Does anyone else feel mildly ‘brain damaged’ by GBS?

I think your name probably says a lot about this. Fatigue is a huge drain on mental power as well as physical power. Your body has been through a lot and you are readjusting to it all and probably still healing on some level that is below the level of “seeing the iceberg”. A lot of people think that GBS and CIDP are “only” peripheral, but there is a lot of others that believe that many people with these illnesses have some central effects. The central effects must also be healed.
FYI, pain is also a huge drain and having to re”make” your way of processing in the world is hard for adults.
WithHope for a cure of these diseases

Hi Julie,
Yes i certainly agree wtih you. I have definitely been affected in all of the areas you mention. After almost six years I can pretty much laugh about it but in actuality it is a little scarey. My doctor (primary one) does agree that I was not like this before GBS so it has to have something to do with the GBS. I have learned to adjust to it but it can be frustrating.

Take care and hope you do better.

😀 I had brain surgery, for a tumor, the week before I was hit so I like to blame a lot of what my kids call “brain farts” on that. Now I have another source of blame! Other than menopause, the heat, the cold, the kids, and the depleation of the ozone layer, blah blah blah. 😀

I’ve always been a bit dain bramaged!!!:eek: I agree with “With Hope” that the fatigue factor is most responsible for my “slow on the uptake” thinking. I wouldn’t worry too much. Just be patient with yourself; your “speed thinking” should come back over time. Actually, in my case, “speed thinking is more than likely the problem in the first place!

Peace, Dave

I’m so glad to know I’m not the only one to feel like that! I kept telling my husband I thought I had brain damage but I thought it was because I went into respiratory arrest and didn’t know how long I might have gone without decent oxygen supply. He told me I needed to quit saying that but apparently it’s real. It will be 2 years this November…I’m fully recovered physically, but don’t think mentally and spiritually I’ll ever be the same again!

Yes. Maybe. What was the question again?:confused:

Hi Julie, I also had a “mild” case of GBS just about a year before you. I just passed my 2 year anniversary. I totally relate to what you are saying. Looking back I almost think I was dazed or something…not really alert and in touch with everything that was going on. At two years, I have some residuals, but as far as my brain goes, I feel totally back to normal…alert, observant, don’t miss anything that is going on around me…very different than I felt a year ago. I don’t know if it was the overall fatigue, or the actual GBS. My energy level now is unbelievably better and is really still improving each month. I don’t often feel that overwhelming fatigue. Hang in there…I am still surprised at how long it has taken to feel like myself again. At the time of GBS, I really thought I had dodged a bullet because of my mild case. I did, but recovery has still been slow and uneven. Take care, luv2sail

Before….. I used to READ at least 4-9 books a week for some ‘recreation’. Since then, I can only skim some from a printed page and retain little. I used to blame it on the meds – I’m off most of them now? But, that disconnect is still there, durn it!
But, the strangest thing is that I CAN read and retain a lot from my computer screen! Doing this has helped me both lean the ins/outs of PC research, but also reinforced the fact that I can still learn more about neuro issues and how they affect me!
Since my own issue is mostly sensory? I do truly miss the printed page and the ability to turn from one page to the next. Does that make sense? Something sorely missed for sure.
You are NOT alone! It mite be meds or how this stuff has affected you. And, most docs don’t take note of such KEY issues in my humble opinion.
WE are HUMANS we can adapt and work ‘around’ this! and we do!

I remember feeling like I was outside of myself, I could sort of hear myself talking but could not recall forming the words or even what I was actually saying most of the time. Like being really drunk or something. I was not on meds when I got sick. I was so disconnected it was scary, trying to find the right word I wanted to say or looking at something and not being able to remember what the object even was. I could “see” the word in my mind, but it would not register or come out. I still get foggy, have concentration problems, easily frustrated and irritable, get a dizzy/disconnected feeling, and even find it difficult to recall the right words or phrases. I swear my IQ dropped by 1/4 or more after I got GBS. Sometimes I find myself struggling over what I am trying to say, and then it comes out as if I am asking a question.

I love reading too, but I can read and reread the same sentence or paragraph and not remember a thing sometimes! I end up just putting my book or magazine away because it is upsetting.

*LOL* I know what youi mean and I thought this was just me, saying wrong words and thinking right one, and I feel even I have said things right. I loved reading but now I read one book in one year. strange yes and nobody belive you when you say this. If I dont want to sleep over the tv, I play game on the puter and listning that I can do.
my hubby feel it funny how unluck Im with words somtimes, and some day he can laugh all day long of my “great phrase”:D and me too. Im learning that somtimes you need to have good time over this, and this is just me today:D
xoxoxoxo
Helga

Oh yes, my brain has changed and I’ve lost a huge portion of what I used to have. Concentration, memory, reading skills, writing skills, decision making abilities, often in a fog, Mind goes blank, can’t remember if I locked the door, what I just said and did, what I’m supposed to do next, the other person’s name. words coming out wrong, multiple of times I’ve left the pot of water boiling on the burner and it boiled dry, because i forgot it was on. I’m so scared that someday there’ll be a fire. Can’t type or write without wondering if I spelled words right, even easy words.

spent the first terrible year recovering from theis brain damage. just going to show you what my REAL writing is like if i don’t coprrect mistakes all the time. i’m 1/3 of myu former self, takes me thererree times as long to do things, i’m like a person who had a stroke, can’t walk, had to rteach myself to read again, using a ruler undeneath a line of words. had to read alound to say the rowords right. had to repeat words over and voer again to learn them again. like a two year old.learninghow to tspeak.

can’t tell time is passing, sometimes many hours later and i thiought it swas just minutes. counting money and doing my accounts was the wrorst, often making mistakes in counting, had to use calculator and do each things about 10 times to make isure it’s right.. can’t do the lthings i used to do like the crochet knitting reading, just can’t find the strength to make the hand motion s, eyes mtioonsmmotions. use trembendougss cdiscipline to relearn and to force myuself to do things right. hgufge effefort. resting a liot helps me, strenth returns nad i can conscentrate. never used to be dyslectic, but now anything can happen . have learned to keep my mouth shut, aftraid others witlll notice my problems. have memorized common greetings sok i can greet mpeople.

Get the idea?

D.U I understand what you are going through, I cant remeber names, and faces are in fog, Im member in mobilehome owners here in Iceland, and I cant remeber any names or faces, I started in this memership after I got GBS, and before I had good memerory of who is who, but to day I try to stay in very little group becouse it hurts to not knowing faces or names of people every one think you should know. My hubby dont understand this loss of memory, and I just have stoped exsplaining this to him. It is so good to see that you are not alone in this, and thank for this great messagebord it have help me alot 🙂
Thank you all for being here 🙂

Thanks for being here too; we appreciate your honesty, your caring and sharing spirit, and you’ve got a beautiful smile (your photo)!
GBS has infected my hard-drive (brain) with many a ‘virus’, but I’m trying to reprogram it.
–Donna
PS:
(I corrected all my spelling mistakes in this one,
Or would your perfer me not to .? heh.heh.he.h 😀 )

PS2:
Iceland…so cold…sounds so clean and fresh, though. Had the first blizzard of the season this week here in Manitoba, Canada..but the snow is mostly gone now. But there’ll be more….oh yeah…there’ll be more….!!!
Have a happy Thanksgiving! 🙂

I never Thought Of That But I Experience The Same Thing ! Sometimes I Will Be Talking To Someone Relaying A Story, And I Jumble My Words And Sometimes Repeat Words Even Though I Know What Im Trying To Say. Im Sure Normal People Do This Sometimes, But Honestly I Don’t Recall It For Me Prior To The GBS. Im Wondering, Have You Spoken To Your Neuro About This? And If So, Did They Say There Could Be a Relation? I Like My Neuro But She acted Like Once I was Better I Was Better And Never Spoke To Me About ANy Possible Residual Effects.

Hey Christina95, if all the doctors and nurses and neuros had GBS, they’d understand this a lot better, woudn’t they???
Though I wouldn’t wish this condition on my worst enemy.
Actually, so far, they haven’t done a thing which has actually helped me; I’ve had to make my way through all of this by myself…with the help of God.

All I know is that the damage was enough to make a wreck out of my body and mind, and the healing process is very slow. I’m learning as I go along what is helping and what isn’t; my mind isn’t as muddled as during the first year, so now I can sort things through better and make small changes. There’s a long way to go, but some things have helped…lots of protein in my diet, resting when tired, not over-doing things, doing the things I need to do but in manageable steps, avoiding toxins (which always trigger a relapse)…mostly, just living as a survivor, and trying to make the most of my life.

😉 Hi All,
I remember being offended reading my report from my neuro stating I had
dementia, at the time it excused me from work along with the muscle weakness etc… but the nurse at work and I were giggling at the report. She said it was the 1st she had seen and I started laughing plus I knew her well and she also said “Joyce, you are too young to be showing these signs!” After that I asked my doctor about it and he asked me if I remember telling him how I kept forgetting everything, arguing w/ my husband about “you didn’t tell me that” (when he did!), forgetting what I’m saying mid sentence etc…
So now, I write notes to myself and life is easier for everyone. My husband writes notes to me also so there is no disagreement (on important dates to remember) I’m not that bad, I don’t think:rolleyes: but notes seem to work.
My doctor says it definitely is a side effect and not me!

Just Joyce:p

Stilltired, have you talked to your doctor about the continued fatigue and absentmindedness? I, too, had a “mild” case of GBS five years ago. I recovered physically, but the fatigue and the “brain fog” continued. My joints still hurt too. After much complaining on my part, my doctor ordered blood work for other autoimmune problems and bingo – it was positive.

Turns out I have Sjogren’s Syndrome with a possible Lupus crossover that had gone previously undiagnosed, mostly because I didn’t pay that much attention to my symptoms until GBS brought them to the forefront.

I’m certainly not a doctor but if you are still having problems with fatigue and “brain fog” it might be worth checking it out. I read somewhere that untreated AI diseases can contribute to GBS.

Hi everyone. I haven’t been online here for a long time. I had GBS in 1995, I had a flair up in 2001, while losing my job to Mexico, and going to college because I had always wanted to, since my job left the country GE had to pay for my schooling,,,! while in school,my flair up caused more residual to my legs, and the memory got worse. I sat in class one day, i knew I was at school. I knew why, I knew my teacher, but I had no clue what I was looking at in my hands ( I was holding my text book) the professor saw the panic in my eyes,,and excused me.. One time I was lost in school,,walking the hallways, I knew where I was,,but did not regonize anything, eventually my memory came back. I was picking up my granddaughter at school,,and when coming home, I was lost for 2 hours,,and my cell had no bars for me to call anyone…I could not let my granddaughter know…Now,,,6 years after school,,,I am working in medical transcription as a transcritionist. I do not have the vocabulary I once had just as you all are speaking about, I cannot speak as I once could,,, but interesting enough I can type and spell medical words,,,with no problem. I have made my own proof sheets to make sure I have done eveything I am suppose to do,because my memory is so short, Once I check everything off,then I know I can move on to another transcription or project. After all this windy message is saying,,,DON’T LET ANYONE,,,NO ONE !!!,,TELL YOU WHAT YOU AREN’T EXPERIENCING WHEN YOU ARE !!!!!! My dear GBSer’s we lived it, we still live it,!!!! We are stronger because of it,,,hang in there my friends !!!!

Hi, sorry, I forgot what I wanted to say!!! Oh yea, I too have had so many
problems with my brain in the last year. My memory is so short, I jumble my
words too (all the time). It’s been raining here for months. Tonight we are
suppose to have a stunder thorm. Heck, I did it again. Thank God I have
wonderful friends who can laugh with me and keep me laughing. I’m so glad
I’m not alone with this disease. I love reading this forum because it makes
me feel like I’m not alone anymore. I have always been a pretty crazy lady,
but I guess now I have a legitamate excuse. I will pray for you all.

Ms. Judy:eek:

Hi folks, last night as I was drifting off, I had a thought on this one. My friend (non-gbs) started having this problem with short term memory and word finding. Her doc found that she had a B12 problem (barely in the normal range) which was treated with B12 shots. In a couple months the problem was gone. I have not had much of a problem after year one, but my doctor insisted that I change my diet with a focus on B12 foods. My doctor really pushes anyone with neurological problems to make B12 a priority. Do GBS patients routinely get periodic checks on their B12 levels? Would be great if shots would help with this. Andrea

I take 2500 mg B-12 daily. I does not seem to matter ,,,but I can talk to my doc about it. thanks.

I would love for B12 to be my answer. Just had my levels checked and they were great. So my tingling, numbness, pain, memory/brain damage is not due to this. Was hoping it would be a simple “fix”. I still make sure to keep my B vitamins handy…knowing also over doing them can cause nerve problems as well.

When I need them or want them. I’ve a thesaurus near my chair for such occasions and it’s helped some – But I’d always blamed the meds I was on. At first neurontin, which was awful to the memory, then keppra which gave me my mind back but, really didn’t do anything for the pain…. My diagnosis came back as CIDP after a first non-diagnosis, followed 9 months later by heaps of testing.
I’m now on IVIG which helps the pain and nerve/muscle fuction immensely. And only rarely take Ultracet for some ‘bad times’ when needed.
I used to carry a steno type note book around to make notes of all said, and w/docs what things I wanted to try and cover. Especially because my mind would blank out on critical things to be addressed. I”ve about a FOOT high pile of note-books w/medical and other notes that help me recall life in the last several years. It’s good I’ve written things down? It’s BAD that I can’t find a reference when I need it! The connections between long and short-term memories are sort of scrambled.
Take a really good look at all the fine print in prescribing information for ALL of your meds that you take… You will be amazed at what you find out about the meds that are supposed to ‘help’ you, and the other problems they can cause? Or, that you can’t take a med w/in X hours of another med or supplement. Don’t be intimidated by it all tho? There are ways to work it out safely w/fewer side effects. Honestly docs don’t pay much attention to this stuff. That’s NOT what they are really looking for, nor are they trained in detail in this whole field of expertise [few are].
Just know, that we are all in similar very leaky boats, bailing as best and as fast as we can! And, none of us is sinking by far….YET!

I am currently recovering from GBS. I got home from the hospital in Feb 09. I found out that I had a stroke while fighting to survive GBS. (The eye doctor told me when I came to him complaining about a loss of peripheral vision in my left eye.) I was thinking some of the symptoms you all talked about, i.e., memory loss, struggling to find words, etc. were the result of my stroke. I guess the GBS probably helped cause them along with the stroke. I will probably never know which caused which. But it gives me hope that I may get over some of these symptoms. That is the good thing about GBS. There is always a chance of further recovery.

This time last year, I is was flat on my back in the hospital. Now, I am up and about. I can pretty well take care of myself. So the problems of memory loss and not being what I was mentally are small compared to that. I always try to keep that in mind and remember that with GBS there is always a chance of getting better. 🙂 I know I repeated myself but it is worth repeating.

You folks take care. 😉

Hi 14 months on being diagnosed with gbs and my memory has been awful , stopping in mid sentence , forgetting what i was saying , sometimes i have out of body experiences . My neurologist said gbs dosnt affect the brain and the swelling in my legs and hand tremors arnt related to gbs but could be parkinsons disease . I had a second opinion and he said no way its p d. My neurologist also said i was making a very slow recovery. but prof olver who is the top guy of rehab said it would take at least 2 years for the fatigue to lessen and 2 hours of rehab every day before im anywhere near normal. So its hard to take in the information im told from different neuros, gps etc when its contradictory. Its important to keep positive and be able to laugh at ourselves , i did this morning when i was going for a walk without my crutch and i turned the corner too fast and i fell over. ( I was on my property , not confident or strong enough to venture out in public yet. ) keep smiling zanna

😀 Hi 14 months on being diagnosed with gbs and my memory has been awful , stopping in mid sentence , forgetting what i was saying , sometimes i have out of body experiences . My neurologist said gbs dosnt affect the brain and the swelling in my legs and hand tremors arnt related to gbs but could be parkinsons disease . I had a second opinion and he said no way its p d. My neurologist also said i was making a very slow recovery. but prof olver who is the top guy of rehab said it would take at least 2 years for the fatigue to lessen and 2 hours of rehab every day before im anywhere near normal. So its hard to take in the information im told from different neuros, gps etc when its contradictory. Its important to keep positive and be able to laugh at ourselves , i did this morning when i was going for a walk without my crutch and i turned the corner too fast and i fell over. ( I was on my property , not confident or strong enough to venture out in public yet. ) keep smiling zanna

😉 OK, I’m on board. I’ve changed my mind, and now I do think I’m brain damaged. I got a cold with a plugged ear since my first post. The left side of my face started tingling like crazy until the ear cleared, and my tongue was non-cooperative…could not say a straight sentence to save my life. The word finding and dropped thoughts were very rough. But I never had any hospital meds. The cold is gone and I’m back to fine, I think…I am having my B12 checked next week. It’s bad enough having full body nerve stuff. I really don’t want to think this was inside my brain! Maybe the brain just gets distracted mid-sentence, because it takes so much effort to physically form the words and get them out? I did have a lot of facial and head involvement. Anyone else?

Hi all , the last 3 weeks ive been getting cramps in my legs and hands , i mentioned it to my G P and he said its probably from my blood pressure tablets but ive been on them for ten years and never had cramps like this before. Im sure its gbs related . I will ask my neauro next appt. 🙂

[QUOTE=zanna]:D Hi 14 months on being diagnosed with gbs and my memory has been awful , stopping in mid sentence , forgetting what i was saying , sometimes i have out of body experiences . My neurologist said gbs dosnt affect the brain and the swelling in my legs and hand tremors arnt related to gbs but could be parkinsons disease . I had a second opinion and he said no way its p d. My neurologist also said i was making a very slow recovery. but prof olver who is the top guy of rehab said it would take at least 2 years for the fatigue to lessen and 2 hours of rehab every day before im anywhere near normal. So its hard to take in the information im told from different neuros, gps etc when its contradictory. Its important to keep positive and be able to laugh at ourselves , i did this morning when i was going for a walk without my crutch and i turned the corner too fast and i fell over. ( I was on my property , not confident or strong enough to venture out in public yet. ) keep smiling zanna[/QUOTE]

the out of body experiences….do these feel like you are still slightly connected to yourself but outside of your body watching thru your own eyes (but almost not)? Like, if you took a slight step to the right or left, you would be able to see yourself and what was going on around you. And does your hearing “dim”? Right before this happens I get a “dizzy” “light headed” feeling, then feel as if I am vibrating from head to toe. Suddenly I am ‘disconnected’ from myself. I am aware of all of this, know what is happening, and can still function (no one has ever said they noticed anything different about me when it has happened), but also am very aware that something else is going on that I may or may not have control over. I know this sounds crazy, but if more than one of us is experiencing the same thing, maybe others will say they know exactly what we are talking about.

I do strongly feel that GBS is to blame for my memory/speech/thought problems. I did not go on meds when I was first sick. Did not have PP or ivig. But, did have facial numbness, tingling, neck and throat involvement, and those strange hard to describe headaches. They were not normal headaches or migraines. They started at the base of my head, went up and over my head on either side of the midline, and ended right at my eyes. Nothing touched them. Then I suffered from bizarre “popping” sensations inside of my head. Like a rubber band being snapped against my brain or something. I still get them sometimes but only on rare occasions. The headaches of course do show up and can be debilitating. Nothing showed up on my MRI or CT scan. Does any of this sound familiar?

Tremors. Well I know that when I am worn out or over stimulated or stressed, I feel shaky. My hands almost do not want to cooperate at all. Writing a legible sentence, or my own name is sometimes difficult. Other times it is okay. I do not know when this will be an issue, but is always embarrassing.

The only meds I am on now are xanax for anxiety issues that were made worse after getting sick, and wellbutrin for depression. Those can cause such issues, but this stuff was happening before meds and after getting sick.

I was paralysed for nine weeks in 1990 with GBS (could only move my eyelids) and although I was a prisoner of my body my mind worked perfectly all through the experience, sometimes I wish it hadn’t!
It took me four years to learn to walk again and my hands never recovered, but it did not affect my brain. I was registered disabled and lost my job, but with the aid of a speech recognition system (DragonDictate) I became secretary of several charities and taught myself website editing programs.
GBS affected my peripheral nervous system, not my mind.

Hello Julie,
I celebreted with tears my 4 year anniversay of GBS just the other day. I look back to the way I was prior to this and wonder if I would every do the things I used to do and I feel no I won’t. I was taking Cymbalta 2 years ago, and stopped taking it in March of 09 for possible side effects. When taking Cymbalta, I felt my thought processes and reasoning power was in overdrive and everything was so clear. When I started taking Cymbalta, I was no longer permitted to work as an air traffic controller because of the type of med Cymbalta is. I thought that was a bunch of BS and have fought to return to air traffic, but since I stopped and no longer under its effects (now take Tramadol) I have noticed my memory has decreased dramaticly, names of friends are forgotten and I sometimes stop in midsentence wondering what the point was. My wife has noticed this too and advised it is because of my age (46), but I think not. I know that starting and coming off the Cymbalta was very difficult as to the mind manipulating powers it has, but 1 time I was in both the process of withdrawal from Cymbalta and starting Neurotin which made me feel I was in a cloud was the worst time. I pray that the doctors find what has gone wrong with my liver, pancreas, gonads, (and whatever gland controls body temperature) soon so I can go back on Cymbalta. All this from a so called mild case. As for the air traffic work I no longer do, I am thankful that I have light duty, office work, because I don’t think I could safety be in control of hundreds lives at one time anymore. My thought processes are not there anymore, and I don’t know what the cause is, but I can only speculate since my perphefial nerve system was destroyed, that it mayhave traveled to my brain that the flight surgeon has speculated.

Fairly Odd Mother, I have exactly that head thing you described. It started about six months ago and is only on my left side. It starts at the base of my neck and “crawls” up the back of my head to my left eye and then stops. I did not have any treatments, my gbs was mild, however, my face and head got hit harder than I would have expected compared to my body. I thought maybe I was getting migraines. It is such a strange feeling, but fleeting.

i to feel this way. it has been 37 months since i have had gbs still recooperating. i had a very severe case of gbs. now on top of that i have peripheral neuropathy.pain all the time. i have trouble concentrating, thinking of the proper word for an object, spelling, and this stuff happens even when i am rested. i know its all one big crazy mess.

My neuro laughed at me when I told him that I was losing my mnd after resetting my Neuronton scrip to a higher dosage. Why laugh? He said that it was basically an IQ test in a bottle. If you don’t notice vocabulary loss, stopping in sentences, analytical confusion to some degree while taking this medication at a relatively high dosage then you didn’t have anything to lose in the first place.

I guess that’s an odd compliment as he continued by stating that recognition of this loss is a sure fire demonstration that you actually had some grey matter of some note. Haha… I was not laughing!

It still bothers me that people not on medications suffer from “brain damage” as well. Meds may make it more noticeable or worse, but I think to some degree this problem is more of a problem than we realize. Just my opinion of course.

I was talking to Nate the other day about this thread. I told him about feeling mildly brain damaged. He kind of laughed and said it has never left.
Neither of us know for sure if its from GBS or all the meds he’s on. Either way, its noticeable to all of us.
Trudy,Natesmom

I have told my wife I have Old Timers because I forget little things like the way I went to work when I was able. The feeling is there and the later in the day the worse it feels. Hang tough, at least we have a reason to forget the birthdays. HA HA!