Can't sleep

[jazzy53]

I am about 9 months into a two-year course of ADT and cannot get a decent night's sleep. I also had two months of radiation. There's ample literature indicating that ADT interferes with sleep, possibly due to hot flashes, but there may be other causes, too. Has anyone tried anything that combats this and provides a relatively good night's sleep? I've tried ambien and cannabis. Ambien gives me about 4 hours, which isn't enough. Cannabis is pleasant, of course, but ineffective. I'm considering cognitive behavioral therapy, but don't want to go down a rabbit hole of endless therapy without some chance of success. Any suggestions? I can't imagine going through another year-plus getting only four hours of quality sleep. I'm getting depressed over this. Btw, I am 65, Gleason 9.

[Magnus1964]

I might look into gabapentin 600 mg plus melatonin. I have found not all melatonin is the same sp watch for that. If you're having a really bad time sleeping try CBD oil instead of cannabis.

[6357axbz]

I found a large dose of high potency THC oil, Indica strain, taken orally just before going to bed, had me sleeping like a baby all night. That was early on in my treatment. I’m no longer using cannabis as I found it had zero impact on my cancer as measured by PSA. I’m still on ADT, 10 months now continuously, along with Zytiga. I sleep pretty well but do wake up a few times a night, sometimes caused by hot flashes, but go right back to sleep. I do exercise regularly and, like many here, fell that contributes mightily towards mitigating SEs. I also had 25 IMRT to the primary tumor.

[timotur]

Been on ADT for six months, and just finishing radiation, also having trouble sleeping. I've read one cause is Prednisone, and another is radiation causing urgency from an irritated bladder. One thing I do is take a 1mg Lorazapan 1x/wk at bedtime, to knock me out and make sure i get one solid sleep per week.

[Hidden in reply to timotur]

You are lucky to have lorazepam prescribed. I used it for years but my new doctor is too fearful of the FDA/DEA to renew the prescription on this 'controlled substance' type med. It was very inexpensive and worked very well with no nasty side effects like the dry mouth I experience with the trazadone he offered as an alternative.

[Tall_Allen]

Ambien only helps you get to sleep, but it doesn't help you stay asleep. Lunesta or Ambien CR are designed to help you stay asleep. Don't scrimp on the dose - less is not better.

CBT is usually a very limited term therapy - you learn it and use it. However, if your mind is buzzing and that is keeping you up, you may find that Mindfulness is what you need. It took me about 3 months of daily practice (group classes are useful) until it became habitual. When I can't get to sleep, I practice it and usually fall asleep before I even finish a session.

[jazzy53 in reply to Tall_Allen]

Thanks to you and everyone else for your replies. I've tried Ambien CR and found it makes zero difference compared to regular ambien. Both put me to sleep but don't keep me asleep. Same goes for cannabis; maybe CBT would help, but I agree it's short acting. Mindfulness is an interesting possibility, so I'll look into it. I think there are competing or perhaps cumulative factors at work: ADT messes with sleep; the radiation probably irritated my bladder, and so I get up a few times a night to pee; hot flashes continue day and night. So it's a complicated story. I do exercise regularly, so I've got that covered. I seem to have gotten a good portion of possible side effects from ADT, but sleep deprivation is, so far, the worst.

[Tall_Allen in reply to jazzy53]

Talk to your doctor about Lunesta, maybe at a higher dose. Have you tried a benzodiazepine? Everyone responds to different drugs. Getting sufficient sleep is vitally important to your physical and mental well being.

[jazzy53 in reply to Tall_Allen]

Great idea re. benzos. I have several lorazepams in my medicine closet, so no harm in trying. Thanks for the suggestion. I'm well aware that sleep is important to my physical and mental well being. It's taking a toll on both these days, so I need to get a grip on this problem asap.

[Hidden in reply to jazzy53]

I have fond memories of lorazepam. See my comment above.

[dorke in reply to jazzy53]

I was prescribed Imovane which was OK.

Now my GP prescribed me a 1/4 Remeron pill before going to sleep which I havent yet tried.

[Classical6 in reply to jazzy53]

Ask your Dic to prescribe flomax. It will help your bladder empty completely. Yes, the radiation can irritate your bladder.

[LowT]

Might be helpful to have a sleep study performed.

[jazzy53 in reply to LowT]

I tried a sleep study some years ago and couldn’t sleep with all those wires connected to various parts of my body and the overall discomfort of the place. I’ve had sleep issues for years but the ADT has greatly magnified it. I never sleep well now.

[WayneSC]

Same issues and I will receive my final injection of Lupron in November. A cold room is about the best solution for me although my sleep is somewhat jagged. Melatonin causes dreams that are far to intense for my taste.

[EdinBmore]

Many of us can empathize with your wanting a decent night's sleep.

1 mo of Firmagon, 3 three mo injections of Lupron. Haven't slept an entire night since. Either the hot flashes wake me or I have to pee (btw, the urgency for bathroom has subsided immensely - I had EBRT and brachyboost). So, I think it's the flashes that wake me and I figure that I might as well make a bathroom visit just too cool off.

Melatonin gave me horrible dreams; not nightmares but weird ass, upsetting dreams. Eww.

Herbal teas...nah.

Actually, a shot or two of booze probably helped as much as anything but then I became concerned about the sugar/wt gain.

So, interesting to read other's reactions and remedies. Clearly, it's individual; one size doesn't fit all.

My fear is that, even though I had my last - god, I hope so - shot in May, the hot flashes will continue. I've read that some men continue to have them long after Lupron is gone (may take 6+ mos).

Oh, btw, depression, despair and grief are common side effects of Lupron; lack of sleep obviously doesn't help. In your darker moments, keep telling yourself, "it's the drug, it's the drug."

So, good luck and if you find something that works for you, let us know.

EdinBaltimore

[jazzy53 in reply to EdinBmore]

Thanks for that. I say that to myself all the time.

[bhayes84]

What I am using:

2Tbsp potato starch with dinner ( not sure if it helps with sleep but it does enhance dreams).

3 grams glycine

Effective but don’t want to use it regularly:

1/3 or 1/2 Benadryl

I just saw a study which showed long-term use of Benadryl was correlated with cognitive decline.

I also use orange glasses an hour before bed time to cut out all blue light, and I also sit in the direct sun for 5 to 10 minutes as soon as I get up in the morning to help keep my internal clock in sync.

I’m not on ADT but I have had trouble sleeping for years.

[Jimhoy]

Yup!!! Been living the dream (or lack there of) for about 2 years now! It has been blamed for my other conditions (anxiety & depression) too! Sleep deprivation is a terrible thing on so many levels!!!!

Spent a lot of co-pays and with little hope, ended up starting reading a suggested book “Insomnia Solved” by Brandon Peters M.D. a self directed CBTI program!!

I find my issue is multi bathroom runs and rolling over on my man boobs (man, that will wake you up quick and often)!!

[jazzy53 in reply to Jimhoy]

Yeah, it's hard to tell if the sleep disturbance that come with ADT/radiation is due to urinary frequency, hot flashes, physical changes (like your man boob issue), something that the hormonal treatment does to your internal wiring, or all of the above. As far as I can tell, oncologists who deliver the treatment are ill-equipped to help, and all the articles I've read about it simply document the problem without offering solutions.

[Jimhoy]

Hindsight being 20/20, and not knowing your regiment but I did miss a couple of months while contemplating a QoL vacation. I had bloodwork at the end of the break and my T was still 15 and PSA virtually non-detectable!! This proves my theory that you don’t necessarily need the amount of drugs that they give you!! A simple blood test could tell if you are still in ADT!! The common side effects are obvious however nobody will commit to whether the ADT or the drug inducing it, caused my “EXTREME” side effects and if would be a shame if it was due to an unnecessary high amounts of Eligard in my system!!

Ps: In early June, 8 months after my last 3mo Eligard injection, my T was 18 and PSA still not detectable!! ADT STILL GOING STRONG!!!! We’ll see with my next test in Nov!!!

Sorry, point being.... it was too late before I learned much about aPC and its treatment and side effects (well into my ADT) but maybe you are in position to question my theory!! Maybe a 3mo injection every 4 to 6mo is all one needs to stay in ADT!! Remembering that Lupron, Eligard, etc DO NOT CURE CANCER. They simply kill Testosterone to starve PC!!! I’m positive big Pharm won’t agree but.......!!!!