Post ICU trauma

[TLCS]

Hi, I am 7 months post critical illness. I spent 12 days in an induced coma following severe pneumonia. I was mechanically ventilated. I suffered with very traumatic coma dreams and would like to speak to anyone that has been through the same. I am struggling 7 months later luckily with no physical effects anymore but the mental PTSD is very difficult. Thank you x

[Sepsur]

I’d say you are in the right place - has anyone spoken to you/ recommended EMDR therapy?

[TLCS in reply to Sepsur]

I’ve had some counselling through work which did help initially to talk it through but it was only 6 sessions and that finished a few months ago. I haven’t really looked into EMDR actually no, have you?

[Sepsur in reply to TLCS]

tbh - by the time I had talking therapy, I’d sort of gone through the worst myself. It did help to validate my experiences.

PTS is a very different issues to treat. The effects of trauma on the brain, is it fails to process and store the memory in the correct place.

I don’t know about you but my delirium was ‘real time’ to me not an upsetting dream. I experienced deep psychological torture, what felt like physical torture, grief etc etc etc.

My brain must have been in meltdown.

When this sort of complex ptsd occurs, the brain places the memory in the wrong part of the brain. If you image a cabinet with 3 drawers.

The bottom ( which is huge) - is memories from a he past.

The middle is much smaller and contains present day and the top drawer is the future and is minute.

The brain can store trauma memory in the present day drawer, hence it is ever present, it isn’t consigned to a chronically past- event-memory.

EMDR helps the brain to put each intrusive memory back in the correct drawer. Loads of people I know, swear by it. It doesn’t work for everyone - there is always the option of CBT.

[TLCS in reply to Sepsur]

Thank you for this. It feels almost as if I’ve written it which is very comforting. Talking therapy also helped me feel validated but that is what I have always said to my family, I’ve worked through it mainly on my own in my head.

I also understand what you mean about real time. Everything that happened to me was incredibly traumatic and not only psychological but physical torture. My mum died on the floor infront of me. I was screaming at everyone around me to help her and they were just staring straight into my eyes ignoring me. My screams were getting louder and louder and no one was moving. I was kidnapped, raped and tortured in the back of a van. All of this very very real and was happening in the hospital or when I was being ‘transferred’ to another hospital. These are just a couple of the horrendous things that happened in my sedated state. It took me a while once I had woken up to believe that none of this had happened. When I first saw my mum I thought that was a ‘dream’ and that what I had been going through was reality.

There is so much to unpick. So much to re-live and I think I need to write it all down.

thank you for the analogy of the brain, that makes a lot of sense

[Sepsur in reply to TLCS]

we have a drop-in every Thurs night on zoom - if you want to join - email : [e-mail]

[Lux95]

Quite a few of us here have been through the same thing, so you are not alone! I spent a month in the ICU with three types of pneumonia and ARDS; sedated for about two weeks. The nightmares were terrible and seemed very real. Two and a half years later, and some physical, cognitive and emotional side effects still remain. I was just thinking about this, as today has been a bit more difficult than most for me. Recovery is usually a slow process, but everyone is different. For most, I would say 7 months is still in the initial recovery period.

Ask anything. It helps to talk to others who have been through it.

[TLCS in reply to Lux95]

Thank you for your kind reply and I’m sorry you’ve been through that too. It’s taken me by surprise how I’ve been ‘ok’ for a while now and suddenly I feel like I’m right back in it and can’t stop crying and remembering it all. It’s a very lonely place to be so it’s nice to know I’m not alone although I wouldn’t want anyone else to feel like this!

[Lux95 in reply to TLCS]

It is hard to try and return to a normal life in the first year (and sometimes longer) - work, family, chores, etc. The level of trauma we've experienced takes a huge toll on us physically and mentally. I think sedation chemically suppresses our emotions in order to keep us calm, but now we have to deal with built up tension, fear, etc. I see you commented that a consultant said we don't go into REM sleep - I had been wondering if that was the case. It certainly makes sense, given the nightmares, and aftermath. I cried uncontrollably several times after release. Not normal for me.

It is common for us to be easily angered or frustrated, feel intense sadness or depression, a lack of filter in conversation (saying whatever we think), have problems with short term memory, sensitivity to sounds, lights, or sudden events.

I still can't handle stress and have to take life a bit more slowly and casually.

It helps to talk to others; be patient with yourself, and remember that what you are experiencing is a normal part of the process. If you have any ICU survivors in your area or a survivors group, it helps to connect with others in person.

[TLCS in reply to Lux95]

It is common for us to be easily angered or frustrated, feel intense sadness or depression, a lack of filter in conversation (saying whatever we think), have problems with short term memory, sensitivity to sounds, lights, or sudden events.

Wow! That is exactly how feel. I feel incredibly over stimulated all the time. I need a lot more silence, sounds in particular make me very irate and anxious. I hated the silence when I was alone in hospital so I’m surprised I need it so much now.

Yes, the sleep deprivation makes a lot of sense to me now. You are basically awake, for however long you are sedated for. Your mind does not rest. Depending on the reason you are in the coma obviously. Every injury and illness will bring a different level of consciousness.

I wish my family could get inside my head. There’s no way of ever explaining what it was like. It helps a lot to know there are other people going through this x

[Lux95 in reply to TLCS]

I know it is frustrating, but if it helps to know, your post is exactly what I needed to hear today as well, so you are helping others too!

"I need a lot more silence, sounds in particular make me very irate and anxious. "

Yes! Same for me, even 2.5 years later. I could multitask easily before - listen to a conversation while driving, work while listening to music, etc. I can't now. A lot of noise, crowds, or people competing for my attention irritate me and are exhausting.

Yesterday I had to take my son to a class, and spent part of the day roaming around doing some shopping, thinking a day out would be rejuvenating. It wasn't. I had to come home and lay down, covering my ears to be in silence from family noises for a while.

I can only walk through a store or be in a crowd for a few minutes before I'm completely overloaded. I still have very slight double vision issues that tire my eyes out easily, and thought that had been the main source of this sense of overload, but you have confirmed what I suspected yesterday - sensory overload is another PICS side effect. I searched for it yesterday evening on two different post-ICU/PICS forums and couldn't find any posts on the topic.

Also similar to your experience, being alone, awake in the hospital, unable to even listen to pick up a phone or tablet to listen to music was maddening. I spent a lot of nights wondering if I was going to lose my mind.

I'm in the US and we don't have any in-person post-ICU resources locally, and the few that exist are out of state, and fully booked. Exercise can, but I don't feel refreshed like I used to. Exercise just feels like going through the motions, but going nowhere.

I know other personal accounts are helpful, but of course they don't fix the problems you are facing. But I do hope it all helps in some small way. It isn't much, but we all really want to help one another because we know how hard it is to do this alone. Family and friends who haven't been through it really don't understand, even though they may try as best as they can.

All I know to do is take a deep breath, pray, and just take it all one day at a time. I've also found taking up a relaxing hobby can help.

[TLCS in reply to Lux95]

Honestly this is quite mind blowing.

Yes the nights where you thought you were going to go insane. I was too terrified to close my eyes again so I was awake for 3 full days. They gave me all the sleeping aids they could and they couldn’t believe nothing was working but I said am going to fight with everything in me to not close my eyes I see all those terrible things again. In the end they let my mum stay overnight with me in the hospital room and I slept all night just knowing she was there and I wasn’t completely alone. My room was at the end of a long corridor and behind a closed door and I was so scared I would fall out of bed and die alone.

The last few days have been what I can only describe as an out of body experience. I’m here, going through the motions of the school run and work but I feel like I’m on another planet to everyone else I come into contact with or even walk past.

It does help to know, a lot. I feel like I should shut up and stop talking, everyone else on here has their own stuff going on. It is good to talk though, it is helping.

A relaxing hobby is a good idea, I just don’t feel like I can do anything other than survive at the moment and get through the days.

I hope you are ok

[Lux95 in reply to TLCS]

By all means keep posting. You are in the midst of sorting this out, and it is a lot to deal with, on top of life itself. We are here because we want to help, and we understand from experience. We wouldn't be if we had too much of our own to sort out. It is very encouraging to see others come here, post about their struggles, and feel a sense of relief when they find they are not alone. It may not replace having support in person, but you need to talk, ask questions, or just vent, and this is a good place for all of that.

It does get better with time, and it does take time and patience with yourself. But you are taking a first step - talking it through. And one post here or conversation there won't necessarily solve anything (though learning as we go can be a tremendous help); but every bit along the way will ease the anxiety and fear, and give you the strength, determination and tools to adapt.

As many here have said, an ICU stay is a life-changing event. We don't someday forget everything we went through and return to our old selves. And that's ok- it's part of taking life as it comes, and making the most of it. Be encouraged when you learn to adapt or handle some new challenge. Be enthusiastic about that moment of silence, rather than feeling guilty. And never feel guilty about asking for help or just a listening ear here, or anywhere else.

[TLCS in reply to Lux95]

You write so well. Thank you so much x

[Copse77]

here is a link to resources I find very helpful. In particular the one on trauma and its effects is very helpful. readingicusupport.co.uk/for...

[CCXLI]

Yeah much like yourself I am 7 months out of ICU and still in early stages of recovery both physically and mentally. Was in an induced coma for nearly 3 weeks and ventilated for just over 5 months. I would say recovery time and post ICU symptoms varies for everyone. I too had Delirium which I initially thought were dreams during the coma state, but like one of our members I like to class them as alternative reality because technically we were not sleeping at the time.I echo the others and say talk away and ask anything, whilst I found EMDR therapy to be a great help, there's no better coping mechanism than talking to others who have been through the same.

[TLCS in reply to CCXLI]

Thank you so much. That’s interesting what you say about alternative reality. A friend who has a lot of experience in ICU as her husband was ventilated and sedated for months said that the consultant explained to her that people in a coma are not sleeping, they are incredibly sleep deprived because we never actually go into REM sleep. So that makes sense about it not actually being a dream. Yes I need to talk about it more. I think I’ve been bottling it up over the summer holidays looking after the kids etc and just thought I was ‘fine’ but suddenly, I’m really not fine x

[Raising8]

Hi firstly thank god you came through it and are on your way to recovery. I was in exactly the same situation 2 and a half years ago with double pneumonia and had to be put into an induced coma to save my life,like you I had horrendous dreams,hallucinations including like you being put in a back of a van! I'm still in recovery and it's still very early for you but I would keep in contact with your icu psychologist for regular support and keep using this forum x

[TLCS in reply to Raising8]

I’m so sorry you went through it too xx unfortunately, this happened to me when I was on a work trip abroad. The hospital I was in was incredible. What this meant was that on my return to the UK, I had absolutely no aftercare whatsoever. I managed to ask for some physio through the NHS to help with my muscle issues and pain but other than that, it was like nothing had ever happened to me. Maybe that just makes it all a lot harder x

[Raising8 in reply to TLCS]

I would still contact your local hospital and ask to be put in contact with the icu psychologist and explain what happened and that your struggling x

[Misterpaulwood]

Spent eight weeks in a induced coma after respiratory failure, suffered horrendous PTSD and nightmares, have now spent a year having EMDR therapy and am now 95% better, I cannot recommend this type of treatment enough, it has changed my life....

[Inpain2024]

I’m sorry you went through such a tough time. I too was in a medically induced coma for 5 weeks. Some of the dreams were terrible and even now I can’t work out if any of it was real. The reason for my coma was a heart condition for which I have since had surgery for. Unfortunately I still have some physical after effects from the coma including nerve damage in my feet. I’m still having nightmares and often wake up panicking that I’m back in ICU. I was mechanically ventilated for a time but due to some swelling in my throat I was given a tracheotomy so the scar is a constant reminder.

[Misterpaulwood]

I'm Eight months in to emdr therapy with amazing results, is was in a induced coma for eight weeks and had severe PTSD... Nightmares are all but gone and flashbacks are rare, EMDR therapy is amazing.Paul at the Steampacket Inn Knottingley

[FamilyHistorian]

I don’t log on as frequently as I used to. You are certainly not alone. I was in my coma for just under 2 months and when I came round I wouldn’t sleep as I was afraid of not waking up. 4 ½ later I can remember all my hallucinations but they don’t cause me any problems any more. I have treated them as living in another reality which spanned 3 or4 centuries. The problem is that I find it difficult to differentiate between real memories and those embedded in my alternative reality.

I came out of hospital into covid so had no support but was lucky enough to be able to pay for CBT which I did over Zoom that enabled be to develop a range of strategies. I also found Critical Care Support Network which helped me realise that I wasn’t unique. We are all different but the same

[ZanderB]

Hi TLCS

I’m a bit late joining this thread and expect that there’s nothing I can really add to the above. My experience of ICU was very similar to yours with the vivid, terrifying and very real dreams.

Coming out of hospital is very difficult. I was pretty incapacitated - 3+ weeks in a coma screwed me up pretty badly physically and mentally. Time helps a huge amount and if you can keep somewhat busy, so much the better. Can you think of any things that you wanted to do but never had the time for? Photography, learning a language (Duolingo is great for this), touch typing, writing, making a photograph album (hard copy, not digital), etc? These are just some other things that I wish I had done (but, to be honest, I think just recovering took up all my time and energy).

The only support I had was a psychologist for almost an hour once every two months but it was usually helpful. Then, later, I found another psychologist who offered EMDR and I think that really helped.. I was rather wary of it beforehand, but there was nothing to lose by trying it and I’m glad I did.

Almost 4 years on now (13 October 2020 was the day it all started) and I have been enjoying life the last year and a half. But it did take me 2 1/2 years to get to a good place. I think the length of time was in part due to recovering during Covid which meant I was unable to get back to normal life. I still wish I had never gone through the experience, but my life now is, I am sure, more rewarding and interesting then wouldn’t have been without the coma. I don’t work five days a week and I channel my energies and other things.

It is so, so hard. But try to keep positive, get some psychological support, check out the information on ICUsteps.org and join an on-line support group. I know these things are easy to say and not so easy to do but good luck!

[Morphex]

Hi there, I've been through something similar to you. I was in an induced coma for a week following parainfluenza and sepsis. The hallucinations and nightmares I had whilst I was in ICU were so terrifying to me and they still haunt me. It's been almost 6 months now and it's difficult to move on, because no one else understands. I was told at the time it's your brain waking up and readjusting, so I understood why but that didn't make it any less real. As an example, I was convinced that one of the health care assistants was wearing a mask because she was trying to hide her true self. At times I didn't know if I was asleep or awake.

There seem to be so many others who have gone through the same thing.