Visual residuals? and auditory?
AnonymousJune 3, 2007 at 4:54 pm
I’m not sure if this actually qualifies as “residuals” since I guess technically this is still a continuation of my original GBS flare. As I recover, I’ve discovered that most of my original GBS symptoms are either gone or have faded significantly, but the visual problems are still quite present. Everything in my field of vision just looks… I don’t know, staticky. Kind of psychedelic, lots of floaters and tracers, “sun spots,” double vision when I’m tired, occasional flickering lights in my peripheral vision…
It’s distracting and annoying, and even when physically I’m having a good day, the fact that everything still just LOOKS wrong makes me never able to take my mind off of the GBS. Just curious if anyone else had visual issues associated with their GBS, and if so, how long did you continue to have vision problems? Did it clear up completely as you continued to heal? I’d love some reassurance that this will eventually get better, and I’m finding out jack squat from the internet.
Also, did anyone ever have any hearing-related residuals, too? Like, ringing in the ears or such? You hear a lot about weakness and tingling, but not a whole lot about other sensory issues. I don’t know how common sight and hearing related issues are in GBS, and I’d be curious to know others’ experiences.
AnonymousJune 3, 2007 at 7:33 pm
Suzanne, Great questions! I did have pressure in my eye to the point it hurt when I washed my face. I also could not shut my eyes due to the swelling of the eyeball and lack of muscle control. I also had problem with my hearing being very sensitive. I did go to a ENT specialist why in the hospital and also followed up after I come home. That after 19 months is not as much of a problem. But I am still going to a Neuro optomologist and seeing improvement in the peripheral vision and yes I did also have all those things you have seen in your vision that are very distracting to say the least. I also had loss of vision at times due to bleeding in the eye. That has all improved greatly but it did take many many months. I would suggest that you get your eyes tested by a Neuro Optomologist, if not just for a reference point for future appoints. You did a great job of disscribing the different things you have experienced.
AnonymousJune 3, 2007 at 10:43 pm
Suzanne, I agree with Kit, you described the vision oddities rather well. i have them, more so when i’ve over done it or around a relapse. that is one of the first things i have noticed that gets worse just before i have a relapse. when i’m tired, like now its hard to keep them focused, tend to see double and blurry. since my last relapse, i have noticed a slight problem with my hearing, not only when i’m tired. like today i was having a few problems with a buzzing, deafening noise. when i asked the kids and my hubby if they heard it, they thought i was hearing things-it must have been just me. this evening while at a restaurant, i was having a problem with the kitchen using their mixer-like for milkshakes, it was driving me nuts. needless to say it was just me again. :rolleyes: its a good thing i wasn’t driving in the downpour today-i couldn’t see or concentrate on anything, with my vision, the heavy rain and the high speed wipers, i would have wrecked for sure.:eek:
i have found my vision gets better with rest, and my ears don’t act up too much(other then today). but i would make an appointment with a neuro-opt if you are still having that much of a problem with your site. Take care.
AnonymousJune 7, 2007 at 2:41 am
My eyesight was a little fuzzy at times, but I couldn’t get my contacts out of my eyes. I went to the eye doctor and he said that my eyes had changed their shape and needed to be re-mapped. This was around one year after onset of GBS. My prescription and positioning of my contacts all had to be changed.
Now 7 years later, my contacts needed to be readjusted again because they were settling at the botton of my eye and I couldn’t see correctly through them. I had no pain except blurry when I was tired or overdid my work.
I hope you went to an eye specialist to check if there was something wrong in your eyes.
AnonymousJune 7, 2007 at 12:08 pm
The problems with eyesight and GBS is invariably caused by the eye muscles not working together as a team. One eye will be able to focus quickly while the other eye (usually the left eye) is slower to focus, or one eye moves quickly while the speed of the other eye is slow. The brain tries to resolve the differences and sometimes the result is a little weird, like you described. There isn’t a whole lot that can be done about this problem short of eye exercises which will strengthen the aiming and focusing muscles of the eyes.
I also have had ringing in the ears after GBS which is pretty constant and at times really loud, getting worse at night.
AnonymousJune 7, 2007 at 1:04 pm
I experience the floaters and flares, too. I have been told by a neuro-ophthalmologist that these are due to inflammation in the eye (uveitis).
I started experiencing the floaters and flares (and barely noticeable tingling sensations at the base of my spine) two months before I experienced any other GBS symptoms. My neurologist believes that the uveitis and the GBS are separate, but perhaps were set into motion by the same viral attack (which also may have caused the mono that I had at the same time I had GBS). It has been 16 months since my diagnosis of uveitis. I’m going back to the neuro-ophthalmologist next week.
I don’t know if you have uveitis, but your symptoms sounded so very familiar as I read your post that I had to respond.
AnonymousJune 8, 2007 at 4:40 pm
I went to see my regular eye doctor today, and she confirmed that I don’t have any actual blind spots (though I do need a stronger prescription for my glasses now, post-GBS). And there also isn’t anything noticeably physically wrong with the eyes themselves, at least not that she could see.
However, on the test they do where you stare at the dot and press the buzzer when the wavy lines appear, it was the weirdest thing. The right eye seemed more or less normal, but in the left eye, the area around the dot in the center wasn’t solid white as in the right eye, but instead it was flashing black and white and then swirling all around in a counter-clockwise direction. But I could still see all the wavy lines when they flashed! Bizarre.
The eye doctor said either she could refer me to a neuro-opthamalogist, or else I could talk to my regular neuro for a referral. I think I’m going to go through my regular neuro, just to keep all my care centralized through him. He’s already aware of my visual issues and wants to do some additional tests in early August after my follow-up MRI. I’ll probably just wait to address this until then. It might make a difference to have a couple more months of recovery under my belt anyway.
Thank you for your replies!
AnonymousJune 9, 2007 at 5:11 pm
I also have visual and hearing problems. My opthamalogist says no problem there, because I also have myasthenia gravis my neuro put me on prednisone and imuran. Opthamalogist says I should get off pred, neuro says no unless I want IVIG instead. Re hearing, it is bad even with a hearing aid. Can’t solve my problem yet, hope you can yours.
AnonymousJune 10, 2007 at 9:22 am
KarmaCat-glad that you are now able to consider yourself ‘post GBS’ or nearly so. Oddly enough, before GBS manifested itself in the usual way ie-paralysis, pain ,etc, I had a few early signs which I now know in retrospect were beginning symptoms. One of them was the feeling of cold feet even though they were warm to the touch and you know where that goes next! Another was something you experienced with your vision-and prominent only at night with the eyes closed and that symptom was the flashing lights. It was worrisome at the time because that is one of the signs of macular degeneration but soon other worries took over as you would well know. Sometime between starting IVIG and getting out of intensive care they stopped so that would be a matter of a few days. It took a couple of weeks before being able to read however, I think that was simply a case of fatigue though.
It may be that different parts of us recover at different rates-I am hoping your recovery will be as near to complete as mine is!
good luck , Ray
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