Sleeping problems after icu

[jambo2301]

Good afternoon. Firstly I would I would like to say my thoughts are with everyone who has lost or has relatives in ICU. I spent 52 days in icu and didn’t remember anything apart from dreams I had. . I am looking for some help please I am now home after a weeks. I am struggling to sleep I go to bed at 11.15 pm every night. I am Still awake at 7am the odd night I might get an hour. I have tried zoplacone 3.5mg and got 5 hours one night. Then they never worked. I then got melatonin from the doctor they worked for one night and never worked again. Any ideas on what I may be able to do. Thank you for reading this.

[FamilyHistorian]

Jambo what is going on while you are not asleep? At night that is. I don’t / won’t take drugs to help me sleep. If you don’t mind answering that question I will relate some of the things that happened to me a bit later on today

[jambo2301 in reply to FamilyHistorian]

Afternoon. Thank you for your reply. I go to bed at night and try to sleep. I just ly there with no thoughts and my eyes shut. Then I toss and turn due to the weight loss from icu. I lost 4 stone 2lb. As I am pretty boney on the shoulders. I am exhausted. I am still resting for 8or 9 hours but not the same. I have joined something called Sleepio recommendation from the doctor. It’s a six week course. I am only in week one. It is used all over the world.

[FamilyHistorian]

Sorry for taking time to reply.

I am now 73 having come out of hospital in mid March’20 I’m 6’3 and before going in weighed +- 17 stone and by the time I came home I was under 13. I was ventilated and sedated for just under 2 months with a trachy following a heart op pneumonia and sepsis. In addition I was fed by tube which wasn’t taken out until the day I left. I had / have a swallow issue. So I was initially on slop and high protein liquids. Because of covid I/ we had no support. I gradually improved the range of food I could eat and now I’m 16 1/2 stone (year later). In fact I had hoped that my weight would settle down at around 15 1/2 stone but despite eating the same I’m still putting weight on☹️

My GP was very good but had no experience (or resources) to support an icu patient in fact I was the second she had had in her career.

The issues I had were a) I was scared to go to sleep in case I didn’t wake up, b) I had night sweats and soaked the bed, c) my hallucinations/ delirium continued, d) my control of my bladder was getting better but getting up 5 times didn’t help and I was still trying to manage urgency e) I got depressed for all sorts of reasons f) dropping off to sleep during the day wasn’t a good idea because it didn’t help the night situation and when asleep in my chair I was surrounded by all this equipment (NOT) and couldn’t wake up until it let me.

First of all I should say some ICU’s have after care and if it is available you need to tap into it. My GP recommended ICUStepsChester which is a charity that supports people from all round the country and they provide via zoom weekly drop ins, one for relatives as well, chair exercises and chair yoga and now more advanced exercise sessions.

I didn’t find them until June.

In no particular order

To start with I was able to get back to sleeping naked. I used to put large beach towel on the bed to absorb the sweat. With time my bladder became better but not perfect.

The yoga helped my breathing - no strange positions - and the exercise means that I am slowly getting my strength back and can now make a pot of tea safely and get out of a chair without using my hands. The drop ins mean that you can talk, if you wish, to people who have been through the same as you -no judgements.

I have also undertaken a course of cognitive behaviour therapy (CBT) which has given me strategies to deal with memory loss, hallucinations and to a certain extent the depression.

I’m told I am a very determined person but the time in icu has changed me.

[FamilyHistorian]

Icustepschester at one of their Thursday drop ins in the next few weeks, no too sure when yet, they are haves speaker to talk about sleep!!

[Sepsur]

We have a sleep specialist joining us for our drop-in zoom meeting in a few weeks.

[jambo2301]

Sepsur that would be awesome if you could let me Know when. That would be a huge Benefit for me. Enjoy the rest of your day

[Sepsur in reply to jambo2301]

I’ll send you a private message

[8SofMB]

This is all quite common unfortunately. five years ago I contacted meningococcal bacterial meningitis and then developed, sepsis and pneumonia. My sleeping issues, fear of sleeping, started after about 3 months after I was discharged. I tried various medication but the more I read up on them, the more I concluded that none of them are a long term solution.

I agree talking therapies are by far the best long term answer, good metal health is is so important. Sorry to say there isn't a quick fix. Its taken me maybe over 3 years but I do sleep each night for 3-5 hours, sometimes 6, not great, but enough to keep me aware all day, and as I say I don't take any medication. There is loads of good information out there.

Too much to write here but I've spoken honesty and frankly about it in a book I published just before Christmas. Its called Eight Seconds of MenB. I was hallucinating very badly with the overwhelming infection and the medication I was on. I really is the most frightening experience imaginably although I somehow manage to record some dates and event at the time. I'm nearly there, and have been wanting to share this.

[BBDEBS in reply to 8SofMB]

I was JUST ABOUT TO RECOMMEND YOUR BOOK!!!! Hey coma buddy, so glad you're able to share. Debs xx

[8SofMB in reply to BBDEBS]

Thanks Debs.

Pete x

[Gooddaysunshine]

Hi, yes I also now have disrupted sleep after being in ICU with coronavirus for a long time. Since my catheter was removed that is probably my main problem, I wake up now during the night many times to do the toilet. After being deprived of so much sleep in hospital I now go to bed really early say 630pm, to give me a good “run in” towards falling asleep.I never look at the clock after that, as knowing the time can set up pressure to fall asleep by X o’clock.

Before bed I watch something on iPad that I am extremely familiar with, such as the films on BBC player, or drama on itv hub, most of which I have seen before.

I feel that that sense of familiarity then fills my mind with something - as opposed to a void - as I lie down to drift off. Despite the temptation I avoid anything stimulating like the news or sporting events and results.

Finally, I now also use earplugs and eye mask, which they gave me in hospital to try and screen out the brightest lights and loudest noises.

I hope some of the above might be of use, and good luck.

[jambo2301 in reply to Gooddaysunshine]

Thank you very much for sharing your experiences. I go to bed at 11pm and still awake at 7am. Last night I got 2 1/2 hours. I am taking melatonin it worked the first night but the last 3 night nothing from it. I joined a sister called Sleepio it was recommended by myGp. It’s a 6 week course and they check in every week. It also sends tips everyday. You have to keep a diary every day on line and they monitor it.

[Gooddaysunshine]

Thanks I will take a look at Sleepio

[elsieadams]

I found I had the same problem. There were also many nights I did not sleep as I was afraid after being hooked up to life support that I might not wake up. I tend to not sleep until three or four in the morning and average about four hours sleep a night. I recently went back to the doctor and he gave me a prescription for 30mg of duloxetine. I take it about 5pm every day as a have grand mal epilepsy pills to take before bedtime. So far this drug seems to be helping with my mood, depression, as well as osteoarthritis. It does have side effects which I monitor with a blood pressure machine. Despite this pandemic and isolation from family and friends I am starting to feel much better and am getting more sleep. You might want to ask about this drug it is a serotonin reuptake inhibitor SNRI . Be very careful about the dosage. Mine is 30mg and the dr wanted to increase it to 60mgs but I find it makes me a little high and am sticking to the lower dose for now. Hope this may be of some help. Take care and stay safe.

[alex87]

Hello! I suffered from sepsis Feb ‘20. It took me a bit to sleep as well. The dreams were keeping me from sleeping. Was afraid of a different reality. For me, cbd and yoga. I know its difficult to keep your head up, after icu, but yin yoga is slow and mostly breath work. I decided not to take pills after icu stuffed me up with enough meds for the next decade! Hope you feel better soon!!!

[jambo2301 in reply to alex87]

good evening Alex

thank you for your information i will look at yoga. i have joined sleepio it was reccomned by the doctor it is a six week course. you have to keep a diary of sleeping pattern and they review it weekly

[elsieadams in reply to alex87]

I do practice meditation in my sauna with the sounds of nature in the background. It is very relaxing and am starting to sleep abit more each night. The new inhibitor I am taking is actually helping alot with arthritis as well as beginning to feel happier each day. It is too bad that professionals do not tell you how devastating all our experiences are but is good to talk to each other on this site. Take care .

[Tedsdad]

I had similar time in ICU to you, a little less. My approach was that there was no such thing as bedtime to start with. If I felt like it I went to bed. If I felt like it I got up. I was really strict with myself about physio. I think what helped me was that I never accepted painkillers or sleeping tabs once I was out of ICU. I am three months down the road now still not perfect by any means but have settled into a bed between 0900-1030 routine but I only sleep in 3 hour stretches although I am nit far short of 12 hours in bed even if this involves a game of chess on iPad. I think my biggest problem now is the amount of medication I still take as my original problem as aneurysm repair that led to valve replacement and dat after blood clot in heart that led to kidney failure collapsed lung etc etc. I am in the mend now but swing between optimism at being able to play wind instruments and take dogs for walks and unhappiness that I walked into the hospital as a fit middle aged man with a potentially fatal aneurysm and came out as an old man admittedly without an aneurysm but having to fight for every tiny improvement and not totally convinced that I am going to get there.