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10 months after induced coma

Hi everyone, looking for advice last June I was put into a medical induced coma after having breathing issues due to a cold I only ever had mild asthma so not sure why I ended up so bad, I was in the coma for 11 days was given lots of different antibiotics to help treat infection, Doctors tried to be bring me round twice during those 11 days, I also had ards while I was in there, I was in hospital for another 7 days after that then aloud home, during Home recovery I had really bad nightmare terrors and was very confused, felt weak, emotional but slowly I was getting back to normal I went back to work after 4 months now 10 months on my body is better but still have a few issues with getting out of breath so awaiting to be seen by hospital doctor for that, I’m receiving voice therapy as my voice is still croaky but why am I still feeling weird I can’t explain it but here goes I am confused all the time, I have difficulties remembering things so often forget so easily, I’m clumsy, I’m tired all the time, and I get headaches a lot plus mood swings, now it’s been 10 months and everyone keeps telling me to give it time, has anyone else had anything like these feelings, many thanks for reading any help would be great

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Hi, I have experienced much of what you speak about. The forgetfulness is sporadic but annoying. I’ll agree to do something and forget to keep my promise or intention, it’s not all the time. I find bureaucracy & paperwork troublesome, daunting and sometimes unfathomable, but not all the time. I drop things, but not all the time. I am a fairly level person, occasionally, I am emotionally volatile. I think all of these ‘symptoms ‘ are abating. It does take time, 10-14 days for every day on ICU as a mean average( depending on age & fitness prior to admittance).

Happy plodding forward.

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Thank you for the reply,

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Hi Chick!

Everything you are going through is perfectly normal and many of us have experienced the same. I’m 2 years out of hospital and finally starting to feel the end is in sight but I still struggle with forms and process, things I used to take in my stride before.

Emotionally I’ve gone from compartmentalising to wild mood swings to paranoia and ptsd. Seek counselling if you can.

Debs x

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Thank you for the reply, not sure where to start with seeking Help, my doctor keeps telling me it’s time,

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Hello,

So much of what you say is familiar to me too, although of course everyone experiences these things in their own unique ways. I was in a medically induced coma in April 2016 so I’ve just reached the second anniversary of my time in ITU. Over that time I can see that the memory lapses and feeling of weirdness have gradually eased. Initially I found that whole areas of my memory were blank or confused. Also my emotions were all over the place: one minute I was fine, even euphoric at having survived sepsis, and the next I was tearful and full of anxiety. It was very distressing. I felt somehow alienated from myself, as if I couldn’t quite manage to be the person I had been before.

It helped me so much when it was pointed out to me that I had been through a major trauma. This meant, I came to realise, that everything in me had been shaken up and disturbed in incalculable ways. I needed therapy to help me process the experience - not only the experience of being in ITU, but also the experience of adjusting to what seemed to be a changed reality. I sat in that room with my therapist and I cried and I cried. I did a lot of talking too, and I can see so clearly now that I was being helped or enabled to get through this. It takes time, so much time. Improvement and healing is happening all the time, but it’s so slow, isn’t it? I wish you all the very best.

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Thank you for the reply. Maybe I need to start therapy although I’m not sure if I’d be able to talk through tears, really hard the way the mind doesn’t heal as quick as the body

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Yes thinking back @mikea101, I would say the same ‘alienated from myself’ - it is only now, 2 yrs on, that I feel I have back the reins. Weird experience - not all negative - a cure for complacency (?)🤣

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Tears first, then talk! I couldn’t cry and talk either. But crying is a way of expressing oneself anyway. For me it was about letting all the dread and terror flow through and out of me. But you must choose your own path. Perhaps you have a friend or family member who you trust to hear whatever you need to say.

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I can't believe they released you from hospital just seven days after being in an induced coma! Anyway, I'm three years down the line now and I still have issues with memory, motor-control and balance. I don't know how much of a role age plays in the recovery process but I was 61 when I became critically ill, so I'm not sure what to put down to the illness and what to age!

There are many factors playing a role in recovery and each of us copes with them differently. I found that visiting the ICU a few months after my recovery and meeting and thanking some of the nurses and staff who helped to save my life was very cathartic. Good luck on your own path to recovery!

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My family agree with you on that one, the hospital was busy and full of bugs, I only had my feeding tube removed the morning of discharge, I wasn’t going to argue as I just wanted to be home, I’m only 45 and was very active pre come, And I haven’t had any kind of support other than I check up 3 months after, thanks for your reply though I’m now thinking I’m not going bonkers after all x

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Hi. Sorry to hear about your difficulties. I didn't have breathing difficulties, but food poisoning and only a 4 day coma followed by three days in a side room recovering. Some of the after effects i can relate to though. The nightmares are terrifying. I was out of hospital on 2.12.17 and my finger nails all broke plus about two thirds of my hair fell out so I had it cut short. Both are regrowing thank goodness. My voice got.back to normal quite quickly. My short term memory has been affected. My GP said it would take a lot longer to get back to full strength than the hospital told me. I didn't have physio but try to stay as active as possible. I had retired early so have aged since but you have youth on your side! xx

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Hi Sheila, being in a coma due to food poisoning is crazy, and not that long ago either, I can sympathise with the nails and hair loss, I lost so much of my hair but its growing back, my vocal cords don’t shut properly so that’s what the voice therapy is for, i sound like I’ve got a soar throat all the time and I can’t shout at all, don’t get me wrong I am so grateful to be still here, as my heart stopped twice the the first few hours after being admitted, I guess i just have to plod a long and give it more time, I wish I didn’t have to work though as i Work a few nights a week and sleep is a massive thing I struggle with which I’m sure is not helping, you take care of you self and remember you are not alone xx

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I was really surprised you went back to work so quickly. It must be hard. At least I can have a rest if I need to. The one plus side of the horrific experience is that my husband has stepped up and dies loads more than he ever did so has realy helped in my recovery. You have been through a massive trauma which takes a lot of getting over. Recovery can't be rushed unfortunately. Take care. Xx

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I had 4 months off but had this weird thought if Things got back to normal then i would to, little did I no I would still be feeling rubbish, the side affects and mind are a funny thing xx

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I found that frightening, that I was so convinced things happened and they hadn't. The tricks the mind plays. Even now it has left me doubting decisions and actions. I am far less efficient than I was! And my days of trying to be super woman/domestic goddess are over! I hooe you are coping with work and your voice returns to normal. I had a sore throat with food poisoning but sounded like a witch when all the tubes were removed and didn't want to speak as I was so wary of who to trust! Thought I was being poisoned! So ridiculous looking back. Xx

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Oh get all of what your saying,horrible isn’t it! , mine was I was kidnapped and tied to a hospital bed and people were trying to kill me, even the hospital staff, I was convinced there was strange goings on in the hospital,

The only place I feel safe even now is my home, I don’t go out for long if I’m alone if my husband is with me then I’m a bit better, I wish you well in your recovery xx

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It can take 18 mths to 2 years to recover from an admission to ICU, so people are right in give it more time. A lot of the things you are experiencing are common in survivors of ICU, and I wonder if you would benefit from meeting other former patients. Does your hospital have a support group? Or is there one in your area?

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everything you are experiencing is 'normal' for coma survivers. I was in coma for 4 weeks. I'm a year into recovery. There is little help and support out there. Yes memory problems, other day I was in tears asking my husband what the word is for baby cow !! Yes I know is a calf but at that moment I couldn't remember. Sadly you are kicked out and pretty much expected to recover in your own. I was paralysed too so had to learn to walk, talk, use my hands etc on my own. So my advice is just accept it. It's part of you and will get better, be kind to yourself. It can take up to 5 years to recover, some of us will always have little problems 😁 I'm tired, I need to nap but I still can't walk far so I get exhausted with the effort. I suffer headaches that wake me in the night sobbing with pain. I'm terrified of going back into hospital as I suffered some very bad experiences there. My Trechiostomy hurts, my bedsores still hurt although healed. I feel ugly as all my hair fell out too. My voice is croaky too ! But all this is normal !! You will be ok, I will be ok 😀 If it gets too hard ring the sepsis help line. They understand coma and are happy to provide some help and support. If they have support group near where you live they will let you attend. sadly I'm in North Wales and there is nothing !! Message me if you need to talk x

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I was in the ICU for 11 days at the end of September beginning of October. It has been about 7 1/2 months. I too deal with the fatigue and memory issues. I can do so much every morning but then Every afternoon I’m so tired.

Recovery seems to be taking a long time. The trauma we have been through was extreme on so many level. When I look back and see how far I have come it is pretty amazing.

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Your Doc has NO idea of what you are going through. Those of us who have experienced ICU delirium are in a very unusual place that so few few will ever understand I began to think of my terrifying experiences as a privilege - I have 'seen' things that so few have.

I suggest going to a counsellor who has experience in PTSD. You may be able to get this on NHS, I went privately as none where available and rather optimistically thought I could move through in 5 sessions - take your time and don't expect an instant solution. Tears are fine, I wept buckets. Even close friends and families won't get what you have been / are going through. You are not alone.

Do you have a local ICUsteps drop-in place?

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I was in ICU in a coma for nearly a month last July/August. I had pneumonia, bad asthma and I’m diabetic and my blood sugars raised to 47. My kidneys were damaged and I had to have dialysis and be resuscitated a few times. I’m a determined, stubborn and positive person and I believe that helped me physically recover quite quickly. After I was moved from ICU to HDU I walked within a day as I was determined to walk to the toilet and not rely on wearing a catheter (front and back) and I didn’t want to use a commode. I hated not being able to talk as it was so frustrating, so urged the tracheostomy be removed asap. I also wanted to shower myself. I spent 3 days in HDU (mainly waiting to see consultants) but was desperate to go home. I was then moved to a ward and spent 2 days there before being allowed home. I don’t think I slept for more than 10 minutes at a time on the ward as 2 of the ladies I was in the ward with were so vocal, screaming and shouting most of the night. When my consultant came to see me I told him I was going home whether he liked it or not as I would get more rest/sleep at home and other than my kidneys still needing to repair I was fine. Considering I had showered, dressed, with my bags packed and ready to leave and one of the ladies was swearing and slapping one of the nurses he said he was happy for me to go home. When I got home I found I got exhausted easily and going upstairs was difficult, I had to crawl up and getting to the top and making that final step up was like climbing a mountain. My cat used to walk up with me, get to the top before me and stand there meowing as if he was cheering me on! 9 months on I have some mild memory lapses, I’ll be talking and forget what I’m about to say. I accidentally knocked 10 years off my age when asked what it was at a follow up hospital appointment and feel a bit anxious about forgetting people’s birthdays (so much so that I’ve bought all the cards I need for the year and have written and addressed them ready to send and have reminders on my phone to send them. I seem to have reminders set on my phone for a lot of things) I was given the great news 2 weeks ago that my kidneys are now functioning normally again and I don’t need to go back to the hospital for anymore appointments for them. For the last 5 months I have been waking up during the night (not every night, maybe 1 or 2 times a week) panicking that I haven’t taken my medication or injected my insulin. If my husband wasn’t there to remind and reassure me that I have I’m sure I would take it all again. I’ve spoken to my local doctor about it and he thinks it’s due to what I’ve been through, but didn’t offer any practical help, he just prescribed me something to help me relax at bedtime. On Saturday my dad was admitted to ICU and although he thankfully didn’t go unconscious had exactly the same as me. He is also made of tough stuff and was allowed home yesterday, despite it being touch and go on Saturday and being hooked up to all sorts of things. It’s nothing short of a miracle that he’s home now and wanted to go to McDonald’s for tea yesterday! At first being back in ICU made me feel sick with hearing all of the machines etc, but I soon got over that as I was there for my dad. I saw a few of the lovely nurses who cared for me and it was great to say thank you to them. I still get a few flashbacks now and then, an image will pop in my head of the nurses dressed in blue talking to me, if I hear a phone that sounds like the one in ICU it takes me right back, I’ve hated the noise of the blood pressure machines when I’ve been back for follow up appointments, hopefully that will all calm down now having spent a few days with my dad back in ICU. When I was unconscious they put an iPad beside my bed and although I don’t recall anything else around me or hearing anything else I remember hearing the radio station they played, especially an Ariana Grande song ‘One Last Time’ that seemed to be playing over and over. Since I’ve left hospital I hear that song all the time, it was even the BBC’s tune they played between programmes advertising what was coming on over Christmas. It has become a special song as I’m sure that helped pull me out of the coma as I absolutely love music and I’m sure it helped so much hearing it while unconscious. So that’s my story. I hope all will be well for you too. I do think we should all have some counselling, just to get all of this off our chests. I find chatting about it helps put things into perspective. I’m hoping going back to ICU will help with the waking up fretting about medication, but time will tell I guess. Best of luck and I wish you good health xx

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Hi Chick72, Like you, I was in an induced coma for 11 days, although I remained in hospital for another 3 weeks afterwards. I tried to research my experiences a couple of months later, but could only find a project in a Norwegian hospital which kept diaries for ICU patients. How I wished someone would have done that for me. I had either sketchy or conflicting information from doctors and friends and family. There was no indication that there may be psychological or emotional problems in addition to the physical recovery. That was 5 years ago. I recovered physically very quickly as I was determined to go back to work as soon as possible and worked hard to overcome the paralysis. However, it was only a couple of months before I found my terrible working conditions had now become utterly intolerable. Only last year did I feel able to return to the kind of work I was doing before. I can relate to the feeling of confusion you describe, although for me that was not unpleasant but rather a sort of foggy, dreamlike state which took the edge of the genuinely harsh and difficult new world I found myself in; one where my partner had abandoned me, my friends and family had given away my cat, and when I returned home, they all just left me to somehow cope in this now totally empty house. A year later I lost my home and spent the next few years scraping a bare existence. Of course nobody could relate to my experiences and people laughed when I described the Hell my hallucinations had taken me to. I have now found that more studies have been done into our condition and believe I have been suffering from PTSD. Things are much better now and I hope you will not find my story too depressing. But now there is more understanding of what we go through, I do urge you to ask your doctor to refer you to a psychiatrist, and seek any and all help available. I found this study today, which I hope you will find useful. Sorry to ramble on! icudelirium.org/patients.html

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I developed a swelling on the right side of my neck and brought myself to the hospital. I was transferred to a university teaching hospital where I was placed into a medically induced coma and intubated and put on a vent for approximately 10 days. They used a medication called propofol.

If it sounds familiar, it’s the medication that killed Michael Jackson Who tried to use it as a sleeping pill. It’s not a sleeping pill it’s an anesthesia.( I am writing from the US). I could’ve written your experience For all the similarities; creepy and disturbing dreams that have still followed me from the ICU, to the regular medical floor, and for another month after I came home. The most Innocuous things could leave me feeling alienated and spooked. I’ve had weakness and forgetfulness. And the scariest of all is the shortness of breath. Before I went to the hospital I always took A supplement called

5 HTP which helped me sleep at night and gave me very pleasant dreams. It took a long while after coming home for that to start working again but it has helped stop the weird nightmares.

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