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Posted 27 Nov 2018 at 07:55

Hi all

It has been getting on for four months if not longer since my last Triptorelin jab. Throughout my side effects have been relatively OK, few hot flushes, boo hoo poor me swings, some weight gain, occasional sleep issues.

This last week my sleep patters have fallen apart. I dont feel sleepy when I go to be, I sleep in very small sprints, when I wake up my brain is ticking over like mad and I have wierd dreams.

Is it common at this later stage (on HT withdrawal) to have badly disrupted sleep?

I am trying to reduce day time naps (trying to meditate rather than sleep).

I am thinking of going back to the GP and asking for a swap from my anti anxiety meds to Melatonin to see if that helps. If I can get an appointment ...

Any other suggestions?

Interestingly, I picked up on my reading for Melatonin that the Prostate has Melatonin receptors in it. I wonder what these are for and what the impact of losing a Prostate in context of Melaton is?


Edited by member 27 Nov 2018 at 15:20  | Reason: Not specified

Posted 27 Nov 2018 at 15:11
If you find an answer to the sleep problem please share!

I go to bed reasonably early, (between 10 and 11) because I’m knackered.

I sleep for about 30-45 minutes then wake up. iPod on, visits to the loo. This goes on till around 3a.m.

While this is going on until 3 a.m. I seem to get very itchy and generally uncomfortable. This results in me moving around a lot which, understandably, really annoys my wife. I went through a phase of going to a spare bedroom and “sleeping” there until around 4 do that she could sleep without me getting up to the loo and flinging myself around in and out the downie because of the hot flushes. 🥵That annoyed my wife too! She said it was just a habit lol.

I sleep soundly in the main until around 6.

This has been going on for years with me but the treatment including PROSTAP has made it a lot worse.

I used to get up at 5:40 for work but now dose until around 8 ish.



Posted 27 Nov 2018 at 15:24
Cheers chaps

I think I might try forcing myself to stay up late. I struggle not having an afternoon snooze but it is the devil and the deep blue sea. Get some rest during the day and keep going haof awake or go through it like a Zombie.

What gets me is that it is only in the last week that this is really bad, four months after the last jab. I wonder if there are hormones rebalancing which is what is causing it?

I also recall several days of sleep apnoea at the start of this bout - wonder if that triggered it.

I'm not enjoying this!


Posted 27 Nov 2018 at 21:29

I finished with Zoladex in June this year,as planned, after 3 years. Although yawning my head off, feeling really tired, I just couldn't get to sleep once I'd gone to bed. Ended up just sleeping on couch (spare room full of rubbish) until recently every night. I'd end up getting to sleep something like 3/4am(per fit bit) and getting really annoyed at myself, shouting(quietly) at myself and skin feeling itchy. It wasn't too bad if I wasn't going into work, I'd just stay in bed as once I was asleep I was ok. Anyway 2 weeks ago I ended up at GP saying really fed up not being able to sleep etc. Got low dose sleeping tabs to take, just 2 weeks worth and they have done their job, remains to be seen of course if routine been changed. GP said, in simple terms, no point going for full time sleeping tabs as reason for insomnia, withdrawal symptoms, will still be there, until they fade, which they will do. Hopefully they'll fade fairly soon.

Edited by member 27 Nov 2018 at 21:31  | Reason: Spelling

Posted 27 Nov 2018 at 22:42
Interesting. I’m on bicalutimide and that makes me sleep like a log. I go out like a light. I’ve not slept so well in years :).


Posted 27 Nov 2018 at 22:55
Yeah, I was sleeping really well, albeit still really tired of course, whilst still on medication but when I stopped had sleep issues. Although, I do remember struggling with sleep when first taking prednisone, I think.


Posted 28 Nov 2018 at 02:01
It might not be the hormones or anything to do with withdrawal. Any kind of stress can affect sleep patterns and Lord knows, a cancer diagnosis puts stress on most people even if they think they are coping well. There is a Macmillan leaflet about the psychological impact of being told you have cancer; many find that the greatest impact is after treatment has been finished ... appointments are less frequent, we are left bereft and feeling unsupported, it opens a big void which is filled with "I wonder if it has worked, I wonder how long it will work, I wonder if it will come back?" etc, etc.

There is also the night weeing issue to complicate things - some men who have good bladder capacity during the day and complain of multiple night trips feel exhausted by their urinary problem but it is actually the other way round; their sleep quality is poor and their brain says "ooh, you're awake so you must need a wee." Bladder retraining can help with that.

And then there are the hot flushes - well known for their ability to ruin a good night's sleep.

Chuck all of that into a couple of bad nights and you're off! Peterco is right of course, poor sleeping is a habit and difficult to break. Sleeping tablets can do that for some people - just a few nights of being zonked is enough to break the pattern.

I have had insomnia for many years; it started with working during the day, putting 4 children to bed and then staying up all night to write a thesis or a research paper or whatever. I have never been able to regain any kind of normality.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 28 Nov 2018 at 12:52

There is also the night weeing issue to complicate things - some men who have good bladder capacity during the day and complain of multiple night trips feel exhausted by their urinary problem but it is actually the other way round; their sleep quality is poor and their brain says "ooh, you're awake so you must need a wee." Bladder retraining can help with that.

I had months of "slow flow" issues following my various biopsies, but one benefit for me of HT has been that the "shrinkage" has got me peeing like a fire hose!



Edited by member 28 Nov 2018 at 17:15  | Reason: Not specified

Posted 29 Nov 2018 at 14:32
Interesting to see that I am not the only one.

I have broken the cycle a bit now (a little medicinal Bells helped).

I suspect stress may have been at the root as I had awful IBA at the time.

I am feeling like I have more energy so am getting around more which should tire me out.

Posted 29 Nov 2018 at 18:39

Good to hear you are beginning to make some progress with the insomnia and you have more energy.




Posted 30 Nov 2018 at 10:22
Cheers Ian

Slighty worse night last night along with sleep apnoea and bad dreams. I suspect this will be a cycle for a while.

Posted 30 Nov 2018 at 10:34
I sleep very well, but only briefly, hence my posts at 2 or 3 or 4 in the morning!

It’s nothing to do with PCa. I might average 4-5 hours a night. I have always been the same.

Her Loveliness however, needs 9-10 hours, and is hardly a ray of sunshine when she does arise........

Posted 14 Dec 2018 at 19:58
As mentioned above I had 2 wks of low dose sleeping tabs in an attempt to break not getting to sleep routine. Sleep was good whilst on tabs but in the couple of weeks or so since, problem sleeping returned. I'll see if anything changes over the next few weeks or so.


Posted 14 Dec 2018 at 22:11

When i had my dark times i could not sleep at all, doc prescribed me zopiclone, max 3 per week. i have had these for 3 years now. i take probably one a week when i am struugling to sleep night after night.

its enough to guarantee 4 solid hours once a week. cant say they are good long term. doc said they were addictuve, not that bothered about that with advanced T4 cancer.

i guess my point is, dont suffer if you dont need to, this rubbish disease does enough damage so take any break available.


Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

Posted 15 Dec 2018 at 10:12

Morning everyone,

Not so many years ago many doctors prescribed sleeping tablets quite liberally but due to the addictive nature of hypnotic medication NICE stepped in with stricter guidlines for use. Nowadays they usually, but not always, give them for 3/4 weeks to enable the patient to hopefully regain a better sleep pattern. Insomnia can be very debilitating, often changing the sufferers lifesyle and outlook on life. I have known a number of people who have had excellent results when taking the antidepressant Mirtazipine when prescribed for a low mood when the insomnia is a precipitating factor. Alot of us know the feeling of being wide awake at 3 am, often after we've been for a wee, when our minds can take us to a pessimistic place,its horrible. Peronally I attempt to get to bed round about the same time each night and get up early and be as active as i can through the day to get knackered. This does'nt prevent the bad dreams though that often leave me waking up with a clenched jaw !

Take care,  Paul.







Edited by member 15 Dec 2018 at 10:15  | Reason: Made mistake

Posted 15 Dec 2018 at 20:11
My current plan is to see if I settle down at all over the next month or so & if not go to GP again. I think I would still be tired even if I slept well until effects of Zoladex disappeared but sleeping well would be very welcome. I am fairly active during the day and feel absolutely worn out at bed time but it takes approx 3-4 hrs at least to get to sleep once asleep I sleep well. A nurse said to me the other day when I mentioned my reluctance to get straight back to GP "if you have a headache you take paracetamol so what's wrong with tablets for not sleeping" which is fair enough I suppose, especially, as mentioned by Kev, we've got PCa to deal with.


Posted 24 Jan 2019 at 00:36
Ah well, nothing changed for me and sleep pattern, problem remains I.e. just can't get to sleep: situation still a case of being really tired, go to bed about 11pm but still awake at say 3am. Going back to GP next week and probably get sleeping tablets again. Think I have tried most things in order to get some decent sleep. Still think it's down to stopping all medication (as planned) a few months ago so may eventually stop (same goes for Achilles tendonitis I'm struggling with which oncologist states came about due to prednisone which I stopped (again as planned) over 12 months ago).


Posted 11 Mar 2019 at 20:05
Updating lack of sleep scenario. Got more sleeping tabs but they didn't seem to work at all this time. Got fed up with it and went back to GP before I finished the tablets. Suggested try a 12 week course of melatonin which I started say 3 wks ago and I have to say something is working as instead of getting to sleep at maybe 4am it's something like 11/11.30, not too long after going to bed. It may well be coincidence of course as a couple of side effects seem to be easing also, I'm fortunate to be able to have acupuncture concentrating on relaxation/sleep rather than hot flushes. Obviously I don't really care why I'm just so glad it has changed. Hopefully I can get some energy/strength back.


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