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.
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MerckK
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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?
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.
I am not surprised. If this medication stops the urine, there is always a risk of urine retention which is actually worse and more painful and dangerous. I found that when I drink milk instead of water, I go less to the toilet as it takes longer to process.
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.
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.
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.
I sometimes have urinary incontinence but most of the time I don't have it. I started wondering what was causing it to happen occasionally. Just going solely on observation makes me think my situation may be connected to eating too many carbs or starchy foods at one time (potato salad, specifically). I googled the subject and found a lot of supposed connections between what we eat and incontinence or over active bladder. I haven't spent much time researching it so I don't have any conclusions. However, if you are willing to experiment with your diet, you might try googleing 'diet and urinary incontinence'. You'll get some interesting search results. (Many doctors would probably say that there is no connection between diet and urinary incontinence. However, most doctors are not taught anything about nutrition science in med school, and they think that if they don't know about it, it doesn't exist.)
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
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.
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.
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.
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.
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.
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.
Many of us buy 500 mg B1 (thiamine hcl) capsules online from Vitacost. I've also purchased Dr. Clark Store brand from Amazon. I don't notice a difference in how they affect me. I sometimes take 500 mg per day and sometimes 1 g. It depends on my symptoms. I adjust it based on how I feel.
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..
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!
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.
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
I discussed this problem with my neurologist and the urologist. Neurologist tried many clinical tests but could not find any problem so to rule out the possibility of tumor or lesion in spine , he suggested me whole spine screening MRI and the urologist advised Mira S( Mirago 50+solifinacin 5 mg) once a day. This combination of medicine has worked well and now I am little comfortable, while the problem is not fully resolved. He has advised for one month..I will update once I get my MRI done
Hello Merck. This seems to be the problem that affects me most and depresses me. I phoned my GP and she said she would refer me to an incontinence service in the borough but I am still waiting. The most helpful advice was given by a nurse at Parkinson's UK who told me to use an external catheter called Convene. I have not tried it yet. I also asked if I could have a review of my medication but the GP said I cannot stop them as I have very high blood pressure. I had a TURP procedure a few years ago as I had urine retention. I seem to have gone from this to severe incontinence and nobody is helping me.
Medication didn’t work for me in fact caused me to have my first UTI. So what I’m trying now is acupuncture/physiotherapy. It was hard for me to find someone like this who knows what they’re doing. I can’t tell you if it’s working yet
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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
Any advice? Good/bad experiences with the Neupro patch for PD? 
Update on Grapefruit Juice Experiment - Day 44
How i beat Parkinson's
