Early Morning Worsening of Nystagmus

[msgrigioilcavallo]

Well, for the last several weeks I've noticed after waking that my eyes have no control and it's difficult to focus on anything.  It has made it difficult for me to do things until my eyes calm down.  I do have very mild Nystagmus during the day but nothing like when I first wake up.

Since this morning lack of control, I'm wondering if I'm progressing or if it's just a new symptom appearing.  Either way, it's something I'll have to learn to live with.  At least I have a Neuro appt. in a few weeks.  I can discuss it with her when I go in.  Hopefully, there will be something we can do about it.  

Out of curiosity, how many of you have the Nystagmus and what problems does it cause you?

[supermum_ms]

I have nystagmus and double vision, i do have a transition period when I wake, I do liken it to giving my eyes time to catch up with my mind and body. I find i need to be fully awake before i open my eyes, if not everything is stranger than fiction, i try and use that time to connect, taking in the sounds, feelings of where I am in space etc. If I just get up then it never goes very well, and smaking into the wall isn't that pleasant lol.

i've been told my nystagmus is horizontal, a rapid jerk, only in my right eye, I also have tingles like static around my right eye that goes off into over drive if i touch my right eye and also when ever I close my left, which is another weird lol I was a little shocked when i was told my right eye is my problem eye, its my left that keeps throwing a shadow over everything, like a smudge of face cream on your glasses. Hmmmm its also the left eye that seems to have a lot of little floaters, i was sure it was my left that was causing all the problems.

I have both left and right, upper eye lid tremors, they dont tremor when my eyes are open but the tremors do not stop when ever I close them, so i'm of the mind that this is also causing a few problems when i first wake, but thats just a guess. Today my sight has been more problematic than usual, its very hot here at the moment and i've also got an abscess so i think thats not helping. I was actually struggling to copy something down, it was taking me for ever to work it out and ds couldn't understand what I was playing at.

Too hard to explain all the decoding necessary, so I drew the lines, squiggles and dots that I see, instead of the clear crisp letters that make up each word. He couldn't work out what the word was hidden inside all the chicken scratches, it was simply the word 'block' and what i drew didn't resemble it in any way shape or form lol he thought it not a bad game. I can work it out from the shapes of lower case letters, sometimes I cant work it out at all when its in capitals, every vertical line overlaps so I get it wrong most of the time.

Oops sorry just realised i've started writing a novel, i'll end with yes i get it too!

Cheers.........JJ

[jensequitur]

I'm wondering if you're sleeping a little too warmly!  My symptoms will get worse when I'm too warm.  I have to be careful in the mornings, because my legs are affected by the heat - they get weak and won't hold me up.

I had nystagmus as one of my first symptoms, before we knew what was wrong.  It happened at the same time as the optic neuritis - my vision went gray, then the room started spinning.  It was actually my eyes moving back and forth.  Then for a long time after that, if I tried to focus on anything, my eyes would move really rapidly back and forth.  Plus I was having problems with flickering light - it made me feel really strange.  It took about two years for this to go away completely.

[Deb61]

At one time I had nystagmus that was worse in the mornings and evenings.  It was noted in my chart with the initial exam.  I also noticed that my eyes crossed in the mornings, too.  I chalked this up to being tired and normal for people for being tired!  I don't have this symptom as badly as I had it before.  In fact, I can't remember when I've had it last.  So, it can go away.  

Do you have time to get into to your opthalmologist?  I had optic neuritis in the same time frame as this problem.  I also had several other eye problems like blurred and doubled vision, though. I don't know if nystagmus is related to optic neuritis--I really doubt it, but it's good to have a specialists's opinion as to what could be causing the problem as one more clue for your neurologist.

Deb

[drsdonthelp]

I also have nystagmus, and it affects me when I am reading or trying to focus on something. It also bothers me more when I am tired.