Lost control on urine: I was diagnosed with... - Cure Parkinson's

Cure Parkinson's

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Lost control on urine

MerckK profile image

I was diagnosed with Parkinson's in 2018..Age 57 and good exercise was keeping me well except tremors in whole body..I was taking much lesser dose of C/L - 0.75 mg a day with pamipraxol 3.5 mg a day against prescription of 3.75 mg of C/L a day and 1 mg of rasagiline.

Now I have lost control on urine. It keeps dribbling . The urologists prescribed medicines to calm overactive bladder but no improvement.

I am now planning to meet again my neurologist to help me. Meanwhile I request if anyone in this group faced auch problem and if yes, how it was cured.

47 Replies

Are you sure it is PD and not NPH?

MerckK profile image
MerckK in reply to JayPwP

Yes it is PD. I got my PET done twice to confirm

JayPwP profile image
JayPwP in reply to MerckK

I think kegel exercises help

Hi MerckK,

About a year ago you said: "I keep feeling that my bladder has not emptied and had to wait for few minutes to empty the bladder slowly with few drops falling in three to four instalments."

Is this the same problem, or does the dribbling now go on for a lot longer?

Jeff

jeffreyn profile image
jeffreyn in reply to jeffreyn

If you have time to do some reading, I think that this Australian website could be worth a look:

pelvicfloorfirst.org.au/

and in particular:

continence.my.salesforce.co...

MerckK profile image
MerckK in reply to jeffreyn

Thanks. I read it long back. Nothing is working.The urologist has now suggested for inj Botox but the study Shows that it is not recommended

MerckK profile image
MerckK in reply to jeffreyn

Dribbling continues for a longer period. The medicine ( siladol 8 mg and Trofame XR 60) Mirago 25 and temsulosin 0.4 ,given by two urologists completely stops the urine and the pain starts. To get the urine released, I have to take diuretics.Will consult the neurologist again.

webmd.com/vitamins/ai/ingre...

Loss of bladder control (urinary incontinence). Early research shows that taking vinpocetine for 2 weeks might reduce the number of times a person with bedwetting and urine control problems needs to urinate during the day or at night.

chartist profile image
chartist in reply to JayPwP

Jay,

That is a vinpocetine benefit I was not aware of. Thank you for posting it.

Art

I have the urinary issue, along with every possible symptom that can affect a person with this disease. It has been decided by my doctors I must have MSA. I had a cervical operation Jan. 2018, which appears to have created an autonomic dysfunction firestorm. What was to have been an operation to improve numbness and dexterity on the left side of the body became PD. Eyesight, dystonia in left foot, neuropathy through out the body, dexterity issues, speech, and probably the worse - orthostatic bp. BP readings of 180/120, dropping down to 70/ 40's or 50's common. The urinary problem began month or so after operation. Woke up to incontinence one night. Then issue of having to pee every 10 minutes during the day, and up every hour at night., My urologist prescribed Myrbetriq, and Vesicare. It helped to a point, until 4:00 PM when I have to begin visiting the bathroom. The problem of not being able to go is severe , so I have been self cathetering for past 2 years. I have had 2 Botox sessions. They have helped. One of the few treatments, or medications that have.

As I finish up, I realize , like many of our neuros, I don't have much to offer in way of relief. But I do empathize regarding standing for long periods of time over the toilet for just dripping, begging not to go by way of catheter. Best wishes on a treatment.

Resano profile image
Resano in reply to barnwill

Hypercalcemia, nephrocalcinosis in relation to vitamin K2 deficiency (D3 cofactor) ? Vitamin D problems are most of the time overlooked by doctors, even after the onset of PD.

hormonesmatter.com/vitamin-...

JamesG profile image
JamesG in reply to barnwill

I used Myrbetriq for about a year now. Works like a charm with no side effects.

Hi. My urologist suggested getting a permanent supapubic catheter put in. It goes directly in just above public line and then straight into bladder. Sounds drastic I know but I haven't found it hard and wouldn't go back. I don't need a bag during the day as it has a valve which is very easy to use in the toilet. Bag at night which is fine. Don't ever have to get up in night anymore. Worth you asking about. Only down side is the catheter needs changing every 6 - 7 weeks. Not painful just bit uncomfortable but done in minuets. Hope this helps

MerckK profile image
MerckK in reply to 20fatcats

My urologist suggested for Botox injection and if they don't work, then will proceed as explained by you.Let's see.

Thanks

Amazin profile image
Amazin in reply to MerckK

Mine also suggested Botox. Anyone tried this? Good or bad?

I found that yoga exercises especially helped - and gave up coffee 👍

MerckK profile image
MerckK in reply to Cbas

Which yogasana? I do many

I was having trickle pee 4 or 5 times a night and then came across Pygeum extract and Beta Sisterol. They have both helped immensely and I now only pee once a night.

MerckK profile image
MerckK in reply to Getz

Thanks. Will try

Dr Antonio constantini prescribes high dose thiamine hcl treatment vitamin b1Take a look on google certainly helped me

MerckK profile image
MerckK in reply to Chriscrozer

Sure. Thanks

Autonomic dysfunction can be traced back to hypothalamus injury from anesthesia, in your case or other environmental toxins. Treating symptoms instead of the cause will keep you on the hamster wheel. I don't have all the answers myself, maybe the collective wisdom on this forum could weigh in 😊 I did find that chromium picolinate helps.

SE

MerckK profile image
MerckK in reply to SilentEchoes

Let me study this

I have had problems with urinary urgency for many years. Recently I started taking Vitamin B1 and I have seen a great improvement. Found this article that seems to support this.

objectivenutrients.com/insi...

MerckK profile image
MerckK in reply to Querkle

Thanks

Do you take high dose thiamine HCL (B1)? B1 completely resolved my urinary urge incontinence. I realize that's not the same as the condition you're experiencing, but if you're not already taking it, it might be worth trying. It's simple and inexpensive.

MerckK profile image
MerckK in reply to 1LittleWillow

Thanks. Will try

What's your dosage of HDL per day?

It fluctuates between 500mg and 1g per day, depending on how I feel.

So either amount works for incontinence? Thanks.

For ME, yes. Others need smaller or larger doses, and the results are different for each person. Just because it works for me doesn't mean it will work for everyone else, but IMO it's worth trying.

Thanks Willow for answering my questions. How long did you have incontinence before HDL and how long did it take to figure out the right dose?

What I have is "urge incontinence." It started occurring sometime in 2018 (along with all of my other symptoms). It was happening occasionally at the time of my diagnosis (August of 2018), and got worse over time. I began taking B1 in November of 2018, and the urge incontinence resolved over the next few months. I would have to look at my notes to see exactly how long it took, and I don't have time to do that at the moment. I was lucky... I started with 500 mg per day and moved up to 1 gram per day after a few months, and that was just right for me. It worked well for an entire year, and then I had to begin tweaking my dose up and down a bit based on my symptoms.

MerckK profile image
MerckK in reply to 1LittleWillow

Maximum of the members of this group got benefited by B1 and therefore I will go with the majority. However, will also consult my neurologist.. Thanks

👍

See YouTube by Dr Berg for bladder issues. Bladder remedy. Varuna (ancient remedy). youtu.be/SUPlWpf6vY4

TAMSULOSIN .4MG

I try to wait out to empty my bladder. Sometimes I dribble, sometimes I win.

MerckK profile image
MerckK in reply to Jaygee1

I have used this but no improvement

Jaygee1 profile image
Jaygee1 in reply to MerckK

Try 2x 1 Dose AM - 1 dose PM

I have strong urges to go and need to make sure i always pee before i leave the house- if I get stuck in rush hour traffic it gets frantic.. The doc said it's an OAB- Overactive Bladder.. basically I need to retrain by not letting it loose so often- yes the pelvic exercises are good- but just really try to work ur way up to holding bit more every day...NOT easy..but it's getting bit better..I also find leaks every now and then- and was thinking about briefs - but I don't want to go that route... There's lots of info on YouTube about it... the doc said that the pd probably plays a role in it too but he was quite certain about the OAB. I recommend u check it out if u haven't already.. also coffee in the morning make me go Big Time..

LindaP50 profile image
LindaP50 in reply to gginto

For long car rides you may want to try Best Fit for Men. Nice medium gray. Almost look like regular underwear. My husband wears them when we are going for a long ride in case there are no restrooms available. The tear off!

depend.com/en-us/incontinen...

MerckK profile image
MerckK in reply to LindaP50

I was trying to avoid such situation but let me first try the measures suggested to my problem

LindaP50 profile image
LindaP50 in reply to MerckK

Understood. Wanted to let you know they now make ones that look like regular ones. 🙂

pd at 33 im 53 now....incontinence issues just part of progressing pd...i do not take meds for it i use underwear liners etc. i wont add yet another med. hang tough

I highly recommend D-mannose. It’s OTC. My elderly Dad with Pd has improved since using it. It’s meant for UTI but in our experience it reduces incontinence in general. Thiamine HC1 helps as well.

MerckK profile image
MerckK in reply to

Thanks

I have the same problem and it keeps me from exercising because of my incontinency :( I have not found any help.My urologist fitted me for a pessary and it was to hard to get it out to clean it so i have it taken out

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