Balance Issue Relapse

I just wondered if anyone has experienced relapses with balance and vision issues in their recovery after over exertion when they are a couple of years out. I'm 22 months out and ran a long race after building up to it. In the following day or so, I started to experience muscle weakness and shakiness in my arms, legs and face. Nowhere near as bad as previously but really bothered me when I thought I was nearly recovered. I noticed some eye trouble like before as well as balance issues. I had great PT before with a vestibular specialist and contacted them again. I had my first appointment today which was great. They could tell that my eye wasn't tracking exactly at the same time as the other just like before and my balance was off just like before. I restarted the exercises I did over a year ago that helped and they are going to work with me again to fix it. They told me that you have to test the line but sometimes you can do too much before your body is ready. I had been able to do so much that I forgot about that line. I definitely remember now!

Tell the board whenever you run in a race. It gives great hope

My doctor told me that she would never tell me not to run if I could do it (I'm 22 months out). I had rebuilt back up to run 4 other small races since all of this happened with no trouble and ran a longer race recently when I overdid it. She said you just have to find your line which can keep moving in recovery. I just crossed over it this time before I realized it. The more I recover, the more normal I feel until I get a reminder. I'll let you know when I get to do another race. I know it's possible so it gives me hope too.

How far was this latest race ?

It was a 5 mile kilt run for St Paddy's Day

GRRRR. I just joined. I'm 28 months out. I don't understand and cannot accept that my life will = 2 steps forward, 2 steps back. The vision and balance thing was the hardest to fix and the most stressful in PT. I'm so angry because it's back and it's not being nice. I'm trying to calm down because my emotions only make it worse.

Do you know what caused your reflare of symptoms? Was is fixed before? It's so stressful and makes me feel terrible too.

It wasn't ever fixed I suppose. I got glasses for the vision and the 2 steps back is already occurring because I think I need a stronger prescription. I had built up my endurance so that I could do some things. Everything was working up to getting better and increasing mobility time. Now I'm lying in bed for at least 20 hours just to get 4 hours of mobility in a day and it's not all consecutive. Also, being stressed about not having any real life anymore just seems to make it worse. I am scared to even move because if there is an emergency with my sons I won't be able to do anything. My son had surgery and has had trouble prior with anesthesia and I couldn't be there because it was too far. I didn't sleep for 2 weeks except the occasional 1 hour here and there.

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So sorry you are having so much trouble. It's so frustrating to build up endurance and then fall back. I can surely attest to that. I did my second day of PT yesterday for my vision and balance trouble. The PT said that my eye is not tracking at exactly the same time as the other eye because of the nerve damage that I suffered with this. He could see it with a scope. My doctors could never see this but I could feel that it wasn't working quite right. This causes light not the enter my eye correctly and this causes the blurred vision. The signal is misinterpreted which causes the balance issue. I'm doing exercises to correct this again. I found out I was supposed to continue doing some of the exercises at home when things got better several times a week. I guess I missed that part. Well, here goes again. Hopefully I will get the same positive results as before. Good news is that it assessed exactly the same way and he thinks that I just overdid it and the nerves didn't bounce back as good because they still need more time to heal. The worse part is that the exercises make it worse before it gets better. It's not as bad this time though. I can still see pretty good with readers for close up and not too bad at a distance. I can still see to drive and work ok. My endurance is just kind of bad right now. He did tell me to try walking on the treadmill and do some light weights so I don't lose too much muscle strength. I started that yesterday but it makes me apprehensive. You just never know when is the right time to push it. I want to sleep it off but it doesn't work that way. Sleep is good but it's a longer fix than that. Wish there was a manual for all of this. It's been learn as you go for me. I appreciate all of the feedback!

I’m just a year out and would say that I’m about 80% normal again. I’m in awe that I’ve come so far from a person with spaghetti arms and legs that could even turn over in bed without help.

I still see double for short periods of time now and then but it’s getting less. I realised today that the tingling in my fingers is gone. Yippee! My feet still feel like they are packed in wads of bandages but I only feel in bed. Every day seems to bring a small improvement. I’m 76 years old.



X

As a constant tingler I am very happy for your progress. I bet those healthy ocean winds across Denmark deserve some credit for your improvement. Q At any time did you find yourself slurring words ?

Hi Dana, good to hear from you. I put your question to my husband and he said there were times when I lived at the rehab center when my speech wasn’t clear. He thinks it was when I was tired, but I don’t have it now.

What triggered off your Guillain Barré? Why I got it is a complete mystery. There are two retired GPs in my training group and now that they have found out why I’m training they are deluging me with questions because until now they have only read about GB but now they have a real specimen. It’s quite funny.
I’m sure that you’re right about the healthy ocean winds. We live right down by the bay and weather permitting I take walks along the shore line as much as possible. My balance is good enough for me to walk across the uneven sand to get to the flat sand at the breakwater.

Last week I fulfilled my last aim…I used an escaltor…ALONE and no AIDS…I was so chuffed that I went right up to the top and down again. :-))

MANUAL: That made me smile. I have to agree that there needs to be a manual. It happened to me also where they just treated the current symptoms and then said OK YOU CAN LEAVE and I had no idea what I was dealing with. Hard thing is my endurance has absolutely no timer. I never know I over did it until I have over done it :) #weneedamanual

Tarhealing said:

So sorry you are having so much trouble. It's so frustrating to build up endurance and then fall back. I can surely attest to that. I did my second day of PT yesterday for my vision and balance trouble. The PT said that my eye is not tracking at exactly the same time as the other eye because of the nerve damage that I suffered with this. He could see it with a scope. My doctors could never see this but I could feel that it wasn't working quite right. This causes light not the enter my eye correctly and this causes the blurred vision. The signal is misinterpreted which causes the balance issue. I'm doing exercises to correct this again. I found out I was supposed to continue doing some of the exercises at home when things got better several times a week. I guess I missed that part. Well, here goes again. Hopefully I will get the same positive results as before. Good news is that it assessed exactly the same way and he thinks that I just overdid it and the nerves didn't bounce back as good because they still need more time to heal. The worse part is that the exercises make it worse before it gets better. It's not as bad this time though. I can still see pretty good with readers for close up and not too bad at a distance. I can still see to drive and work ok. My endurance is just kind of bad right now. He did tell me to try walking on the treadmill and do some light weights so I don't lose too much muscle strength. I started that yesterday but it makes me apprehensive. You just never know when is the right time to push it. I want to sleep it off but it doesn't work that way. Sleep is good but it's a longer fix than that. Wish there was a manual for all of this. It's been learn as you go for me. I appreciate all of the feedback!

Hi Adem, I’m a year out and still can’t figure out when I’ve over done it. I think the problem is that as time goes by you are getting more energy back so you are able to do a bit more every week. I must have an afternoon nap but I also find that just lying on top of the bed for about 15 minutes…shoes and all…is a really good way to tank up. Sitting down doesn’t count for some reason. I hope this tip helps.

Another tip: Brush the bottom of your feet regularly. It stimulates them and mine aren’t so sensitive now after two weeks. I used a brush that you use to brush away. The water in a show…a good investment. My physio suggested this.

I’ve also be brushing my fingers with a medical brush and the tingling is as good as gone.