Dear all
I know we have briefly discussed this before,but my insomnia can make life so hard to live as I am not only bone tired from treatment and surgery, but also from waking up nearly every hour of the night.
I am trying to come off sleeping pills, I am on a low dose, I know this is effecting sleep but ever since having NETS sleep has been an issue. I am not lying in bed worrying about anything, in fact I drop off to sleep for a few hours and then wake up every hour. I have tried EVERYTHING, so it would be interesting to hear whether others are experiencing this problem and if anything helps.
My life has better quality since my surgery and I really don't want to complain as it seems so small when some people on this site are dealing with more life threatening issues, but it is always comforting to hear how others are coping with similar difficulties.

Hi Katherine,

My husband often has trouble sleeping through the night. He drops off quickly and then wakes up after a few hours, wide awake and unable to get back sleep. He finds the best thing is to get up and have some milk, either to drink or with breakfast cereal. Always works. I'm the NET patient, not him, so his sleep problems are not due to NETS. It's worth a try, that is if you can tolerate milk without gut problems. Good luck,

Lots of love from Linda

Hi
I have problems. I fall asleep no problems and then after 2 hours wake and then wake every 2 hours sometimes every hour. I've been put on sleeping pills but they didn't seem to help much and it was really difficult to come off them and when I was taking them I felt awful during the day. I have night sweats and am not sure if the waking causes them or I wake because of them.
L
Jean

Hi,

I get the same problem, fall asleep ok but wake with feeling so hot. Unable to get up and move aroung as I feel so weak at the same time. I lei and l isten to the radio until it passes and then hopefully fall asleep again. This happens 3 4 or 5 times a night. Quality of sleep is very poor. Radio programs at night even worse!!

Found no respite from this 5 years on. .Did ask doc for sleepimng pills but he refused as they are habit forming., Have got used to this , wish it could be better. Sorry no help for you. At least it seems to be a common problem. Maybe that in itself is helpful to know!

Best regards
Gill

Yes Gill, it is helpful to know thank you.

Thank you also Linda and Jean, i have brought this subject up before and although there seems to be no identifiable reason , many of us suffer from insomnia of some kind. I have sort of learned to live with it and don't stress about it too much. Just sometimes it gets me down and a proper nights sleep,undisturbed, does not seem a lot to ask for after everything we go through. Having said that, I do have quality in my life and thank God that there is so much that can be done for NETS sufferers these days.

With love to everyone

Katherine

Hi, I had years of taking hours to fall asleep and then waking up all the time, usually with the night sweats, and then being so tired during the day. When I was diagnosed with carcinoid syndrome last March I was put on Zolpidem 5mg and have never looked back. I now feel so much better during the day and I know this has helped me coming to terms with my illness as I don't lie at wake worrying about it during the night. It isn't a sleeping pill, it is described as a hypnotic which lulls you into sleep by relaxing.

Take care.

Mandy x

Hi
I had some Zolpidem - not used - so I took one last night. I slept very well and only woke twice and can't remember if I had any hot spells at all.
Thank you very much for the suggestion Mandy I will definitely keep taking them.

Jean

Hi Jean,
I'm glad they helped. You do need to go to sleep within 2 hours of taking them as they don;t work so well. I have more energy during the day because I have a good night's sleep.
Take care.

Mandy

Hi Mandy Jean and others , Do you need a doctor to prescribe Zolpidem. I should like to give it a trial and see if it works for me.
I d be grateful for any info,.

Best wishes
Gill xx

Gillian Morton
Hi Gillian,
Yes , you do. They are the best sleeping tablet because they work well and clear the system quickly so they don't affect you much next day.
They always got me off to sleep quickly when I used them although I still didn't sleep right through the night. Usually good for about 5 hours.
They are addictive and so you would get withdrawal symptoms, including even more difficulty sleeping, if you took them for a while and then tried to come off them. Something to ask your doctor is whether they become less effective over time, You don't want to be addicted to them and still unable to sleep.
In summary, my experience was that they were very useful for a short period of time. In my case about 3 weeks after which I came off them without too much trouble. I'm now managing to sleep without them but keep some in the bedside cabinet as an occasional treat.
Hope this helps.
All the best, Mike.

Having become addicted to zopiclone and having great difficulty in coming off them, I whole heartedly agree with Mike.

Sorry so many having sleep problems, but kind of relieved it's not jusypt me.

Thanks everyone for contributing.
Sweet dreams

Katherine

Hi, I've been on 5mg of Zolpidem since March last year. I know they are addictive but I know I would suffer alot more if I was getting the few hours sleep I used to get without them. I wouldn't take a higher dose. I take 9 pills a day for other problems which will be lifelong and the Zolpidem is just one of them. I expect I am addicted to them but they still work as well as they did when I first started them so I am happy just to keep taking them.

Mandy

Hi Katherine

You might have seen this recent article on the BBC website - interesting and timely!

http://www.bbc.co.uk/news/magazine-16964783

I have often had spells of insomnia or maybe a different sleeping pattern. I think there are many reasons why it happens not least of which is a disturbed or less effective neuroendocrine system - perhaps something that many contributors to this site will have in common.

Best wishes
Tim

Is Zolpidem and Zopiclone the same?. I have been on Zopiclone since I came out of hospital, then suffered anxiety, which is a lot better now, but my doc prescribed Diazepan at night for the anxiety, so I alternate now so I don't get addicted (well lets hope not). I also feel it is extremely important to get a half decent nights sleep, or I feel exhausted.

Sally

Hi, Sally, Both Zolpidem and Zopiclone are non-benzodiazepine hypnotics. I tried Zopiclone years ago and I found I kept falling over at night when I got up so I stopped that. I am on a very small dose of Zolpidem and find it fine. I do find that if I have a conversation at night after I've taken I don't always remember it. I work full time and before I was taking Zolpidem I was only getting about 4 hours interrupted sleep and I felt so exhausted. I didn't go on it until about a month after I was diagnosed and as you all know you sleep even less worrying about it all. I found from the first night I felt able to process the diagnosis much better after a good night's sleep. It wasn't on repeat prescription but the GP agreed after the first month that I could carry on with it. I feel so much better just getting uninterrupted sleep and can cope during the day.
I hope that helps.

Mandy x