Treating nystagmus

Congenital nystagmus simply means nystagmus which is apparent in the first few weeks or months of life. Acquired nystagmus can occur at any time. At least 1 in 1,000 babies are born each year with nystagmus, whilst many more people acquire nystagmus at any time after early infancy.

Nystagmus itself cannot currently be cured, but some underlying conditions can be treated, especially childhood cataracts and strabismus, and there are therapies for some neurological conditions. It is very important to ensure that any sight difficulties which can be corrected by prescription glasses or contact lenses, such as short sight, long sight and astigmatism, are addressed. The nystagmus will not be affected, but the eyesight will be the best it can be.

Researchers around the world are looking at different aspects of nystagmus with the aim of developing better diagnostics, treatments and therapies, prevention and cure.

A lot of this work still focuses on how the eye movements are controlled and the understanding of this is still far from complete. It is hoped that as research continues in this field more effective treatment options will be available for people with nystagmus.

Drug treatments for nystagmus

As the understanding of nystagmus continues to grow, various drugs are being used to manage the condition. Botulinum toxin injections have been shown to help some people with the acquired form of nystagmus associated with multiple sclerosis, though these are not usually effective in people with congenital nystagmus.

The drugs gabapentin, baclofen and memantine have also proved to have some success at reducing the effects of acquired nystagmus in some people and they are currently being trialled on people with congenital nystagmus. Sadly, they do not work for everyone and can have unpleasant side effects.

Surgical options

Some centres offer eye surgery to children and adults with nystagmus where there is a marked head turn due to a null point. The procedure involves detachment and reattachment of the eye muscles. As with any surgery, there are risks involved. The result is usually a more natural head position so that the patient can look straight ahead to focus on faces and objects and sometimes they report that their vision is clearer. Follow up surgery is sometimes needed to refine any correction. Some people perceive a slowing of the eye movements as a result of surgery, though this is thought to be anecdotal and could simply be due to the change in the position of the null point.

To read one family’s experience of Anderson Kestenbaum (‘null point’) surgery, please see our newsletter, here.

A summary of treatments

At the American Nystagmus Network conference in 2015, Dr Rebecca McLean from the University of Leicester gave an overview of the literature around non-surgical treatments that have recently been attempted with both congenital and acquired nystagmus patients and discusses treatment options weighed against various quality of life criteria.

Watch the ANN video.

The future

The Nystagmus Network UK is working closely with the UK centres of excellence for nystagmus research, where developmental work continues on better diagnostics, understanding and alleviation of the effects of the condition and, perhaps most importantly, genetics. Genetic testing and counselling are already available. It is thought that the way ahead for treatment and prevention lies in gene therapy.

Alternative therapies for nystagmus

Various alternative therapies have been tried by people with nystagmus and, although there is no scientific evidence that they work, some people say they have led to improved vision.

Relaxation techniques can help indirectly by reducing stress and helping people to stay calm. It has been found that, with both congenital and acquired nystagmus, the calmer and more rested a person is, the less the impact of their nystagmus on their sight and general well being. This can mean improved vision and a greater ability to focus. People with acquired nystagmus also find that the worst effects of oscillopsia are alleviated if they are free of anxiety, fatigue and stress.