Old 03-13-2018, 01:13 PM #1 (permalink)
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Default Nocturia

I am just wondering if anyone else suffers from this. At my last clinic visit i did bring up to the nurse that i often don't make it to the bathroom in time during the day. It seems i get the sensation that I need to go and then thats it I go. She didn't think it was an ALS thing, other than it takes longer to get to the bathroom. She thought maybe it could be 51 year old woman issue.

Fast forward 2 months and I wake up every morning with a soaking depends I use a pad as well. I feel like i am starting to dehydrate myself during the day so i wont need to go so much at night.

i did a google search and came up with Nocturia - frequent urination in the evening. Does anyone else suffer from this and possibly have any tips on dealing with it ?

Thank you, as always, for any help
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Old 03-13-2018, 03:02 PM #2 (permalink)
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Default Re: Nocturia

Your description doesn't sound like nocturia, you have issues around the clock.

It is common with ALS and it is common in women aging if their pelvic floor muscles are poor as this impacts your ability to hold on so to speak.

Please don't dehydrate yourself, that's a common thing PALS do as well and will cause far more issues than waking with a wet depends will cause.

Do you have a female urinal? That may help as you can avoid having to get up and move to a toilet or commode? A catheter is the last resort as it brings other risks of infections etc but it is an option and a suprapubic catheter is the better option for infection prevention.
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Old 03-13-2018, 03:19 PM #3 (permalink)
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Default Re: Nocturia

Joanne,

There are drugs for urinary incontinence -- ALS can sometimes affect those muscles. Ask your doc. It would be better to use a drug if you need it and stay hydrated, than to limit your fluids.

Depending on where/when you need to go, would also consider a regular style urinal, or a female UriBag, that you can use in bed, in a wheelchair, etc.

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Old 03-14-2018, 12:43 AM #4 (permalink)
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Default Re: Nocturia

The drug I was prescribed for urge incontinence is Myrbetric. I don't use it anymore because it can't be crushed to go into a feeding tube. But if you can take drugs orally it works wonders. The other thing is after 50, never pass a bathroom and never trust a fart.
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Old 03-14-2018, 01:35 AM #5 (permalink)
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Default Re: Nocturia

Vincent/Joanne,

Myrbetic only comes in extended release form so can't be crushed. But 2 older tablets in the same class are taken twice a day, so they can be, and are available as generics. These are oxybutynin (Ditropan) and tolterodine (Detrol). (These also come in extended release versions, so you have to ask for the "regular" "twice daily" ones.)

There is a third one that probably could be crushed, but it's newer and it's usually a better idea when possible to use older drugs whose PK is well-established, in tubes.

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Old 03-14-2018, 03:48 PM #6 (permalink)
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Default Re: Nocturia

I have clinic appointment in Stony Brook tomorrow and will ask about this med and look into getting a urinal(had no idea there was one for woman, wish I knew about the back in college?)

Thank you
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Old 03-19-2018, 03:08 PM #7 (permalink)
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Default Re: Nocturia

So, neurologist did not feel that this was an issue and did not prescribe anything for me during visit. They suggested I call primary - did that in the car on the way back home. The PA was able to see me and very reluctantly prescribed oxybutynin and we gave us script to followup with urologist. So crossing my fingers that this will help me.
I can say that spending so much time out of the house - getting in and out of the chair totally wore me out. I was totally exhausted on Thursday when we finally got home after 4pm. I needed to send my husband back to the dr with a urine sample could not get up to do it in the handicap(not really) bathroom at the dr office.

I will just have to wait and see.
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Old 03-19-2018, 06:05 PM #8 (permalink)
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Default Re: Nocturia

Wait, see and recuperate from that ordeal. Best of luck with the new drug.
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Old 03-19-2018, 06:26 PM #9 (permalink)
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Default Re: Nocturia

A bit off topic but we have a doctor who will do e-visits. He will prescribe meds. It might be something to look at in the future.

I'm surprised that your neuro wouldn't prescribe the drug.
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Old 03-20-2018, 12:04 PM #10 (permalink)
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Default Re: Nocturia

We had similar issues and he got a suprapubic put in same time as his PEG. Probably one of the best things he's had done. Saved energy, discomfort, and lots of time.

He did start to have "leaks" again a couple months back, and was put on Oxybutynin as they believed it was spasms. He has since stopped the meds because of how extremely it dried his mouth out. Going to ask for an alternative to try when we meet with Uro again in a week.
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Old 03-20-2018, 12:54 PM #11 (permalink)
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Default Re: Nocturia

Suprapubic catheters are wonderfully convenient but present a huge risk for UTIs. At the very least, they become chronically colonized with bacteria. Some docs will go so far as to prescribe a low dose long-term antibiotic to suppress infection. Just an FYI.

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Old 03-20-2018, 08:01 PM #12 (permalink)
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Default Re: Nocturia

Yes, the UTI risk is an issue. He had one for the first couple months and is considered "chronic" by the urologist (MRSA). Requires a bit more attention and monitoring on our part. We asked about low dose long-term antibiotics, but were told tests will always show the bacteria so they hold off antibiotics now for him unless he has fever or blood detected. Fingers crossed, no antibiotics used in the past 4 months with flushing and similar keeping things at bay.
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Old 03-21-2018, 11:17 AM #13 (permalink)
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Default Re: Nocturia

scheduled to see the urologist in april - she mentioned botox shot to the bladder?? will discuss the catheter
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