dream disturbances and hallucinations
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December 14, 2006 at 9:39 am
Hi All: I just published this in a different thread but since it comes up so often thought I would put it in its own thread: There is now research showing that patients with GBS can have hallucinaitons, visions and dream disturbances either in ICU or not, and not dependent on medication. I have written before that I experienced vivid out of the body experiences during my first three weeks and also wandered around the hospital driving nurses mad. This was pretty amazing as during the day I was unable even to turn over in bed by myself but in the night I actually jumped from bed and crawled all over the place. Here is an abstract from the research published in Brain:[QUOTE]
We conducted a prospective controlled study of the clinical and biological determinants of the mental status abnormalities in 139 patients with Guillain-Barré syndrome (GBS) and 55 patients without GBS placed in the intensive care unit (ICU controls). There were mental status changes in 31% of GBS patients and in 16% of controls (odds ratio = 2.3; P = 0.04). In GBS patients, they included vivid dreams (19%), illusions (30%, including an illusory body tilt), hallucinations (60%, mainly visual) and delusions (70%, mostly paranoid). They appeared a median 9 days after disease onset (range 1-40 days, during the progression or the plateau of the disease), and lasted a median 8 days. Seven (16%) patients experienced the symptoms before their admission to the ICU. Hallucinations were frequently hypnagogic, occurring as soon as the patients closed their eyes. Autonomic dysfunction, assisted ventilation and high CSF protein levels were significant risk factors for abnormal mental status in GBS patients. CSF hypocretin-1 (a hypothalamic neuropeptide deficient in narcolepsy) levels, measured in 20 patients, were lower in GBS patients with hallucinations (555 ± 132 pg/ml) than in those without (664 ± 71 pg/ml, P = 0.03). Since the mental status abnormalities had dream-like aspects, we examined their association with rapid eye movement sleep (REM sleep) using continuous sleep monitoring in 13 GBS patients with (n = 7) and without (n = 6) hallucinations and 6 tetraplegic ICU controls without hallucinations. Although sleep was short and fragmented in all groups, REM sleep latency was shorter in GBS patients with hallucinations (56 ± 115 min) than in GBS patients without hallucinations (153 ± 130 min) and in controls (207 ± 179 min, P < 0.05). In addition, sleep structure was highly abnormal in hallucinators, with sleep onset in REM sleep periods (83%), abnormal eye movements during non-REM sleep (57%), high percentages of REM sleep without atonia (92 ± 22%), REM sleep behaviour disorders and autonomic dysfunction (100%), reminiscent of a status dissociatus. The sleep abnormalities, that were almost absent in non-hallucinated GBS patients, were not exclusively related to ICU conditions, since they also appeared out of ICU, and were reversible, disappearing when the mental status abnormalities vanished while the patients were still in ICU. In conclusion, the mental status abnormalities experienced by GBS patients are different from the ICU delirium, are strongly associated with autonomic dysfunction, severe forms of the disease and possibly with a transitory hypocretin-1 transmission decrease. Sleep studies suggest that mental status abnormalities are wakeful dreams caused by a sleep and dream-associated disorder (status dissociatus). Keywords: Guillain-Barré syndrome; hallucinations; hypocretin; ICU syndrome; REM sleep; REM sleep behaviour disorders; status dissociatus.[/QUOTE] Also in the book A First Step: Understanding Guillain-Barre Syndrome (2002) there is a chapter on hallucinations. Incidentally, I analyzse dreams for a living (Jungian Analyst) and find that the hallucinations people have during this disease are very meaningful. If you had any you might consider what they meant for you, especially in regards to GBS. Best to all, Jeff
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December 14, 2006 at 11:53 am
jeff,
very interesting. take care. be well.
gene gbs 8-99
in numbers there is strength -
December 14, 2006 at 2:51 pm
Jeff – When I first got GBS but before I was disagnosed I was in a “Rehab” hospital. I was hallucinating alot. I do not know how long this lasted but it was so real that even to this day I still remember everything about it. I could of sworn that it was actually happening. I would look out into the hallway and the ceiling of the hall would be even with the top of my door. Many other weird things. I thought it was because of a high fever I had shortly after that (104), but after reading your message, I am not so sure. I was not on any medication at the time. I sometimes wonder if it caused any brain damage because I have such problems remembering things. Marsha.
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December 14, 2006 at 2:56 pm
Jeff – When I first got GBS but before I was disagnosed I was in a “Rehab” hospital. I was hallucinating alot. I do not know how long this lasted but it was so real that even to this day I still remember everything about it. I could of sworn that it was actually happening. I would look out into the hallway and the ceiling of the hall would be even with the top of my door. Many other weird things. I thought it was because of a high fever I had shortly after that (104), but after reading your message, I am not so sure. I was not on any medication at the time. I sometimes wonder if it caused any brain damage because I have such problems remembering things. Marsha.
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December 14, 2006 at 2:57 pm
Jeff – When I first got GBS but before I was disagnosed I was in a “Rehab” hospital. I was hallucinating alot. I do not know how long this lasted but it was so real that even to this day I still remember everything about it. I could of sworn that it was actually happening. I would look out into the hallway and the ceiling of the hall would be even with the top of my door. Many other weird things. I thought it was because of a high fever I had shortly after that (104), but after reading your message, I am not so sure. I was not on any medication at the time. I sometimes wonder if it caused any brain damage because I have such problems remembering things. Marsha.
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December 14, 2006 at 2:57 pm
Jeff – When I first got GBS but before I was disagnosed I was in a “Rehab” hospital. I was hallucinating alot. I do not know how long this lasted but it was so real that even to this day I still remember everything about it. I could of sworn that it was actually happening. I would look out into the hallway and the ceiling of the hall would be even with the top of my door. Many other weird things. I thought it was because of a high fever I had shortly after that (104), but after reading your message, I am not so sure. I was not on any medication at the time. I sometimes wonder if it caused any brain damage because I have such problems remembering things. Marsha.
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December 14, 2006 at 8:42 pm
Hi Marsha: My hallucinations were totally real as well. In one I was on top of the ceiling of my hospital room but it was like being in another world. I was talking to the nurses the whole time telling them about my world on the ceiling. I too have trouble remembering and concentrating still but all the neurologists tell me it has nothing to do with GBS. I think it does-one more mystery about this disease. I ran a high fever later but not during the time of the visions. Jeff
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December 15, 2006 at 3:44 pm
Hi Jeff,
You analyze dreams, huh? Very cool. I try to look into my own when one really sticks with me and am familiar with a lot of the symbols. Next time I have a weird one, I’ll email mail you with the details and see what you think.
I really enjoy my dreams for the most part. A lot of times I am socializing like I used to and even dance in my dreams (which I really can’t do much of now). I have been seeing my parents (both dead) in my dreams lately and do so cherish that. According to my dreams, they are doing okay and I believe they are keeping an eye on me and my siblings. I would love to see John Edward with his ‘crossing over’. I have met someone locally that does that and my Mom has come through several times. My Dad just recently passed and I believe it takes a little while for them to get situated before they can contact us. Any thoughts on this???
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December 15, 2006 at 4:24 pm
Jeff, this is very intersting!
I have an illusory body tilt to the left mainly when lying bed, but fully awake. It feels like I am falling out of the bed like a rolling in a kayak. Once when in another bed I felt like rolling left into the wall, which was not solid but moving.
In the article it is also linked to autonomic dysfunction. Does that mean an attack on the autonomic nerve system?
Did anyone else experience illusory body tilt?
Ninus
[QUOTE=jeff]In GBS patients, they included vivid dreams (19%), illusions (30%, including [U]an illusory body tilt)[/U], hallucinations (60%, mainly visual) and delusions (70%, mostly paranoid). They appeared a median 9 days after disease onset (range 1-40 days, during the progression or the plateau of the disease), and lasted a median 8 days. Seven (16%) patients experienced the symptoms before their admission to the ICU. Hallucinations were frequently hypnagogic, occurring as soon as the patients closed their eyes. [U]Autonomic dysfunction[/U], assisted ventilation and high CSF protein levels were significant risk factors for abnormal mental status in GBS patients.[/QUOTE]
[QUOTE=jeff]There is now research showing that patients with GBS can have hallucinaitons, visions and dream disturbances[/QUOTE]
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December 15, 2006 at 5:53 pm
Hi All: Ninus, when I got sick I was on a train and was stuck on the train for 24 hours as I lost the ability to walk. For weeks after, when lying down, I felt like I was moving on a train. It was a sickening feeling-so I have trouble ever thinking of getting a train again-and I felt like I was tilting and in motion for months. I no longer have that sensation for which I am very grateful. I believe autonomic dysfunction does refer to the autonomic nervous system.
Chrissy: in my practice I have often seen dreams in which deceased friends and relatives appear and deliver messages or feelings of comfort and even warning. I take them quite seriously and believe the dead can communicate in dreams, though such dreams usually feel different and special. It is truly amazing to me, even after 30 years of working with dreams, how much information they communicate and how they can relate us to wider worlds. In the hospital my hallucinations were often very meaningful to me and at times very spiritual. I think in the GBS state we are open to different states of consciousness than normal. Some of my experiences were like nightmares and I became very paranoid in some of them that the nurses had imprisoned me in the hospital, but at times they were wonderful, even angelic, experiences. Your dreams of dancing and doing things you can’t really do remind you that in the soul you can do wonderful things even if the body can’t. Such dreams remind us that we are more than our bodies and can give us a lot of hope and courage to deal with the physical. Jeff -
December 15, 2006 at 8:52 pm
I noticed right away early on with Nate that when he was first put in the conv home, he always leaned to the right whenever he was sitting part way up in bed.
We would always kind of laugh about it and he would try to correct it but he always end up back there.
He couldn’t tell he was doing that either.
It sounds similar to what you’re talking about.
Also he has recurring dreams that he is in his wheelchair, going into his old job, then getting up and walking thru the store like nothing ever happened.
Then he gets back in it and goes home.
It bugs him too. He tells me whenever it comes back.
I would guess that as his subconscious trying to bring him back to when he was ok, before he got sick. -
December 16, 2006 at 12:26 pm
Jeff – Kindred Spirit,
A recurring scenario is I am lost on a highway in Houston or LA. Lots of confusion with so many highways and choices of which way to go. In a dream recently with my mom calling me telling me she was sending a guy named Tye (?spelling) to help me with my car. So, I am looking or keeping my eyes open to someone with this name as I feel my mom is sending him to me for a reason.
This kind of talk really feels good to the core of me -my soul. Not too many people in this city that are open to this – there are some but hard to find. When a spirit fair comes here I am there most of the day just asborbing the energies. I do not go to concerts or a group with a large number of people because I feel too many of their feelings and it gets very confusing to me. I have always been this way – when I was 14 I was wearing an ankh.
When I first came down with GBS I had many sessions of Reiki which I truly believed helped and hey, that’s a good idea now. May have to do some searching for someone again.
Jeff, thanks for being you!
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December 16, 2006 at 6:11 pm
Hi
I recall no dreams whatsoever during the time I was in hospital. The only thing I recall is believing that my husband visited me about twice in over 4 weeks. He later told me that he visited every other day, although sometimes I would be asleep and he would leave.
Jeff – I would be interested in having some dreams analysed and if you don’t mind I will send you a personal message.
God bless
Teresa -
December 17, 2006 at 6:32 pm
Jeff,
I got motion sick as well. For ten days in hospital I seemed to be on board the boat from Denmark to England, Esbjerg-Harwich, in a very bad blow. I already decided not to sail again. I have had several attacks of this, apparently every time it is getting worse, and actually motion sickness was my first symptom.[QUOTE=jeff]Ninus, when I got sick I was on a train and was stuck on the train for 24 hours as I lost the ability to walk. For weeks after, when lying down, I felt like I was moving on a train. It was a sickening feeling-so I have trouble ever thinking of getting a train again-and I felt like I was tilting and in motion for months. I no longer have that sensation for which I am very grateful. I believe autonomic dysfunction does refer to the autonomic nervous system. Jeff[/QUOTE]
I have also had some very real and meaningful dreams and daydreams, but I find it easy to interpret them, as I take each part of the dream as a part of me and look at what it wants to tell me.
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December 17, 2006 at 10:10 pm
Jeff,
Did you say that you could not turn over in bed during the day yet at night were able to jump out of bed and crawl on the floor? How did you get the leg strength to do this? Or was this a hallucination? I find this fascinating because I chose to go the holistic route and stayed at home so I could keep taking my huge amounts of supplements. I wonder if this is what kept the fever away as well as the dreams, etc. I have been crawling for 10 weeks now but getting stronger. I tried to stand for a few minutes last week whie holding on to a chair. My feet and legs are still too numb to actually call it standing. But I did notice that I felt 5 inches taller than normal. It felt like an illusion. Do you think this is part of what you were talking about?
Also, while the GBS was still coming, I had this weird experience at night that I felt the bed had rotated 45 degrees. I judged this by the little light in the light switch. Yet, when I turned on the lamp, the bed was in its proper place. Totally surreal.
I try to visualize myself walking and I just can’t imagine it. Anyone else have this problem? They say that going through a tragedy makes one stronger. But this has been such a nightmare and still continuing that I feel I shall be permanently scarred from it – emotionally, psychically, etc. -
December 17, 2006 at 10:40 pm
Hi Carolyn: It was very strange. I could not walk at all nor move my lower body even to turn over in bed. I had to be moved every so often, but in my altered states I could actually jump off the bed and move around physically-it was not a hallucination. The nurses were freaked out and would not talk much about it, but one told me I was doing physically impossible things of which I have no memory. I remember the nurses putting me in a bed with an alarm so if I got out the alarm would go off and I remember them asking me if I knew where I was-I did not until the daytime. So it was pretty strange.
It is also interesting what you say about the emotional scarring. Tonight I was thinking of what Johnny Cash said in an interview with Barbara Walters. She ask ed him if he would go to heaven or hell when he died. He replied heaven because he had already spent enough time in hell. I fell like that in a way-the first two weeks of GBS was the deepest hell I ever experienced or hope to. It does scar us in a way-I am a psychologist and am quite sure I have PTSD-I have flashbacks to the hospital or train I was on when the disease struck. The pain was so overwhelming and because of my nighttime antics the doctors took me off all pain medication-it was hell indeed. Yet I do feel stronger for the experience. It has changed my life in so profound a way that I feel that I am living as I am meant to now and that feels good and right even though it still hurts a great deal. I believe everything that comes to us has meaning, so hang in there. Along with the scars that may never go away comes an inner strength that allows us to get through it-perhaps I should so go through it because I am sure that the residuals will never leave me. My wife, who has been through hell with me, tells me this is the perfect disease for both of us in the ways it has changed our lives. I think that might be true for all of us, so I would suggest you look for the meaning in what has happened to you. It must be there and if you can find it it makes the suffering bearable. Best to you and hope things improve, Jeff -
December 18, 2006 at 4:24 pm
I agree Jeff, GBS is hell. I often refer to being sick as my own private hell because no one in my family can even come close to understanding.
As for dreams and such, I have always dreamed vividly but lately they have been so frighteningly real I actually wake myself by reacting to them (usually verbally or emotionally). I am no longer on medications and consider myself to be 95% recovered. I dont remember anything outstanding as far as dreams or sensations while I was sick. Has anyone else experienced realistic dreams after being ill?
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December 20, 2006 at 2:08 pm
so, … hello, again!
the abyss is definitely a draw, and dreams can help connect and guide.
a while back in a previous incarnation of this forum, i recall a dream thread and a person doing a research paper on dreams and GBS – anyone know of the progress/results of the work? i’m interested, yes.
best wishes in this holiday season to all,
ferenc -
December 20, 2006 at 2:19 pm
Hi Ferenc: I was doing the research but got bogged down because didn’t get enough dreams. It is picking up a little though as there is a book containing a chapter on the author’s dreams during GBS and because people on the forum have contributed some. Hope to get more. Jeff
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December 20, 2006 at 2:40 pm
hi, jeff. thanks for the quick reply, and i hope to someday read your paper!
should we post a call for dreams contest on some appropriate forum? winner gets a free on-line consultation with a jungian guru.
arechetypes forever,
ferenc -
December 20, 2006 at 6:27 pm
Ben was vented and completely paralyzed and had strange dreams where he was all over the hospital. What was odd to me was that he continued to have nightmares about me, in particular, after coming home. I would have to wake him up in the middle of the night because I could tell he was having another one. His whole body would start shaking.
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December 20, 2006 at 10:29 pm
[QUOTE=Shannon]… I could tell he was having another one. His whole body would start shaking.[/QUOTE]
must have been quite an ordeal for both of you …
i’m sorry i’ve been offline for a while and don’t know your and his story.did he share his vivid dreams with you or write them down? they can be scary, lucid, and almost too real …
love and peace to you both,
ferenc
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