I’ve had Nystagmus as long as I had Ataxia. I find it kinda hard looking at a bright day. It really affects my depth perception with curbs and such. Healthy folks just do NOT understand it. Anyone have an idea how to explain it so they understand?
My mom has downbeat nystagmus. Originally she said it looked and felt like everything is moving up and down, which we learned is called oscillopsia. It’s totally debilitating. It does make her feel dizzy/off balance, sensitive to light, and she has trouble even reading or watching TV. She started acetozalamide a few months ago and it helped for awhile, but did come back. Baclofen and memantine didn’t seem to help. Low dose Klonopin did help, but left her dazed and exhausted so it wasn’t even worth it. Now we’re trying the “last resort” - but possibly most effective medication, 4-aminopyridine. Her neurologist was hesitant to prescribe due to possible side effects, but you can do a low dose spread out over the day from a compounding pharmacy. The crazy thing is there’s no medication dedicated to nystagmus, all these are trial and error off label effects!
I have double vision also so I explain Nystagmus as more of an eye disorder. I don’t understand the downbeat classification, I know there is no medication I just use a patch or close one eye.
My optician says that my nystagmus is managed by the fact that I have single vision. I used to wear contact lens that gave me reading vision in one eye and distance vision in the other. sounds weird but it does work.
Thanks for the replies. I don’t know which is worse, having Ataxia and its crap or trying to explain it to others that don’t have it.
You have no obligation to explain, apologize, or otherwise respond to anyone ignorant enough stare at you, patronize you, or to question your disability. The condition is difficult enough to cope with without having to worry about what others may think.
In cases where non-judgemental people are genuinely interested I simply tell them that I have a rare neurological condition that affects my balance. Depending on their curiosity I might expand on the nature of the illness. Often they are struggling with health issues ot their own that are not readily apparent as is Ataxia and want someone to commiserate with.
Other times I might refer to myself as “the fittest spastic in the valley” as I navigate my way through the gym with my walker where I go to exercise. Or I might tell them that I am afraid the police will see me on my daily perambulations with my walker and pick me up assuming that I have escaped from a local care home.
My one regret is that before the onset of this condition I was considered a “dirty old man” by many women, particularly in the gym, and am now viewed as a “harmless old buffer” possibly in need of assistance.
I will concede that when people offer assistance when I don’t need it I feel aggravated however I know that they are just being kind and either let them open a door for me or politely decline their assistance.
In any case, don’t let the bastards get you down!
Thanks Athlete but I wasn’t talking about an apology or anything on that line. I merely wanted an idea that someone might have come up with regarding how to give someone else what Nystagmus actually feels like and how it affects our sight. Something they could identify with. I’ve had this illness too long to still be embarrassed. Nevertheless thanks for your reply.
Welcome Robert I have downbeat Nystagmus, and also struggle in bright light…and bad lighting too I know there are medications to try, but so far I’ve never tried anything. To me…this type of Nystagmus can feel similar to watching TV when the picture continually ‘jumps’…or like travelling in a car past trees with the sun flickering through them.
Yes, one of her ENTs actually described it in a similar way, and how it works - that it’s like driving in a car on a bumpy road but rather than your eyes adjusting to the movement by staying steady, they bounce along with the movement. It made me understand how things like headache and dizziness can accompany it. Well, we’ll be starting the 4-AP this week, but it can take about a month to kick in so will be sure to report back!
Nystagmus was one of my first symptoms. I usually just tell people my eyes dance or shake. I explain that I can’t focus my eyes sometimes and that I miss things often like people waving to me driving by, and that concentrating to focus leaves me very tired.
‘looking at something, but still not really seeing it’…this happens to me. It’s so annoying, how is this possible Is it a delay in the thinking process
And, having someone you know speak to you and expect a reply…but instead you give them a blank look, even though you’ve formulated a reply in your head
Another thing that Nystagmus does to me is this and it really bothers me. I cannot see inside the glass in an oncoming car or such like a train to make out the driver or the passengers. The glass seems to block out my vision. Doesn’t have to be very sunny so glare isn’t the main issue. Also, doesn’t happen when I’m inside the car looking out - I see fine. Sure that I haven’t waved to some folks because of it.