Announcement

Collapse
No announcement yet.

Nystagmus

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Nystagmus

    I've had nystagmus for years, but it seems to be getting worse. When I look to the left or right I can actually feel my eyes moving now. I don't always have it really bad where everything around me is moving really fast, but I notice it especially when I wake up in the morning and before I go to bed.. I guess when I'm tired it is worse. Anyone else have this? I hate this symptom!!
    Michelle

    #2
    I have had it in the past. Not lately thank goodness. Hope it clears up for you soon. Have you talked to your neuro?

    Comment


      #3
      Wow! There have been times when I'm tired and I feel my eyes jiggle back and forth very quickly and I can't see or read anything for a few seconds. I take it as a sign and go to sleep.

      Is this what you're talking about? If so, I didn't know it had a name...

      Comment


        #4
        I've had it too in the past. These days I mostly have double vision.
        techie
        Another pirated saying:
        Half of life is if.
        When today is bad, tomorrow is generally a better day.
        Dogs Rule!

        Comment


          #5
          I have had it so bad that everything is moving down.. like bad reception on an old tv with an antenna when the screen flips.. everything is flipping downward extremely fast! Its been so bad before that I could not get out of bed, and any movement I made mad me want to throw up. I take meclezine if I feel sick from it, but it does not help the nystagmus. My neuro knows about it and said there is nothing that can be done for it.
          Michelle

          Comment


            #6
            Yes, it was my very first symptom. I have it a lot, but especially when I am tired or stressed. I am sorry yours is getting worse.
            Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
            ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

            Comment


              #7
              @Today's Child.. that probably is nystagmus. Hopefully yours does not get any worse. Mine has lasted for 3 days before. I was just looking up some things on nystagmus and some describe it as a continuous loop.. which is exactly how mine is. When I look in different directions it usually goes faster, like when I am looking down. I can only feel the actual eye movement when I am looking to the left or right. It's weird. My doc said there is nothing he can do for it.

              @Techie, double vision sucks! I've had it before come on suddenly while driving at night. It looked like cars were coming right at me.. I wasn't sure which was the real cars and which weren't. Luckily I was almost home.

              @Ginnyruth, thanks.. today it is bothering me enough that I can see things moving just very slightly.. enough that it is bothering me and making me not feel well.
              Michelle

              Comment


                #8
                Michelle is that you?????? I was just talking about you the other day when someone asked about flaring after pregnancy. My goodness your little girl is 6 now? Saw this on your profile. Can't believe it.

                How are you other than your eyes jumping all over? Wish I had some tip to help on that for you.......

                Comment


                  #9
                  It is me!! How are you?? I saw your name on another thread. I was hoping to talk to you. I guess I took a break on all things MS related, but it is nice to be around people who understand again. I've missed this. I haven't had a new lesion since right after I had my daughter until a couple of months ago.. so I went years and no new lesions, and then I get a new one and I don't even remember having an exacerbation. Nothing new at least that I can really think of.
                  Michelle

                  Comment


                    #10
                    I'm doing pretty good, I don't mean to make this thread a chat, but so glad to hear from you!

                    I see from your profile you switched from Copaxone to Beta at some point?

                    As for the nystagmus, I was reading that depending on what kind you have medications can help. Neurontin and Klonopin were mentioned for a specific type of nystagmus. Didn't realize how complex this symptom could be! Many types and any potential treatment depends on which type....

                    Comment


                      #11
                      Me too. For several years, I had trouble with my vision (blurry, etc.) but none of the eye doctors could find anything wrong. Finally, I started to FEEL the side to side eye movement and knew that it was happening, but not why. It concerned my but I did not know it could be a sign of neurological problems.

                      Still other times, I had blurry vision and could not feel the side to side movement.

                      Finally, my new GP saw it and named it for me! He saw it on a day when I was having vision problems but could not feel the movement. Mystery solved. I suppose it just wasn't happening on the days I had been to all those eye doctors.

                      Sometimes it is so bad I can't drive, read, etc. Other times, it is slight. It has not been bad enough to make me sick to my stomach, but it does cause headaches for me.

                      Currently, the doctors have put my MS testing on hold to treat a severe B12 deficiency. We are hoping that this is the problem instead of MS. It can cause this eye thing as well as other neurological problems.

                      Comment


                        #12
                        I've had nystagmus for 3 years. I'd gone to many Dr's. including a neuro-opthamologist and none of them could offer me anything except taking Baclofen which is supposed to possibly relax the muscles in the eyes. But, I can't take that because it causes me to become incredibly weak, even if I took the smallest amount. After some research, I found a small study which tested 4-AP on Nystagmus. My MS Specialist reluctantly agreed to let me try it and it worked within a day or so. Now that it's an approved drug (Ampyra) , it's much easier to get an MD to Rx it. The Nystagmus isn't totally gone, but it's greatly improved.
                        Jenna
                        Dxed R/R 1999 ,Avonex 1999-2003,Rebif 2003-7Tysabri 2008-2013, JC +

                        Comment

                        Working...
                        X