Intubation, ICU, nightmares, ptsd

[midNight57]

I'm new here and just seeking a place where people can understand my experience. I was intubated a few days before my birthday in May for almost two weeks. They were certain I had Covid-19. I had almost all the symptoms except for fever. It ended up being pulmonary hypertension and internal bleeding in my lungs from a Lupus flare. I was in ICU for about a month, had to relearn how to walk, went through multiple procedures, and did a few rounds of chemotherapy as treatment. I am happy to be alive. If I just waited a couple more hours before going to the ER I don't think I would have made it. The hardest things from the experience was the time that I was intubated. The nightmares are awful, vivid, and hard to forget - pools of blood, nurses trying to kill me, being strapped down, almost dying multiple times, etc. They aren't like dreams where they fade as the day goes on. They feel like real events and I know some of the things happening in my dreams were correlating with things that were being done to my body. I still remember conversations I had in my dreams. I am still struggling with all the bad nights in the hospitals and being on the drugs I was on and spinning out with panic attacks. I know things will get better as time passes with the flashbacks, but I wish this was something that was talked about more. No one in the hospital speaks to you about your mental health. It didn't seem to be a thing at the hospital I was at and I was treated in one of the top hospitals in the country. Most of the people close to me are really understanding and supportive, but my in laws have treated me like I had the flu and don't understand the mental state of going through this along with having the side effects of doing chemo. It's extremely isolating to feel guilty for not being back to normal. It's been about three months since I left the hospital and just trying to work through this really hard time especially with this global pandemic. It's hard when people don't know what it was like to experience something like that.

[FamilyHistorian]

Hi midnightbeauty

Welcome to the real world 😷🤐

I came out mid March after 6/8 weeks ventilated / sedated and not COVID. I look OK apart from weight loss. I too had to learn to walk , swallow, talk and eat. Physically I am making progress and each week I can do something else I couldn’t do before.

Mentally is entirely a different matter! Listening to others I was lucky I didn’t have any one trying to kill me but certainly nightmares & hallucinations were and still are real. My problem is that as well as loosing my memory from about 2 months before admission (end of November) I don’t know which of my old memories are real and what since then is real or not. For me memory or loss of it is the big issue others aren’t so bothered. In addition my personality has changed, my humour is no longer wicked but evil, and I don’t risk assess my language. My brain might think about what I am about to say but my mouth takes no notice and in actual fact I don’t care.

So what have I done to get where I am today? I came out of hospital straight into lock down so there was little to no support in the community. At the beginning of June I found ICUStepsChester and although we don’t live in their geographic area we joined them and used their zoom support.

We do chair exercises 2 days a week, chair yoga 2 days a week and a support group once a week. Additionally there is a relatives only drop in once a week.

Physically I am able to lift a kettle and make a pot of tea safely, I can get out of my chair without using my arms and I my breathing has improved. The yoga has exercised My voice voice box and I am not coughing as much. The support group has been excellent because there are people who will listen and understand. Tears are no problem.

I should say I have also just started a hospital video physio an support group. And I am no into my 3rd session (this morning) of CBT which I am doing privately.

As far as you in laws are concerned I’m sorry but sod them it’s their problem not yours.

[Dabofoppo]

Its brutal learning about the effects of ICU on your mental health by experiencing it only 1 nurse out of all of the nurses that worked on me/I know mentioned it to my partner. It does get better with time but you might find surprising things trigger it I got out in march last year at one stage I had to be restrained and last week I had to do some training that involved being restrained I had to take a break after that.

[Rach2Sym]

5 months ago, I had two weeks intubation for Covid-19 during which I was completely unconscious. Memory of the days leading up to hospital admission is still muddled. After ICU, coming round in High Dependency, I experienced a lot of delirium: anger, reliving past significant events with turbo-charged emotions, fear etc, a day of seriously wishing I could die, and I know I hit out at a nurse once. Hospital staff deal with this all day. The peculiar aspect of this period, which is difficult to explain to someone who hasn't been there, is that the 'hallucinations' are, at the time, completely real - they are absolute reality, and they don't fade like normal dreams. While in the grip of this 'reality' there is no possibility of seeing things in perspective, no idea of a 'normal' to which to return. ICU experience messes with the whole body/mind organism while it brings us back from near death. I'm still emotionally a bit unpredictable. I don't think my personality has changed, but my priorities have, and, in my seventies, I'm reconsidering some life choices.

[Sepsur]

Hi @midNightbeauty and welcome

I found the delirium a very unpleasant & unwelcome period of time. I had extremely explicit & violent delusions often involving the medical staff & my family & friends. I was constantly trying to hide from people, hide my daughters (especially) from unknown kidnappers. My attempt at hiding my children was often futile because they would die/ be kidnapped anyway either because they were found or I would suffocate them in my attempt to conceal them. I would then experience the grief & guilt of them dying or being abducted.

Not all of my dreams were unpleasant & some were funny.

There was a subset of delusions that were extremely sadistic, I woke 11 days after they stopped sedation. This subset of dreams took me months to talk about having always believed that ones fantasy world, was a measure of your character. I worried that the coma had unearthed a very disturbed side of my character. Time has given me perspective & an understanding that my brain was full of toxins & Hallucinogenic drugs from being placed in a coma & being so ill. I was on every form of life support for 2 months and then a further month as I stepped down off each piece of apparatus.

In the scheme of things, I was fairly clear headed about what was real & delusion, although I am still caught out by small incidental moments that I am sure have happened ( but they haven’t)& knowing that these were fantasy.

I was told that if I had any ongoing symptoms, I should speak to the hospital or GP. Not everything goes away of it’s own accord or with time. Trauma is one such thing. The brain can store trauma in an area that doesn’t get processed in the usual way - hence talking ( either by you or others) about the trauma just triggers it again.

[PeterJu]

Hi. I’m so sorry to hear about your experience of delirium and hallucinations. Like you I was in ICU and like you I had terrible hallucinations when I thought people were coming to kill me too. I’m now 20 weeks out from hospital. In that time I’ve been lucky enough To meet up with other people that have had the same experience. It is incredibly common and there are techniques that you can use to help deal with some of it. I’ll send these to you in a private message or possibly this forum. Feel free to message me if u want to chat. Best wishes. Pete

[rmac1107]

My bowels ruptured March 13 of this year. I spent 67 days in the hospital. The first 10 days was spent in a coma. I had sepsis which caused my kidneys to shut down and of course, ended up with an ileostomy along with having to have dialysis. Temporary of course. I don’t sleep. I remember the vivid nightmares and yes, to me they were real! After the first 10 days, I had to move to another hospital about 70 miles away because my first hospital didn’t have dialysis. I was still half in and out of conscious for the next month. At this 2nd hospital, I had some ratchet nurses. They were truly not friendly and even patronized me. I still have hard time shaking it because I still didn’t understand what had happened and all this happened at the beginning of the pandemic. No family with me for 67 days! I wouldn’t wish it on anyone. Praying everything eases up for you. PTSD is no joke. I know just as well as you do. Oh, and those hallucinations??? I had them as well. Apparently the nurses would come and ask who o was talking to. I truly thought my fiancé was there and I was talking to him.

[Mijmijkey74]

Only people who understand it fully are those who have experienced it first hand. My Mum was the only one who saw me all wired up, intubated in my induced coma not expected to survive so she knew how close to death and desperately poorly I was, yet upon my arrival home it was like right your out of hospital now so that's it all over your fully recovered. Absolutely clueless, my whole family were horrendous towards me despite claiming they love and care about me. 3 years ago in Jan 2021 but even now I'm not fully recovered but because I look almost the same as before my illness and coma nobody understands at all. Only here is where people understand. Some people recover from comas very quickly, others not so quickly. We are here for you. Xx

[Boogie1967]

Sorry to hear about your dreams/nightmares.

I was intubated for 42 days due to the dreaded COVID-19 and then spent 2 weeks on a recovery ward before being sent home. Learning to walk and do things for myself took a while.I have been out of hospital for 14 weeks now. I know where you are coming from with the delirium, I suffered the same, nurses and Drs wanting to kill me, torture and terror. When they were reducing my medication for periods of time I was texting my family telling them to get me out of hospital and call the police as they are killing me. However i have no knowledge of this until I went through my phone and I had actually text family members. My wife told me all this a few weeks after being at home.

I am recovering well and talking helps me with the nightmares. I am still struggling with my sleep having to take medication to help.

I hope you recover well and things hopefully get back to normal for you soon

[Goldfund218]

Hey, I was intubated for 20 days hospital 30days with COVID I was awake the entire time, tortured repeatedly, I screamed so much I thought I had died and went to hell, no one understands what I went thru, it's been 15 months since leaving the hospital, now it seems my nightmares are trying to take me back there, getting progressively worse, I'm seeking further treatment but I feel so alone, thanks for your statement it helped me to know someone else experienced similar

[ToniSwansea]

hi, I was ventilated and on ECMO go 64 days from covid , I too had chemotherapy for 6 months as my autoimmune disease flared causing more lung damage.

mine are exactly like yours.. people say “god you lost almost 3 months of memories”

And I always think… No I didn’t miss any time, I was busy *at the Chinese embassy * drowning * running a chicken farm * being sexually assaulted the list is endless. Like you I know everything that happened, for weeks I was convinced I was in hospital because of been blown up in a terror attack on Westminster bridge.

When we go back to London.. I stand on Westminster bridge and show my husband the exact spot.

They aren’t dreams, they were “our reality” to us they are memories…. And that’s so normal.

I wrote all mine down when I came home, I worked with my therapist and turns out that all of my “dreams” were linked to passed trauma. It’s taken a long time to get there and I’m now having EMDR for my PTSD. I’m 14 months out of hospital now and I feel so much better. Ask for help from the GP or your consultant. Your mental health is just as important and your physical.

Lots of love Toni xxx