Acquired Nystagmus and Oscillopsia Forum

Notes from the June 2021 meeting
Notes from Adults’ AN and Oscillopsia Forum – June

Thank you to everyone who joined us for the Nystagmus Network June Acquired Nystagmus and Oscillopsia Forum.

Hospital Appointments
We compared notes, good and bad, about the way we had felt
during appointments at various hospitals and clinics and agreed
we hoped to be treated as a ‘whole person’ rather than a list of
symptoms. We also reinforced the right of patient choice and the option to go back to the beginning, seek a second (or even third)opinion through a GP referral to another hospital or specialist. Treatments. We explored experience of various treatments, including Botox injections (to still muscles, temporary effect lasting 3-6 months) and various muscle relaxant drugs including Gabapentin and Baclofen - Gabapentin, in particular, can have serious side effects
on mood and mental health for some).

Difficulties Walking
Members of the group described walking challenges including the challenges of uneven ground, as well as a tendency to fall forward or veer to one side.

The effects of stroke on sight were discussed at some length as
was the difficulty, sometimes, of distinguishing which symptoms
or side effects can be attributed to another medical condition and which to nystagmus. As an aside, Sue will be giving a presentation at the Aniridia European Conference at the end of July entitled ‘Is it me or is it my nystagmus’ in which she will be looking at the wider social and emotional aspects of  nystagmus. We will make sure you are able to view this session.

Causes of Acquired Nystagmus
As head trauma or injury is a known cause of some cases of
Acquired Nystagmus, we speculated whether football or rugby
players were likely to be affected.

Much empathy was shown for those caring for people with
Acquired Nystagmus. They share the uncertainty and ‘not
knowing’ as well as shouldering the physical and emotional side
of support.

Nystagmus and Sleep
Fresh from our attendance at the Nystagmus Awareness Day
online presentation earlier in the day ‘Nystagmus and Sleep’ by
the research team at Circadian Therapeutics, we were keen to
share some thoughts on ‘sleep hygiene’ or having a regular
bedtime routine and discussed the team’s future research into
eye movements and sleep. You can contact the team directly here: Link to register your interest in the sleep survey:
Phone number: 01865 546582 (leave a message, they will call
you back)
Please do get involved if you can. The team are keen to hear
from more people with nystagmus experience.

Nystagmus – our perspective
We mentioned the new film now available, thanks to our friends
at the German Nystagmus Network. It features four adults talking about their experiences living with nystagmus and is, as far as we know, the first recording of a person living with Acquired Nystagmus. The film is in German but with English subtitles. You can view it here.

Notes from the Saddle
We’d like to share with you the triumph of one of our trustees,
Sam Jones, who last week completed the North Coast 500 cycling challenge, cycling 500+ miles in 8 days to raise funds for the Nystagmus Network. Sam has congenital nystagmus and is the reason the charity was founded, in 1984 by his mother, Vivien. You can enjoy the highs and lows (and the navigating difficulties!) of Sam’s trip in video and photographs on our website here.
Finally, don’t forget to download your digital events programme
for Nystagmus Awareness Day.

Date of next meeting: Wednesday 21 July 5pm

Take care and I look forward to seeing you next time.
Happy Nystagmus Awareness Day!
Best wishes


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