I suffered badly from the drug infused Halucinations after spending 3 weeks in ICU (1 weeks in a coma)
I went from ICU to a room in the standard ward room but as i was seriously under the impression that sand was coming through the ceiling and that Steam Trains were comming along the ward.Bviously not the case but at the time it was so, so real!
Why was i allowed to go home after one night and basically only have the care of my wife untill we heard from someone 3 weeks later? I just dissapeard off the NHS radar!
Also how do i say thank you to the Nurse in ICU who saved my life but i thought in my Coma was trying to kill me?
Any thoughts appreciated.
Richard
Written by
rachelsdad
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It's difficult for people who haven't experienced it themselves to understand that the dreams, nightmares and hallucinations we experience while critically ill seem completely real. I hope from the other posts in the community and the patient experiences section of the website (icusteps.org/patients/patie... that these things are actually quite common for ICU survivors and will usually clear up in time. Even the belief at the time that staff were trying to kill us is quite common, though we know afterwards it wasn't the case and in fact they saved our lives.
The other issue you touched on is also sadly common. The length of time patients spend on a general ward when they leave ICU varies depending on their physical condition, but the psychological condition seems to play little or no part in the decision to discharge us from hospital.
Your only real port-of-call is to speak to your GP, tell them about what you're going through and see what they're able to do to help. Most patients report their GP while sympathetic isn' t aware of the common after-effects of intensive care and it can be difficult to get referrals for physiotherapy and counselling.
Some hospitals (about one third) do offer an ICU follow-up clinic. The length of time after discharge before you might be asked back to clinic can vary and may be between one and three months after ICU. You may find it helpful to contact the ICU to see if they do offer ICU follow-up and if so ask if they might be able to see you sooner. If they don't offer a clinic however, it's possible a member of staff from critical care or the Outreach service may be able to offer some advice or recommendations for your particular situation. As you will know, the ICU staff are incredibly busy and stretched but they do understand more than any other healthcare professionals how hard surviving intensive care can be.
I hope you're able to find the support you need and begin to put your critical illness experience behind you. Do bear in mind that recovery does take a long time and there can be ups and downs along the way, but things do get easier with time.
Well said Peter. Richard all I did was ring the ICU and ask to speak to the nurse unit manager. I apoligised to her. She was very forgiving and said it was not uncommon for people to ring and apoligise. Evidently I was far from thier worst patient. Bear in mind though what Peter said about ups and downs. While you feel like apoligising now at different points in your recovery you my wish you hadn't. Peter is right it does get easier witth time
Thank you for your reply.I saw all sorts whilst i was in ICU and at the time id did not even cross my mind at the time that they were being effected by the drugs like myself.I just thought what loud uncontrolable people,almost like children throwing themselves around.
I have learnt a lot from my experience,but there are now people who could be helped by me from my experience, so thats my plan.Oh, and to thank my Nurse!
I was in a way lucky that I had physical problems so spent a total of three months in hospital which gave me time to adjust. I do agree however that there is no real emphasis put on finding out the psychological problems that are prevalent in patients who have suffered these types of trauma.
as for thanking staff sometimes a simple visit is welcomed.
I was in ICU for 3.5 weeks and then spent 4 hours on a ward before being let out (5 years ago). I know exactly what you're going through as I also had hallucinations and thought that one of the nurses was trying to kill me, I also tried to punch another nurse - thankfully my husband was there and apologised for me with a box of chocolates and I said sorry when I had properly come round.
It took me 18 months to get rehab for my wasted muscles. I've been diagnosed with PTSD and am having help with that too. It's a very slow process but is definitely worth it. As Peter mentioned speak with your GP and keep pushing until you are treated.
It's a very slow recovery process but stick with it.
I would also suggest that you should visit ICU and speak with some of the nurses. They love seeing the patients again and finding out how you are getting on.
One of the tasks I was given was to right it all down. I had to split the page in half on the left side I wrote what I thought had happened then on the right side I had to write what actually happened. The info for the right side was filled out with the help of my family and also the nurses. After I had completed that I was still reliving it all so I was then asked to draw it as if I was watching it on the tv. I found this really hard to do because I couldn't put myself in the picture to start with, I was drawing what I saw when in ITU. The reason for drawing the nightmares/hallucinations was to put it all in the past and not relive it as if it was happening now.
As I mentioned I'm 5 years downstream and I still get horrendous flashbacks and panic attacks. Small things trigger my reaction and I never know when I'm going to be affected!
Some of my most scary parts are the feeling of drowning and not being able to breath and being strangled and tortured. I still can't have anything tight around my neck like a scarf or any type of top!
Would be good to hear how you get on with the writing. Keep in touch.
It certainly is worth visiting the ICU ward, it gives you chance to speak to directly to the nurses and doctors as well as, perhaps most importantly, giving you an opportunity to start piecing things together. I'd certainly recommend it though can understand it can be a difficult step. I went back about 2 months after being in ICU and recognised the consultant who I was absolutely certain was trying to kill me. It was good chatting to him and we shared a couple of laughs. I didn't book an appointment just went up to the ICU ward and rang the buzzer.
I think delirium and hallucinations are such a common theme in ICU patient experiences, they are terrifying, and they do stick with you. I also tried to write out everything I thought I had seen or experienced...whilst completely off the wall. That helped as well, getting it down on paper.
Medway Maritime, where I was admitted, is one of the hospitals that do offer a ICU follow up clinic which I found to be excellent. Not only did it give me a chance to ask some questions but it is also comforting to be able to speak frankly to people outside of your family about your experiences.
Good luck with your recovery, as mentioned in the answers above, it does get better with time.
The one thing i have learnt since finding out about ICU steps only last week is that Hallucinations seem to play a big part in most peoples visit to Hospital.I didnt realise it was that widespread.I thought it was just me!!
I have waited in the outpatients dept over the last few months i have seen nothing on it at all.I did not know that there was a group of people to turn to even just for a chat.Well i do now and it is my intention of supporting any one else who has or is going through a similar situation.
Thank you again for your kind words, i wish you all the best.
Thanks for reply from first post. No need to reply again unless you feel you need to. You probably haven't read my blog (My coma) and it is MEGA LONG but if you do get five or six days! to have a scan through it you will see that I had lots of Hallucinations/dreams/nightmares and like all others that have been in similar situations there were some funny bits and some frightening bits. It is unfortunate that we seem to remember the worst bits easier but eventually they start to fade a little and you can (hopefully) see the funny side of the frightening bits (If you see what I mean) anyway, good luck I am sure you will find lots of help here I know I have.
I spent 3 months in ICU just over two years ago, the first 53 days are a complete blank just filled with nightmares and hallucinations, at times I was told I was awake and became violent, pulling out lines and tubes but I can't remember any of it, I was very lucky my wife and daughter kept a diary of the missing weeks which helped me piece together the missing time, my niece is an ICU nurse in the unit I was in and so kept a watchful eye on me after my discharge and it's with her help and the consultant from ICU that I got the psychological help I needed.
I often go back to the ICU ward and see the staff a reminder for them of what a great job they did in saving my life, it changed my life so much that I became a co-founder of our local ICUsteps here in Hastings giving other patients the support they desperately need, something I wish had been there for me, I'm sure given time the bad memories will fade, when and if you feel you are ready to help others there will always be someone that needs it.
I fully understand and can relate to everything you went through.I thought it was just me!
What puzzled me was being allowed to just leave the Hospital,armed only with my medication and still being sure that Tractors were pulling Lorries up the hill with the help of Circus Horses.Only the day before i could not walk without a Zimmer frame!
Something went a miss!
I am going to go along to the ICU step groups next meeting with the intention of being able to help others from my experience.
Hello Richard,What a night mare,I am so sorry you have had no support,my husband spent 4 wks in ICU ,and 3 days in a ward,no support at all,the GP was utterly useless,there needs to be a wake up call for after care ,it causes huge trauma. My husband had a DNR put on him,without any "talk to the relatives" He is alive ,as I stood up to the decision and had it rescinded. He is almost back to himself,has problems sleeping,and is suffering from the "awful" things he did when he was so ill,he actually broke a very expensive bed trying to escape,so be assured you are not alone! ICUsteps has helped us both so much,as you can feel so isolated.Take care ,and you are not alone.
I have learnt in the last week that alot of people have gone through a similar experience to myself,your husband included.
I left ICU for a standard ward but due to events i just could not cope with it.I was possitive that sand was coming through the ceiling,the ward was sloping down,Train Tracks being laid in the ward.All so very real at the time.
There for one night and released with my bag of medication to litterally wander out of the hospital.The day prior i could not walk without a zimmer frame.
I am suffering sleeping problems as well, the GP has basically told me to sleep when i can in the day.
Anyway,enough of me....it was nice to hear from you and i wish you and your husband all the best.....we are survivors!
IMHO people awakening from induced coma are moved from ICU to a general ward far too quickly. Nurses, bless their hearts and efforts, are not trained to understand what is going on in the mind of post coma patients and become impatient. I've discovered that the impression coma victims have that the nurses are trying to kill them is a phenomena common in almost every case.
It may be that recovery from coma at home is a better thing than in hospital, familiar surroundings and voices help a lot in reconnecting with 'reality'.
The drugs used to induce coma, principally fentanyl, are powerful hallucinogens, resurfacing of delusional episodes and random flashbacks are also common.
Had I been able to recover at home there would have been a more sympathetic response when I asked why the elephants in the ward were wearing little white prayer hats might have been better explained. Odd thing was I didn't find the elephants presence strange at all but I was obsessed with the little white hats. Being frequently reassured that what you're experiencing is only delusion would be most helpful but general ward nurses are just too busy and untrained to be able to provide that reassurance.
Good luck with your continuing recovery, it does seem to take a very long time. Maybe that's why they call us patients.
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