Icu delirium

[Natty1234]

Hi my name is Nathan and I totally agree with some of you icy was amaZing care was in icu for 6wks experiencing terrible hallucinations Whalen I was transferred to ward e4 they didn’t have a clue and just thought I was being. A pain and horrible and mad , but it was the delirium quick took about 5wks to go away that wasn’t me , but I couldn’t help it and thought it was all real I think icu delirium should be made more aware on general wards

[Sepsur]

I agree. There are two types of delirium too. Hyperactive & hypoactive, the latter is much less easy to spot. A brief introduction to the complex ramifications of critical care, ie muscle waste, delirium, neuropathy & cognitive dysfunction- should be included in nhs staff induction programmes

[Skyehammer]

I was on Life Support for 3 weeks possibly 4 - when I eventually made it to a ward [ I was put in a room of my own - not sure why ] I told my Consultant that I'd experienced a nasty sexual assault , been held prisoner by a gang of drug dealers etc etc and could it have caused my sepsis - looking back it was very funny but at the time it felt real - the Consultant believed my story initially and told me to report it to the Police asap - then the following day another Doctor came to see me and asked me could it have been a dream ?

I went through the timeline leading up to my illness and realised it couldn't have been possible and that it was indeed a nightmare . Not the ordinary type of nightmare , this felt REAL .

After getting home 3 months later I experienced vivid flashbacks , a horror film would contain almost the same scenes as my nightmare / fever dream - lost in a mental asylum etc - going up in a lift only to be back where you were etc .

i eventually agreed to see a Psychologist but by that time a year or so had passed and I didn't think anyone could help remove these memories from my brain so I learned to live with them . It'll take time but things will get better .

It's been 6 years since my episode but I can still recall my fever dream scene by scene still - surviving a life threatening illness has a huge impact on you - the Doctors all told my wife I should have died and even by some remote chance had I lived I would have had brain damage - I came out unscathed which left me wondering ' Why me ? ' but I accept I'm still alive and try to get on with life .

Good Luck .

[Natty1234 in reply to Skyehammer]

Yes sky hammer it’s been twelve months since I was in Neville hall and gwent then flown to London’s and back to gwent my hallucinations were something else all of them family being murdered tortured the nurses were trying to kill me there were hidden cameras watching me lol 😂 but seriously 10 wks of endless nightmares even when I. Was awake was seeing things and hearing things I was a complete head fu:k I’m ok now but still dream about it every night but when I wake up I know I’m just dreaming now

[Skyehammer in reply to Natty1234]

Sounds similar to mine , I was sexually assaulted by 5 people one of them a black woman , turns out the Nurses had to hold me down one time as I was taking tubes out of my mouth - I think the dreams are all related to real things happening in the ward and a few of our insecurities thrown in too for good measure - I was flown from Skye to Paisley as it was snowing in Inverness , I'm Welsh by birth [ Anglesey ] so that's another thing we share !

[Mijmijkey74 in reply to Natty1234]

I live now with a permanent feeling of unease that lingers in the background. Never quite goes away, it's as if nothing is real. A nagging relentless feeling that nothing is real. That I'm in a nightmare still. Even question if I'm still in my coma & any of this is real as such massive chunks of time just missing. It's very creepy & everything & everyone seems sinister! That feeling of sinister I can't shake. Feel like I'm constantly looking over my shoulder. Like something is lurking, waiting, going to appear and grab me or creep up on me. Everything seems dark & sinister, my family seem different, like they are slightly different versions, darker, more sinister, glitchy & not to be trusted as something very dark lurking within them. I feel constantly unsettled & it's only getting worse. It's 2 years last month since I woke from my induced coma I wasn't expected to survive. My coma dreams were not scary, it was after waking that the nightmare began. Being awake " if I am?🤷" feels more omnious and unreal than my coma dreams. Awake everything & everyone seems & looks dark & menacing. Very unsettling.

[Natty1234 in reply to Mijmijkey74]

Just like me as tho someone is always watching over your back never settled coming up to 2 yrs now and like you it b was after icu didn’t know reality from horrific things and must of beer hallucinations but still think they were real but the ward I was put on didn’t help

[Mijmijkey74 in reply to Natty1234]

The ward I was put on didn't help me either. Not a jot!

Nobody nursing staff wise knew I'd come from critical care/ICU and been in a coma. I thought my parents had had me committed to the psychiatric ward it was that bad! Thankfully on my next admission to hospital I told them no way was I staying if they were thinking of admitting me to that number ward again. Thankfully they listened to me and I was admitted to another ward that was much much better.

[Sepsur in reply to Skyehammer]

icusteps.org/assets/files/b...

This is worth a read 😀

[Natty1234 in reply to Sepsur]

Thanks m8 it’s a interesting read the thing they say was true for me

[Natty1234 in reply to Natty1234]

I think no one understands how bad it can be unless you’ve been through it yourselves I still havnt come to terms with it yet and cant talk to people bout it got a lot off my chest talking to physiatrist think I need to go to icu steps at county hospital wales but still don’t want to remember the worst days of my life

[Sepsur in reply to Natty1234]

To recount your dreams, although it didn’t remove the subject matter from your mind, was freeing. I felt trapped by their appalling content & that my coma had unearthed some really unpleasant ‘hidden’ fantasy life. One episode involved me repeated setting people on fire.

[Natty1234 in reply to Sepsur]

Yes m8 I know you don’t understand it unless you’ve been through it !! I don’t think I’ll be my old happy fun loving person again ?

[Sepsur in reply to Natty1234]

You might surprise yourself. 3yrs on, I’ve got more perspective on life. Busy ridding myself of toxic relationships

[Natty1234 in reply to Sepsur]

I know m8 just can’t see it it’s been 10 months since icu but been in hospital twice this year 2 months I was nearly 2 months in icu and another 3 months icu I’m not the person I was I know it takes time but when will it end every day ids a massive struggle I even tried to top myself in June I just want to b the old me

[Sepsur in reply to Natty1234]

Is there an ICUsteps meeting near you? Some hospitals have an ICU support group

[Natty1234 in reply to Sepsur]

Yes m8 about 20 miles away but I couldn’t talk about it the physiatrist said I had off the scale ptsd and paranoia but hopefully will. Maybe get there in the end ,if I’m still here ???

[Sepsur in reply to Natty1234]

Sometimes there is comfort in being with people who have experienced the same thing.

[Copse77 in reply to Natty1234]

Time will really help you to heal. The further time goes on the memories will become more distant and you will gain a perspective. I know as seeing a member of my family go through this ICU delerium was upsetting. I didn’t understand at the time. Below are some useful resources to read that may help,you.

[Skyehammer in reply to Sepsur]

Thank you , Sepsur .

[Mijmijkey74 in reply to Sepsur]

Very interesting, A small amount applied to me, the rest not. Nonetheless very interesting to read, but knew much of it already. There are those whom don't. For them it's very informative. Thanks for posting the link for us all.

[Copse77]

You may find this radio programme will help you. It is by a former ICU patient who had experience like yours.

bbc.co.uk/programmes/m0001jpv

[Copse77]

Also there is some really good info from patients and advice leaflets on here

readingicusupport.co.uk/for...

[Worriedmummabear]

Totally agree my daughter had a awful time when she was awoken from her coma moved out of icu to another ward far to soon she was left in a side room no buzzer as it didn’t work could not get out of bed to go bathroom nothing she was terrified her delusions were so real to her she was scared to death .

[Natty1234 in reply to Worriedmummabear]

I know was on ward far to early thought I was awkward and nasty they didn’t even know bout icu delirium was just left in bed slumped over no washes or shaves didn’t bother with me my family and friends had to do it was totally disgusting of ward c4 at the gwent !!! Something needs to b done about it !!hope your daughters getting there

[Worriedmummabear in reply to Natty1234]

So sorry to hear how you were treated it’s awful and so scary.i hope you are getting on well .she is doing ok thank you it’s been hard as she has two children and she woke with foot drop so had trouble walking and awful nerve pain so that took some time for her to get used too but she is a fighter and is getting on great thank you .she is just so scared of being placed back in coma she has lung problems so every cold is a hospital trip . More help is needed after a stay in icu .

[Natty1234]

Yes I know had pneumonia few moths ago it’s all the lying down they say it best to sleep with plenty of pillows , but I’m the same I e been through delerium twice and never want to go back to the worst days of my entire life I don’t think I could handle it a third time the mental state of u really suffers. Thanx

[Videodragons in reply to Natty1234]

For me it's been three and half years. I began to feel better in myself in the second half of that period: the memory of the hallucinations and the paranoia is not creepy at all any more. Hang on in there - and good luck!

[daffy23 in reply to Videodragons]

Hi videodragons, your comment has helped me today, I'm just over a year away from my ICU experience with Sepsis, and when the one year anniversary came I felt that I should be completely better because the consultant had said recovery could be 6-12 months. I still don't feel like me, oftens feel distant from the situation I'm in & my brain doesn't work quite right! I had some counselling a few months after I came home & that was very helpful. We did a timeline of the missing days that I had no remembrance of using my patient diary & info from friends. I also wrote out as much of the delirium as I could & gave it to the counsellor to read. She said she had never seen anything like it. But I felt that brought me some healing in that area. Now I just need the rest of my emotions to heal! I had a chat with a sepsis nurse yesterday which helped, but we don't have an ICU steps group in our area, although I see there is one about 40 miles away. May try to get to that. Also, I may contact my hospital to see if we could start a group. I find that people say I look well, but they don't see what's going on on the inside & usually it isn't appropriate to tell them! Sorry, I've gone on a bit! Once I got started typing I couldn't stop!! Best wishes.

[Videodragons in reply to daffy23]

Hi Daffy23.

You say "My brain doesn't work quite right". I know what you mean – I've noticed several other members of this group say the same. In my case it's remembering individual words. But on good days it's not an issue at all and the good days are becoming more frequent.

You also say "I still don't feel like me, often feel distant from the situation I'm in". Absolutely! I still sometimes feel as if I'm on the outside looking in on myself. "I don't feel like me" sums it up really. But again, that feeling is getting rarer.

All the best.

[daffy23 in reply to Videodragons]

thank you for your reply, it helps to talk to people who understand.

[Sepsur in reply to Videodragons]

They even have a term for it specific to being in critical care ‘cognitive dysfunction’.

[Natty1234]

I was good in the head afterwards but I discharged myself 2 days early but 2 weeks later felt really. Bad. Bone pain so want to Neville hall saying that I thought the ostiomylitis had come back but dr yearlsey completely ignored it no mri ct ext just doped up on 4 Diaz a day been in there 4 time ignored every time it’s spread now even had a private mri. Confirming this dr jack parry jones was gr8 saying in a letter I had if I had temp spikes fever go straight to a+e with letter for a long course of vancomycin but just dopes up again no Iv but was just ignored it at neville hall☹️☹️☹️☹️