Overview

Nystagmus is a condition characterised by the eye’s involuntary, rhythmic movements. These movements can be slow, fast, or both. They could be continuous or paroxysmal movements, in either one or both eyes. These movements can be horizontal, vertical or rotary, corresponding to side-to-side, up-and-down, or circular motions, respectively. Nystagmus typically causes reduced vision, impaired depth perception, and difficulty with coordination and balance.¹ 

The term nystagmus was derived from the Greek text nystazein, meaning ‘sleepy’, and nystagmos, which means ‘nodding’.¹ They reflect the repetitive, drifting or jerking eye movements seen in individuals with the condition. Within the British population, nystagmus is prevalent in approximately 2 in every 1000 people, which roughly equates to 160,000 people.² Nystagmus can affect individuals early in life or can be developed later in life. In infants, it is often linked to sensory eye conditions such as albinism or underdeveloped optic nerves.³ The cause may also be X-linked inheritance, meaning the gene causing infantile nystagmus is inherited from the mother.⁴ 

The progression of nystagmus over time is often determined by the specific form of nystagmus and the underlying cause of the condition. Management strategies vary across UK clinics, but are largely guided by the root cause of the condition. To improve visual acuity and reduce nystagmus symptoms, vision aids such as glasses and contact lenses are used. Medications may also be provided depending on the severity of the condition. In some cases, eye muscle surgery may be recommended to reduce head movement and irregular head tilting. There is no known way to prevent nystagmus from developing, but treating the cause can help a patient’s quality of life. Often, awareness, education and proper management can help individuals live well with nystagmus.³

This article will explore the following:

• The different types of nystagmus and their influence on prognosis
• The long-term outlook for individuals with the condition
• Key factors that affect the progression of nystagmus
• Current approaches to managing nystagmus

Types of nystagmus and their impact on prognosis

Congenital (infantile) nystagmus

Congenital nystagmus typically starts within the first 6 months of an infant's life. Often, the cause is unknown. However, in some cases, onset may be associated with other conditions, such as albinism, congenital retinal diseases or underdeveloped optic nerves.³ Another possible cause is genetics. Some forms of infantile nystagmus are inherited, meaning the condition is passed down through families.⁴

The most common type is known as X-linked infantile nystagmus, which is caused by changes in a gene passed through the X chromosome. As males only have one X chromosome, they are more likely to be affected, while females may carry the gene without showing symptoms. They are known as carriers as they carry the affected gene but do not present the condition. A known gene involved in this form is called FRMD7, and mutations found within this gene can disrupt normal eye movement control from an early age.⁴

Identifying the cause, especially when it is genetically caused, can help families better understand the condition and may also guide support for improving management strategies. Genetic testing is sometimes offered to the family if doctors suspect a hereditary form of nystagmus.⁴

Despite the cause, visual acuity in children with nystagmus ranges from normal to severely impaired. Head posture, vision quality, and symptoms can remain stable but may also change over time, depending on the underlying condition of congenital nystagmus. Patients with congenital nystagmus may notice slight improvements or reach a stable state over time. Vision aids like glasses and contact lenses improve some children's functional vision.³

Acquired nystagmus

Acquired nystagmus, on the other hand, develops later in life and is more commonly found in adults. Acquired nystagmus may be caused by eye, brain, or ear conditions. Alcohol or drug use may also contribute to its development. Spasmus nutans is a form of acquired nystagmus that occurs in children between the ages of 6 months to 3 years, but it is usually found to resolve on its own when the child reaches 8 years of age. Symptoms of acquired nystagmus include uncontrolled eye movements, shaky or blurry vision, dizziness, poor night vision, and balance and coordination issues. There is no known way to prevent nystagmus from developing, and patients rely on management strategies to cope with symptoms.¹

Long-term outlook

Nystagmus is most often a lifelong condition, and most people will continue to experience involuntary eye movements throughout their entire lives. Whilst the intensity of the movements may stabilise or may improve slightly over time, it rarely disappears completely. Vision in people with nystagmus can range from nearly normal to moderately reduced, but complete blindness is uncommon. Many individuals learn to adapt around their eye movements and develop their personalised strategies, such as finding the null-point where they feel their nystagmus lessens and helps their vision slightly.³ 

With the right support, nystagmus does not prevent the possibility of an independent life. Early diagnosis and interventions, such as vision aids and vision therapy, make daily tasks easier and improve a patient's confidence. Regular check-ups help monitor any changes in vision or head posture and ensure that treatments remain effective throughout their life. Although nystagmus can present challenges for work, school or driving, many individuals find that with the right adaptations, they can pursue the careers and hobbies they enjoy.³

Key factors affecting prognosis

The prognosis for individuals with nystagmus can vary from person to person. There are some key factors which can determine the way the condition develops over time and how much it will influence daily life.

One of the most important key factors is the age of onset. Nystagmus that appears in infancy is more likely to follow a more stable and predictable course. In contrast, acquired nystagmus, which develops later in life, may be a sign of an underlying health issue and often requires further investigation and research.³

Another important factor is the underlying cause. If nystagmus is being accompanied by a condition like albinism, underdeveloped optic nerves or X-linked mutations, this is going to implicate both the visual outcomes of the patient and the tailored management strategies. In acquired cases, causes like brain injury, multiple sclerosis, or inner ear problems may also play a role.²

Another key factor is the type and severity of the eye movements. Some people have constant, strong and active movements, while others have milder or occasional symptoms. The presence of other visual problems can also lead to further reduced vision.^2,3

The response to treatment and support can also impact long-term outcomes. People who receive early diagnosis, regular eye care, and the right visual aids often have better results in terms of vision and quality of life improvements.³

Management strategies

At present, no treatment can cure nystagmus. However, there are a few ways of controlling it and improving daily life. Treatment usually depends on the form and severity of nystagmus, its cause, and the extent to which it affects a person’s vision and comfort.⁵

Vision support

Correcting any underlying vision problems is an important step when creating a management plan for nystagmus. Glasses or contact lenses can help improve overall clarity, although they don’t stop the eye movements themselves. Some people find that contact lenses are more helpful than glasses, as they both provide clearer vision and help stabilise their gaze. In some cases, prism lenses are used to help reduce any abnormal head posture patients may develop by guiding the eyes toward a position where nystagmus is less noticeable. Large-print materials, magnifiers, and extra time for reading or exams also help, especially during childhood.⁵

Medical interventions

There are a few medications that patients may be referred to, such as gabapentin, memantine, or baclofen, that have been used to reduce symptoms in certain cases, particularly in adults who have developed acquired nystagmus. These are usually only tried if the movements are causing significant problems like dizziness or visual instability. Not all types of nystagmus respond to medication, so this is not the standard treatment course for everyone.³

For patients who develop an abnormal head tilt in an attempt to see better, surgical interventions can be offered to realign the position of the eye muscles. One of the most commonly used procedures is the Kestensenbaum-Anderson surgery, which attempts to reposition the eyes closer towards the null point so that the patient no longer needs to turn or tilt their head to stabilise their vision. However, surgery does not cure nystagmus; it only improves comfort and ease of seeing in some extreme cases.²

Therapies and training

Therapies and specialist support can help infants, children, and adults diagnosed with nystagmus manage their day-to-day life with more ease. Eye exercises, rehabilitation, and referrals to low vision services can all be adapted to improve nystagmus conditions. Educational support is especially important for children, who may benefit from teachers trained to support visual impairment and access to assistive technologies in school.^2,3

Lifestyle and ongoing care

People with nystagmus may need regular check-ups to monitor their vision and overall eye health. Managing related conditions like albinism or neurological disorders can also play a role in treatment. Emotional support is equally important, as living with visible eye movements, which often also affects head positioning, can affect confidence or social experiences. Support groups, online communities and local services can help individuals and families feel less alone and be better informed.³

FAQs

Is nystagmus permanent?

Yes, nystagmus is a lifelong condition. Although the symptoms can be found to improve and settle down over time, the eye movements do remain.

Is it safe to drive with nystagmus?

This depends on the individual’s level of vision. The conditions for driving are the same for individuals with or without nystagmus. Some people may not meet the legal requirement for driving due to poor eyesight, while others will meet the requirements. An eye specialist can provide proper guidance for this situation.

Can nystagmus get worse over time?

In most cases, especially in infantile nystagmus, the condition remains stable and can be found to improve with age. However, if it develops later in life, i.e., acquired nystagmus, the cause needs to be identified to determine the prognosis of the condition.

Summary

There is no cure for nystagmus, but there are a couple of methods that can be used to treat the condition. In the majority of cases, vision can be improved with the assistance of glasses, contact lenses, or prism lenses. Certain patients are prescribed medication like gabapentin or baclofen, although the latter two are generally only prescribed for acquired nystagmus. Surgery can be used to reduce any abnormal head position, but it will not stop the eye movements from happening. Low vision and education support, and routine eye exams must be used to improve the quality of life. Emotional and social support is also crucial in helping individuals adapt confidently to the condition.