Ever since my radiotherapy and brachytherapy 2 months ago I have been suffering nocturia, sometimes being forced awake 5 times a night by a painful call and having little or no product when staggering once again to the toilet for a little dribble.
I am now trying to limit the liquid I drink during the day to a bare minimum, the loss of sleep is incredibly debilitating, and although it's often reported as a problem, no detailed research has managed to come up with a solution for it.
How I would love to self catheterise and have at least 3-4 hours of uninterrupted sleep....
During my research I saw that calcium channel blockers can cause nocturia, I currently take Amlodipine for blood pressure, I'm thinking of stopping them but not sure what alternatives are available.
Has anyone tried this?.....or does anyone have a strategy for handling nocturia
?.... I dread going to bed because I know what's going to happen...
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tunybgur
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Yes, in fact everything was working perfectly until the medics got involved.
I realise that the cancer must be treated, but since the biopsy 10 months ago nothing has been the same, and a month after treatment finished I still haven't seen any improvements, but it's the lack of restorative sleep that's the worst.
I will definitely try the oxygen treatment, I'm getting pretty desperate now, thanks for the heads up!
I don't think is is a good idea to restrict water intake. Adequate water intake is important for many reasons.
I keep a urinal near my bed so I do not have to go to the bathroom. This has less impact on my sleep than getting up and walking. I usually have to pee 3 to six times a night but there are other things that interfere with sleep. At least I have some control over one of them.
I have used an external catheter when traveling and considered using it at night but I think that the discomfort, as minimal as it might be, would also keep me awake.
I tend to agree with you, waking up in the middle of the night with a dry mouth and raging thirst is possibly a worse option.....and it also doesn't seem to have much of an effect on the nocturia.
My output varies highly some nights as much as a litre and at other times such as last night maybe one quarter that much and dark brown. It seems I pee a lot when it is clear and less when it is brown and bloody. I can make no sense out of it at all.
have you talked to a urologist about meds for nocturia? They seem to help my husband. Another action that helps is to take time during the day to sit with your legs raised.( or wear compression socks) Water collects in your legs during the day, then when you go to bed, it makes you need to urinate.
The idea of a urinal next to the bed sounds helpful.
I have an appointment with the Urologist in a few weeks when I hope things have improved and we can discuss meds.
I have moved into the spare room for the duration so I don't disturb my wife, it also has an en suite which is just a few steps. I have some compression stockings from the hospital, I'll try them tonight, thanks
I think the trick is to wear them during the day. Just like elevating your legs during the day.
Good luck! My husband actually slep 8 hours the other night but the following night he was up a lot. Frustrating but he does feel the prescription is helping
I used to dread going to sleep until I bought a urinal. I read many posts here with men getting good sleep while using them. Now as soon as I feel my consciousness start to raise and before I actually feel the need to void I will roll to one side and use the urinal. I can then immediately go back to sleep. Only way I know how many times I passed urine is by looking at the amount in the urinal in the morning. No more anxiety about waking up, walking around, getting upset about it and then taking time to get back to sleep. I now feel refreshed in the morning. Also I take no liquids four hours before bed. Additionally I think 4mg of Flomax a day helps with getting a good void.
My nocturia started with my biopsy. I am on somewhat your same timeline. I was feeling just like you about it. My only good night was when I had a catheter for my HDR Brachy. My Doctor said it was optional but I asked for it so I could get a good night's sleep. Now that I am sleeping better using the urinal it is a non issue and frequency seems to be dropping. Taking it one day at a time and hoping it resolves but can easily continue like this if it doesn't. I think it's important to void as soon as you feel your body starting to wake up and not lie there the next fifteen minutes or so to get the actual urge to void. This way you kind of sleep thru it.
Oddly, my nighttime voids improved after RP. What I’d done before however was to hydrate copiously from morning until dinner. And then limit it after that. Unless you live in a very low humidity place, this should carry you through the night. I exercise in the morning too, so am fully pre-hydrated before that.
One other thought. If you have a high salt diet (which I do some days!!), you’ll naturally drink more to quench the thirst. Your kidneys offload that sodium overnight via urine. (It’s another reason I like to work up a good sweat when exercising). Sweat removes salt.
I have experienced very similar isssues and started using a condom catheter with drain bag at night. Still get up two to three times to empty the bag. It has greatly improved my sleep.
Just had plain radiation. As mentioned above. I take Oxybutynin 5 mg once a day. I have been doing that since radiation.
I am coming up on 9 months post radiation and I only get up to go 1 or 2 times per night. Last night it was zero. That is a huge change from 4 to 5 times. In my case it is getting better over time.
I drink normal amount of fluids till 6 pm and none after that. No caffeine. I have transitioned to herbal teas. That has helped.
Interesting I have noticed more dry lips, etc during periods of exercise. I compensate by using a lip balm, carrying water on hikes and I use a very tart sucker.
My MO told me about this. They give it chemo patients and pregnant women. I buy them on Amazon. They are called Preggi pops or candies.
I take Tamsulosin but that's to help difficult peeing which I had (have) after HDR brachy, it's settled down a bit now.
I am supposed to have an appointment with my consultant in a few weeks and I will ask him about Oxybutynin, I think it may only be a PSA review, I have to have a test just before the appointment, and I was told to expect it to be a telephone consultation.
i dont have much in the way of an answer but just wanted to say i understand so much and am with you. I havent slept good in many many months now and it is hurting me. I am going to get a sleep apnea test today in fact. Wife says I stop breathing several times each hour and then gasp for air !!
Nocturia will shorten your life, there is no doubt about that and that's why I'm surprised more attention isn't paid to it....it seems to be up to the patients to try and resolve the issue!
Melatonin greatly improved my Nocturia and it is no problem at all now. This is a documented effect as well as its anti-prostate cancer properties. I take a 10 mg tablet at bed time that is both immediate release and extended-release (NATURE'S ESSENTIALS Melatonin 10mg Immediate & Extended Release)
I feel you brother. My 28 sessions of IMRT resulted in a lot of burning at the end of a pee and increased nocturia like you describe. Tamsulosin and ibuprofen at bed time relieve the pain, but not the urgency with little to no pee. Fortunately, I have learned to fall right back to sleep and when I try to get to 8 hours, I get restorative sleep.
That's the problem, after the first few episodes I find it very difficult to get back to sleep.
In the morning there's no feeling of being refreshed, just exhaustion. I'm retired so I can get some catch up with an afternoon snooze, but the tiredness makes it difficult to maintain fitness, and I'm normally very fit.
I slept through the night last night, and the night before, and about 9 out of 10 nights. That wasn't the case in the first year after radiation.
I was part of the get up to pee crowd - about 3-6 times a night. And very little pee came out. I was on Tamsulosin - which might have helped - but it still was a miserable thing.
My radiation oncologist suggested I investigate "Green Light" surgery - which is sort of TURPS but done with a laser. The urologist basically burns away any restrictions in your urethra. And pee then flows.
Sounds like magic? Well - in my case, there was a downside - I lost the ability to control my pee. (TA had warned this might be the case. I was desperate, and the urologist offered no advance warning of this.)
According to my urologist - everything would get better by itself and I should practice doing Kegels whenever I was awake. That was very little to no help at all. So I went to a physical therapist specialist in male incontinence. She taught me how to do kegals better, and eventually had me using a specialized TEMS device to do the Kegals for me. I found one on Amazon that was 1/5th the price of buying the professional one she offered - and worked equally well. This seemed to help.
I also changed urologists sometime about here - the urologist who did the green laser seemed to think it was a wonderful result, despite my issue of incontinence. The new urologist (a top guy in NY) did scope me and commented that it seemed that the green laser treatment might have been overdone.
Eventually - about 18 months after the green laser treatment, things started getting better on the pee front. I went from wearing Depends to a maxi-pad in regular underwear.
At about 2 years, I went from the maxi-pad to a mini-pad, and that's where I am now. I only wear regular underwear under my PJ's at night - and can get through the night and about 10 minutes after I wake up before I really need to pee.
Control has continued to improve - mostly by forcing myself to wait to pee.. which must be building urinary sphincter muscle. I hope to be pad-free within the next 6 months, but the minipads aren't an issue or even an annoyance now. It's only 1 a day and it's just a bit damp at the end of the day.
So - would I recommend green-laser? If you can find a urologist who does these weekly at a minimum, with success - then it might work for you, provided you understand beforehand that it may take quite a while to recover continence after the surgery. One big plus for it is discontinuing Tamsulosin with its accompanying side effects.
Thanks Don,I don't have any side effects from Tamsulosin , but I'm wary of becoming dependent.
The first week after the brachy I thought I was going to have a blue light trip to A&E to be catheterised, my nighttime trips when I was just standing there at 3am praying for something to happen, and just being rewarded with a miserable little dribble.
Well it's not perfect but much improved now, except for the frequency, but I'm sure things will improve.
I don't want any turps or lasers, I'll put up with not winning any pissing contests 😂.
I've tried kegel exercises, not sure if they help.
Good luck in the future and I guess we can be thankful the cancer is under control.
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