People sitting together at a table enjoying breakfast.

Our ‘wonderful’ Landmark Trust weekend

Members of the Nystagmus Network acquired nystagmus and oscillopsia forum recently enjoyed a weekend away courtesy of the Landmark Trust ’50 for free’ programme.

The group stayed at the splendid Georgian property, Elton House, in the centre of Bath, where we enjoyed all the comforts of modern living and all the attractions of the city right on our doorstep.

A member of our group spoke for all of us when she said: “Our recent weekend in Bath was a wonderful experience and a chance for us to meet each other in person for the first time. It enabled people to be themselves without judgements being made about missed steps or where we sat in a restaurant. The group was such a success, you wouldn’t know we had only just met!”

Another group member said: “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much to the Landmark Trust.”

The picture shows group members enjoying brunch together at a local deli

The logo of the Landmark Trust

Our Landmark weekend

This Friday to Monday Sue and members of the Nystagmus Network acquired nystagmus forum are spending time together in a beautiful, historic building, courtesy of the Landmark Trust. This is the first time everyone has met in person since they began getting to know each other online in March 2020. We look forward to getting better acquainted in relaxed and elegant surroundings.

Each year the Landmark Trust offers a limited number of stays in their historic properties to small charities. The scheme is called 50 for free.

The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus at the beginning of the pandemic. The forums have been very popular and continue to flourish with some lasting friendships made along the way. We like to think of them as friendly, informative and a little haven away from worries about the outside world.

If you would like to join one of our online get togethers, please contact us by email at [email protected].

An adult is having her eyes tested.

Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia

Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Acquired Nystagmus and Oscillopsia.

Patsy’s story, a case study of AN and Oscillopsia

Our lovely volunteer, Patsy introduced the work she has been doing, putting together a case study of her AN and Oscillopsia journey to support the research work led by Professor Chris Harris at Plymouth.

We will share the case study documents with this group as soon as we can.

The Nystagmus Care Pathway

Following a recent meeting of NUKE (Nystagmus UK Eye research group), there was a brief update on progress with the  Nystagmus Care Pathway. We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon. Sadly, these will not yet encompass AN in adults and children, but the plan is to make this NUKE’s next focus, with the support of colleagues in neurology.


There was more discussion of drug therapies available. Baclofen, Memantin and Gabapentin are the most commonly offered drugs. These are all muscle relaxant types. Some people find them effective, for both AN and CN, whilst others find the side effects compound their symptoms of nausea or dizziness.

There are now two members of the group being treated with Fampyra (fampiridine, also known as aminopiridine). Each is experiencing slightly different, though generally beneficial effects. This treatment remains on trial and unlicensed in England.

Those wishing to be referred to Moorfields Eye Hospital, London where our two friends are under the care of Maria Theodorou, must make a request for a referral through their GP.

Gmail group

Attendees were offered the chance to join a Gmail group for adults living with acquired nystagmus and oscillopsia so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact them via this group to invite them to future meet ups and keep them posted on nystagmus news and updates.


Please do join the Nystagmus Network Facebook group for adults living with AN and Ocillopsia. It’s there for you to help you connect with others.

adults chatting at a conference

Notes from the January AN/Oscillopsia Forum

With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia.


It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far beyond the eye sight (challenges reading small, and even larger print, on screen or on the page, compromised peripheral and 3D vision) but also include fatigue, dizziness, discomfort and difficulty sleeping, and generally feeling we are not ourselves. If you haven’t found it already, please see our general information booklet on AN and our guide, written by people who have nystagmus, Nystagmus is ….

Treatments – drugs

The most commonly used drugs, at least in the UK, are gabapentin, memantin and baclofen. These are all of the muscle relaxant type and available on the NHS. They work well for some people, whilst others experience varying side effects which can be similar to or even worse than the effects of AN itself, such as nausea, tiredness and, in some cases, depression.

Two of our group members are currently being prescribed Fampyra or Fampiridine which is part of a trial under the NHS. We are grateful to them for so generously sharing their experiences with us. This drug has been shown in the US to improve symptoms of downbeat nystagmus and was originally used to address difficulties with walking in ataxia and MS patients. You can read more about Fampiridine on the MS Trust website here.


Several members reported on therapies they had heard about, had been suggested or that they had tried, including cranial osteopathy, atlas orthogonal chiropractic and kore therapy. Please speak to your doctor before embarking on any therapy or exercise routine, even neck stretches or yoga. You can read the experiences of Claire Entwistle, who has congenital nystagmus and describes all the various ‘alternative’ therapies she has tried in her book “What seems to be the trouble?”


Various people have tried a range of neck pillows, supports and braces to ease discomfort when sitting or sleeping. These will of course be very personal to the individual and you could end up buying something that isn’t suitable or doesn’t help. Turning an ordinary pillow on its side and giving it a firm karate chop through the middle before you lie your head in the dip, can help keep your neck flat and your head supported on both sides.

The Nystagmus Care Pathway

The charity is working alongside nystagmus clinicians and researchers to develop a Nystagmus Care Pathway whereby anyone diagnosed with the condition, wherever they are in the country, will receive the most appropriate diagnostic experience, treatment and signposting to further support and information. You can read a summary in a Nystagmus Network blog post.The post contains a link to the full article in the British and Irish Orthoptic Journal. Work continues to get the pathway adopted as good practice by the Royal College of Ophthalmology.

Group Gmail

We’d like to offer you the chance to join a Gmail group for people with AN and Oscillopsia so you can keep in touch with each other more easily by email between zoom calls. The charity will also contact you via this group to invite you to future meet ups and keep you posted on nystagmus news and updates. If you would like to join this group, please contact us.

Facebook Group

Please do join the Nystagmus Network Facebook group for people living with AN and oscillopsia. It’s there for you to help you connect with others.

We will be hosting another online get together soon. Please contact us for details.

A woman holds her head in her hands and appears o be in some discomfort.

Living with Acquired Nystagmus and Oscillopsia?

The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together.

If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome. 

At our recent virtual Open Day we were lucky enough to be joined by Professor Chris Harris, a leading UK expert in AN and oscillopsia at the Royal Eye Infirmary, Plymouth. Chris recorded a presentation for us, which you can view here and then took part in a live Q+A session with our group on 3 October.

Since then we have continued to reach out to more people living with AN and Oscillopsia so that we can support Chris in his research endeavours. We are gathering a sizeable ‘patient’ group together and are collating meaningful data on causes, symptoms, treatments (conventional and alternative therapies, helpful or otherwise) and evidence of the effects of these conditions on general wellbeing, including mental health.

We are also writing up and recording your stories and drafting a questionnaire to help us collect even more information.

All of this will enable Chris to strengthen his applications for further funding for research into these debilitating and often life-changing conditions.

If you would like to be included in invitations to all future zoom get togethers for people living with Acquired Nystagmus and Oscillopsia, please contact us here.

At our most recent online meeting we were joined by people with experience of new drug and surgical treatments.

Our next call will be in January when we will share an update on the work we have done so far in our evidence gathering.

If you would like to join our virtual AN support group, please contact us here and we will be happy to introduce you.

Please do help us with this exciting new project. We look forward to having you with us.

Chris Harris sits behind a microphone and prepares to speak.

Do you have Acquired Nystagmus or Oscillopsia?

We need you!

The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to investigate further Acquired Nystagmus and Oscillopsia.

If you have either or both, we’d love to hear from you. You can help us develop a further research study into these complex, life changing conditions.

We can also offer you support.

Please contact us today

Watch a video message from Chris here

Join our AN Facebook group here

An image shwoing the Nystagmus Network eye logo and the words Nystagmus Network Acquired Nystagmus and Oscillopsia Facebook Group, call 01427 718093,
Chris Harris sits behind a microphone and prepares to speak.

Chris addresses Acquired Nystagmus and Oscillopsia

Nystagmus researcher and clinician from the Royal Eye Infirmary, Plymouth, Professor Chris Harris, will be talking about the causes, potential treatment and his further research into Acquired Nystagmus and Oscillopsia at the Nystagmus Network virtual Open Day 2020.

You can hear this and all the other presentations by registering now for the Nystagmus Network virtual Open Day 2020.

Please register here to receive the programme

A woman holds her head in her hands.

A new article on oscillopsia

Many people who have acquired nystagmus experience oscillopsia from time to time. This is where they see a moving image of the world around them, rather than a still one. People with congenital nystagmus can also, occasionally, see objects moving around when they are not.

A new article, published online by Medical News Today, details some of the causes of oscillopsia, including, of course, nystagmus. It also details the diagnostic testing which can be carried out by the ophthalmologist when investigating the cause, describes the symptoms and mentions a few treatments which may be appropriate.

There is, sadly, no amazing new therapy to try, but the article does provide a useful summary.

Read the full article online by clicking here.