Notes from the Acquired Nystagmus and Oscillopsia Forum – September
Thank you to everyone who joined us for the Nystagmus Network Acquired Nystagmus and Oscillopsia Forum this month. It was lovely see you all again and especially to be joined by some new faces and by our friends from the US.
Is it my AN or Oscillopsia?
Members of the group discussed their symptoms and the effects on their vision and tried to untangle which were attributable to the nystagmus itself and which to oscillopsia, or indeed another condition or cause.
Several people reported disturbed sleep, or difficulty getting to sleep, which in turn can make the symptoms of AN and Oscillopsia worse. The charity is supporting recruitment to a Sleep Study by Circadian Therapeutics. The team, led by Dr Iona Alexander, is investigating the effect of vision impairment on sleep patterns and they are particularly interested now to hear from people with eye movements. You can find out more about this research here: https://blindsleepstudy.com/
There is also a recorded presentation by Iona as part of Open Day.
The clinical options
As usual, there was a great deal of interest in hearing about each other's experiences of various drug treatments, including Baclofen, Memantine and Gabapentin, low dose antidepressants and also Fampyra (Fampridine), currently not licenced for use with AN in England and available only as part of a clinical trial. In Scotland Fampyra is licenced and also in the US. The unpleasant and in some cases mood altering side effects of some of these drugs were shared.
A straw poll revealed that barely half the group are aware of the cause of their nystagmus. In some cases it is thought to be genetic. This can be investigated, though it can be a lengthy process. The not knowing why can add to the negative effects on wellbeing.
Open Day this Saturday
Maria Theodorou, Consultant Ophthalmologist at Moorfields Eye Hospital, London, has recorded a presentation on the optical, clinical and surgical treatment options for vertical Acquired Nystagmus. She also touches on the clinical trial of Fampyra in her talk.
The presentation is available to view only to people who register to attend Open Day 2021. Once registered you will receive a digital programme which contains the links to all the pre-recorded sessions, including Maria's, as well as Zoom invitations to the live sessions on the day.
If you haven't already, please register to join Open Day here: https://www.eventbrite.co.uk/e/nystagmus-network-virtual-open-day-2021-registration-160962008701
I look forward to seeing some of you again at Open Day and of course at our October meeting.
Till then, take care.
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