Ptsd

Hello Members

My name is Robert and I had GBS in Nov 1977. After spending three weeks in the hospital and recovering from this nasty disease. I became a nasty person. Lashing out at people for the littlest things. I was in the military at the time and it cost me my career after twelve years, and two marriages.

My question is are there other persons out here that have the same thing I have? Or any proof that GBS can cause PTSD>

Thank you

Robert

Robert, I had GBS in 2011 and was diagnosed with depression/anxiety and eventually PTSD related to the GBS. I have been on medication since then and am in counseling for the PTSD which has helped. My Neurologist is the one who told me it was related to the GBS. Hope this helps.

Jo-Ann

Scott, I originally was on Wellbutrin (Buproprion) but it didn't help much. Then, placed on Pristiq 50mg which helped a lot, I took it for 6 months. But it can be expensive especially if your insurance doesn't pay for it. Recently I was placed on Lexapro 20mg a day, it comes in a generic and is not expensive. It helps. Zoloft 50mg also helps PTSD and I have taken that with good result. Since I started counseling I am no longer on a daily medication. I do take Alprazolam 0.5mg occasionally if I have flashbacks. Hope this helps.

Jo-Ann

Hi Robert. I would believe so. I am newly diagnoses with GBS and hope and pray the side effects are over. But every time I have a muscle spasms I get concerned. That is my thinking, I might be wrong but I have not have GBS to long. My best Preacher


Hi Robert,

I had the Miller Fisher variant of GBS in June this year. Although my symptoms are not so severe as many cases of GBS, I find myself suffering depression, anxiety and mood swings. I am not on any medication.

I was wondering if post GBS mood swings can be extreme, even if the initial symptoms were not. I was ten days in hospital, had six days IVG. My symptoms were ataxia, double vision and loss of reflexes. Also, after leaving hospital I have had profound fatigue and 'associated problems.' I too have been getting angry for no reason with people around me.

I had a pleasant disposition before I got sick, and I still do, but I tire so easily that I have to remind people that I cant do what I used to do. They forget I am sick because I dont call attention to it all the time, I just try to go about my life as best I can. I have pain, but I dont talk about it much and the painkillers work well most of the time so there is no reason to complain about it. Its easy for them to forget I am not the same person anymore, and they expect a lot from me....I try to take care of myself, and I listen to my body and rest when I need to. I take naps and that helps. . But if I try to do too much, I get worn out QUICKLY. Doing the dishes, taking out the garbage, and a trip to the mailbox and Im done. I require a nap before attempting anything else. I have to prioritize. Do I need a shower, or to make dinner? I cant do both. Which do I need more right now? It sounds so ridiculous when I read the words I just typed, but I bet other people who have had GBS and suffer from the fatigue that lingers on after understand how that is. If I try to push mysef I become exausted and I am more likely to lose my temper and act like a total bitch.. I do not know a lot about the psychological effects of GBS. Apparently neither do the doctors, or if they do, they arent sharing the information. So although I am not a doctor, I am guessing that your PDST could have some relation to GBS. I dont know if it caused it or not. (although the whole thing you go through during the acute stage certainly is traumatic and horrible, and its a possibility) You said you were in the military so perhaps some experiences you had during combat contributed to it as well. Maybe you had it before but were able to handle it well and now because of the disease, you just dont have the strength to fight it.

Hi Robert! Sorry for the problems you are having with the PTDS. I was diagnosed with GBS June 2012. I was in hospital/rehab continuosly for 4 1/2 mos. I had to have a colostomy during my rehab period. I did not have any long term anxiety/depression during all of this. Not to say I don't have my moments. However, I am older (I think) and retired so I didn't have the job to worry about. Think I could still do it, but it would be a lot more difficult to manage the GBS/Colostmy. I was told that there is no cure for GBS but you can recover. Some better than others. I still don't walk really well and still take rehab several days a week. I still use a walker or cane when I am out of the house. Don't know if I will ever be back to normal or if this is the way I'll be forever. I just thank God that I have recovered as much as I have. I do think GBS could cause you to have the problems you are having. I do get nervous spells at times and take Lorazepam as needed.

Hugs & Blessings!

Kay

Hi! QweensGambit! You described me to a "T" Just because we may look the same, doesn't mean that we are the same as before being diagnosed with GBS! I tire easily. Like you, getting myself dressed, to therapy & back, fold some clothes and maybe getting a quick dinner and I am done, done, done! Thought maybe it was just me, but seeing you putting it into words makes me feel better about myself. Thanks, Thanks, Thanks!



QweensGambit said:

I had a pleasant disposition before I got sick, and I still do, but I tire so easily that I have to remind people that I cant do what I used to do. They forget I am sick because I dont call attention to it all the time, I just try to go about my life as best I can. I have pain, but I dont talk about it much and the painkillers work well most of the time so there is no reason to complain about it. Its easy for them to forget I am not the same person anymore, and they expect a lot from me....I try to take care of myself, and I listen to my body and rest when I need to. I take naps and that helps. . But if I try to do too much, I get worn out QUICKLY. Doing the dishes, taking out the garbage, and a trip to the mailbox and Im done. I require a nap before attempting anything else. I have to prioritize. Do I need a shower, or to make dinner? I cant do both. Which do I need more right now? It sounds so ridiculous when I read the words I just typed, but I bet other people who have had GBS and suffer from the fatigue that lingers on after understand how that is. If I try to push mysef I become exausted and I am more likely to lose my temper and act like a total bitch.. I do not know a lot about the psychological effects of GBS. Apparently neither do the doctors, or if they do, they arent sharing the information. So although I am not a doctor, I am guessing that your PDST could have some relation to GBS. I dont know if it caused it or not. (although the whole thing you go through during the acute stage certainly is traumatic and horrible, and its a possibility) You said you were in the military so perhaps some experiences you had during combat contributed to it as well. Maybe you had it before but were able to handle it well and now because of the disease, you just dont have the strength to fight it.

It is nice to know you arent alone. I am sorry that other people have to deal with this too, and yet, I am glad that there are other people out there who understand how it feels, even though its only on the Internet. I dont know one single solitary soul in real life that has had GBS. Not one. Nobody understands why I am so tired, and when I try to explain, they are sympathetic at that moment,, but they seem to forget about it in about half an hour. Its like they just dont get it. I dont want to have to keep on telling them. It sounds like I am whining, complaining, or making excuses and I hate when other people do that. I always took pride in the fact that I am a hard worker. I get things done! Im no slacker. I am a capable person who others can count on. Only now, I dont have the strength to do what I would like to do, In my mind I am the same, but my body isnt cooperating. I feel like I am letting everyone down.

Hi QueensGambit,

Thanks for all your very helpful information. Do you mind me asking what your initial hospital experience of GBS was?

All the best,

Roddy

My initial hospital experience with GBS was to be given dilaudid, told to see my primary, and sent home, I must have gone to the emergency room six or seven times, getting increasingly worse each time until finally my daughter called an ambulance the last time and they reluctantly admitted me. By that time, I could barely stand, could no longer use my hands at all, in excruciating pain, and going downhill fast. For about a day and a half they did every test under the sun and couldnt figure out what was wrong with me. I was terrified. I felt like I was dying and nobody could help me. Finally they sent in a neurologist and when I told her my symptoms she guessed what I had right away. A spinal tap confirmed her diagnosis. I was immedietly sent to intensive care where I remained for four days. They did that gamma globulin treatment with steroids and i dont know what all. Dilaudid saved my life during that time because the pain was unbearable. By the time I was back in a regular room again, I was getting better but could not walk, could barely even lift my head, I couldnt feed myself, couldnt use the bathroom by myself, nothing. I was as weak as a newborn kitten.I was in the hospital and then the rehab a for a month. I am still not back to normal.I still walk with a cane,still have the neuropathy and the pain. But I am alive, thankfully!

I can understand your experience, my GBS also started with pain that nothing helped, then I got bilateral Bell’s Palsy. The weakness started next, by the time I finally saw the Neurologist, I could hardly walk, couldn’t get up out AF a chair or bed, the spinal tap showed the GBS. I also could barely swallow. I spent 8 days in the hospital having plasmapheresis. They tried the IVGG but I had severe reaction to it… Spent weeks inpatient rehab then months in outpatient rehab. Finally was able to go back to work part time 8 months later, that was 2 yrs ago. I am lucky it wasn’t worse. But even now I get so tired and hurt all over. Rarely am able to make a full week at work. Luckily my employer understands. I also ended up with a hearing loss, memory impairment among other things.

Hi Robert!

I am so sorry to hear that you are still trying to manage the fallout. I was diagnosed with GBS back in the early 80’s after being thrown from the car during an accident. While it was never confirmed, the doctors felt I had a variant of mono which led to its onset when coupled with the trauma. Anyway, it was a long hospital stay followed by months of inpatient rehab and to be frank… I was so medicated in the hospital that the days all ran into each other and by the time I was admitted into rehab… I was done. I was on a mission to do what I had to do to get back to my life and find a cozy little nook of my brain to box the whole experience up and not think about it again, which was successful for a fairly long time.

It wasn’t until a tree fell through the windshield of my convertible while on my way (with the kids) to a local skating rink that what had happened a decade before started to resurface. I so wanted to box this experience too, but how could I? As you can imagine, I was injured. I have rods, screws, plates, TJR’s and pain. There was no way to compartmentalize what I was going through. I no longer ran my life, my injuries did… and that’s not an easy thing to accept. Well, not for me anyway.

One’s loss of their most basic functions (the ability to care for one’s self) is PRIMAL and once you have fought your way back, you will do whatever it takes to maintain that sense of normal. PTSD is an individual’s reaction to an acute stressor which differs for each of us. It’s human nature. Please forgive yourself any shortcomings because you are, as I am… human. The trick is being able to find your balance. Organizing an understandably disorganized condition and knowing to take the time to take care of you. I do everything I can to avoid having to take any medication these days. My condition took a left turn in 2005 when my prosthesis shattered. Things like sauna and acupuncture and sauna are important parts of my routine and are worth considering.

Robert, GBS is just a chapter in your life. The fact is “YOU” survived to finish the rest of your story… and as a fellow survivor, I am glad you did.

Just breathe… the answers will come.

Lisa

P.S. Any acute stressor can cause PTSD!