Recovery Deficits

Does anyone ever experience trouble with muscles in their face or muscles that turn their eyes in recovery? My face was hit pretty hard 2 years ago when I suffered with a case of what was believed to be mild GBS. When I am tired or overdo things, I have trouble turning the eye that was hit so hard initially. It causes me to have some balance issues at times but gets better with rest and time though I can still feel the deficits. I had other trouble with my legs and arms too but that is much better. PT really helped me so I am rescheduling so that I can work on this. Recovery is great but can be so frustrating at times! Just when I think I have this thing figured out, I learn that I don’t. Wondered if anyone else finds this to be their case.

I didn’t have any facial evolvement but even I have involuntary twitches when I’m tired, always on my left side. At first I thought it was my eyelid but when I looked in the mirror it was the eye itself. My biggest issue now, besides no feeling in my left foot, is stamina. I try to go on walks and after a short distance I’m breathing heavy and I have to sit down.

I had half facial paralysis on my right side from gbs for a couple days only, but it has bothered me more than anything else. When i am tired or my BP is up it starts with my eyelid drooping until i cant see well unless i hold the eyelid open. Without medication i get hemifacial spasms also.

I’m 2 years out but I get vertigo when I really overdo it. My right eye still doesn’t turn as well when it is overworked or tired and it really affects my vestibular system causing vertigo at times. I also have a delayed opening of one of my eyes at times when this happens. I don’t have facial spasms now but I did. Just curious what type of medication helps you with this? I’m working with PT even now to work on the problem areas with my face. It really brings me down at times because it’s a reminder of GBS and the way it wrecked me. Just when I move past it, it hits me again. When I look through defective eyes, it’s hard for me to see past GBS and move forward.

Neurontin and robaxin are what i take, the robaxin mostly because i get muscle spasms in my back from the neurontin. It doesnt just cure all the pain but it stops the spasms and resulting cramps in my face. Avoiding extended conversations and food that requires a lot of chewing helps too.

I had so much trouble with chewing and speaking at my lowest point but that improved pretty soon in my recovery. Glad the medications are helping you. Most of the pain finally subsided for me. I hope yours will too! Does your Neurologist have a time frame for recovery?

Dr. Alapati told me it could take 3 years for the “interference” issues to resolve, but that it would definitely get better. It could be a specific time frame for me, but I took it as a general answer.