AnonymousSeptember 16, 2006 at 10:50 pm
I could really use some help here. We were told that my father has GBS 3 weeks ago tomorrow. He has had the full 5 day IVIG treatment as well as 5 plasmapheresis treatments. As his neurologist says “with this guy its 2 steps back for every 1 step forward”.
The information I am looking for from the group today is, has anyone suffered from hallucinations? My father had been having some strange dreams while sleeping for the last 2 weeks as well as thinking he had something in his hands, but today they were full blown hallucinations while awake and very angry. Someone please tell me you have had this happen to you or have know someone that is has happened to and that it will pass! When he is lucid at times he will realize what is going on and make the comment that he has now lost the only thing he had left (being his mind)
He will begin his second round of plasmapheresis in the morning. I pray that this will work this time.
Scared to death,
AnonymousSeptember 17, 2006 at 1:47 am
Sure thing. It’s called ICU phycosis. Both treatments took a lot, I mean alot, of energy out of him. Then the disease, the meds, the strange surroundings and people, the thought of what the heck happened here, interupted sleep through the night which is called sleep depravation, and a few others, sure adds up in a hurry. Anyone would flip out for awhile. I sure did. Get used to no time frames in this arena. It could go away tommorrow, be back the next, at night only, then come back if transfered, or triggered in some way. Who knows? I thought I got through mine alright, but a few stories by others tell me different. Hmmm. This too, shall pass.
AnonymousSeptember 17, 2006 at 7:42 am
John had many plasmapheresis treatments in the early years of his illness. After one session, his blood pressure dropped very low and he was taken to the ER and then admitted to the hospital for observation. The next morning when I got there, he was acting paranoid….he was discharged, but I was beside myself. I tried to get him to sleep when we got home, but the disturbing behavior continued until, in the early evening, a crisis intervention counselor and our son were finally able to convince him to go to the nearest hospital. By the next morning, he seemed fine and was embarrassed and apologetic. After a few days of tests, the neuro concluded that he had reacted to the stress and he was released. This never happened again, but it was very frightening. I think this is the first time I’ve seen reference to this event on the forum. John will be glad to know that this is not a totally unknown reaction.
AnonymousSeptember 17, 2006 at 9:42 am
Hi Donna: I was not in the icu but had the same experience with dreams and hallucinations. I actually leaped off my bed and wandered around the hospital in dream states. I have seen research that now shows that up to 30% of people with GBS suffer from the same dream disturbance, for unknown reasons. I have spoken to others with GBS who had such experiences so, all told, it is not all that strange. My experiences stopped when I was given klonopin, or generic clonzepam, which you might mentioned to your docs. Good luck. Jeff
AnonymousSeptember 17, 2006 at 12:19 pm
Thank you all SOOOO MUCH! It makes me feel better for him as well and maybe even better for myself to know that this is not unheard of.
I had thought that I had been dealing with all of this rather well until yesterday. I don’t think I have ever cried so hard.
A little back ground on my father, in 35 years I have never seen him sick (other than the occasional cold or hangover). I always knew he had dentures and he has had them since he got back from Vietnam (which I was born right after his return) however I have never seen him without them, even to brush them(again this really bothered me, I know it sounds silly but he as always been very anal about people seeing him without his dentures), he is retired Army,57 and has lived in Pennsylvania for the last 21 years. I have lived in Colorado for the last 10 years. My parents decided to move out here to be closer to me as well as my brother who is in California and intends to move back to Colorado in the next few years. Anyway, my parents had been here 2 weeks (their house is not even unpacked) before this happened. On the 8/25 I had them over for dinner and he said that his feet and legs felt like they were asleep, he ended up falling twice that night. I made him go to the ER and they treated him for altitude sickness and told him to go home and rest and remember to drink plenty of fluids( so now the joke is my cookin sent him to the hospital! I’m a good cook, really I am). On 8/27 my mother called me at 5:30 AM and told me that he had gotten up to go to the bathroom and fallen again and she was not able to get him up. When I got to the house they had managed to get him back to his bed, at this point he had very little strength in his legs however his upper body strength was still good. I informed him that he would be going to the ER again and this time it would not be at a military hospital and he had 2 choices he could help me get him to the car or I would call an ambulance. With that threat he decided to help me get him to the car (it only took a little over 2 hours). He was told within 20 min of getting to the hospital what they “thought” he had, this was after he was tested for West Nile Virus as well Spinal Meningitis and they were ruled out. He was admitted to the ICU right away and was there for 1 day then they moved him to another floor and started the IVIG which did not work and made him very sick. The paralysis moved into his face 3 days later he started the plasmapheresis and with this, his blood pressure dropped to 46 over 23 so he was moved back to ICU. Once stabilized (24 hours later) they moved him yet again to another floor where he finished his next 4 plasmapheresis treatments. 2 days after that he seemed to be doing well so he was OK’ ed to go to the rehab floor so yet another room change. He has been on the rehab unit since Wednesday and starting Thursday he has lost all upper body strength and has no control over anything anymore. They have started doing ultrasounds to ensure that he is able to relive himself (he often thinks he needs to go and nothing happens) and as I said in my first post on this thread the hallucinations started with dreams and in the last 48 hours full blown hallucinations while awake. They are starting his second round of plasmapheresis today and this time who knows how many treatments he will be given. The last was 5 days.
Anyway again THANK YOU ALL for the info. It has made me feel much better. I know he will recover and is not as bad off as some in the hospital. But it is still killing me to know that the strongest man I have ever known is not able to do anything for himself (yes I am a daddy’s girl! Is it obvious?:cool: ). I am sorry for going on and on however it’s made me feel better! Given me the strength to get through another day of being strong for my mother.
AnonymousSeptember 17, 2006 at 12:48 pm
One thing that might help with thinking is, when you get something like this that comes up, think first “I bet this is more common than I think, and maybe it’s something that a lot of GBSers go through”. At least, you won’t feel alone, unique, and nobody will understand, which they won’t there at ground zero, but we will here. Another example that you wrote about, on issues for GBSers, will come more to the front of your thinking down the road at some point. You, and/or the docs may precieve it, or address it, as some new road block. Bowels. That may, and often does, get worse before getting better. All of a sudden, it may seem like action is being taken right away to solve a problem that just came up, when it should have been expected, planned for, and in ready position, for when the patient might need assistence for that issue. The ultrasound is them keeping an eye out, but not really planning their minds. You know about it too, but I know, a day may come where all medical help is directed to a specific area, trying to force the issue, making it seem worse then it really is, or has to be. I went almost 4 months without a bowel movement, and I eventually came out ok without intestinal operations and junk like that being bantered about by docs in the mean time.
As a daddy, and having one daughter, how would you like to hear words like “I won’t get married Dad, until you can walk me down the isle. That’s my promise to you”. Gee, daddy’s screwed up another life too. Male thinking. Two more days of ICU phycosis to get over and process that one.:)
AnonymousSeptember 17, 2006 at 4:43 pm
I know just how it feels to have a very strong father who is never sick, but suddenly is very ill. My father was only 5′-8″ tall, but was the biggest man I’ve ever known. He carried his family and several others, and I never heard a single complaint. You can probably tell that I’m a daddy’s girl too!
I’m so glad that your father has an illness that is temporary. This is not an illness that goes away quickly, but it will get better.
If he’s anything like my father, it’s a difficult situation for him to have his child helping to care for him. If you can let him know that you see helping him now, as an opportunity to pay back a little for all that he has done for you, maybe he’ll be able to ease his mind.
Best wishes to you and your father. Please come back and let us know how both of you are doing.
AnonymousSeptember 17, 2006 at 9:56 pm
I did find peace in the fact that I am not alone! It was a rough day. I could not help myself, i found myself laughin at some of the hallucinations. Some were pretty funny others just made me cry! He would be in the middle of a full blown hallucination and if you asked him where he was he could tell you and go right back into the hallucination. How should we deal with it? Do we point out or try and explain what is going on and tell him what he thinks is happening really is not or do we just play along? In the few moments when he was lucid, he seems to know that it’s “all” not happening cuz he will make the comment “man I am really out there”.
This afternoon they gave him some xanax to help with the problem and it seemed to calm him some but still not all the way. Tonight they are also gonna try some sonoda(sp) sleeping pill ih hopes that will help him rest.
Again I say Thanks to all. It helps so much to know that my mother and I are not alone in this
AnonymousOctober 5, 2006 at 4:39 am
Yes hallucinations, they were so real at the time. Very, very, frightening, and I can still remember them like it was yesterday. I didn’t sleep at all in the ICU, six weeks, no restorative sleep, I would pass out sometimes when my pain medication was given to me….then instead of being awake and hallucinating, I would have nightmares…
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