February 27, 2017 at 8:37 pm #112245
Hi Angeliflow! I’m sorry I haven’t explained the eye exercises. It’s so hard to describe it in words so that someone can understand. Are you doing any better? Have you found a therapist to help?September 6, 2017 at 11:59 am #113268
Hi, Angelflow, how are you doing? Have been away, just now revisiting, and am anxious to hear of your progress, hopefully positive.February 28, 2018 at 3:24 am #113961ZEN172172Participant
Hi I had Miller Fischer last year.The double vision lasted about 2 months and was scary. However keep faith and with prism glasses which correct it you can even drive a car legally and it’s quite safe. Bit by bit the general symptoms decline and after about 6 months things become more normal. It took one year to be signed off but I still have a slight tingle in my finger tips. Vision is 20/20 . I was lucky to avoid breathing difficulties and was not on a ventilator. Good luck and if you have questions happy to helpFebruary 28, 2018 at 12:26 pm #113964
Excited to hear of your healing progress! I had the same double vision, although mine did not resolve in a year, which was realigned by eye surgery at the Doheny Eye Institute at USC in January of 2001. Since then I’ve been fine, with just a tinge of awkwardness in my peripheral, and a slight decrease in range of eye motion. That said, I’m so very grateful. The Miller-Fisher took out the vestibular system on my right side, which left a residual of motion sickness and dizziness/occasional vertigo. However, even with that, I’ve adjusted fine. Like yourself,I was spared the breathing involvement as well. 10 days in ICU and another two weeks in rehab and I was free to recover at home. GBS did end my 27 year career as a school teacher, but since I’ve found other things to do that I love. A journey I would never have dreamed of. Long distance run for sure but, by the grace of God, so doable!February 28, 2018 at 2:15 pm #113965
Hi Normison, Glad you are doing so well! I notice that I still have a slight decrease in range of eye motion in my right eye. I had the double vision too and no ventilator. I feel fortunate. My dizziness and vertigo got better with special a vestibular specialist. I hate that problem! You always wonder if it will pass and then it always would but it’s so debilitating at the time. When I get a headache, for some reason I always get the worse pain behind the eye that I had so much trouble with from the Miller Fisher. I still feel a little lag time with that same eye when I’m looking at things. I know it’s damaged. It’s something I accept and work around. One of the reminders. All in all can’t complain. I just always wonder what others who have experienced GBS still notice. I never had surgery or wore special glasses, just special physical therapy for my balance and strength.February 28, 2018 at 2:47 pm #113966
That’s so true how you say “accept and work around.” It’s been a new “normal” ever since, but not exactly a bad thing. More like a shift in life and lifestyle really, something which works out with time. When I finally embraced the changes, I found peace. I’m glad to hear you avoided the paralysis like so many experience with Miller Fisher. It’s a reminder to me, daily, of just how frail I can be and how I lean into Grace moment by moment for stamina and strength, even after 17 years post GBS! The experience definitely resulted in a slower pace of things overall, but my days are filled with what I am able to do with my limitations and I’m good with it. The pain behind the eye… oh, yes, remember that well. Sharp, piercing, same place each time. My neurologist said that it’s a good thing, the body making attempt to repair that damaged mylen. I say have hope for your future… you’ll live to tell a great story and give strength to those newly challenged.February 28, 2018 at 3:05 pm #113967
It is the worst sharp piercing pain in the same place! Feels like an ice pick to the eye. I had it originally but now only randomly. Always behind that eye. If something flares it up, it can hurt for a couple of days sporadically but then back to “normal.” I’ve always known that eye was damaged. I can feel it and tell it. The doctors never could see a problem with it but the special PT did. And my vision is perfect in that eye but that eye does not move right and that throws things off a little but I have learned how to adjust. You make me know that I’m not alone with this. I’m out 3 years but my neurologist said 2-5 year recovery period. Did you ever quit having that pain?February 28, 2018 at 5:43 pm #113969
Yes, the ice-pick (good description) pain went away eventually. However, even now, every once in a long while, it visits me. Not as sharp but, nevertheless, there. Like an old friend checking in on me. Ha! I know the vision thing with me did alter things. Even after surgery, different sensations came up and I had to get used to them. I can tell that the muscles/nerves in my one eye suffered permanent damage, but I’ve learned to compensate and I hardly think of it. I do, however, need to watch my peripheral, especially when driving. I simply do not have the range of motion that I had prior to GBS, worse to one side. My vocal chords have also prematurely atrophied, and it’s like I have lost a lot of my voice-volume. My doctor says this is most likely a long term effect of the M-F nerve damage.
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