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Hallucinations

Larrythelathe profile image
24 Replies

Hi

I suffer from terriable asthma. It's been really bad the last few months.

About four weeks ago my family and I went to Alton towers. Half my family went from there to Wales for a zip line. My father in law and I stayed mainly as I was weezy.

I ended up deciding I need ED help. So my father in law drove me to Stoke hospital. I normal respond really well to magnesium. This time I could not. The hospital rang my wife in Wales and said they planned to ventilate me. She said to give me a chance I normally bounce. Anyway I went for 12 hours and I got really tired. My heart was doing 160 and my o2 was 72. I was on max the wall coukd give me. The Dr asked permission to ventilate me. I gave permission if the ED nurse who had been with me came. (I feel bad about this as she had finished his shift hours ago) she asked her boss who said ok she she came and held my hand.

That's about all I remember. My wife arrived and I was in a induced coma.

Whilst I was asleep I had things I am convinced actually happen but cannot have not happened

Some of the 'memories' are distressing. I was asleep for six days. They had alot of trouble waking me up apparently. After my stay in critical care I was moved to intensive care. When there I was pretty confused and saw things that just did not happen or real.

Since I've been home I have really struggled to get over the mental side.

My question is did this sort of thing happen to anyone else? How did they make it stop?

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Larrythelathe profile image
Larrythelathe
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Kit10 profile image
Kit10

Welcome to Iicusteps.

It is very, very common to have hallucinations and strange dreams, while on a ventilator, induced by sedative drugs. It's possible to have strange mixtures of dreams and real events, which I found very confusing. It may be possible to get information about what actually happened if that might help. Were you given an icu diary?

The hallucinations generally stop happening when the drugs stop, but it's also common to have flashbacks to them later.

I have experienced the first but not the second.

Many people who've been in icu end up with ptsd.

It is, in my humble opinion, so common that help to overcome it should be offered as standard, but it is not. What aftercare icu survivors get seems to be a real postcode lottery.

If you read through the posts on this site you will see a lot that's been written about hallucination and flashbacks and some advice about what people have found helpful.

I am still waiting for trauma therapy, so I cant speak to what helps.

I hope you can feel better soon.

Larrythelathe profile image
Larrythelathe in reply to Kit10

They did nor give me a diary no.

The fact I cannot figure out fact from fiction is my may problem. I am pretty tough person. I normally grit my teeth and keep going. I just cannot do it for this. I haye the loss of control.

Kit10 profile image
Kit10 in reply to Larrythelathe

I cant possibly know just how you feel but I could have said something very similar about myself. But I dont feel better for knowing I'm not alone, I need answers..

I struggled with what was real and what was a dream.

I managed to get a summary of what had been done to me while I ws unconnscious. A nurse at the 4th hospital I went to contacted the ward manager of the icu I was originally iin. I think everyone ought to be told this automatically, but clearly it doesnt happen.

That helped me because I had dreamed an mri scan and a ct scan, and it turned out that they were real, and happened in the order that i dreamed them. I was very puzzled about why in my memories sometimes I could speak and sometimes I couldn't until I found out about how tracheostomy tubes work and the difference between "cuffed" and "uncuffed". I found lots of pictures using google. Some of the pictures gave me a bit of a nasty shock by showing tubes I thought were a dream. It was a big shock to find I'd had a lumbar puncture that I have no memory of, because I once had one when conscious and it was so awful there's no way I would have consented to another.

All in all I found a lot of details from my dreams were at least partially true.

Theres an organization's called PALS which ought to be able to help get hold of your records or pass on any feedback to the hospital. They have local branches, they may be traceable via google, hospital staff can get contact details, gps ought to as well.

Some of my dreams were obviously complete fiction e.g. climbing a hill made of Lego bricks, the hedgehogs hibernating in the lights.

I still do not know whether some of the conversations I had with nurses were real or a dream, and I probably never will. I wish i could say that surely they cant be real, no nurse would be so uncaring, but some staff are clearly so stressed and burnt out that they can sound heartless, even if they dont mean to be.

I am also a resilient person but the whole icu experience has overwhelmed my coping mechanisms. . I feel like my body no longer belong to me, it has been so violated.. I am shocked, and angry, by how little help and support there is, I think they all assume that of course everyone will get the comfort and reassurance they need from partners and relatives, or that we are all so grateful to be alive that we will forget what happened.

I wish I could tell you what has helped me, but I'm still waiting.

in reply to Larrythelathe

Contact the hospital PALS, and they will direct you to how you can get hold of your hospital record. I found it very useful to read through the daily clinical notes to find out what was actually happening when I was in ICU.

Naomita profile image
Naomita in reply to Larrythelathe

After I was discharged home having been in an induced coma for nearly 3 weeks and in hospital for nearly 7 weeks I was very confused about what had happened to me and what hadn't happened. I wrote everything down, and then talked to my husband about these 'dreams'. None of them happened - I wasn't tortured, he hadn't been very ill in hospital (it was me) etc etc. This took many weeks but helped me to understand a lot of what happened, though more than 2 years on I still remember all the dreams in great detail. ICUSTEPS have been very helpful when I found out about them - a website, lots of leaflets and now meetings face to face in some areas of UK. Good luck.

FamilyHistorian profile image
FamilyHistorian

Hi LarryThe simple answer to your question is yes!

Your hallucinations have no bearing on who you are and more often than not the content can’t be explained. Having said that it is thought that if it involves water it may be because you were on a ripple bed. In my case I thought some of them were based on my memories and of course those were hallucinations as well. Now, some 2+ years later, I can still remember every detail of them but they don’t cause me any problems. Having said that I do have memory issues and can’t always identify what are real memories and what aren’t. I have treated my hallucinations as living in another world for about 2 months and spanning maybe 3 or 4 centuries.

Strangely enough the hallucination that I had the most problems with was the clock in my hospital room. This had multiple faces and lied about the time. When I left hospital this clock transferred its powers to the toaster in our kitchen. When ever I went in there it followed me around. I saw it off.

I came out into lock down and there was no support. Eventually I had CBT which enabled me to build strategies to deal with a range of the after effects.

Larrythelathe profile image
Larrythelathe

That's really odd.

I saw my sadly passed twin brother. This one hurts. I thought I was trying to sit up but I was so heavy I could not pull myself up. I dream my wife telling me to fight and I was saying I can't. I think this is when I was fighting the ventilator. I was also thirsty and the nurses we all drinking in the centre nurse station. I saw my son alot.

When I moved from critical to ITU I was convinced the bathroom door was a mobile phone. The clock thing is interesting as I was convinced it was 7am but the nurse showed me it 2am on her phone.

I had lots more dreams. One where a dr said I could go home but then said no. I think this was each time they tried unsuccessfully to wake me.

Its not like TV is it. You don't wake and just return to normal.

in reply to Larrythelathe

I thought the blue curtains were knights in armour........also my dead father was running a bar in Cyprus......so many...

Larrythelathe profile image
Larrythelathe

One more thing.

Was anyone sick. I mean vomiting. I covered myself and a nurse when I first came back.

She was lovely. Said the kindest thing. I managed to say sorry. She said. 'Duck you have nothing to be sorry for. You are very ill do what you need to and i will help you' I feel asleep again 😀

in reply to Larrythelathe

Yep. I had one big vomit that came from no where, and the same my team were very forgiving.

Tedsdad profile image
Tedsdad

Don’t worry all have us have experienced it, know what we mean and know that anyone who hasn’t experienced can never really understand it. I was under for weeks and some of the things that”happened” to me are still very very real. The hospital handled it very very well even though to start with I simply did not reall

Sepsur profile image
Sepsur

My delirium stopped of its own accord about 11 days after sedation was removed.

It took me a long time to come to terms with what I dreamt much of which I haven’t told anyone. Thankfully I wasn’t plagued by hallucinations or flashbacks and repeat dreams after this event. It has affected me on a fundamental level all the same.

If you find you continue to have intrusive thoughts & dreams, the common advice is to seek professional help, trauma memory can get stored in your brain differently & in a peculiar place that stops you from being able to properly process the memory - so it fails to because ‘history’ and keeps popping into your head like it only just happened

Larrythelathe profile image
Larrythelathe

I am going to see the outreach team at my local hospital. I had a good chat with one of the nurses.That was ok. She said what I thought she would but was nice to hear. She also said it will take time.

I've been busy today and only happened twice.

Flashblacklab profile image
Flashblacklab

Hi there I was with my mum in Stoke Mandeville ICU throughout Feb and March. She was in the coma 9 days. The delirium fortunately was largely benign and she was almost always smiling at her hallucinations although the thirst and being convinced staff were saying unkind things or too too rough with her did crop up occasionally even though I was there and could see how amazing they were both with her and other patients whose relatives weren't about so it couldn't have been merely for my benefit. Mum was "fortunate" in that her first week in ICU she was conscious so the staff really got to know her as she initially bounced back before going downhill with pneumonia.What I wanted to flag up is that we were given a rough estimate of ONE WEEK per day on the ventilator before the entire effects of the strong mind altering sedatives should wear off and then of course a year to get over the rest of it. Mum us over 80 so 6 weeks home and we are managing her expectations as to how much of her "mojo" she'll realistically get back but we kept a diary in addition to the staff and she will read these at some point.

in reply to Flashblacklab

Hi. I was in stoke mandeville ICU initially for 4 weeks with Sepsis and then returned to ICU after contracting Covid on a ward. I was there for 10 weeks with Covid. I was ventilated for about 4 or 5 weeks and had a trachy. I had very bad delerium when in ICU. But agree the staff were great and it must have been quite difficult for them. The delerium passed once I came round and knew where I was. I was given an anxiety tablet for about 3 months. My next of kin kept their own diary which made interesting reading because to them I was saying lots of things that made no sense as related to my dreams. I obtained my hospital record which gave me a daily run down of what happened each day in reality. Each nurse wrote their notes for the shift, as well as the physios and the doctors. This really helped me understand what happened. I did have one follow up with some of the ICU team on the phone but perhaps was a bit too early after I had returned home. I spoke to one of the physios that saw me, when I was sedated, more recently and that was good to have a chat with them. I am two years since I was admitted to SM as an emergency, but am not haunted by the experience, I suffer fatigue, and have some permanant effects from the sepsis. I dont sleep well at night, but wasnt the greatest sleeper beforehand.

Kit10 profile image
Kit10

Did your relative's notes of things you said match up with your memories of your dreams?

My memores include lying alone in a side room fo r da ys while 'my' nurse sat out in the main ward with her other patient. Sometimes she sat outside my door (writing notes) but as I couldn't speak or operate the call bell she might as well have not been there. Every couple of hours shed put her head through the door, say 'Are you ok?'' I'd shake my head no, she'd walk away. I haven't seen any notes written by nurses but under those circumstances how they could be anything other than a work of fiction I cannot imagine.

If nurses spent half the times the currently spend writing notes, actually doing caring things for patients, it would improve the quality of care significantly.

in reply to Kit10

The care I received in ICU was very caring and sympathetic. The notes the nursing staff make are very important and assist in monitoring your condition and help the handover. In respect of my families notes yes the conversations I had did relate to some of the dreams I was having. ICU is a strange place and those that have not experienced it dont appreciate fully what is going on. I was very close to passing and without the care of the doctors and nurses clearly would not be here. Necessarily the treatments given are extreme.

Larrythelathe profile image
Larrythelathe

Yes I can make my dreams fit real events. First one was me being bad on ventilator. I dreamed I was telling my wife to just let me go I was tired and nothing left. The other was thirst I saw people drinking all around me. Worse was a dr coming to see me saying he thought I was ready to go home. Then he abruptly said no and have a good weekend. He the left. I think this was when they were trying to wake me. They tried all day and gave up and drugged me for the night. Apparently this is because they don't have enough staff at night. This was brutal for my wife who had tried with the Doctors and nurses for the entire day.

The guys in ICU where nice. They looked after me and kept my wife smiling. I pulled some stuff from me and they did not get cross they just calmed me. Waited until my wife came and got her to talk to me and they redid.

The guys in ITU where awesome a few in particular really helped me. I was very lucky. One of the ICU staff done overtime shift in ITU. She had look after me in ICU for four shifts. So she sat and went through it all. She also answered most my questions. She avoided answering anything to do with mental state.

In ED one nurse I latched onto as she had been trying to get me breathing all day. I asked if she would come hold My hand in ICU. I worked out she must have worked way past her hone time. I bet she did not get overtime. She did it anyway. Held my hand until I was asleep. I can't remember her name, I would love to be able to say thankyou.

I am still screaming my way through the night.

I love the NHS. I owe them everything.

stevet11753 profile image
stevet11753 in reply to Larrythelathe

Thirst was a big issue for me too. The nurse station nearby was a bar for the doctors and nurses and the area behind me, which was actually the rest of the ward, was a nicely carpeted area with coffee tables and chairs for them to relax in. I had feelings of abandonment at night and in one of my dreams I was left alone by a couple of male nurses who went off down a corridor to a room with vending machines and a TV, and that's without mentioning the rabbits!

Larrythelathe profile image
Larrythelathe in reply to stevet11753

Apparently when I was awake I was very worried about who was feeding my ducks. They were in the bath. They should not be fed bread. I have no ducks, but did feed local ducks bread when I was a kid. I read a article a few weeks before. Our brains are weird.

I have a follow up in my local hospital Thursday. They just rang to check in on me.

I am finding I want to be busy. So I am cleaning the bbq. Then I am going to power wash the bird mess off the deck. All done very slowly. I am aiming to be dog tired for bed times. That way I get fours sleep before I start dreaming.

Lexielulu profile image
Lexielulu

When I woke up in icu I didn’t know I had woken up (I thought my dream was real and what had happened) and I believed I was in a shop mixed with a hospital as I saw people buying things at a desk, I also thought the doctors working at their desks was a library . I remember seeing my cousin and I thought she was in a visiting portal , weird stuff . but it got better

in reply to Lexielulu

Yes it seems to be the difference between dreams and these ICU hallucinations. I too thought mine were real even after I woke up, and it was only once I spoke to my nurse that I realised I had been in the hospital all the time.

Lycrawarrior profile image
Lycrawarrior

After a cycle crash I was in ICU a relatively short time, 17 days, and in an induced coma for 5 days. Despite the short duration, I have what seems like a head full of hallucinations, far too many to relate here. When I got home I searched for the gun that had been loaned to me whilst in the hospital! Fortunately both I and my wife are of a logical mindset and by applying logic to many of the 'dreams' I have come to recognise them for what they are. I do sometimes get fleeting flashbacks to one or other of the strange scenarios from that time. Mostly they are actually quite pleasant (even the pub!) and so are not a source of concern for me.I do wonder just what I said to the brilliant staff that looked after me, what was dream and what was real?

Lellynelly1 profile image
Lellynelly1

Hi Larry. My experience was very similar to yours. I have lots or ‘memories’ which I later discovered aren’t real. I was in ICU in UCLH (London) for 3 weeks in Dec 2019 and a coma on life support for 10-14 days. Several months later my husband contacted them and we got a copy of my medical records (that made interesting reading!) but also, and most importantly I was able to talk a lot to my husband about things like the room layout etc and all my memories, to try to figure out what was real and what wasn’t. I also was put in touch with a therapist, and I have found talking through a lot of stuff with her really helped. There are still certain things that trigger really horrible feelings though, but I try tomdistract myself and get on with life.

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