Hallucinations and dreams

Thank you everyone for your support. Went and visit my sister today (as I do every day).....she has been in ICU for 3 weeks now with GBS......doctors are commenting that her GBS is the most aggressive they have ever treated. So slow repair and recovery but everyday there is some progress......which really excites me. My question is regarding hallucinations and dreams. Are they due to all the medications or due to the paralyzing,or both? Are they bad ones, good ones, both ones? I have lots of questions and my mind is totally absorbed with her.....glad Iam really good at my job.....I've been on auto pilot.

I did not have any hallucinations or dreams - so maybe it is the medication. I never heard of that happening to a person with GBS - we are all different. Nebetta

I’m so sorry to hear about your sister, my prayers are for all of you. In regards to the dreams and hallucinations, is your sister in a coma?



babsmiracle said:

I'm so sorry to hear about your sister, my prayers are for all of you. In regards to the dreams and hallucinations, is your sister in a coma?

When I was hospital for treatment I experiences hallucinations. I felt like my skin was peeling off. It got so bad at one point I was restrained because I tore off my IV lines and breathing tubes. In my situation I believe it was the pain killers prescribed.

It's comforting that others had hallucinations and dreams as part of their GBS as that was the case for me. SunnyG

I also experienced hallucinations, very strange ones. Once I came out of ICU and became alert they went away. It’ sheen 2 1/2 years for me, tell your sister to hang in there and be patient, my prayers are with you both.

It's from the morphine they give you in the ICU. They even have their own name for it -- "ICU psychosis." They maintain a constant dose for a couple of reasons. There is the pain to deal with, which is substantial. Then, according to what the doctor told my wife, they do it to minimize the mental stress of being there in the ICU, and unable to move.

I will say, that the hallucinations/dreams were some of the most bizarre episodes of my life (and I grew up in the 60s...). I believed myself to be in the strangest places, doing the strangest things. I won't try to describe them here, but suffice it to say that they were realistic and weird. Here's one thing that I realized, that helped me out, maybe it will help your sister. During one of the episodes I looked at the ceiling, and recognized the rectangular light fixtures and the rolling track mechanism that they use to hang things from. And I thought to myself, "The ceiling never changes." In all my bizarre scenarios, the ceiling stayed the same. I used that to mentally "ground" myself. In subsequent dreams/hallucinations I told myself to look up at the ceiling. When I recognized the shapes above me, I was able to tell myself, "It's okay, you're still in the hospital, this is just a dream." That helped me a lot.

Good luck to you and your sister. GBS can indeed be very aggressive. In my case I would have died if I hadn't been in the ICU, I was on life supports for several days at the lowest point. But I recovered (pretty much). Your sister will too.

Thank you LanceB for your reply regarding hallucinations/dreams. I have read some interesting stories of other GBS hallucinations/dreams....some said they could not share them and a few that were shared actually had there own strang twist of humor. I believe if she was not in ICU on life supports she would have died also. They removed the breathing tube almost a week ago (today marks 3 wks in ICU) and had to do a trake.....today they are removing the feeding tube and putting a tube directly to the tummy. She is amazing......she is regaining feeling all over her body (pins pricking feeling and she says her skins feels like burns). She has some slight movement in her hands and heard from my bro-in-law that she actually wiggled a toe this morning :)......all good stuff!!! GBS .... "Getting Better Slowly". God bless you my dear.



Sunny said:



babsmiracle said:

I'm so sorry to hear about your sister, my prayers are for all of you. In regards to the dreams and hallucinations, is your sister in a coma?
Thank you for your prayers sweetheart. No she is not in a coma. We are seeing tiny improvements in many areas.....we will take any and all improvements we can get. It has been 3 wks......feels like 30 yrs.

It's been about 2 years since the onset of GBS for me, and I have to say, this exchange has brought it back so vividly I'm sitting at my desk in tears. (Oh yeah, don't be surprised if emotional instability is another by-product to get used to. I cry at the drop of a hat now, or so it seems.) I recall very well those first instances of being able to wriggle my toes after weeks of immobility, and the first instances of having feeling where it used to be numb. The prickling and burning are pretty common, and they get better.

I had a trach tube in my thoat and a G tube in my stomach for a couple of months. It was a drag, and I was really glad to get rid of them. Find a good plastic surgeon for your sister to patch up the trach tube scar, they can be ugly.

If you visit your sister every day, it wouldn't be a bad idea to take a notebook with you and jot down things that happen day by day. Your sister will be pretty hazy about the preceding weeks, and having your notes to look at will be helpful. My wife did this, and I was kind of surprised to read it later. Sometimes what you think is going on, isn't really. It's interesting to read it a year later, too.

Again, good luck to you both.

mozart said:

Thank you LanceB for your reply regarding hallucinations/dreams. I have read some interesting stories of other GBS hallucinations/dreams....some said they could not share them and a few that were shared actually had there own strang twist of humor. I believe if she was not in ICU on life supports she would have died also. They removed the breathing tube almost a week ago (today marks 3 wks in ICU) and had to do a trake.....today they are removing the feeding tube and putting a tube directly to the tummy. She is amazing......she is regaining feeling all over her body (pins pricking feeling and she says her skins feels like burns). She has some slight movement in her hands and heard from my bro-in-law that she actually wiggled a toe this morning :)......all good stuff!!! GBS .... "Getting Better Slowly". God bless you my dear.



mozart said:

Thank you LanceB for your reply regarding hallucinations/dreams. I have read some interesting stories of other GBS hallucinations/dreams....some said they could not share them and a few that were shared actually had there own strang twist of humor. I believe if she was not in ICU on life supports she would have died also. They removed the breathing tube almost a week ago (today marks 3 wks in ICU) and had to do a trake.....today they are removing the feeding tube and putting a tube directly to the tummy. She is amazing......she is regaining feeling all over her body (pins pricking feeling and she says her skins feels like burns). She has some slight movement in her hands and heard from my bro-in-law that she actually wiggled a toe this morning :)......all good stuff!!! GBS .... "Getting Better Slowly". God bless you my dear.



Sunny said:



mozart said:

Thank you LanceB for your reply regarding hallucinations/dreams. I have read some interesting stories of other GBS hallucinations/dreams....some said they could not share them and a few that were shared actually had there own strang twist of humor. I believe if she was not in ICU on life supports she would have died also. They removed the breathing tube almost a week ago (today marks 3 wks in ICU) and had to do a trake.....today they are removing the feeding tube and putting a tube directly to the tummy. She is amazing......she is regaining feeling all over her body (pins pricking feeling and she says her skins feels like burns). She has some slight movement in her hands and heard from my bro-in-law that she actually wiggled a toe this morning :)......all good stuff!!! GBS .... "Getting Better Slowly". God bless you my dear.

It is weird for me as I’ve always had a terrific memory. While I was first hospitalized I recall I was coherent and alert. To get myself to not focus on the pain so much I would close my eyes all I could. That was 3 months ago. I now have people tell me how they came up to see me lots of times and I cannot remember for the life of me. It’s like I repressed those memories or something. If your sister is on a lot of pain medication which I would believe she would be as I was too that could cause hallucinations.

I have pain now in my feet but had a strange dream and hallucinations early on and I was not on pain meds .Purplerosa and to all others I hope all of us improve and recover . I have to laugh at the hallucination now. One hallucination was seeing my wife when she wasn't there.and the funny one was seeing a dog in my hospital room and even funnier now was thinking there

was a dog on the gurney when I had plasmapharesis.(under the sheet). Looking back now I can laugh about it.

Purplerosa said:

It is weird for me as I've always had a terrific memory. While I was first hospitalized I recall I was coherent and alert. To get myself to not focus on the pain so much I would close my eyes all I could. That was 3 months ago. I now have people tell me how they came up to see me lots of times and I cannot remember for the life of me. It's like I repressed those memories or something. If your sister is on a lot of pain medication which I would believe she would be as I was too that could cause hallucinations.

I was a worse case too, by day 6 was on a life support, plasmapheresis, then in-patient rehab, I do recall hallucinating, very disturbing at the time. Every single day for nearly a month, I thought I was in a different hospital room. Reality was, I was in same ICU room, of course. I learned to look at the white board on the wall that had my room # on it, comforted me some. Now, with meds (vicodin) I will hallucinate but only if staring at a blank white wall or page. Just pretty designs, nothing scary.



I’m almost at my 2 year anniversary of the start of GBS and after having to learn to breathe on my own, swallow, talk, sit up, stand, walk, etc etc, while I am completely mobile, my fatigue is terrible and can be debilitating and I still have nerve pain on top of worsened fibromyalgia.



There will be improvement but it will be slow and she’ll continue to improve after the hospital stay. I improved for the first 9 months, then I plateaued. Good luck and it’s nice she has so much support.

My son hallucinated. He saw bugs and heard lots of noises. He thought the PICU was in a dark basement with leaky pipes. I was told and thought It was because he also had encephalitis but he was on alot of meds as well. His lasted quite a while. but he eventually quit having them

FTK I left that piece out of my share,as I had a similar hallucination tho I'm much older than your son. I remember hallucinating that I was transferred to the basement of the hospital I can't blame that on meds as I took no pain meds during that time.The basement had pipes too but that bizzare recollection didn't last long.My nuropathy is very real and I'm hoping that to shall pass.GBS is so very unpleasant I pray for the day it will pass and I can go on with my life.

FTK said:

My son hallucinated. He saw bugs and heard lots of noises. He thought the PICU was in a dark basement with leaky pipes. I was told and thought It was because he also had encephalitis but he was on alot of meds as well. His lasted quite a while. but he eventually quit having them

Yes, Sunny - I do hope the day comes for you very soon where your GBS will pass and you can go on with your life.

Nebretta

Thank you all for your response to hallucinations. I have tried in a gentle way to see if my sis has had hallucinations......I want to post some pictures in her room but don't want to post something that may take her to some bad memories.....so I have put pictures of flowers and beach scenes.....since we live near Sarasota, FL and our weather is gorgeous maybe that will motivate her to get moving (literally)....GOOD NEWS is they have moved her to a different room and she is talking so we are not reading lips......and she is eating jello, mashed potatoes, scrambled eggs stuff like that and she is doing a great job of staying off the oxy codine.....so soon out goes the traek and the feeding tube!!!!!! She is working hard (her husband and I also) bending her legs and arms.....we were told she has to sit in a chair for miniumum 3 hrs in order for her to be transferred to physical therapy location. She is on week 7 and having incredible progress the past 2 weeks!! She is very strong willed and determined person outside of this disease so that is one on her side. She is also in great spirits....although she realizes its no laughing matter she manages to make humorous remarks here and there about her situation......me saying that was not in disrespect to anyone. I LOVE you Lisa and you are an amazing, beautiful woman..

With all that said.....remembering my sis was diagnosed with the most aggressive GBS and YES I was terribly scared at the beginning (I cried for days).....then decided not to be scared but help her face this thing head on.....with a prayer circle from east to west coast and all her family, friends and this site's support.

I have read somewhere on this site that there are few success and positive entries. I hope this is a positive note for those people who feel that way. I love all of you and all the support and allowing me to ask questions and you all have answered them and have givin me great advice....preparing me for what is to come next.