Hey friends, I've been on here for many years, but just had to set up a new account. Hopefully some of my friends here remember me. Anyway, I have been really struggling this week with nystagmus. I've never gotten this symptom before, save for during one horrific vertigo attack many years ago, where my eyes rolled up and down (vertically). However, this week, my eyes feel very strange. They feel disconnected from my brain, and they keep rolling slightly. It's happening once every few minutes, sometimes more often than that, and has been happening since yesterday. I can't get in to see my OTO until Monday, so thought I'd check here to see if anyone else is or has dealt with something similar. I feel like I"m about to start spinning, but the only thing that happens are these weird eye dips. It's making it terribly hard to see, focus, or concentrate. I know that nystagmus is common with our illness, so MM may be the culprit, but I also take low dose ativan, and I'm wondering if that may be the cause? Has anyone here been provided any insight on how to lesses the effects of nystagmus? Or does anyone know of anything that may help? Any help is great appreciated. I hate this disease so much. Hugs, Skye
Nystagmus is terrible. It is the one thing I did not have in my initial years but it kicked in about 5 years ago and I still get bouts of bad nystagmus frequently. I had to go to bed yesterday because it got so bad that I was very nauseated and had the about to get vertigo feeling. My "coping mechanism" is to get very calm and still and focus (with my eyes closed) on the tip of my nose. I have to really focus and follow the movement of my eyeballs (sometimes side to side and other times up and down) until I make it slow down to the point of stopping it. I have some degree of nystagmus almost every day. It's just part of the madness now. I do have stretches when I don't feel it but when it kicks in as fast-beating, it's not good news for me.
I typically don't have that but did have a 4-5 week period that was horrible recently. As a last resort (after three weeks) I found my old meclizine bottle and tried those. Helped significantly (for this issue only; does not work for my Meniere's) Hope you feel better soon
Yes, I've had this also. Pretty scary, so I understand how you feel. First, I would wear sunglasses if I was in the house. Second, I would lay down with a dark towel over my eyes and that would sometimes help. I hope this passes for you. Keep us posted.
Hello Skye. I've been wondering about you. I also just came back to the forum. How are you getting along?