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Sleep deprivation

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User
Posted 18 Nov 2024 at 22:29

Hi, I've been on prostrap 3 for a couple  of months and I am waiting  for radiotherapy  , I'm still  working  and get home exhausted,  I go to bed around 19.30 but I just can't  get a decent  sleep   most nights  I don't fall asleep until about 2.00 am if im lucky.


I have tried staying up later but I need my bed... is this common? Any ideas 


Please 

User
Posted 19 Nov 2024 at 19:58

Thanks, it the only side effects I'm really  having,  I'm on ht for 2 years, so I better get use to it, unfortunately I have to work.. thanksfir the reply 

User
Posted 19 Nov 2024 at 21:18

It may help to be doing some exercise, which should be regarded as mandatory on HT anyway. You could find it makes you more tired at bed time, and more likely to sleep.

User
Posted 19 Nov 2024 at 23:23

Hi Marvel,


Oh Yes! I know what you’re going through. It was 2 am most nights when I got to sleep. Absolutely dreadful and so hard, tossing and turning in between sweats. And TBH no matter how much exercise I did it didn’t make one iota of difference. Exercise is certainly very good if you’re on HT but made no difference to my sleep…or for that matter my joint ache. If that’s the only real side effect you’re having to deal with then at least that’s some consolation. Interestingly  enough, I didn’t really feel any more tired during the day but I am retired and tried to stay as active as possible. I noticed a significant difference in my sleep patterns when the last Prostap wore off….and now I am back to my old sleep patterns of waking up at 3am🤷🏼‍♂️


my advice would be not to stay on Prostap for 1 minute longer than absolutely necessary. I stopped after 2 years, with my Oncos agreement, because of the devastating side effects. I was suppose to be on it for 3 years, but there comes a point where QOL is more important. I have a friend who finished Prostap in June but is severely affected still by Joint ache to the point where his mobility is seriously affected.


good luck with the rest of your treatment and maybe make use of any sick pay available to you with your work, to concentrate on YOU! IMHO there is not nearly enough support out there for those of us going through HT, and as Andy says, exercise is a very important part of it, especially weight bearing…and also what makes you feel good, my saviour was eBiking so find something you enjoy doing and go for it,


all the best,


Derek

User
Posted 26 Nov 2024 at 18:40
I have been on Prostap, apalutamide, cyperterone acetate as part of my HT - for life. During my prostatectomy they removed 2/3's of the bladder, so I now visit the toilet 4 to 5 times every night, on my worst nights this can be up to 9 toilet trips. This was absolutely devastating at the start, but I just decided to embrace it. If I can't get back to sleep, which is more often than not, I just get up and do something productive, do some house / personal admin, clean the kitchen, put on a wash, kick the cat out etc. When sleep washes over me again I will go back to bed, but I give up at 6:00 ish and go for a run / gym. (I go to bed at 8:45pm)

I am 54, but was able to successfully apply for ill-health retirement due to fatigue (permanent), the nocturia (disrupted sleep) and general poor health and receive a meagre pension. I can't imagine how difficult working and HT is, especially the commute home after a full day. Towards the end of my working life this was proving dangerous due to tiredness.

I wish you well and hope you find a solution to your sleep issues. A lack of Sleep and constant Pain have a lot to answer for.

Good Luck
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User
Posted 19 Nov 2024 at 15:47

Very common, I am afraid. Both Prostap and Degarelix have this effect on me , when I do get to sleep, I tend to wake after two hours and repeat this cycle.


I am retired but wouldn't like to work with this sleep pattern. 


Some nights, I take 2 co-codamol 8/500 as the codeine does make sleep at 2am or when I first wake after going to bed at midnight .


I have 4 more monthly Degarelix to go and hope sleep improves when my HT ends. 


Best wishes  ( I would say sweet dreams, but any I have are unpleasant ones )


                      Mike

User
Posted 19 Nov 2024 at 19:58

Thanks, it the only side effects I'm really  having,  I'm on ht for 2 years, so I better get use to it, unfortunately I have to work.. thanksfir the reply 

User
Posted 19 Nov 2024 at 21:18

It may help to be doing some exercise, which should be regarded as mandatory on HT anyway. You could find it makes you more tired at bed time, and more likely to sleep.

User
Posted 19 Nov 2024 at 23:23

Hi Marvel,


Oh Yes! I know what you’re going through. It was 2 am most nights when I got to sleep. Absolutely dreadful and so hard, tossing and turning in between sweats. And TBH no matter how much exercise I did it didn’t make one iota of difference. Exercise is certainly very good if you’re on HT but made no difference to my sleep…or for that matter my joint ache. If that’s the only real side effect you’re having to deal with then at least that’s some consolation. Interestingly  enough, I didn’t really feel any more tired during the day but I am retired and tried to stay as active as possible. I noticed a significant difference in my sleep patterns when the last Prostap wore off….and now I am back to my old sleep patterns of waking up at 3am🤷🏼‍♂️


my advice would be not to stay on Prostap for 1 minute longer than absolutely necessary. I stopped after 2 years, with my Oncos agreement, because of the devastating side effects. I was suppose to be on it for 3 years, but there comes a point where QOL is more important. I have a friend who finished Prostap in June but is severely affected still by Joint ache to the point where his mobility is seriously affected.


good luck with the rest of your treatment and maybe make use of any sick pay available to you with your work, to concentrate on YOU! IMHO there is not nearly enough support out there for those of us going through HT, and as Andy says, exercise is a very important part of it, especially weight bearing…and also what makes you feel good, my saviour was eBiking so find something you enjoy doing and go for it,


all the best,


Derek

User
Posted 24 Nov 2024 at 00:29

Thanks,  for the response,  I might try to see if the Dr will prescribe some sleeping tablets,  I asked the consultant but he was a little reluctant.  I just lie there and can't  get off, so I end up on my phone which makes it worse. 


I also cut out coffee  to see if it helps. The other issue  is I'm loosing muscle  especially  in my arms and it's only been  about 3 months of HT .is that normal. I've got some 2.5 kg weights so I might  give them ago along with exercise  bands?

User
Posted 24 Nov 2024 at 06:16

Originally Posted by: Online Community Member
 I just lie there and can't  get off, so I end up on my phone which makes it worse.


Tell me about it mate. 🥱


I'm regularly alone on this site in the early hours. Sometimes I'm lucky enough to be joined by a moderator with insomnia or a bloke from Australia with a "buggered prostate" who's on his lunch break. 😁


 


 

Edited by member 24 Nov 2024 at 06:26  | Reason: Typo

User
Posted 26 Nov 2024 at 18:40
I have been on Prostap, apalutamide, cyperterone acetate as part of my HT - for life. During my prostatectomy they removed 2/3's of the bladder, so I now visit the toilet 4 to 5 times every night, on my worst nights this can be up to 9 toilet trips. This was absolutely devastating at the start, but I just decided to embrace it. If I can't get back to sleep, which is more often than not, I just get up and do something productive, do some house / personal admin, clean the kitchen, put on a wash, kick the cat out etc. When sleep washes over me again I will go back to bed, but I give up at 6:00 ish and go for a run / gym. (I go to bed at 8:45pm)

I am 54, but was able to successfully apply for ill-health retirement due to fatigue (permanent), the nocturia (disrupted sleep) and general poor health and receive a meagre pension. I can't imagine how difficult working and HT is, especially the commute home after a full day. Towards the end of my working life this was proving dangerous due to tiredness.

I wish you well and hope you find a solution to your sleep issues. A lack of Sleep and constant Pain have a lot to answer for.

Good Luck
 
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