New to this site and was wondering if anyone felt like sharing their ICU delirium stories with me? I had a carotid artery surgery done and that evening I code blued. I ended up on the ventilator for a few weeks and have experienced delirium in icu and I have been released from the hospital for 2 months now. I've noticed that I catch myself trying to remember what was real while i was in icu.
Here lately I have had a few episodes of forgetting things that i should know by heart and i caught myself and remembered what I was forgetting. I would just like to know for those that had icu delirium... did you still have problems a few months out? I did not have a stroke and my MRI was normal. I just feel like sometimes its almost like brain damage in my mind.
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Tammy58
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I had two phases of hallucinations/dream / delirium ( I believe)
The first phase was full on fantasy/ dreamscape/ nightmare. Very violent, surreal, sexually explicit and unpleasant, there was an awful sadistic quality to many of my encounters. There were also fantasies which were much more whimsical on occasion. Other times, I was a Japanese super hero who had forgot his super power back in Japan, a marine biologist - studying things that were just snapping seal heads
The next phase was much more a series of persecutions, I ( & my family) were kidnapped & tortured, constantly tied up, tied down - always crawling somewhere to escape, hiding in tight spaces. I would experience real grief as someone I loved died.
Then the dreams were more medical in nature - the nurses now tortured me instead of it being anonymous persecutors. I’m guessing the period that involved medical staff is as I am waking from coma and my brain is absorbing some factual information & obviously going into overdrive to make sense of what has gone on.
I wish you the best for your continued recovery. I know for my experience it can be a long and confusing process.
It has been 6 years since I was in the ICU and I still find myself trying to remember what was real. It took me a number of weeks before I realised the doctors weren't trying to kill me, because that is what I remember in very clear detail happening and the emotions I went through pleading for my life each day. It was exhausting, my few weeks in ICU felt like months, with no clear line between reality, the coma or delirium. I knew where I was though. I still don't know if some of the memories were real or not. My family find it too distressing to try recall.
I also struggle with memory issues but I did suffer brain damage due to my brain being deprived of oxygen for a period of time, but much of it got better over time. Some hasn't, but just like the delirium, I don't know what is what or why and I get scared to admit it to my doctor because I don't want to feel like I felt back then, and that helpless. Simple things like putting some pills down on a table while I grab a drink, I'll forget I have just done that until I notice the pills sitting there the next day.
Part of me is still missing, I feel it every day but I don't know what it is. It is like part of me never woke up, a lingering feeling.
Take care and I wish you the best, I hope in time things get easier to piece together during your recovery. I know how important it can be.
I have been out now for over a year and didn’t have any brain damage but I have 3 months memory loss pre icu. I was quite concerned about that at first but my course of CBT helped me to understand why I felt like that. Obviously I have no memory of icu. Post icu memory is getting better. My short term like in the last hour is so much better but a little iffy over the day. I too am not always sure what is real memory!!!!!!
Very very similar after coma and coma/icu recall and issues as my own Ribeena & Tammy58. It feels like you were there with me to stay what you have. I didn't have horrific or truly scarey coma events, some parts were errie and weird, but the last of the out of it induced events "really don't like to say/call them dreams" was filled with the purest of love by beings "not aliens" but not human linking arms around my bed which was more like a platform for a stage that rises from the ground but not like that either. They were levitating me with their minds flat on my back levatating/hovering above it. Whiist they spoke to me with their minds to reassure me and make me know l had to fight but filling me all of them as they linked arms or hands with the purest overwhelming untainted love not found ever on earth. Filling me with, repairing all my internal life wounds and freeing my mind and whole body of depression all the hurt and sadness sucked out and pure love pumped/forced in, it was overwhelmingly beautifully heavenly nothing bad. They were my protectors, they chanted out loud reminding each other whilst they still spoke to me with their minds not to break the chain and l was innately aware they could not hold their position for ever/for long to protect me from death but were certainly not letting me go or letting anything get me. They warned me not to catch the eye of this gigantic hulking grey dark cloud/smoke thing that was to the left or ripht "can't recall that anymore" think to the left, but not certain. It was inactive/asleep kind of but moving in it's dark corner. It was death, it was ominous but not evil and l was aware if it caught or l caught its eye and it became aware of me it would try to take me and that would be that end of me for good, nothing just gone. No heaven, no hell just gone, dead. It couldn't break their protective chain but they didn't want it alerted to try as it may have dug under them to try and take me. I wasn't however scared, just aware and it was just a matter of fact that thing was ominously over there and that thing was death. Whereas they l guess now were life, love, healers and protectors but who also relied upon my cooperation with them and my inner determination/fight to survive/get well and they were protecting and assisting me with it. Prior to that l had been a nurse in a children/babies ward it was 1940's and war time, but l was modern me in my mind, it got bombed to ruins the nazi's were coming, l was stood in the ruins wanting to save this special baby incubator that a inventor of a special type of helicopter which was hovering above at the time "i could hear it" desperately trying to winch me and that nobel prize winning incubator out with a to short broken rope before the nazi's arrived. I could feel their desperation to winch me and incubator out, the hospital ward was being bombed around me l was in old nurses uniform, it was war and l was desperate to protect that incubator that was so special. A baby may have possibly been inside it "hence my desperation" then a hand with a very long arm appeared a hand and arm l recognised but couldn't place it pulled me behind them as l ran to safety down a passageway through flap doors to keep me safe and get me away from that ward fast before l got killed. I realised some time after my coma that the hand and distinctive long arm was the arm of a very close friend of mine who had died in real life and why l recognised her hand, long arm but couldn't in my confusion place and never saw her face properly but after coma when away from icu the mole/birthmark on the arm l saw and the hair, plus height and blurry fast moving face and the strength in that hand and long arm l recognised as that of my friends who had often grabbed my hand as we ran up stairs, to catch a bus, taxi, lift, anything and l was laggiing behind as smaller she had my hand pulling me behind her but not so l would fall. They tell me no brain damage, no cognitive impairment but l feel there is, my mind has brain damage. I forget thing and start forgetting and sometimes catch myself forgetting. Tablets l just set down to take go untaken or taken and l have no memory l took them or no memory if taken or not. Lost memories, lost hours during day, not being able to do things the same as l could before, everything slower more difficult, things don't look right, people glitchy, part of me still submerged in coma, l feel it submerged. I am never far from feeling l'm going to be completely submerged back into it. Nothing seems real, things seemed staged, people look like actors l'm meant not to be aware that's what they are, all observing me. It has a sinister feel.In icu l did have delerium but it wasn't all scary so l kept my mouth shut. Knew they would keep me in longer if they knew what l could really see and feel. My hell started after my coma, after and during some of awake out of coma lcu and hasn't stopped since. I long to return to that pure untainted of protective love l felt in it not found anywhere on earth as it isn't earthly. Everything now is more difficult and nothing makes sense. It is a different world l returned to, not the one l left, and l don't like it, the people, my family glitchy, not as they were, hostile, unloving, detatched, removed, uncaring. Not the people/family l had before. All distant glitchy clinical removed people now. Maybe they were before and l never felt or noticed it, because l certainly came back from my coma with insight and ability to truly see people. Maybe that's why. I don't know. There was something in and under the floor of icu once awake that wanted to get me, it was evil and had a vibration l could feel it like a earth tremor. I still feel it there, watching, waiting, it likes machinery to hide it's coming, but it's presence is felt. It is the underworld where their is heat and steam, vibration and everything bathed in orangey red amber glow but it isn't hot or evil just feels it. It's just sinister more. There's more lcu awake and ward awake that went on, l kept quiet about most of it as already feared my parents had had me commited to the mental ward from icu because of the cracked up raving mad dementia patients wandering around in it with respiratory coughs wheezing and laughing manically to themselves who came near me peered in at me in my temporary side room just off the beds area of the ward. It was horrendous and very scary, a real nurse with blood stains on her uniform who looked like she belonged in a asylum porn film. She wanted to inject me in my stomach whilst the old demented hag peerid around the door cackling. The two nurses who ranted on about the devil and redemption who one refused to leave the room and one of them unplugged my bed so all the air went out of it and it was like l was lying flat on a ton of bricks. That wasn't delerium that really happened as the other nurse came back in when my parents finally arrived after l told my dad about it and she came back in after he called her in to check and she admitted it claiming some one must have accidently unplugged it. They did it on purpose because l wouldn't or allow them to preach at me about the devil and redemption. Who in their rignt mind does that to someone not long out of a coma. The only delerium was thinking my parents had had me commited due to the respiratory dementia patients walking around shrieking, wheezing and cackling. Prior to my parents arrival the nurse who rsefused to leave my side room as she sat staring me out was horrible, refused to get me a wheelchair to push me to the wards doors to wait for my parents to arrive, told me when l said if she didn't that l would crawl to them and asked her what she would do then she told me they would drag me back which then of course played further into my delerium of thinking l was on the mental ward that my parents had definitely had me commited and especially as when they allowid me the phone to call them my parents kept saying they were on their way but kept saying that everytime l called and they clearly were not on their way and were behaving weirdly like they had indeed had me commited and had no intention of coming at all. I yelled at that nurse who wanted to injected me in the stomach convinced they wanted to knock me out so they could turn my parents away when they did arrive or so that l wouldn't see them arrive as they had drugged me into sleep/knocked me out. Told her she wasn't doing anything to me until my parents were in my room, it was all sinister. And those two fogrine nurses really did say and do all that. My dad is no fool and figured those coniving pair out instantly and what they had been up to trying to intimidate me when l was completely alone in that side room with just those horrendous two nurses. Fake smiles to my parents faces, nasty once gone. Obviously l wasn't in an asylum nor had l been commited. It was a respiratory ward with many dementia patients on it with respiratory issues, but nobody had prepared me ahead for that. It truly looked, felt and sounded like the loony assylum. Terrifying. I was not far despite not being able to walk or even push myself up in bed from trying to hurl myself out the window to escape had my parents ultimately not arrived. I have a lot of determination that takes over and l would have found a way as my bed had been hired so l was level with the window to see out of it to watch the doors outsde for my parents arriving. I only had to find a way to open it and roll or try to jump out and determination and adrenaline from absolute fear does take over complete weakness and incapacity. I would have died had l managed to do that, but didn't care. I later found out l had been placed in the worse ward in the hospital that receives so many complaints. Once discharged as an outpatient and l had to be readmitted a few times l made it clear as hell they were not to place me on that ward again ever. They listened. On that horrendous ward l even had another horrible nurse tell me to shut the fu*k up or to to fu*k off. All heard her on the ward, she was reprimanded, none of us liked her, she was awful to patients but still has her job unbelievably!
Cognitive dysfunction is a real issue for ICU survivors - made more confusing by the nature of some of the sedatives. By nature some of these can create retrograde amnesia - where you forget periods in the past - sometimes way before hospitalisation - they can also cause anterograde amnesia- you struggle to learn new things, find words, names etc etc
My ICU experience is six years ago now and, looking back, I know I was not myself for three or four years afterwards. I'm sure it was some form of PTSD as I was having extended manic episodes; this despite being declared okay by a mental health assessment after twelve months (I admit I wasn't exactly truthful with my answers to some of the questions).I also did well on a post-ICU cognitive functioning test, yet I do have issues with my memory, short and long term. I also suspect some form of neurological impairment as I have problems with my balance and also worsened neuropathy, which I suffered with prior to my critical illness.
It seems that most people who've been critically ill go through an extended period of mental and physical difficulty after surviving such a traumatic experience. When I asked a nurse about not being warned about possible post-ICU problems she said it was so as not to overload already highly stressed patients.
I was in ICU earlier this year for 3 months and had the most bizarre dreams/hallucinations, so can definitely say that they are normal. They were usually “adventures” that involved escaping from somewhere; crumbling old houses, sinister cults, the Mafia, etc etc. I also did a lot of driving in my dreams, up and down the uk. There was also “space travel” - which I am sure was caused by all the telemetry machines in the ward. One night I also thought the nurses had put on some strange multi-media art show, with colourful lights and huge projected images, and that we were all living in Norway. Some other dreams are receding, but the above are all still vivid. I am still a bit foggy minded, and had actually forgotten some neighbours’ names, also family members’ ages, but things will come back slowly on a daily basis.
I was out of it in ICU for a month after being clinically dead when a big clot formed in my heart after an aneurysm operation. I has seriously weird hallucinations but none of them left me feeling threatened and some were actually so pleasant that I could quite happily have stayed where I was. But I realised that what did keep coming back was an image of one of my greyhounds Ted dressed as a nurse with a covid mask on and walking on his back legs coming to take my temperature, winking at me and saying, “don’t tell them Dad”
I think that although I was unlucky that things went wrong and that I still have abscess problems associated with tracheostomy wound I was very fortunate as regards hallucinations.
Sorry Tammy a few things I forgot to mention. Although prior to my op I was retired I am a musician. A composer conductor and performer. There are certain skills which have not been affected, I can still play, I can write down what anyone else plays, I can even improvise still but the ability to create extended pieces at will has gone as has any desire for promotion of my work. The portion thing I can live with but the barrier to the place where my imagination used to work really hurt the first time Itried to get there. It is not the sort of thing that I expect anyone medical to be able to put right as no one understands how this works anyway and the non creative bits are fine anyway maybe my hallucinations have used up my imagination for now. But I am not taking anymore drugs for it anyway. I refused all painkillers and I wonder whether this helped me with being relatively unscathed from bad delusions, although they were real enough at the time,
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