Post ICU Nightmares

[Spark82]

Could I ask a question: I was a patient admitted to ICU in May 2021 with pancreatitis. This then quickly turned into Sepsis and I was then put into a coma. After 65 days I was woken up,I was so scared as I couldn't move or speak as I had a tracheostomy.

Nobody could visit because of covid rules. I was lay there in ICU for another 3 weeks.

I was having Pysio each day and was being weaned off the tracheostomy.

I was allowed home in September and have had intense Pysio each week to get me walking again.

I now have severe neuropathy in my feet and hands and now I'm starting to have horrible flashbacks of the ICU.

I don't actually remember these flashbacks but they are in my head.

How can I have flashbacks and horrible dreams if I wasn't awake??( I was in the induced coma).

Does this happen regular to patients that have spent a long time in ICU???

My family have pages and pages of conversations between them & other family members. I have not seen these yet as my anxiety says NO!!!

My family says it was the hardest 3 months they have ever gone through. I can understand slightly but also they also don't realise how I am. They think I was just asleep.

[Hidden]

It is possible you had ICU delerium which is very common. You can look at the ICUSTEPS information sheet on delerium, and this may answer your questions. If you are getting bad flashbacks now you perhaps have PTSD which again is common and you should seek help from your gp or the hospital psychologist.Normally ICU patients are followed up by the ICU team and you can chat with them.

[Sepsur]

Yes it does. Many of us experience something called ICU delirium which might lead onto PTSD, depression, anxiety, flashbacks & sleep disorders.

The simple explanation is that in trauma, the brain stores memories & experiences in the wrong part of the brain. The memories are not processed in the usual manner - so our ‘skeletons’ are buried alive and keep waking up.

You may find you are triggered by certain sounds, sights or smells.

PTSD isn’t just a condition that soldiers have - it’s worth taking a look into the common symptoms.

The good news is that all these problems can be treated with a course of CBT or EMDR therapy.

You don’t have to live in a state.

Have a look on our information page for pdfs on such conditions.

cc-sn.org/information

[Edenderry]

It's all Normal to have flashbacks as a result on spending time in ICU ,I spent 5 weeks in a coma with covid back in march still have nightmares like you even though don't remember much ,they are gradually getting better but some still vivid ,when I came off the trachea and turned the corner luckily I seem bats flying around the word the night before and the patient next to me also said he seen them that was strange ,I wish you well

[FamilyHistorian]

Marty29 & Sepsur are quite right. Whilst we are all different there are a number of similar things that happen to us all. I came out in March ‘20 (you can see my story in my profile). I had CBT which helped me build a number of strategies to deal with my time in icu. I had to go (on zoom) privately as there was no support available in my area. I had issues around loss of memory before being admitted to icu, being unable to differentiate between which of my memories are real and which aren’t. As far as my hallucinations are concerned I can remember them all in detail and regard these as living in a another reality. I had problems with the clock in my room (this was once I came round) which had multiple faces and told the wrong time. It transferred its powers to the toaster at home which followed me round the kitchen.Flash backs can be caused by triggers, in particular sounds, I used to have a lot of problems with these but in general they are not an issue now.

However my emotional filters have gone and I never know when these will kick in.

My sense of humour has always been wicked but now it is evil. My brain doesn’t control my mouth, sometimes there may be a conversation between the two but the mouth wins hands down😂.

I found a group now called critical care support network which I started going to in June ‘20. They provide support drop ins and chair based exercise classes.

P.S. I didn’t have an icu diary however my wife & family and daughters separately ran 2 WhatsApp groups. I have now read these. I have also got my hospital notes which amongst other things demonstrate the care I had.

[Hidden in reply to FamilyHistorian]

I obtained my hospital notes as well, and very useful to see what was happening when I was out of it. My family had kept a dairy of calls with me and the ICU team, but these were personal and perhaps did not understand the delerium I was having at the time.I had delerium both times I was in ICU firstly with Sepsis and then when returned to ICU with Covid.

Although the dreams are still memorable, I am not haunted by them, and they went as soon as I realised where I was.

I remember on the first occassion I opened my eyes and started looking round the ward and my nurse said "oh you are back with us then". The second time I asked my nurse had I been in the hospital all this time, and not in various countries around the world, and once she confirmed, although abit upsetting at the time, the delerium stopped. I was given an anxiety tablet for about 2 months but once home my gp stopped it with no adverse effects .

As I said in previous posts, I look at the delerium as a positive in that I believe it kept my brain active, rather than just drifting off. The dreams were quite scary at the time and involved near death experiences, and many had a red and green triangular light on a wall, and as long as the light stayed green I was ok, but if it turned red it was more difficult ie red for dead. When I look at all the drugs I had it is not surprising I was in a different place.

[CLM68]

My family took short notes to share with each other on my progress but I didn't see those until about 6 months after I had been discharged and one of the consultants I was seeing walked me through the main areas that went wrong!I was diagnosed with PTSD very quickly and I had some really bad nightmares for a while but, over time, they have become much less frequent. Certain things act as a trigger and for me it is beeping noises, similar to the sounds that the machines made in hospital but I tend to avoid those.

The important thing to realise is that what you are experiencing is not unusual. You have been pumped full of drugs and your brain has basically been put to sleep...none of which is a normal state for us to be in. It will take time.

You haven't mentioned if you are having ICU follow-up appointments or ICU counselling...I had both and if they are offered to you then grab them as they helped me a lot.

[l1amg]

Hi Spark82,

Just to add what others have said - what you're experiencing is very common. I had horrible hallucinations in ICU and in subsequent months any sounds, sight, smell or conversation that reminded me about ICU would lead to me re-experience the despair I felt in those moments. Normal things like the microwave beeping for example. The sad reality is that even short stays in ICU can require long periods of emotional recovery. There are loads of articles you can read to better help you understand ICU delirium and the PTSD that can follow it. Get support and help from your GP and this community as soon as you can.

What helped me was talking about it. Getting it out there - discussing how it affected me. I think it helps your mind re-process the trauma and make sense if it.

What also helped me was realising I wasn't alone. Realising that this is a normal response to the trauma you had. So I hope this gives you some comfort too.

👍

Liam

[ZoeH1974]

i had septic shock due to an abbcess on my liver i was in icu for 6 weeks and then a further 3 weeks in a normal ward. I had a trach in my throat and some very weird hallucinations inlcuding thinking there was a pub on the end of the ward that i really wanted to get to. i have asked repeatedly for counselling but to no avail, and because of covid i have never met my doctor as she joined the practice as my old doctor retired during covid. i have asked for help repeatedly because of my feelings and emotions over what happened. I am mostly sufffeering from short term memory loss - i literally think something go to say it and it is gone. I dont know where to turn too anymore i really dont. Getting through tomy doctors surgery is an absolute joke at anytime of the day so i tend to just leave it. But i am getting more and more angry - one of the things i most struggle with is not having one visitor, it was during covid but i see lots of other patients in intensive care with someone holding their hand and supporting them so i know visitors were allowed. Sorry if this is rambliing, this is literally the first time i have thought this out loud. kindest regards

[Hidden in reply to ZoeH1974]

Sorry to read your experience. In my hospital we were not allowed visitors due covid. It was only when I was toward the end of my second ICU stay that my next of kin was allowed to visit, but had to put on ppe. During the time I was critically ill I was looked after by the nurses who were very caring.It must be a post code lottery in respect of seeing or speaking to your gp. I had to register with a new gpbwhen I was ill as had not been to my old gp for 10 years and had been deregistered. Since being out of hospital I have seen or spoken to my gp at least once a month, and had follow up consultations at the hospital. Although in my case it was not needed I did speak to the icu psychologist after I left hospital to talk about my experience. Although as I have written I did have severe icu delerium, this stopped before I left icu, and I did not suffer ptsd.

Keep trying to contact your gp in the first instance.

[FamilyHistorian in reply to ZoeH1974]

Have a look at the critical care support network website. The next drop in is Thursday at 730 on zoom. You will be very welcome. You can talk or not as you want but we have all been through icu for one reason or another.

[stevet11753]

Regarding a coma as being 'just asleep' is a popular misconception, fed in part by TV drama, even medical dramas, depicting patients coming out of coma wide awake and fully aware, as though waking up from sleep. As the posts here have made clear, this is far from the reality of the situation. It can be difficult to make people understand this. In my own case I was fortunate to have post-ICU follow up through outreach nurses and it may be a good idea to contact the ICU in your case to find out what support may be available.

[ProfCarnage]

If you haven't found it, here is the link to it:

icusteps.org/assets/files/i...