Apnea and Overactive Bladder

[ronlecroy]

This is slightly off topic, but I am desperate to the point of becoming unstable.   I'm looking for suggestions for a Overactive Bladder Message Board. 

Over the recent months I've had a hellish mix of apnea and extreme overactive bladder.  I posted here and everyone was very helpful, but the overactive bladder is ruining every attempt at sleep. Sleep docs told me to stick with CPAP and the overactive bladder might subside.  It didn't and has gotten so bad I can't sleep more than 10-20 minutes at a time due to strong urgency, even though bladder is empty.  I've had PSA, 4K, ultrasound, MRI, digital rectal exam.  All tests negative for any disease.  Having a cystoscope today to examine inside of bladder.  I'm taking Vesicare and Myrbetriq.  Also tried Noctiva (desmopressin) which didn't work. 

My mental state is such that I would rather not continue living like this.  I've aged 10 years in the last year and find myself waking up on the floor in various places in the house, often in the bathroom.  I don't recognize the man in the mirror.  I look scary.  Being continuously awake for days because of the bladder is literally killing me.  I have no friends or family for support and I can only rely on the internet and my urologist.  It's impossible to have a social life or job and avoid people due to my appearance.  I'm particularly worried because doctor offices will be closed over the coming holidays.  Today I'm going to beg my doc for a catheter or strong sedative so I can at least get a few hours relief.

Again, I apologize for being off topic, but this is one of the best medical forums on the internet (the other sites take forever to load!), with helpful people.

[Sleeprider]

Ron, if this is a nocturia problem, then my best suggestion s that you update you old M-Series CPAP and get something that can tell you if your CPAP therapy is effective. Your machine is certainly due for replacement, and you might find a Resmed Airsense 10 Autoset can correct a problem you may be unaware of in your therapy because you don't have useful data, and it has been a long time since your last test. You don't need a test with auto CPAP, and it just might solve your problem with night-time over active bladder. Poor CPAP treatment or untreated sleep apnea is a common cause for noturia, and with your old brick, who would know? Get a replacement!

https://www.usa.philips.com/c-m-hs/bette...n-bathroom

I never met a urologist who didn't think cyctoscopy wasn't the magic bullet. Good luck with that.

[Fats Drywaller]

Your situation sounds really bad and I sympathize extremely, but there's only one thing I can think of that might help. If I were in that situation, I know that I would want to give sleep the #1 priority, so I would definitely start using a urine-collection bag with either a catheter or a small condom-like attachment, the kind of bag that was once called a "motorman's friend": use that all the time and especially when sleeping. That way you don't have to get up and go to the bathroom to pee; you just do it right there and immediately go back to sleep.

The main thing is that you desperately need to get your sleep back, because that's the only route back to good health. The only way to do that, assuming that you have sleep apnea and that CPAP (or ASV) will treat it, is to use the machine during every hour of sleep. Again if it were me in that situation, I would immediately get a data-capable machine if the Remstar can't write full data to an SD card, get a comfortable mask, use Sleepyhead to get charts from the SD-card data, post the charts here on AB, and ask for advice about tuning the pressures and other settings. All of that would be while wearing the collection bag and trying to forget that part as much as possible while sleeping. Without the bag, the condition is obviously too much of a distraction and it'll keep you awake just going back and forth to the toilet all the time ... so use "appropriate technology" to help you deal with it!

Ya gotta do whatcha gotta do. I would immediately try to enlist the help of my doctor or doctors, especially a sympathetic urologist assuming that one is available, to help me do that.

P.S.: I just did a quick web search and found that one brand name of a motorman's-friend type of bag is "Stadium Pal". Looks interesting, but I don't know whether the attachment device with that one is suitable for use while sleeping.

[Fats Drywaller]

I never met a urologist who didn't think cyctoscopy wasn't the magic bullet.  Good luck with that.

I agree. Cystoscopies are overrated. And that knee-jerk reaction of the doctors isn't limited to the specialists. I was a tobacco smoker long ago and I've had trace amounts of blood in urine samples for many years (I no longer worry about it), so of course my GP sent me to a urologist for a cystoscopy. OK, that's reasonable the first time around. Negative; no bladder cancer; great. Two years later, same story, trusted the judgment of both doctors (GP and urologist) and went for another cystoscopy. Negative; no bladder cancer; great. Still trace amounts of blood in urine. A year later, a different GP saw the new lab results and immediately said "cystoscopy", and of course I said "Up yours instead!" and refused. Enough is enough. Have been a non-smoker for 14 years; no bladder cancer in two recent exams; doesn't that tell anyone anything? Look for another cause, folks!

But in Ron's case, presumably it's perfectly reasonable the first time around, as it was with me. So yeah, go for it and find out what's what. But if they start recommending yearly invasions, tell 'em where to stick it.

[OpalRose]

The title of your thread speaks volumes.  I would take a very good guess that your Apnea is not well treated or controlled, and there is no way to know that since the machine you are using can give no useful data.  

Poorly treated Apnea is one reason you are waking up so much and having to urinate.  

It sounds like your urologist is running all the right tests and finding nothing wrong.  Yes, you can ask for a cathater, but that will not solve the problem.  

Your sleep docs told you to stick with Cpap, but how are they monitoring your progress?  They can only go by how you feel with a machine that is a “brick.”  

You started another thread in April inquiring on the same subject, in which you received some very good advice.
http://www.apneaboard.com/forums/Thread-...ve-Bladder

Before I was successfully treated for my Sleep Apnea, I would wake up like clockwork every 1 to 2 hours to use the bathroom.  I was in a zombie like state as I never slept more than a couple hours a night, then had to work the next day.  I lived like that for several years not knowing what was wrong.  Once on Cpap therapy, that corrected itself almost overnight.  I do understand how bad you must feel.  

I hope you find a doc that will offer the right solution for you, but you need to seriously consider getting a better machine.  There is a connection between poorly treated Apnea and being woken up to urinate so often.

[ronlecroy]

Thanks to all for the replies. I have upgraded to a ResMed S9 with data collection and the sleep doc set it up for me. For awhile it was debatable whether it was nocturia caused by apnea or disrupted sleep caused by nocturia. At this point it's definitely a bladder issue and not apnea. I barely get in bed for 30 minutes and then the cycle of needing to pee every 10 minutes starts. I have the overactive bladder during the day, but consciously can suppress the sensations. At night the strong sensations, just like light or noise, are enough to keep me awake or wake me. I'm going to beg for a night time catheter today when I have my cystoscopy, maybe ask for a powerful sleep drug. Anything to stop the torture. Devices that would allow me to stay in bed, such as the "Stadium Pal" (external cath), wouldn't really help because they still require conscious effort (i.e. pee) and I would still be awakened almost immediately as I have the urge constantly even with empty bladder. I'm trying to get set up with another urology group, but specialists are all backed up for weeks, if not months. I was on the verge of going to the ER last night as I was pacing in the front yard at 3:00AM thinking I can't take this anymore. Any suggestion for an online overactive bladder support group would be greatly appreciated. This is a surreal and hellish experience. I can't believe this is happening.

[Fats Drywaller]

Yes, you can ask for a cathater, but that will not solve the problem.  

I never said or implied that it would solve the problem. The purpose of the urine-collection bag is to make sleep, and therefore CPAP therapy, feasible. As it is, poor Ron can't get enough of either sleep or CPAP to ever improve his condition, so he's stuck. Having an old machine doesn't help, either. So, step 1: get and use a motorman's friend; step 2: get a data-capable auto-titrating machine and start using it and collecting data and asking for advice based on the data.

It seems perfectly straightforward to me, but of course that's easy for me to say.

[Fats Drywaller]

Devices that would allow me to stay in bed, such as the "Stadium Pal" (external cath), wouldn't really help because they still require conscious effort (i.e. pee) and I would still be awakened almost immediately as I have the urge constantly even with empty bladder.

I think you're being much too hasty in dismissing those devices without trying them. Haven't you ever awakened briefly for some other reason and then immediately gone back to sleep? What's wrong with waking up, peeing immediately without getting out of bed, and then immediately going back to sleep?

Also, I suspect (but have no experience with this) that once your subconscious understands that you have a bag attached, it will let you pee in your sleep. If you have the urge but nothing to pee, then so what? Do it anyway. The important thing is to stop letting it continually interrupt your sleep.

If the external condom-like attachment doesn't work for any reason, then OK, go for a catheter, despite the discomfort.

Why not try it? What have you got to lose? If it's either that or suicide, I know which one I'd choose.

This has been quoted in these forums before: Good old Al Einstein once observed that one definition of insanity is trying the same thing over & over and expecting to see different results.

If what you're doing doesn't work, try something different. Along with that, use the CPAP machine every sleeping minute. If you have difficulties doing that, overcome those difficulties in whatever ways are appropriate. And if you have to use knock-out drugs, then do that, with the assistance of one or more of your doctors.

P.S.: It'd be good to update your profile/sidebar with current exact machine & mask & pressure information.

[DaveL]

Before I was diagnosed I got up 4-5 times a night to pee.
CPAP has prevented that for me. In a normal night I get up once for that reason. I've been compliant for over 25 years.

I wish I had an autopap machine. I have an S9 Elite I bought used. It records AHI and wear time. Last night my AHI was 0.0. 8.8 hours. I'm only mentioning that because I care, and want to offer hope to you. Your machine will be very helpful. The people here are incredible. They know so much. I'm going to follow this thread to see what I learn.

[Sleeprider]

Thanks to all for the replies.  I have upgraded to a ResMed S9 with data collection and the sleep doc set it up for me.  For awhile it was debatable whether it was nocturia caused by apnea or disrupted sleep caused by nocturia.  At this point it's definitely a bladder issue and not apnea.  I barely get in bed for 30 minutes and then the cycle of needing to pee every 10 minutes starts.  I have the overactive bladder during the day, but consciously can suppress the sensations. At night the strong sensations, just like light or noise, are enough to keep me awake  or wake me.  I'm going to beg for a night time catheter today when I have my cystoscopy, maybe ask for a powerful sleep drug.  Anything to stop the torture.  Devices that would allow me to stay in bed, such as the "Stadium Pal" (external cath), wouldn't really help because they still require conscious effort (i.e. pee) and I would still be awakened almost immediately as I have the urge constantly even with empty bladder.  I'm trying to get set up with another urology group, but specialists are all backed up for weeks, if not months.  I was on the verge of going to the ER last night as I was pacing in the front yard at 3:00AM thinking I can't take this anymore.  Any suggestion for an online overactive bladder support group would be greatly appreciated.  This is a surreal and hellish experience.  I can't believe this is happening.

Ron, nice to hear you have updated your machine.  Now how do you know it's working?  What are your current settings and AHI?