“Our Zoom calls and meet-ups are one of the few places I can be the ‘new me’ and is the best care plan I have!”
After over forty years of trouble-free vision, out of the blue, the world I saw started to change; vertigo-like symptoms, blurred or double-vision, tinnitus, migraines etc. Sporadically at first, then over the years becoming more and more persistent and prevalent. Opticians and GPs couldn’t identify a cause and my descriptions of seeing things ‘moving’ couldn’t help. This is a very difficult condition, as a sufferer, to describe.
A long wait for a Neurology assessment resulted in (two years after symptoms started) my Acquired Nystagmus diagnosis, quickly followed by the words, “there’s no cure”. The shock of that! I’d never even heard of Nystagmus, now I have it and there’s no cure? Many tests ensued (long waits for these too) and referrals to clinicians such as Ophthalmologists and Orthoptists (sorry, who)? One clinician told me, “something has flipped and we don’t know what or why!” A refreshingly honest assessment, no assumption, no presumption or mis-diagnosis.
Fast-forward several years…my symptoms, still with no hard evidence of cause, are permanent and fluctuate in severity throughout any day. Extra levels of stress, light levels, glare and illness etc. exacerbate everything, making this incredibly debilitating condition worse. By far the trickiest symptom for me is oscillopsia. I see everything as moving: horizontally (as if I have just stepped off a roundabout), vertically (like fast-moving credits at the end of a film), or sometimes both at once! Panic and nausea are frequent companions. My perception of what I see often massively hinders my ability to move around, focus on objects or people properly, read, write, balance and do the jobs and activities I could previously do. I had to leave my job after struggling for many years and not receiving the workplace support I needed to continue. I didn’t have the energy to fight my own cause anymore. Imagine living like this…forever? There are videos of oscillopsia simulation on YouTube, which I would urge you to see, as this could happen to anyone at any time (not to scare but to inform). I have a long list of aids which assist somewhat with the impacts, including trials on drugs which are non-specific to my condition – with varying levels of success versus side-effects.Â
One huge help is knowing there are others who are going through this and can connect with each other via the Nystagmus Network, who I was fortunate enough to be told about in a random conversation with a workmate (sadly not from any clinician I had encountered). This has been a lifeline for me, knowing others who understand what this is actually like to live with; how it lowers your confidence, stops you from taking part in everyday activities you once enjoyed and can change your identity of yourself. I don’t feel like I fit into the life I had, so the work of the Nystagmus Network to support, connect and understand those who live with Nystagmus is invaluable. Many thanks to the well-informed and dedicated team for all your work. Our Zoom calls and meet-ups are one of the few places I can be the ‘new me’ and is the best care plan I have! My symptoms quieten in the right environment and with the right people.
To join our monthly Zoom get togethers for people living with AN, please email us at info@nystagmusnet.org
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