has.
If the child has nystagmus because they cannot see well, their vision may be poor because of the eye problem they were born with.
If the child has the other type of nystagmus (IIN), their vision can be good, often 20/50 or better. Regular eye tests can help doctors figure out if other eye problems are making the child's vision worse, and what level of vision they can expect as they get older.
WHAT DO PEOPLE WITH NYSTAGMUS ACTUALLY SEE?
Children with nystagmus see the world like other children, but it might be a little blurry. The surprising part is that the world does not look like it is shaking to them. However, adults or children who get nystagmus later on in life often feel that the world is "shaking" or moving.
Why do people with nystagmus tilt or turn their head?
Sometimes nystagmus can get worse when looking in a certain direction. For example, a child may notice that their vision is worse (and the eyes shake more) when they look to the right, and vision is better (and the eyes shake less) when they look to the left. To make the shaking less and to see better, children may tilt or turn their heads. This is called a "null point," and it is the position that helps them see most clearly. Not every child with nystagmus has a "null point", but if they do it is a good sign that they have found the best eye position to see clearly. The child should not be made to turn their head straight or to the other direction to "balance" things out - this only makes their vision blurry.
Can nystagmus occur in one eye?
Yes, but rarely. More often, nystagmus can look like it is only in one eye, but it is usually in both eyes, with one eye shaking more than the other. This can be linked with brain or eye problems and often needs tests like a brain scan. One example of one eye shaking much more than the other is a condition called "Spasmus nutans." This condition has three classic signs: nystagmus, head bobbing or nodding, and a head turn or tilt.
Can surgery make nystagmus go away?
Sometimes eye muscle surgery may be needed to help an abnormal head position or to make the shaking of the eyes less. While surgery can help the head turn and improve vision, it does not fix the nystagmus or stop the irregular eye movement.
WHAT OTHER TREATMENTS ARE AVAILABLE FOR NYSTAGMUS?
The best treatment depends on what is causing the nystagmus. For example, if the child needs glasses because they need a strong prescription, then glasses can help. Some children with nystagmus can see better with contact lenses.
Medicines can sometimes help control the shaking, but they may have side effects which can be worse than the nystagmus itself. Botulinum toxin (botox) can be helpful for some people with severe symptoms.
WHERE CAN I FIND MORE INFORMATION ABOUT NYSTAGMUS?
SUMMARY FOR THE PATIENT OR CAREGIVER:
Nystagmus is when a person's eyes move around and they cannot control it. The eyes can move back and forth or up and down. Some people are born with it, and others get it later in life. There are different types of nystagmus, and how it affects vision depends on what causes it. Some people with nystagmus may need glasses or contacts, while others might need surgery to help with head positioning. Children with nystagmus (IIN) can often see well enough to do normal activities, though their vision might be a little blurry. If you or your child have nystagmus, it's important to visit an eye doctor to find out what's causing it and get the best treatment. Most children with nystagmus can live active lives.
Updated: 06/2025
#Conditions