tired eyes

    • Anonymous
      February 6, 2007 at 5:57 am

      Since having MillerFisher variant of GBS 3 years ago – I have problems with my eyes being tired and blurry most of the time also problems with mouth and tongue (mine started with tongue going numb first) – do other people have same problems – would be pleased to hear.

    • Anonymous
      February 6, 2007 at 8:47 am

      hi colleen,

      what you describe are some of many gbs residuals any one of us with mf can have. with time & a lot of rest they will diminish. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 6, 2007 at 8:41 pm

      I too have fuzzy eyes when they are tired. I’ll be seeing my opthamologist in a few weeks, so it will be interesting what she says. I’ll be sure to mention that it is a MF residual.

    • Anonymous
      February 6, 2007 at 11:40 pm

      Thank you for your reply Victoria, would be interested to hear how you go with the opthamologist – I am thinking of going to an eye specialist as well .

    • Anonymous
      February 7, 2007 at 3:17 am

      my eyes were the first symptom i had so i guess i am preoccupied with them. I have noticed that when I am tired my pupils will be uneven – and i mean a huge difference in size. I know they were constantly checking them in hospital. I know equal and rqactive is normal so what does unequal (but i presume still reactive) mean?

    • Anonymous
      February 7, 2007 at 3:18 am

      hey, colleen … only just noticed your post says you are on the gold coast, I am In QLD too will send you a PM

    • Anonymous
      February 7, 2007 at 11:52 am

      At times my eyes are very dry or the opposite, very teary. Also, my right eye “sticks” some times. It’s quite obvious right now (I’ve been very tired since the food poisoning). I have just become very aware of it but my husband says it’s always been that way since GBS. I asked why he hadn’t told me and his reply was “because you can’t change it and you were already dealing with so many residuals”. Hmm . . . his intent was very loving!

    • Anonymous
      February 7, 2007 at 3:28 pm

      [QUOTE=montanasmum]my eyes were the first symptom i had so i guess i am preoccupied with them. I have noticed that when I am tired my pupils will be uneven – and i mean a huge difference in size. I know they were constantly checking them in hospital. I know equal and rqactive is normal so what does unequal (but i presume still reactive) mean?[/QUOTE]

      Wow. I guess I need to check to see if my pupils are equal. That’s a good question for my husband. I’ll post the results from the opthamologist in a few weeks.

    • Anonymous
      February 20, 2007 at 10:14 pm

      I also have the problems with my eyes. GP is sending me to the ophthalmologist tomorrow. He said they may be able to help with my double vision. That they make glasses for stroke victims that corrects the double vision. And it might help me until my eyes repair themselves. Has anyone tried this, or heard any thing about it?

    • Anonymous
      March 7, 2007 at 1:15 am

      Hi,

      I usually visit the CIDP section, as I have CIDP, but also suffer from blurred vision – especially when I’m fatigued. It’s actually a good indicator to tell me I have overdone things and to take things a bit easier! I also have trouble with double vision (again when fatigued) and have had special lenses put in my glasses that help my eyes focus together instead of wanting to do their own thing!

      Best wishes
      Kazza (Australia)

    • Anonymous
      March 8, 2007 at 1:38 pm

      [QUOTE=colleen]Since having MillerFisher variant of GBS 3 years ago – I have problems with my eyes being tired and blurry most of the time also problems with mouth and tongue (mine started with tongue going numb first) – do other people have same problems – would be pleased to hear.[/QUOTE]

      I had miller fisher 3 months ago but thank god it never affected my eyes, it only affected my balance and speech, and thank god now 3 months later I am 99% fine I walk and talk (can’t stop) I go to work, drive, type on the computer like nothing happened, you can always email me at [email]mosheshia@yahoo.com[/email].

    • Anonymous
      March 8, 2007 at 9:40 pm

      I was diagnosed with GBS in August 2005. I’ve had problems from day one with blurred vision and tired red eyes. What’s strange too is that in the night when my eyes are closed anything that glows, like the time on the clock, I can see it, with my eyes closed and it makes my eye lids bounce. Also to make things worse, the medication I take for GBS (LYRICA) states that it causes blurred/double vision and causes fatigue, which is something else we battle with. Speaking of Lyrica, anyone else out there taking it?????

      Paula

    • Anonymous
      April 19, 2007 at 1:02 pm

      Just saw this post… I notice that when I am tired my face also gets fatigued. It is weired that as I get really tired my speach kinda slurs a bit too but I try really hard to fight through it and I normally can for a very short time, so as soon as I feel it hit I know its time to leave the party because I cant pass it off for much longer… that or else if everyone else is drunk they might just think I am too even though I dont drink!

      I talked to OT about this too and they told me for the eyes to make sure to keep using the drops and the goo stuff. I use the drops during the days when my eyes first start getting tired and I use the goo stuff at night when I am at home or sometimes if it doesnt matter and I am out later somewhere I will sometimes use it in an eye. They also told me to play catch with a soft ball frequently because the eye needs to work by focusing on the ball. So use a soft ball like nerf ball and focus on the ball as it comes toward you and as it goes away from you. This actually has helped me quite a bit, so it is something definatly worth trying if you arent doing it yet.

    • Anonymous
      April 24, 2007 at 11:34 am

      Hi Colleen, I know I shouldn’t laugh but the thought of it starting with your tongue really strikes me as funny. When I was first out of the hospital my wife used to laugh at the way my lips would flap as I tried to speak. My MF started with my eyes and they were slow to recover. Doby 48 has a great idea. As a matter of fact my Optomitrist had me attatch a ball on a string and suspend it from the ceiling. I would swing it away and try to catch it when it came back. Use a soft ball as catching it is not always a sure thing.

      Paula, I have been on Neurontin for 4 1/2 years and wanted to try something different. I spoke with Dr. Parry at the Synposium about a change. He suggested Lyrica so I tried it. My experience is far from a controled study but I went back on the Neurontin. I felt the Neurontin works better. I take 400mg 5 times a day including in the middle of the night.

      Jim

    • Anonymous
      June 1, 2007 at 3:06 pm

      I got GBS (AMAN) in August 2006 and had a lot of problems with my speech and eyes. I could hardly open my mouth at first. My eyes were always watery and I couldn’t close them. Gradually as I got better I could speak but my speech was very slurred; I always felt as though I had braces in my mouth! Nowadays, the slurred speech comes back every now and then, but it’s not very noticeable, except to me. Although my eyes seem to be back to normal, one feels and LOOKS much wider and open than the other! Just recently they’ve been getting watery in the morning. My vision isn’t as good as it used to be before I got GBS. I’m hoping these problems will disappear with time…so far, they’ve been getting better. I guess symptoms vary from one person to the other.

    • Anonymous
      June 1, 2007 at 3:17 pm

      I also had the MF and have problems with blurry vision. My doctor just recently put me on Lyrica and it has made a world of difference for me. I am able to get up and do things around the house now, where before I hurt so bad that I wasn’t able to. I use the tired and blurry eyes to let me know that I have done to much and need to rest.

    • Anonymous
      June 1, 2007 at 4:12 pm

      Two years post and my eyes still get blurry. the opthamologist says there is nothing wrong with my vision, so I’m assuming it’s a residual. I’ll go with AJR and figure it’s time to quit and rest.

    • Anonymous
      June 7, 2007 at 1:54 am

      For double vision and fading vision during fatigue, I eventually saw a neuro-opthamologist. Prisms in trifocals helped me. Rest is the real solution. Enlarged type, san-serif fonts, and programs that read and allow me to dictate, instead of type, extend my endurance. I do almost everything on a computer where a 25-50% enlargement through accessibility features built into Microsoft OS makes reading easier.

      The pathway medically to this solution was complex. Rather than considering residual symptoms of GBS (eyes were paralyzed — looked to me like they wandered aimlessly), it was presumed Myasthenia Gravis caused these symptoms. Nerve conduction studies performed by a guru neurologist in this specialty confirmed MG. Neurologist receiving these results refuted it. I reached a point where the label didn’t matter, as when I was paralyzed the diagnosis of Myasthenia Gravis was revisited through the diagnostic and rehabilitation stage of my experience once before.

      Medical awareness and understanding of GBS residuals is relatively new.

    • Anonymous
      June 7, 2007 at 5:51 pm

      The more I read the messages, I have begun to feel very lucky and well cared for while in the hospital for those 9 weeks. My team of specialists worked together and twice while I was in the hospital I was seen by the Neuro-Opthamologist and am continueing to see him for my eyes. I was tested every two weeks for a few months and then once a month. Now I am up to every 6 months. Alot of improvements have been made and the biggest one was the pressure in the eyeball that was accompanied by hemoraging in the eye which blanked out my vision and made walking and exercising and eating and watching tv and identifing people very hard if not impossible. I still have alot of salt in my tears. My eyes do get tired and droop toward the end of a movie or a party or visit. My husband also uses them to tell him when it is time to take me home rather than his watch. Even now I still have some swelling of the Optic Nerve. Now I just have some vision to the side that is messed up and catches light differently to provide flashes to the sides. I am also light sensetive but dark glasses and a ball cap with a long bill really helps. I don’t use the eye drops or goop any more. I seem to have more natural tears working now. I can remember when I would cry and no tears would flow. My tear ducts seemed to be paralized too! Now my eyes focus together and I don’t see double images. I can read better than ever and see farther than I could before. For me that is one thing that has improved to better than it was before GBS. Neuro-Opthamologist might be more appropriate for someone with GBS and under a Neuro care. Makes more sense to me!