Out of nowhere, starting last night at bedtime, my husband started needing to urinate multiple times an hour! Like 2-3 times EVERY hour, sometimes almost too urgent to make it. So he's been up for more than 36 hours, it continued during the day. We called the neurologist to ask if this was a CBD/Parkinson's thing, but he thought not, coming on so suddenly. So my husband went to urgent care, and was put on Cipro, a really strong antibiotic, which seems to be helping. He's never had a UTI before, and the urine test did not show anything, though they sent it out for the longer test.
I read through all the old posts I could find on this board and the Parkinson's--and I find it hard to believe it's not from the Parkinson's/CBD side of things. The only differences in my husband's week is the reduction of the trial levodopa dose, and his starting the Parkinson's gym workout.
Any advice? This kind of symptom is a game-changer.
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LostinHeadSpace
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My hubby had a "Woolworths bladder" a long time before other symptoms of CBD, just at night when he would get up 4-5 times and pee small a amount each time. He never had a bladder or kidney infection.
I wonder if this might be due to a kidney/bladder infection, or whether it may be the autonomic system falling short in the brain. My hubby had times when he had an unexplained temp, or his BP was haywire. Wonder if the bladder control fits in here too.
Pleased you marched him off to hospital - my guy wouldn't budge while BP dangerously high. They have covered the infection side with the strong antibiotic. Guess they will also be monitoring input/output too. If not, would suggest they should be as your love will not fare well if dehydrated as well. Hope it all settles down.
However, I would be inclined to monitor your love carefully once you get him home. See if he improves, and note anything else that seems different. I kept a daily diary of BP, heart rate, etc as no one else was! It seemed important at the time and the GP found it helpful as he was only seeing him 3-monthly, and I have a poor short term memory when a lot is going on.
If all else fails to give a sensible answer, can I suggest you and your hubby look at convenes as a solution. You might both then get a night's rest They are a bit like a condom with a tube outlet to a bag. You would probably need a carer to put it on but they don't seem that difficult - just embarrassing and personal! However I never tried to do this! Take him a bit of time to get used to as well, but may be better than 'fluffy undies'!
At worst, he may be losing his ability to hold on to urine and may find this is the next step. If that happens, he will find that most distressing and will need lots of support and love from you. Try and add some light-heartedness to his life while you both learn how to cope with any next step.
My experience showed the doctors at the coalface in my hospital have little idea of this disease. My thoughts are with you both. Hope I have it completely wrong and it is just an infection, but I have watched CBD and know it can kick out of left field!
I wonder can he pass urine each time or does he sometimes have the urge to go and not be able too. Depending on his age an enlarged prostate may be a contributory factor.
My husband who has PSP has major problems with frequency and urgency and takes 3 water work tablets which help all prescribed by the Neuro urologist.
We have found changes happen very quickly and I never find a cause. So far he has not had a UTI despite maintaining a significant volume of iurine in his bladder at all times.
Hope it settles a little but if it doesn’t there are meds to help. It is absolutely exhausting for you in the interim though.
Steve was up every few minutes at night as well. Sometimes, I hadn't even got back into bed, before he needed to go again. Definitely a PSP symptom. Unfortunately not one recognised by the professionals, like all the rest, they know nothing about!!! You were right to get it checked out though.
I did get Steve a urinal bottle, that saved the endless trips to the toilet, until pads and catheters came into our lives.
LostINheadspace, I agree with both Heady and Satt2015. My son was attacked by many HORRIBLE SYMPTOMS but never had a UTI, although his hospital stay for his 2nd bout of aspiration pneumonia also listed sepsis.
The abundance of urine at night visited my son when he was still fairly well. We did not live together and he was still getting along living by himself. I would come directly from my morning walk (finished by 8AM) to check on him. He told me of being up all night running to the bathroom. We went to URGENT CARE no UTI or cause, but they gave him a urinal bottle. When I saw that each morning he was filling it up and still had to get out of bed I ordered 2 more from Amazon. My son would fill 2 and a half bottles. I think it only went on for less than a month or a little past.
Looking back, and he not being DX with PSP until three years after his PD
dX, it would have been IMMENSELY helpful for an earlier DX which would have led me to this site. For three years I was reading the PD site.
Maybe some future date more will be known of PSP, a listing of possible symptoms (so as not to be sooooooooooooo alarmed when they do or do not appear).
Thank you for all the kind replies. The antibiotics seem to have worked--what an episode; he literally couldn't even close his eyes to sleep before he had to go again.
You guys are so amazing. How is it possible that all the collective knowledge is here, and the doctors don't know?
Hello, reading your post reminded me of something I had forgotten about....before my mom was ever dx and actually probily 6 mo. -1 yr before I even realized there was something going on with my mom, I happened to see she had over the counter pills for active bladder!! ( Her being only 67 or so) later on when I did take her to a dr about other issues she was having and he was asking her different questions and that's when I realized she had been having very frequent urination for quite sometime but was treating it herself with over the counter medications, that were working for her, that dr. Told her that was fine and continue if it's working . But she no longer uses it, doesn't need to, I think it was just the psp!! this evil disease must have gotten bored with that and moved on to mess with another part of my moms body for the time being anyways! She is fortunate at the moment to still have control over that part, but that is about all she has control of, but we will take it!! That's our experience anyway, I hope it may help you in some way!
It never occurred to me that over the counter pills existed for this. But this was so sudden and strange, he clearly had to see a doctor. He's only 54, so we aren't ready for any of this. I'm relieved (no pun intended!) that for some people this stage didn't last long.
My hubby has/had same symptoms (at least 5 times/night - not as bad as yours! - but really never had much urine to discharge) and I agree with all above. We did antibiotics course but no UTI or other infection. Tried the hand-held urinal but he is too shaky and uncoordinated at night.
The thing that's working best so far is Myrbetriq - an overactive bladder med (like Allie says above). He still feels he's "holding it in" but at least is getting to trust that he really doesn't have much urine in there. A blessed night is only 1-2 "get ups"!!
That's a great tip about the Myrbetriq, because that's not an anticholinergic. Most bladder meds are anticholinergics, and there was just a slew of news articles about how anticholinergics can cause dementia. (That's all we need, is one cure setting off the next crisis, right?)
My husband's progression of disease is faster than any other one of our neurologist has ever seen. He was getting up for the bathroom one time a night, and then it worked its way up to five times a night over the course of a month or two, until he was put on the massive doses of levodopa for the trial, when it was back to once a night.
It was three days after they cut the levodopa dose that this "cascade" happened. Hopefully it was just an infection that has passed. I'm so nervous about the progression of the disease. Since all of you have dealt with these issues, I believe you over the doctor that it's related to the CBD.
My mother-in-law is constantly wanting to go to the toilet. As soon as she's been she wants to go again. Ends up screaming the place down if she doesn't get taken. This is when she had the most falls as she was constantly trying to get up from her chair/wheelchair/bed. Several trips to A&E as a result. Lots of tests done for urine infections. None found. It was an exhausting time.
Sadly the illness is progressing quite rapidly. She still wants to go quite frequently but there is less shouting. So I would say this is a definite symptom of PSP, but not a massively common one.
I feel for all the carers experiencing this at the moment. It really is physically and emotionally draining. But I feel for our loved ones with PSP going through this too. Not fair.
We used Oxybutinol for my husband's symptoms. It's meant to treat an overactive bladder. In the US, it's available over the counter (you pay) or by prescription (insurance pays, hopefully!). It's usually found in the "women's" health section of the pharmacy where the Midol, Vagisil, etc. are located. Hope this helps.
I looked at the over-the-counter bladder medicines, and some are labeled for women and some for men or women. I wonder how much these distinctions matter?
My husband's urologist made no distinction between them. I didn't find any for men at the time. We just used women's. We used it mostly for urgency because he moved so slowly that he couldn't make it to the bathroom in time.
My husband started using an herbal supplement called SagaPro a couple of months ago. He said he doesn't have to urinate so many times a night (down from 4-5 to 1-2) and when he does, he is able to fully empty his bladder. At least so far, he said he would recommend it. Prior to SagaPro, to prevent a UTI, he was taking a d-mannose supplement called UTIslip by wellness Partners. It was recommended by his urologist who also said do not get one from China. And also, he tries to only have enough liquid in the evening to have his pills and to just sip liquids, which is better for hydration.
Why not try wearing a Mcguire urinal? I find it very comfortable, secure (no leaks) and quite comforting. Able to sleep through the night with it, using either a leg bag or a bed bag. Two companies in the US make them -- Urocare and Duromed. Reusable for a long time. Easily cleaned and I even use it for travel, often wearing it for up to 72 hours straight.
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Urination frequency/urge drug? 
Frequently falling face down
Every exhale is a moan.
Urine infection
