nystagmus networks – Nystagmus Network

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.

Symptoms

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.

Therapies

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?”

Pillows

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.

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 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.

Nystagmus Network launches Nystagmus Youth

As part of the Nystagmus Network virtual Open day 2020 and as a new initiative to get younger people involved with the Network, the charity is creating a new online community for young people living with nystagmus.

This community begins on Instagram and is a place for young adults and teens to share their stories, read about others with nystagmus and feel empowered about their lives.

They can get top tips, access useful content that is shared with the main Network and see funny and relatable posts.

Mainly, they can find out about other people their age growing up with nystagmus and see that they are part of a huge community.

There will be regular posts to share events as well as interactive stories for you to ask questions and get answers from experts and your peers.

It’s an accessible place for everyone.

Please do share this with any young people you know, follow us at @NystagmusYouth and message us if you’d like to be involved in sharing your own story.

This account was set up by two Nystagmus Network volunteers: Ahrian Taylor and Jaina Patel.

Follow @NystagmusYouth here

Your nystagmus research questions answered – question 3

We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.

Your questions were answered by

Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton who has been researching nystagmus for around 15 years since studying nystagmus for his PhD. He runs specialist nystagmus clinics and researches primarily cause and diagnosis and treatment of albinism since around 50% of his nystagmus patients seem to have albinism.

Helena Lee (HL), a Consultant Ophthalmologist at University of Southampton and a nystagmus researcher, currently working on developing a treatment for albinism.

Question 3: Would it cause more problems to stop the eye wobble?

(HL) We have very poor understanding of nystagmus, why it occurs and why it’s happening in the first place. We do know that for adults who acquire nystagmus, it’s horrendous because they haven’t compensated for it. The entire world moves around them. So for them it is worthwhile stopping the wobble, because their visual system has developed to work with eyes that are steady.

In some children with nystagmus, we know that when we perform certain kinds of surgery for their null point so that their eyes can be more steady, it does seem to improve their visual function. Just this experience would seem to suggest that reducing the wobble helps to some degree. Eliminating the wobble entirely is a difficult one to answer, because in how many people have we managed to do this? And how can we ask them whether they’re better off with or without it?

(JS) I would agree. I think it’s unlikely that, if we stopped it, it would make visual function worse. People have done experiments with gaze contingent visual tracking so that they look at a screen and wherever their eye looks the image moves to it, so in theory they are simulating removing the nystagmus. It does seem to help with speed of seeing. They haven’t reported having any specific problems, but obviously that’s a simulated scenario. I think it’s unlikely.

The question probably arises because we’ve talked for years about nystagmus being a compensation mechanism for something going wrong. One way of thinking about it is that it’s not an effective compensation. It doesn’t really achieve what it’s trying to achieve, as far as I’m aware.

We will publish more of your questions and the answers Jay and Helena gave over the next few days.

The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.

Your nystagmus research questions answered – question 2

We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.

Your questions were answered by

Question 2: Why isn’t there a focus on cure?

(JS) Sometimes people’s focus changes from cure to what we can do right now to help people in education and so on. I think the honest answer is that all of these things need to be addressed, often by very different groups of people. There are some quick wins and some slower ones. It’s a multi-team effort. It doesn’t mean that one team is more important than the other.

For quite a while we have said that diagnosis is more important at the moment, because it’s very easy to test drugs and do clinical trials, but actually you’re never going to get funding for it and it’s not very likely to work unless you have a very good argument as to why it will work and for that you have to have specific groups of patients.

Cure has lagged behind, but we are getting there thanks to Helena’s work on L-Dopa. And there are a few other things. But if there’s one thing we should focus on, for me it’s getting to the bottom of what’s causing it.

We will publish more of your questions and the answers Jay and Helena gave over the next few days.

The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.

Your nystagmus research questions answered

We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.

Your questions were answered by

Question 1: Will there ever be a cure for nystagmus?

Answer: (JS) Nystagmus is the result of a lot of different things going wrong. Traditionally, to try and find a cure for anything you really need to know what that thing is that has gone wrong and quite often it requires very different treatments. It’s a bit like trying to find a cure for stomach ache. You’re never going to find a cure that treats all types of stomach ache. You need to find out what the cause is and then look at lots of different treatments.

There is also the opposite way of looking at it. If nystagmus is the final result, is there something that can be done to stop the eyes from ‘wiggling’. Will that actually help? In some situations and for some people I think it would. For instance, if you’re an adult and you have acquired nystagmus and oscillopsia because your eyes are moving all the time, that is horrendous. So if we could find a cure for that part you might say you don’t then need to know what the underlying cause is.

So there are different ways of looking at it, but I think a single panacea for nystagmus is very unlikely. I don’t think anyone is going to invent a pill which corrects all the underlying causes.

(HL) I would agree with that. It also depends on what you define as a cure. Is it getting rid of the wiggle entirely or is it to deal with some of the side effects of the nystagmus? We will be able to help with a lot of that in time. It’s just a question of dealing with each problem as they come along and dealing with it on an individual basis. Some people may not be bothered by the wiggle but by the visual function. Some people care more about how their eyes look.

But Jay and I remain optimistic that by the end of our careers we will have found some sort of cure for everything that causes nystagmus.

(JS) An added complication is that there are different types of albinism which have their own causes, so one type of treatment might be appropriate for one type of albinism and not for another. The final level of complexity is that things often depend on who you are and where you live. For example, if you live in sub-Saharan Africa the colour of your skin may be the most important thing to you if you have albinism. If you live in Scandinavia or Europe, the colour of your skin may be way down the list and the vision or the nystagmus may be more important to you.

Nystagmus researchers have for a while talked about developing a kind of toolkit which can be added to. For example, for other conditions you have lots of different tools which can be used in different scenarios. That’s the end point we would really like to get to. It’s going to be slow. It will take a long time. There will be advances in some areas, whereas others are falling back a bit. It’s a levelling process. It’s going to take a while.

We will publish more of your questions and the answers Jay and Helena gave over the next few days.

The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.

Manchester meet up

The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon.

Nystagmus Network trustee, Marie Turnbull will once again be your host .

We look forward to welcoming back the families and adults who came along last time and to seeing some new faces, too.

New members are very welcome. For details, please contact us today.

Support for adults with nystagmus

Whether you’ve had nystagmus all your life or have acquired it more recently, the Nystagmus Network is here to support adults with the condition, with information, research updates, news, meetings, membership and more.

Or why not get involved with one of our fundraising activities?

Our new local groups

Our very first regional nystagmus network is already up and running in Manchester, hosted by our trustee, Marie. There are lots more local groups to come in 2019, giving more and more people the opportunity to meet up and share information and experiences. If you would like to join one of our new groups, or would like to volunteer to host, please contact us today.

Thank you.