Insomnia: Many years of restless leg syndrome, plus... - ICUsteps

ICUsteps

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Insomnia

patchworker profile image
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Many years of restless leg syndrome, plus two weeks in intensive care, plus surgery which means I must sleep sitting up, have left me with no proper sleep pattern at all. I sleep for a few hours now and then, day or night. Fortunately I'm old and it doesn't matter when I sleep.

I went to sleep at 10 15 and I've woken again at 12 30. I'll write this for a while, have a Quorn bacon sandwich, then try to sleep again.

Restless leg syndrome is a horrible problem. For those of you who are lucky enough to not have it, I know it sounds like no great problem that you need to keep moving your legs, but in severe cases it means no sleep at all, for days, even weeks, on end. No matter how exhausted you are, you must keep moving. For a long time I was only sleeping for an hour and a half, in three separate half hours, in a night. The rest of the time, I was walking, walking. There are meds that work for some people, if you are lucky enough to have a sympathetic GP. I'm one of the lucky ones, but many people are not. But disturbed nights have become a habit.

Intensive care wrecked my sleep pattern as well. There is no day or night, no natural light, lights on, staff busy, all the time. It can't be helped, very sick people need 24 hour care, but it played strange tricks on my mind. That plus the drugs they gave me lead to nightmares, which lingered long after I'd gone home, so sometimes I don't really want to go to sleep.

It was a very frightening experience and I'll never be the same again.

Now surgery. I have had my esophagus removed because I had cancer. (I hope I'm right in using the past tense) My stomach is now in my chest, and it no longer has a valve at the top. So the only thing that keeps the contents in place is gravity. If I lie comfortably flat the contents will spill, and I will inhale them. That is terrifying, so I sleep propped up. Not too bad, but never really completely comfortable. I remember when I slept blissfully on my stomach. Never again.

I thought I'd put this on all three of my Health Unlocked Community sites. After all, most of us are battling more than one problem, and the treatments often conflict. For me, the problem is the meds which help my restless legs are Dopermine agonists and the meds which help me swallow are Dopermine antagonists. So shall I choose to sleep or eat? Actually it's a matter of getting the balance right,

My main problem is I spend my nights on my laptop instead of sleeping, which is my own fault.

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patchworker
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Offcut profile image
Offcut

Since my time in ITU I have not had a good nights sleep for the first 6 months once I woke I had to get out of bed. No matter how long I had slept for? Now I will wake though out the night and struggle to get back to sleep.

But I have a bad habit of dropping off on the sofa for an hour in the evening. I have tried not to sleep but it just seems to happen even if I am watching something I wanted to watch on the TV.

Hannover profile image
Hannover in reply to Offcut

I have experienced the same problem as yourself with sleeping.

My GP pescribed me sleeping tablets after about a week of comming home( I was 7 weeks in Critical Care Unit.) they helped a little.

However I have never managed to get a full nights sleep to this day.

I was discharged from hospital in Febaury 2012.

Like yourself I can just drop off to sleep when watching TV.

I think this is something some of us will just have to accept.

Offcut profile image
Offcut in reply to Hannover

It has been since July 2008 or me

mandijt profile image
mandijt

I spent 2 weeks on a ventilator and almost 4 weeks in ICU in January 2012 and since coming out of hospital i've never slept a full night. I'm terrified i'm not going to wake up and every night i'm woken with a panic attack - my sleep pattern and the amout i sleep is horrendous. I was prescribed sleeping tablets, but i darnt take them as i think if i do then i wont wake up! I'm having councilling and i'm hoping this will help.

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