Crazy question Do we experience nerve damage in our brains?

Harry,

I asked my Neurologist the same question. He said that the GBS has injured our autonomic nervous system. That injury causes the fatigue as well as high or low blood pressure.

Mark.

GBS doesnt’t effect the brain. I realize sometimes it can feel like you have brain damage tho! GBS will effect the cranial nerves sometimes (the entire right side of my face was effected). But thats as close as it gets. 🙂

Harry,

I agree with the other comment about the damage to the autonomic nervous system. I have been diagnosed with this and had digestive issues and low blood pressure. At one time, it was 80 over 60.

I have had continuing issues with my autonomic damage, fairly mild, but it is persistent, 9 months later. I had a mild case and still struggle daily with fatigue. Sometimes I actually feel like the fatigue is in my brain, like if I could just like take the top part of it off, it would feel better (sounds weird, I know.) I also get tingles and buzzing in my brain and have a lot of itching at the back of my neck so I really feel like there is brain involvement. There were times when I would get “brain fog,” like really have to struggle to remember things. Are you taking B12? I think that has helped me a bit with this.

You have to remember that your body has been through h*** and back. At the time, we did not realize it, but when I reflect upon it, I realize how serious it was. I had to go to the ER twice and should have been hospitalized, and was bedridden at home, losing 25 lbs because I couldn’t eat from the autonomic nerve damage, which affects digestive, heart, lungs, blood pressure, etc. That is pretty heavy duty on your body. We expect to better yesterday, but this disease is not like that. Get lots of rest and take good care of yourself (and drink some wine to relax)! 🙂

I don’t think brain damage is an issue, but my neuro said short term memory loss isn’t out of the question.

I’d say definitely YES.
My cognitive skills have since dropped many levels; my skills as a music teacher dropped 7 levels, and I can prove this by the professionally-graded levels of music I could actually play before and since GBS. For over a year, I could no longer read music, because the notes swirled around constantly, and after a few seconds to a few minutes, I’d lose all concentration, and could not actually figure out the note names. At times, my mind would go blank, and I could not remember the simplest technical skills of how to play my musical instruments.

And now I have trouble thinking straight, can’t spell words without constant corrections, am dyslexic whereas I never was before, forget words; often can’t speak a full sentence without forgetting what I want to say and which words to use. Sometimes, I can’t read words in a straight line because the letters swirl. I couldn’t add numbers for over a year, had to keep checking and re-doing the simplest calculations with a calculator, had constant dizziness (everything revolving in circles) for well over a year. And I couldn’t remember people’s names, or what I was doing from one minute to the next.
Many times I forgot to turn off the stove burner, and finally burned my Corningware coffee pot dry to the point where the lid baked to a crisp. Another thing that was odd was that I would write something down, like an address on an envelope, and check it several times for accuracy, think it was right, but the next day reading it again I would see that it had errors. One day my brain would tell me that something was correct, and the next day it would tell me that it actually wasn’t. So I’m sure that is brain damage.

Emotionally, I’ve changed also; and emotions are triggered in the brain. I burst instantly into tears often and with very little provocation. I cannot tolerate bright light. I cannot tolerate medium to loud sounds. I had severe and constant headache at onset & still get severe migraines often. Definitely brain changes, and in my opinion…damage. I had insomnia & other problematic sleep pattern changes for the first 2 years, and that’s an indication of brain changes, & not good ones. And I am often drowsy now, and still find myself walking with my rollator with my eyes shut and have to shake myself awake, on a bad day. If all this isn’t brain damage, what is it???

I don’t care what the experts say, they are not ME.
And they haven’t lived every moment of every day with this condition since onset, and had it affect them the way it’s affected me. If they did, they’d realize that it affects the brain, not just the nervous system and muscles of the body.

PS: In addition to all of this, I’m sure I’ve forgotten to add a lot more; AND I ALSO REPEAT MYSELF A LOT NOW, AS EVERYONE ON THIS FORUM CAN SEE FOR THEMSELVES.

DU I have allot of the same issues as you. I agree it does have brain involvment also.. Sometimes I will be driving and forget where the hell I am going and where I am at.. I am 35 so it is quite alarming to me to already be losing my mind at such a young age. I am so tired all the time.. Hang in there hope your having a good day.

DU – something definitely happened to my brain 15 yrs. ago I am an “oldie” at this GBS thing 😀 Concentration is a word I have heard used by others but I’ve mostly forgotten what that means, I used to be able to read for hours at a time – but now it is only for minutes and at times I have to re-read to be sure that I did read it 😮 It is very easy to mix up my words and I try to restate things with out looking to stupid 😮 Thankfully I have a patient and understanding husband – naturally he gets tired of this journey too – but mostly for the struggles I endure! I have loved one and friends who think I should try “Suduko” because they enjoy it. I’m sure that if would cause me a nervous breakdown! But, I’m still here shuffling along, singing my way thru life even tho I forget the words. Need I go on? It would be a very long list!
We had to move into a borrowed 5th wheel so that my husband could go back to school (construction took a huge dive out here). It has been a horrible adjustment for me and the work of preparing for the move was to much!! Thankfully he has only 2 quarters to go – I try to remember thru the pain that it could be worse . . .

Judi Z – so good to see you here. You always share such good information.
“GBS-FOG” has been discussed here before and I know it is true. I think. Well, I used to think.;)

Well, all I can say is that it has helped me tremendously to verbalize everything aloud. Read aloud, think aloud, write things down while saying them aloud, sing loud, say the note names of the music I’m playing, etc.
The brain is re-programming itself with all of these reinforcements.
However, what will the neighbours think, since talking to yourself is a sign of insanity? :p
Looks like the GBS is causing a vicious circle; it damaged my brain so I have to talk to myself to heal it; but talking to myself is a sign of a mental instability. Which comes first, the chicken or the egg??? 😀

I believe I did at a Metallica show years ago, however regardless of GBS I’m as daft as I’ve always been

I, on the other hand, seem to be afflicted with “Homer Simpson Syndrome” since GBS.

HarryB, just got back from my neuro appointment. He wants to schedule me for a brain ct-scan. He mentioned parkisons a couple of times which is brought on the same way GBS/CIDP is. Not to worry, but it scared the crap out of me.

Hello! I feel the same way….fatigue is unbarable most of the time. I hate to say this but my 4yr anniv.for gbs is the 22nd of this month. the pain…..

My Neuro also doubts that GBS affects the brain, however I can honestly say that my speech and thought patterns are different than pre-GBS. My voice also changes later in the day. My throat is still involved and I feel more difficulty swallowing later in the day. One of my improved observations is that my hearing does not seem to be as sensative as it was. I can now tolorate hearing live music again. Wahoo! My vision in my left eye is still a little blurry, but is getting better. 🙂

I am new to this forum but couldn’t help making a comment hear since I am also involved in music as a vocalist. I do not know yet if I have retained the voice I had prior to being diagnosed with GBS on June 30th of this year. I am one of the fortunate ones in that I am well on my way to recovery and feel very blessed after having spent a month in the hospital. Music has always been part of my life (I used to sing to the deer on my father’s farm as a child) and I’m hoping I will be in full voice in time for Christmas Eve services.

My best to all of you dealing with this most unusual syndrome. 🙂

Agnes from MI

[QUOTE=D.U.]I’d say definitely YES.
My cognitive skills have since dropped many levels; my skills as a music teacher dropped 7 levels, and I can prove this by the professionally-graded levels of music I could actually play before and since GBS. For over a year, I could no longer read music, because the notes swirled around constantly, and after a few seconds to a few minutes, I’d lose all concentration, and could not actually figure out the note names. At times, my mind would go blank, and I could not remember the simplest technical skills of how to play my musical instruments.

And now I have trouble thinking straight, can’t spell words without constant corrections, am dyslexic whereas I never was before, forget words; often can’t speak a full sentence without forgetting what I want to say and which words to use. Sometimes, I can’t read words in a straight line because the letters swirl. I couldn’t add numbers for over a year, had to keep checking and re-doing the simplest calculations with a calculator, had constant dizziness (everything revolving in circles) for well over a year. And I couldn’t remember people’s names, or what I was doing from one minute to the next.
Many times I forgot to turn off the stove burner, and finally burned my Corningware coffee pot dry to the point where the lid baked to a crisp. Another thing that was odd was that I would write something down, like an address on an envelope, and check it several times for accuracy, think it was right, but the next day reading it again I would see that it had errors. One day my brain would tell me that something was correct, and the next day it would tell me that it actually wasn’t. So I’m sure that is brain damage.

Emotionally, I’ve changed also; and emotions are triggered in the brain. I burst instantly into tears often and with very little provocation. I cannot tolerate bright light. I cannot tolerate medium to loud sounds. I had severe and constant headache at onset & still get severe migraines often. Definitely brain changes, and in my opinion…damage. I had insomnia & other problematic sleep pattern changes for the first 2 years, and that’s an indication of brain changes, & not good ones. And I am often drowsy now, and still find myself walking with my rollator with my eyes shut and have to shake myself awake, on a bad day. If all this isn’t brain damage, what is it???

I don’t care what the experts say, they are not ME.
And they haven’t lived every moment of every day with this condition since onset, and had it affect them the way it’s affected me. If they did, they’d realize that it affects the brain, not just the nervous system and muscles of the body.

PS: In addition to all of this, I’m sure I’ve forgotten to add a lot more; AND I ALSO REPEAT MYSELF A LOT NOW, AS EVERYONE ON THIS FORUM CAN SEE FOR THEMSELVES.[/QUOTE]

You totally nailed it!! I am not musically inclined, but definitely notice a difference in almost everything since getting sick!! I have to often ask hubby or someone for “what is the word I am thinking of??” or “What was I just talking about?”, sometimes I will even forget where I was heading when I get in the car or why I went into a certain part of the house. I used to take pride in my IQ and now I am not sure it is so great. So many days I feel “stupid” and avoid doing things because I don’t want anyone to know. I noticed I have even begun blaming my family for “making me feel stupid”, they get frustrated with me because they are not doing this it is “in my head”. Spelling, HA! I used to spell without even having to check myself or question whether it was right or wrong. Now, if i have to write on paper, I do a lot of crossing out and corrections. Thank goodness for spellcheck on my computer…but even it is getting so used to my common mistakes that it is adding them to its dictionary.

I never questioned my intelligence or cognitive abilities before 4 years ago, but now I am not so sure I could carry on a decent conversation if I had to. Short term memory….it is a joke around the house about how I have become so forgetful. My biggest fear, is that it will eventually affect other memories and the ones I really don’t want to forget will go away. I can’t remember my mothers voice and she only passed 3 years ago. Emotions run on a constant rollercoaster. Everyone says I seem so angry and ticked off all the time. That I have lost my happy. I could blame it on the meds I now take, but they are supposed to HELP with that not take it away. I do know that I am quick to take things to heart, very easily frustrated, extremely (see cant think of the right word…..dang it!) DISTRACTED!!! Whew, yes that was for real, not a joke. It happens a lot and is so embarrassing.

I dont know what to call this, but it sucks.

Of course my brain isn’t effected because all the experts tell me that CIDP doesn’t effect the Central Nervous system. Of course these are the same experts that tell me that narcotics will not help with nerve pain. From experience I know that narcotics do indeed help with nerve pain. So…

My brain definitely has gone south. I can’t remember things. I went to introduce my wife [married 39 years] and forgot her name. It’s a good thing she is very understanding or I would have been in a lot of trouble. I am forever losing things or walking into a room and wondering why I walked into the room. I’m 67 so it could be the onset of Alzheimer’s but I’m told if you recognize the decline it’s not Alzheimer’s. It could be the meds but it started before the meds. So when you have eliminated all the possibilities [OK most of the possibilities] what you are left with should be the answer whether you like it or not. 😉

At least in my case, I think CIDP has effected my mental acuity. At least that my story and I’m sticking to it.

To blame it on the ‘meds’? Blame it ALL on the ‘meds’. Why not? It’s a legit sounding excuse, tho it doesn’t change anything.

Last time I left my infusion, I was standing at the desk and the doctor was
two feet from me and his secretary was talking to me for about 5 min. about
blood test and my next appt. (I think). All I remember was when she got
done talking I looked right at my doctor and said “what did she say?”
Got to love it.

Hello Everyone!

It has been quite a while since I posted. I survived our moved to beautiful Bisbeeand the downsizing from our 5 bedroom to the 2 bedroom “cottage” we now live in. Our view is beautiful, and no matter where my brain goes, I think I shall always love sitting on my porch overlooking the canyon below.

I have moved from teaching high school biology to teaching junior high general science. This is good, because I am finding I am able to try to rebuild my knowledge base. I have no idea how I would be able to teach some of the more complicated concepts – – – so I am relearning jr. hi vocabulary words with the kids and no one knows otherwise.

My school day is one hour longer, but is a 4 day week. The days kill me – but I could not make teaching 5 days – the 4 day week is one of the reasons we moved to Bisbee.

I do not know a day, an hour, when I am not tired to the bone. The exhaustion is with me always. I live in fear that if I get too tired I will relapse. I wish there was a definative answer about relapse, and how to advoid it. I NEVER want to go through the terror, the rebuilding, the horror that is GBS. I could be strong and motivated as I learned to walk, to write, to feed myself and take care of my bodily needs once, but could I do it again? Could I have the faith, the strength, the motivation a second time? I worry so about a relapse so I rest whenever I can.

I came home from school today grateful that hubby and I work for the same school and drive together. I could not have driven, I would have fallen asleep. We got home and somehow I got into my jammies and in to bed. I slept 4 hours and got up to eat a bowl of ice cream. No dinner, just ice cream and you guys.

I am so glad to have you all. My brain is fuzzy – I am exhausted – and I thank you, Harry, for the thread. It has been a good discussion, and I needed to vent.

Oh, btw – I still have ice cold feet and sleep in warm fuzzy socks. Check out Arizona temps and you’ll understand why I wonder if these blocks of numb tingling freezing painful blobs at the end of my legs will ever get better. Neuro says my feet are about 70% back. Hum – – –

Harry, some of my best friends are my “stuffies” – the bears especially. And they are all fuzzy! 🙂

Enough. Thanks for listening, as always.

Cathie

There have been many posts on this topic since I joined the forum almost 8 years ago. Most of us have referred to it as “brain fog” & one could do a search under that name. I still have it, although not as bad as in the worst stages of my CIDP, where I couldn’t remember names of simple objects such as a coffe table or window shade. I believe it isn’t actual brain damage, just that as the nerves & muscles get fatigued, so does the brain. As the day wears on, & the fatigue sets in worse (I always have the fatigue to some extent), I believe the brain is a muscle & gets as tired as do the others. I guess sleep & rest are the only thing that makes it better for me…