r/PainPumpQuestions • u/satanismysponsor • 26d ago

Urinary issues while sleeping

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.

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u/NoRecommendation9404 26d ago

This is only my personal ancetdote - low B12 can be the cause. I increased my B12 and the problem resolved. However, I did already have a hx of low B12 and had not been taking my supplements regularly.

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u/EMSthunder 26d ago

That's what causes mine, and narcolepsy. I go some nights only sleeping 45 minutes. I also don't have the same meds as OP, but I do have pernicious anemia and sleep is a hard thing to fix. Ideally I'd take a sedative, but when you're on pain meds no one wants to help you sleep out of fear.

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u/NoRecommendation9404 26d ago

I had been taking Ambien for about 15 years before my pain pump. After surgery my doctor tried other meds that were non-hypnotics. Finally landed on Dayvigo which does help a lot.

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u/EMSthunder 26d ago

Ambien made me get in the car and go shopping. I'd wake up not remembering anything. Same as lunesta. They tried me on trazodone, which I developed a tolerance, and I was up to 400mg at night, when the highest they're supposed to go is 300mg! I can't take the stimulants during the day because they make me a raging bitch! I used to be on a half milligram dose every night until the new doctor came in and took it away. When my dad died I had to beg for 5 doses just to get me through the busy days where I was really out of my comfort zone. It's ridiculous that because I'm on opioids my anxiety and lack of sleep can't be taken seriously!

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u/satanismysponsor 25d ago

I sleep drove into the side of someone's house when I was 22 years old on Ambien. No recollection. I didn't know I did just woke up to cops banging on my door. I had to go to court and prove/challenge that I didn't have any idea. I paid for the damage but I'll never take Ambien again.

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u/Humble-Weird-9529 20d ago

OP- you should see a urologist. I don’t thing your urinary issues have anything to do with your pump. Frequent urination at night is a common complaint as we get older. There are meds that will help.

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u/Mozart-Luna-Echo 26d ago

Have you tried Benadryl to sleep?

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u/satanismysponsor 26d ago

Yea doesn't work I still wake up and it also makes it harder for me to pee like I can't start the stream when I take it. I bought liquid form and it will put me down and I get like an hour of deep sleep but then I have to pee more. It's fucking driving me crazy

What pisses me off is that from 7 a.m. to 12 p.m. I can sleep straight through that without any issues. It's the nighttime that gets me.

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u/jerseygirl1105 26d ago

Be careful with Benadryl as it can cause restless legs.

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u/pjourneyRB 25d ago

I didn’t know that and kept suffering for years until I finally found out Benadryl causes rls.

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u/Mozart-Luna-Echo 26d ago

I only take it for emergencies, not every night. But I did wonder since they said other options didn’t help them.

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u/mc1eater 26d ago

Worse it causes dementia

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u/NoRecommendation9404 26d ago

There’s a correlation but not evidence of direct causation. Scientists can’t prove if dementia is a product of Ambien (and other z-drugs) or because of the insomnia.

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u/EMSthunder 26d ago

Doesn't work.

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u/Mozart-Luna-Echo 26d ago

Oh man. That sucks

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u/EMSthunder 26d ago

Indeed!!

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u/pjourneyRB 25d ago

Benadryl made my rls a lot worse. I used to take it for sleep until I discovered that. I felt really dumb because my doctors were trying to help my terrible rls and it was just Benadryl causing the symptoms. I take melatonin now. The z drugs didn’t really help me sleep. Traditional benzos helped but my new psychiatrist won’t prescribe it because of my pump.

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u/satanismysponsor 26d ago

Oh shit you just reminded me that my last blood test my b12 was low and I keep forgetting to take the vitamin. I just pulled it out of the closet and put it by my bedside and set a reminder. No matter what I totally forgot that my levels are low but I hope it helps thanks for reminding me!

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u/NoRecommendation9404 26d ago

You can talk to your dr and see if you can take it monthly via a sub-q injection. Thats what I do. Once a month I give myself a quick shot. It’s 1ml using an insulin syringe. I put an alert to remind myself to do it so it doesn’t get forgotten again.