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    Nystagmus (jumpy eyes) question

    Can you feel your eyes jumping around when you have nystagmus?

    I'm not having it now, but at the beginning of this flare (which I think is finally ending, except for the drifting-off-to-sleep seizure-thingies), I could feel my eyes jumping around, especially when I had my eyes closed. It wasn't my eyelids twitching, which they do too at times, but it was my actual eyes that were bouncing around. I've had this happen a couple of other times over the last five years; but it's never happening when I go see my doctor, so it's never been diagnosed or documented.

    Just wondering if you can actually feel it when it happens.

    Thanks,

    Lisa
    Joy is not the absence of suffering. It is the presence of God.
    Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
    Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

    #2
    I have nystagmus and I don't feel it. I didn't know I had it until I did OT and they noticed it. Now it is pretty noticeable, especially when I am tired, and is noted on my neuro exams.

    There are actually 6 ways in your eyes you can have nystagmus (police officers will look for it if you are suspected of having been drinking and driving).

    There are occasional times where I am very fatigued and think I might be able to "feel" it, but I think it just because I am aware I have it. At that point, my vision has usually gone blurry anyway, so it doesn't really matter, lol.
    Erin

    doing the Limbo since 2005

    Comment


      #3
      I've had something like this that I describe as "kaleidoscope"
      eye. I feel like my eyes are part of a kaleidoscope, sort of swirling around. It comes on without warning, lasts about 10 minutes, then goes away. One DR said it was a migraine, but it does not hurt. Is this similar to what you are experiencing?

      Comment


        #4
        Hi. I have those drifting off to sleep seizure thingys too. Can you describe what you were talking about. I have had the nystagmus but, only at night.

        Comment


          #5
          Yes this happens to me too

          sometimes my left eye jumps around so much I can't read...I had not associated this with a flare though...happens occassionally but gets better with rest
          [I]Tellnhelen
          Progressive Relapsing MS

          Comment


            #6
            Yep, it happens to me!

            Yeah, I can feel it when my eyes get jumpy. I get dizzy sometimes, too. I was DX'd with an intervertebral imbalance. There's a thingy in your ear that controls your balance. And mine got out of whack somehow. I can't remember if it is associated with the MS, but I think so because the technicians who did the balance test said there was nothing wrong with my inner ear.

            Isn't it great to have a place where you can ask these kinds of questions, and nobody thinks you're a couple of slices short of a sandwich?!?
            COPAXONE - Feb. '03
            Dx - Feb. '03
            1st Sx - March '88

            Comment


              #7
              I have never had nystagmus, but a couple of times when I had those "seizure like tremors" inside my head, I decided not to lift up my head (from sleeping) but just open my eyes and everything was jumping till tremors stopped.

              I have not had that since. But..everytime I lay my head down to sleep and close my eyes, I get those tremors. ONLY when I am about to fall asleep though. Hmm...

              Just checked last night, and seems the tremors are ONLY inside my head. Asked myself, what inside my head could be termoring? Ligaments from eye sockets? What else could be shaking? And..why just when I lay down on my side..never on my back?

              Just sayin.. LOL

              HUGS my friend, Jan
              I believe in miracles~!
              2004 Benign MS 2008 NOT MS
              Finally DX: RR MS 02.24.10

              Comment


                #8
                People that are intoxicated have horizontal nystagmus meaning the eyeball bounces side to side....It would be visible to someone looking at you and for the movement but you wouldn't know it was happening. And, unless you are trained to look for it you wouldn't necessarily see the movement.

                If you hold your head completely still and look as far to the side as you can and hold them there..(peripheral) your eyes will "bounce" if you are intoxicated or (very very rarely) if you have nystagmus from disease or?

                It is not something you can control.

                Use of certain drugs cause vertical nystagmus or bouncing up and down.

                The amount of bounce and where it starts is how a copper determines if you are under the influence of alchohol If a cop is good at the tests he/she can tell what the blood alchohol will be (pretty close) from the amount of nystagmus.

                Just in case anyone wants to know.

                j
                Diagnosed with MS spring 2010; Still loving life

                Comment


                  #9
                  I can feel it. If I am quick enough I can go and watch it in the mirror.
                  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


                    #10
                    Originally posted by tlrosbach View Post
                    Hi. I have those drifting off to sleep seizure thingys too. Can you describe what you were talking about. I have had the nystagmus but, only at night.
                    My seizure-thingies (for lack of a better word) started back last October during a bad flare up of symptoms. (I'm not diagnosed with MS.) The first time it happened, I had laid down on my bed to rest before I went to work, and I suddenly had a very interesting and beautiful colored light show going on behind my closed eyelids. I saw a pinwheel and colored scrolls and it was just beautiful. While I was having this weird experience, I noticed my usual light tremors intensified tremendously, especially on my right side. I had this happen eight or ten more times within the next few weeks, though without the light show (that only happened the first two times that one day.) During this time, I was also smelling a strong smell of wood smoke the entire time. It all eventually went away, and I was fine.

                    Until the middle of April. Another flare up of symptoms and a return of the weird seizure-thingies, except they only happen now as I'm drifting off to sleep, and usually only when I'm lying down during the daytime for a nap, rarely at night. (I have problems going to sleep during naps, so maybe that's why I notice them more.)

                    What normally happens is that I'll just be dozing off, and I get a weird "shivery" feeling and I start having increased tremors on both sides, but more strongly on the right. This will last for 15-30 seconds, then it's gone. I'm aware of what is happening during these times, but I can't stop it.

                    I was supposed to have an EEG a few weeks ago, but I haven't been able to come up with the 20% that I need to pay my share of it. I'm starting to wonder if I should have a sleep study instead, when and if I ever can afford it.

                    And thank you everyone for the input about the jumpy eyes. Next time it happens, I'll have to run look and see if I can see them bouncing.
                    Joy is not the absence of suffering. It is the presence of God.
                    Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
                    Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

                    Comment


                      #11
                      Mine happen at night and it did happen one time during the day. I first noticed it during a flare in 2006 and then during a flare in 2009 and now again in this flare. I wake up and I am quivering in either my eyes, left side of body, or heard....it is very fine tremoring...it wakes me up frequently throughout the night. The time it happened during the day..I was in the car and drifted off..when I awoke...my entire left side of face, arm, and upper chest was doing it.

                      Comment


                        #12
                        My eyes....

                        move rapidly from left to right.

                        I thought I was feeling it every time it happened until my new GP saw it. He was the first to see it.

                        I had been to multiple eye doctors for vision issues but kept being told there was nothing wrong.

                        The day my GP saw it, I could not feel it but was having my usual vision problems.

                        It causes my vision to be blurry. On really bad days, I can't read at all. Sometimes, I can't drive because of it. Sometimes it is at least a portion of the source of my trouble with steps because I can't see the steps clearly. You should see an escalator when this is happening!

                        A few times I have had a stripe across the top of my field of vision that looks like a bright, squiggly line. I think that is caused by my eye thing. I think my eyes moving is causing a "repeat" of what I am seeing. It is similar to what you might see after looking at a bright light and then away, but you still see the outline of the bright light.

                        Comment


                          #13
                          Originally posted by Shashi View Post
                          My seizure-thingies (for lack of a better word) started back last October during a bad flare up of symptoms. (I'm not diagnosed with MS.) The first time it happened, I had laid down on my bed to rest before I went to work, and I suddenly had a very interesting and beautiful colored light show going on behind my closed eyelids. I saw a pinwheel and colored scrolls and it was just beautiful. While I was having this weird experience, I noticed my usual light tremors intensified tremendously, especially on my right side. I had this happen eight or ten more times within the next few weeks, though without the light show (that only happened the first two times that one day.) During this time, I was also smelling a strong smell of wood smoke the entire time. It all eventually went away, and I was fine.

                          Until the middle of April. Another flare up of symptoms and a return of the weird seizure-thingies, except they only happen now as I'm drifting off to sleep, and usually only when I'm lying down during the daytime for a nap, rarely at night. (I have problems going to sleep during naps, so maybe that's why I notice them more.)

                          What normally happens is that I'll just be dozing off, and I get a weird "shivery" feeling and I start having increased tremors on both sides, but more strongly on the right. This will last for 15-30 seconds, then it's gone. I'm aware of what is happening during these times, but I can't stop it.

                          I was supposed to have an EEG a few weeks ago, but I haven't been able to come up with the 20% that I need to pay my share of it. I'm starting to wonder if I should have a sleep study instead, when and if I ever can afford it.

                          And thank you everyone for the input about the jumpy eyes. Next time it happens, I'll have to run look and see if I can see them bouncing.
                          OK, your flashing "light show" is most likely an "aura" but of what? Seizures or migraines?

                          The "shivery feelings" and smells are definitely signs of simple partial seizures but not necessarily Epilepsy..but you do not know.

                          So, my suggestion is to go the EEG route with an experienced Epileptologist so other neuros will not dismiss this whenever the EEG may be "normal"..

                          Definitely need a video EEG at home or in hosp. Then they can SEE what you go through..and look at EEG to document this.

                          Do not worry as much about the 20%..you can get on payment plans for this to cover 12 months. AND once you pay your out of pocket expenses fully (which you will probably meet, depending on the amt) it pays 100%

                          How much do you want to know the answer from a provider? And mostly likely, unless every test (EEGs) result in negative, normal, you will be given anti seizure meds. They help with other things besides seizure activity as you know. But honestly.. how do you feel about going through testing, follow ups and meds?

                          BTW.. I did something last night. As my nightly tremors started..I opened my eyes just slightly. You know you can see specks or lines from your eyelid? Well I just peaked slightly and could see all those lines shaking. When I open my eyes and lift my head it all stops. BUT..as soon as I lay on my side it all starts up again..as I fall asleep. I am just used to it.

                          Jan
                          I believe in miracles~!
                          2004 Benign MS 2008 NOT MS
                          Finally DX: RR MS 02.24.10

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