Anyone else have nystagmus in CIDP?

    • Anonymous
      August 10, 2007 at 9:38 pm

      Hi fellow CIDPers,
      Does anyone else have bouts of nystagmus? I had a bout last night – worst in my right eye. It settled down after a while – thank goodness!
      Kazza 🙂

    • Anonymous
      August 11, 2007 at 3:19 am

      Dear Kazza
      I havent had that but I have just come back from my eye doctor and I am 1/2 blind in the left Eye which he says will progress part of the Optic Nerve is Destroyed now the Bloody CIDP has done this. Not really a happy Boy.
      I am trying to figure out what I would like to walk again or keep my sight. Well I suppose it could be worse.

      Kind Regards


    • Anonymous
      August 11, 2007 at 3:58 pm

      Yes, our 3 year old with CIDP has had an eye problem for about 12 months. Now that we have seen improvement with the CIDP in general, the eye seems to have improved too.

      I took him to a pediatric opthamologist and he had never seen an eye do what Dell’s did. He was consulting with another guy but I’ve never heard back from him.

      Good luck,

    • Anonymous
      August 12, 2007 at 4:15 am

      Thanks for your replies. Paul, my eyesight has been worse since I developed CIDP. I actually lost some of my colour vision in my right eye after my first attack – it took a few months to come back. It was also really uncomfortable to look upwards and now when I am tired my left eye lid becomes ‘droopy’. I am sorry your eyesight has been affected. CIDP has impacted on my autonomic system as well. My stomach takes forever to empty – and the nausea that goes with that is horrible. My blood pressure can fluctuate as well.
      Lori, I’m glad your 3 year old has had an improvement with his eyes. He must be such a brave little boy!
      Best wishes,
      Kazza 🙂

    • Anonymous
      August 12, 2007 at 5:49 am

      I have many of the same symptoms as you – I lost color vision in my right eye for months, I lost the ability to track moving objects in both eyes so watching TV or looking out the window riding in a car made me really nauseated, double vision, eyeball fixed in one position, eyelids drooping or popping open in the middle of the night – most of these things have improved or only come back when I am exhausted. I still have double vision when I read for more than an hour at a time and get headaches from trying to read abd sunlight has become my enemy, I hide from it like a mole. For the first few days before the IVIg kicked in I had constant ringing in my ears too and was ultra sensitive to sounds as opposed to the reduced sensation everywhere else. I also have autonomic issues – my stomach and intestines work more slowly than they did, or rather suddenly, my heart rate and blood pressure fluctuate along with my temperature which ranges from 99.6-102 daily and finally my ability to hold a full bladder has decreased significantly but at least I CAN hold it now – for several weeks I was the Depends/Pull Up girl and you can imagine how humiliating that is. All that is in addition to the numbness, weakness and extreme fatigue. The one thing I will say with extreme gratitude is that I am RARELY in pain, the nerve shocking sensations come and go within seconds and I don’t have to take any drugs to deal with it, which is fortunate since I seem to be even more sensitive to drugs now than I used to be.

      I expect this will either all settle out or I will learn to live with what is left but it’s nice to know that I’m not the only one with those symptoms. The eye/facial and autonomic issues have confused at least two neurologists in the process of diagnosis. Fortunately my current neurologist was familiar with that possibility and got us back on the right track.

      I don’t know whether any of these “tricks” will work for you but here is what I’ve tried:
      Pirate Patch on the misbehaving eye. I try not to do this too much because it puts a strain on the other eye but if I’m banging into walls it can help because I can’t always voluntarily close my eye.

      OK this is stupid but it worked for me. I was having a lot of trouble with colors and double vision, not to mention I was bored out of my mind, so I downloaded a bunch of free Hidden Object games from Big Fish Games and surprisingly they worked quite well to get my vision back. Of course it was seventeen kinds of misery making my eyes learn to focus and recognize shapes again but I’d say within two weeks of persistantly working at it the double vision cleared up and the colors returned to normal. Maybe coincidence but I think forcing my eyes to try to focus and find shapes worked.

      Digestion is really not a welcome concept – as much as I voluntarily eat you would think I’d be a stick… and because I have trouble chewing most of the things I used to eat became out of the question. In comes the blender and food processor – I am such a fan of soup now! My stomach and intestines have trouble digesting so I reasoned I’d help them out by grinding all my food up for them. Now I don’t make hamburgers into soup but I do cut them up very small and take one microscopic bite at a time. Of course it helps that I seem to have some of my sense of smell and taste so I’m not really all that picky anymore about what kind of soup.

      Not many people have talked about having a fever but it’s a daily thing for me. Rather than take stomach-eating drugs every day to reduce it to below 102 I tend to use cool showers, cold washcloths and wearing a damp shirt sitting in front of a fan.

      Oh and stairs – they were a huge problem for awhile but my in-laws installed a chair lift for me and while I still do use it in the sitting position when I’m tired at night – I use it to help balance myself walking up the stairs now. I swear it made a big difference in my confidence level having something I could hold onto while walking up the stairs. Of course you can’t do the same thing going down stairs so don’t even try it or you will fall over your chair, hit your head and tumble down the stairs. No, I didn’t do that but the image got burned in my brain so I never tried it. :p

      Take care and hang in there, you may still get better but you will definately develop your own coping skills to deal with daily irritations.


    • Anonymous
      August 12, 2007 at 7:53 am

      Hi Julie,
      Thanks for your reply. I agree a lot of our symptoms are the same. And yes, I can definitely empathise with you.
      So many areas seem to be affected don’t they? Especially with the ‘dreaded fatigue’ – I was going to do a breakdown of what areas of my body/head are affected but it would take too long! lol
      I would say I have improved a fair bit since my first attack a few years ago. Though the same old stuff always reappears and hangs around for a few days when I am fatigued.
      I am getting more pain now, though.
      I too avoid foods that are hard to chew, my jaw gets too fatigued chewing – I also find foods like soups etc easier to digest. I could never eat a raw carrot for example anymore. My sense of taste is poor as well now.
      Thanks again for your encouraging words.
      All the best,

    • December 2, 2016 at 8:11 am

      As a neurologist who deals with nystagmus every day, one would not think that CIDP alone would commonly cause nystagmus. Nystagmus (i.e. involuntary jumping of eyes) is most commonly caused by imbalance between the ears. The vestibular nerves are not vulnerable to CIDP, and thus should not be a source of nystagmus. In addition, even if they were, the vestibular nerves and for that matter all of the cranial nerves are short nerves compared to those that go to the hands and feet, and the chance of conduction being affected by a process that damages myelin is much smaller than longer nerves that are a bigger target.

      Disorders that cause neuropathy and cerebellar damage simultaneously, such as CANVAS, might be associated with nystagmus due to the cerebellar component. CANVAS is actually a dorsal root ganglion disease, rather than a demyelinating neuropathy like CIDP, so the connection is not tight.