The logo of the Landmark Trust

Our weekend away

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.

Late last year the Nystagmus Network applied on behalf of members of our AN and Oscillopsia forum, thinking this would be a lovely chance for them to meet up in person and share quality time in a relaxed setting. Our bid was successful and we have been offered a lovely long weekend stay this March.

Eight people drawn from the forum will travel to their destination and enjoy getting to know each other in person in elegant surroundings.

The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus in March 2020. 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 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].

Adults chat together

Notes from the January forum for adults living with CN

It was so wonderful to see and hear people exchanging experiences and tips on Tuesday evening, 26 January (morning for those who joined us from New Zealand!). 

Here are just a few notes from our discussions.

Jigsaws online

There are lots of websites offering jigsaws to do onscreen. I tried can change the background and make the image bigger, but obviously you are better placed than I am to road test whether it is fully accessible for you.

Colour by numbers online

One of our members recommended Happy Colour. You can find this on the Apple app store or on Google Play.

Audio description for TV

There’s an article on the RNIB website about getting audio description on TV.

Tinted glasses – yellow, brown or grey?

Following a little internet research on coloured lenses for glasses, it seems that yellow tinted glasses, whilst reducing glare, can actually reduce visual acuity and 3D vision, so probably not ideal for people with nystagmus. They seem to be promoted to aid night driving! The difference between grey and brown lens tints seems to be that there is less colour distortion with grey. It’s definitely best to seek professional advice from an optician.

Blue light glasses

Lenses to counter blue light from screens are widely available. I found this article by Specsavers. It includes this quote from The College of Optometrists: ‘The best scientific evidence currently available does not support the use of blue-blocking spectacle lenses in the general population to improve visual performance, alleviate the symptoms of eye fatigue or visual discomfort, improve sleep quality or conserve macula health.’

Visual Crowding

You can read a recent blog post here from the Nystagmus Network about Vijay Taylor’s recent research into the nystagmus related phenomenon of visual crowding (the challenge of picking out a single object or face). The post contains a link to the online publication of Vijay’s PhD paper.

Enlarging your cursor

There’s an article on Ability Net taking you through steps to enlarge your mouse on Windows 10. Apple have a similar item on their website on enlarging the cursor on a MAC.


The apps mentioned to help with finding your way around on foot are Soundscape and Where’s the Path. Find them in the app store.

Looking after yourself

There are some excellent tips on staying safe and protecting your mental health and wellbeing on the Retina UK website.

Keeping Active

Whilst we remain locked down and the weather is cold, there are some great tips for indoor exercises and activities on the NHS website.

Staying connected – our Group Gmail

The Nystagmus Network offers forum members the chance to join a Gmail group for people with CN so they can keep in touch with each other more easily by email between zoom calls.

Facebook Group

Finally, please do join the Nystagmus Network Facebook group for adults living with CN. It’s there for you to help you connect with others.

If you would like to receive an invitation to the next forum, please contact us.

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.

Adults chat together

Nystagmus Networking

With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can.

Keeping you connected

Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month.

For parents

There will be a virtual parents’ forum at 8pm on Tuesday 12 January. Share experiences, make new friends. This session will focus on homeschooling and keeping little ones happy, engaged and learning at home. This session will be a zoom chat. Everyone welcome.

Please contact us to join. 

For adults with congenital nystagmus

There will be a virtual Congenital Nystagmus Forum for adults at 7pm on Tuesday 26 January. Share experiences, make new friends. This session will focus on treatments available around the world. This session will be a zoom chat. Everyone welcome.

Please contact us to join. 

For adults with acquired nystagmus

There will be a virtual Acquired Nystagmus Forum at 5pm on Monday 18 January. Share experiences, make new friends. This session will focus on virtual hospital appointments and progress with our AN data bank. This session will be a zoom chat. Everyone welcome.

Please contact us to join. 

A group of parents and Nystagmus Network volunteers.

Come along to the forum

As part of the Nystagmus Network virtual Open Day 2020 we will be hosting a series of zoom chats on Saturday 3 October.

For parents

There will be a virtual parents’ forum at 2pm. Share experiences, make new friends. This session will be led by Marie Travers, herself the parent of a child with nystagmus. 

Please contact us to join. 

For adults with congenital nystagmus

There will be a virtual adults’ forum for people living with congenital nystagmus at 3pm. Meet others, make new friends, share experiences. This session will be led by Daniel Williams, an expert in accessible employment who himself lives with sight loss.

Please contact us to join. 

For adults with acquired nystagmus

Professor Chris Harris from the Royal Eye Infirmary, Plymouth will be answering your questions on Acquired Nystagmus and Oscillopsia at the virtual adults’ forum for people living with acquired nystagmus at 4pm. 

Please contact us to join. 

Keeping you connected

The Nystagmus Network is working hard to bring you closer together with other people living with nystagmus or with parents and carers of children and young people who have the condition.

We are now running online support groups for adults with congenital or acquired nystagmus and for parents and carers. You can join zoom chats or stay in touch by email until it’s safe for us all to meet up face-to-face again.

Find out about virtual groups here

The Nystagmus Network plans to set up a range of regional and local nystagmus networks as soon as it’s safe to do so.

We already have a vibrant local group in the Greater Manchester area.

If you’d like to join a local nystagmus network or volunteer to run one in your area, please contact us today.

Find out more about local groups here