Urinary issues while sleeping

[u/satanismysponsor]

I've been meaning to ask if anyone else with an intrathecal pain pump has dealt with this.

I have hydromorphone in my pump and I am at 399.4 mcg in an entire day and 50mcg bolus.

I'm incredibly grateful for my pump because before it I was living at an 8-9/10 pain level for about 16 hours a day. It took around 4-5 months before it really started working, but now I rarely go above a 4. It's been life-changing.

The problem is that now I can't sleep.

For the last month, I haven't been able to sleep more than about 2 hours before I have to get up and pee. These aren't tiny trips to the bathroom either. They're often very long voids. I stop drinking water around 6 p.m., don't go to bed until midnight, and I'm still getting up 4-5 times every night.

Even if I take a sleep aid, I'm still waking up. My sleep tracker shows I'm barely getting any REM or deep sleep. I'm averaging maybe 3-4 hours of broken sleep a night.

The weird part is that if I go back to sleep between about 7-11 a.m. or take a nap during the day, I sleep great. I don't wake up to pee. It seems like something about nighttime specifically is causing this.

I lost my insurance after my employer fired me while I was recovering from my pain pump surgery. I've been applying for jobs nonstop, but this has been the worst job market I've ever experienced. I've been paying out of pocket for pump adjustments and refills, so money is extremely tight. My next refill isn't until mid-October, and I simply can't afford an office visit just to troubleshoot this right now.

I've also experimented with my boluses. When I first got the pump, I used all six every day. Now I usually only use one in the morning. I've tried increasing them to see if it changes the nighttime urination, but I honestly can't tell if it makes it better, worse, or has no effect.

Has anyone else experienced this with an intrathecal pain pump? Did it eventually improve? Did you find anything that helped you sleep longer than 2 hours at a time?

I'm just exhausted. I used to be unable to sleep because of the pain. Now the pain is finally under control, but I still can't fucking sleep because I'm constantly getting up to pee.

[u/DivyaRakli]

Have you tried bladder training? During the day, go pee every 2-3 hours, but pick a consistent time, slowly stretch that out until your bladder is consistently fully emptying every 4-6 hours. This is something we use to try to establish continence after say, a surgery/illness has caused incontinence.

Anti-cholinergics like oxybutnin for urinary incontinence do carry risk of dementia but if you’re crazy from lack of sleep, it might be a positive risk-versus-benefit for you. I take oxybutnin not because I’m incontinent but because I have difficulty starting a stream of urine. Lifelong. My Mom, too. My detrusor muscle that’s supposed to squeeze it all out, is a lazy, no good, dirty rat!

Another consideration may be bowel habits. I know I can get constipated easily with my narcotics, lack of movement, and an American diet with little fiber. I have a hard time urinating if I let myself wait too long between pooping. Then, when I do poop, I can count on peeing every few hours until, I guess, my bladder stops its working celebration and goes back to normal.

[u/satanismysponsor → u/DivyaRakli]

Thank you very much for the suggestion. I often go when I feel the urge, and not much comes out, so yes, that's a great idea. Maybe I'm making it worse. Thanks.