"Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

PatJ

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Canada
Mirabegron might be worth a try. My Dr suggested it and it has made a huge difference. Hope you can get it where you are.
https://en.wikipedia.org/wiki/Mirabegron

According to Wikipedia it may also elevate blood pressure which could be useful for those of us with OI due to low BP (although it also elevates heart rate). It has some potentially serious side effects but in the lower percent range (1-10%).
 

maddietod

Senior Member
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2,902
Lakesarecool, with my most recent episode I had just had a coffee half an hour before! I have read something about coffee and alcohol aggravating it. I have felt for years that coffee was upsetting my gut but when I had a test coffee came up fine. I think I will forgo coffee now. I am happy this has helped you and hope it will do the same for me. I don't have much anyway, but like you I do love it every now and again.

I think the only test for a coffee-urinary frequency problem is to drink coffee and see what happens! I have trouble with coffee AND tea, but no problems if I avoid them. You might want to talk with your doctor about the increased thirst.
 

Oberon

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214
I think the only test for a coffee-urinary frequency problem is to drink coffee and see what happens! I have trouble with coffee AND tea, but no problems if I avoid them. You might want to talk with your doctor about the increased thirst.

I completely agree. Based on my experience food sensitivity testing isn't even remotely accurate, but I am a mere case study.

I hope this does end up helping, and let us know how it goes.
 
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Alabama US
The herbal world… something you might try. “Mullein Root Tincture”, it’s safe for long term use. It is commonly used for incontinence with the elderly and new mothers.

Several parts of the mullein plant are used (Verbascum thapsus). Only mullein root is used for incontinence, not the blooms or the other parts. I checked the net, found bloom and whole plant tinctures.

Where you’d find it in Australia I’ve no clue. I know 3 people I could buy it from in my area, drive to their house and pick it up. In fact I just bought some for my 82 year old dad.

Henriette Kress explained to me there is one bladder muscle that isn’t voluntary. This is the muscle that is toned by mullein root. She suggested kegel exercises as well.
 

Sea

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NSW Australia
Hi All,

Urge incontinance has become a huge problem for me. I think I now need to carry a whole new set of clothes in a backpack when I go shopping or anywhere. I have had a problem for about 4 years but since I have become extremely thirsty over past 6 months the result is a flood ( sorry if this offends anyone, but I am desperate). It is soooo humiliating and I hate that I am writing this but I need to know if anyone has the same thing and has any advice. I already frequent the bathroom hourly or more so as to limit the damage. Please, any ideas would be very appreciated

Hotch
What exactly do you mean by urge incontinence? If your experience is at all like mine then some bladder training may be helpful.

Several years ago I had reached a point where I had to rush for the bathroom when I stood up and if my pants button was difficult or I had to wait in line I had some incontinence. I discovered when I was out that I was fine to walk to a toilet a couple of minutes away but the incontinence happened while I was locking the toilet door. It led to a sense of urgency and developing a habit of rushing to close the door, undress and sit down. I knew it wasn't just a matter of not holding a full bladder because I would also have been fine to walk longer to the toilet. It was my body getting the message to let go before I was ready as well as an inability to hold it back once that let go response had started.

Once I realised that I worked on not rushing to the toilet, continually telling myself "you're not there yet, you're still walking" while closing the door in a deliberately slow manner, progressing to undressing in an unhurried manner and counting to 5 once I sat down before I allowed myself to say "ok, you're there now, you can relax."

It made a huge difference very quickly and I no longer have that issue. I probably still couldn't hold back the flow once it starts, but that's a different issue to the signalling one
 

Hip

Senior Member
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18,147
What exactly do you mean by urge incontinence?

I think he means overactive bladder, also known as:

Overactive bladder syndrome
Irritable bladder
Irritable bladder syndrome
Urinary urgency

In the CCC, irritable bladder syndrome is listed as one of the comorbid conditions of ME/CFS.

Autonomic dysfunction has been implicated in overactive bladder (refs: 1, 2, 3) , and I would not be surprised if future research finds overactive bladder associated with autoantibodies that that target the muscarinic or adrenergic receptors of the autonomic nervous system, as has been found in other autonomic diseases such as POTS and orthostatic hypotension.

Autoantibodies to the muscarinic M3 receptor have been suggested as a possible cause for the related condition of interstitial cystitis. The M3 receptor is located on the detrusor muscle cells of the bladder, and this receptor mediates the muscular contractions of the bladder.

Autonomic dysfunction could help explain why there are strong nervous contractions of the bladder detrusor muscle, which try to force the urine out.



I tried my own "bladder training" psychological approaches to try to combat the intense bladder detrusor muscle contractions and urgency to urinate that can suddenly appear, such as meditative deep breathing to try to relax, and I found it helps a bit, but only slightly.

But for me, the overriding factor was the strong involuntary contractions of the bladder muscle (called bladder spasms), which create pulses of pressure in the bladder that attempt to push the urine out.
 
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wonderoushope

Senior Member
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247
I went to a gynecologist who i think was pretty useless, she said I had an overactive bladder or internal cystitis and to go to a physio and get bladder training.

I go through periods of this mainly when my stomach is playing up. Also wine is a huge one for me. If I have white wine I'll go to the toilet every 5 min for the whole night, which says to me my frequency comes about from my stomach being aggravated.

I can hold on, the problem is I will go to toilet but a minute later I will need to again and can repeat this every few minutes. Luckily I only get this in bouts every month or so or if I have wine.
 

Dechi

Senior Member
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1,454
My doctor suggested I add salt to my drinking water to diminish the frequency to which I urinate. I did that and I still peed as much and I gained 4 pounds while eating just the right amount of calories ! No more salt for me...
 

Paralee

Senior Member
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571
Location
USA
I have B6 toxicity and have problems with holding until I can find a restroom...or make it to mine. Sometimes I don't make it. I have read B6 toxicity does something with your muscles that lets this happen.

This is something I read, please DYODD, but it seems to fit my situation.
 

Hotch

Hotch
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Location
Sydney nosw Australia
Sorry I have taken so long to reply. The silly season took its toll on me. I hope you all managed to enjoy some of the holidays.

Thanks everyone, helped a lot! Problem significantly improved. From what I have read, another name for the sphincter having a mind of its own is Neurogenic Bladder. It can happen in any disorders of the Central Nervous System. Since coffee (and tea) are central nervous system stimulants they aggravate it. The last 2 times I had coffee I had big problems. However, since quitting coffee I have been able to make it to the bathroom in time! Woohoo!!! (I still always make sure I know where the loo is so I can get there fast if need be). It sounds like this is what you were talking about Iansbergen and hip. Like you hip I have tried the relaxing and muscle strengthening exercises but they didn't stop it.



Busybee and patj. If prob returns will investigate Mirabegron. Thankyou.

Lakes are cool and maddietod. Yes you helped heaps. So appreciated.

Monarda. I love herbs too. I Go natural whenever possible. If I find it comes back at some stage I will give your suggestion a go.

Sea. What I mean by Urge Incontinence is that i get the urge but do not have enough time to make it to the toilet. As inability to control the sphincter

Wonderoushope. I have done the exercises over the course of the 4 years but it didn't seem to correlate with much improvement. I don't know if this could help you. At the first sign of urine frequency or irritation, my daughter, Mum, sister in law and me take "D Mannose". It works brilliantly for "e- coli" germ which Causes 85% of UTIs (dif E. coli to food poisoning). Unfortunately if someone's is caused by other germ, it won't work. It is natural and is phenomenal. Good effects are felt within half an hour. My daughter and sister in law had both had a bad history with almost constant U.T.Is and kidney infections. No more since having D Mannose in cupboard. I get it from iherb, now brand. I know yours is not UTI but thought I'd mention it anyway. You never know! I hope you find something that works for you.

Here's hoping
 

PatJ

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Canada
Increasing methylfolate from 800mcg/day to 2400mcg/day has helped me to reduce urinary frequency and has reduced the urgency somewhat as well. I still go every 1 - 1.5 hours during the day but it's a welcome improvement. Electrolytes help to reduce the frequency as well.
 
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86
Hi, I get this and am under a consultant because of it. I believe it is linked to the muscular weakness I experience with m.e, but neither my GP or consultant have much understanding of m.e and see it as mainly tiredness so they don't connect it. I need to urinate frequently and can't hold it for long at all. I also experience stress incontinence when I'm feeling worse m.e wise.
 

Hotch

Hotch
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Location
Sydney nosw Australia
Hi Lissyleigh, I used to have urinary frequency for years. I would be up 4-7 times a night and very frequently during the day, sometimes not making it to the bathroom. I too believe it was worse at times when I was weaker. I no longer have much of that problem anymore. yay! Maybe, as jennytipsforme and PatJ have mentioned, all the vits, salt and minerals I take have helped that. But this problem is very different. It is like a switch is turned on and complete emptying occurs all at once, sometimes before I can get to the bathroom. It only happens every now and then thank goodness. It has been so humiliating when it has happened out in public (in middle of DJs etc). There is no hiding it.

Thank you jennytipsforme and PatJ. I have been put on so many supplements that sometimes I wonder which ones are Really necessary. Sounds like the electrolyte ones are doing some good
 

ahmo

Senior Member
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4,805
Location
Northcoast NSW, Australia
@Hotch Just came across this thread. My bladder urgency, now past, seems to have been due to mast cell issues.
[
http://www.medicinova.com/html/research_interstitialcystitis.html

Interstitial cystitis (IC) is a chronic sterile disease of the bladder characterized by urinary frequency, urgency, nocturia (night-time urination) and pelvic and bladder pain. The most common theories to explain the pathophysiological changes in IC are an altered bladder lining (defective glycosaminoglycan layer) and an increased number of activated bladder mast cells.

Symptoms vary between patients and may vary between episodes in the same patient. The average patient has symptoms for 5 years and visits multiple clinicians before a diagnosis of IC is made. Patients may have extended periods of remission; IC is not a progressive disease.

Sufferers of IC can experience any combination of the main symptoms of the condition, and no two people may have the same combination or severity of symptoms. IC patients are more prone to suffer from other medical conditions than would be expected in the general population.
/QUOTE]
http://forums.phoenixrising.me/index.php?threads/me-cfs-is-a-mast-cell-disorder-hypothesis.18437/

https://mastcellblog.wordpress.com/2013/11/12/canary/

mastcellmaster.com
 

Hotch

Hotch
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43
Location
Sydney nosw Australia
Hi Ahmo,

Thanks for that. A very interesting read. My problems have also now passed (thank goodness!) . Since I began going to a chiropractor who works on freeing the signals of the nervous system I have really improved. From the very first day I had improvement. Still have a long way to go but I am floored by the impact this has had on me.
 

frozenborderline

Senior Member
Messages
4,405
I very suddenly developed urinary urgency (aka: overactive bladder, overactive bladder syndrome, or irritable bladder) almost overnight, one or two weeks after starting a sexual relationship with a new girlfriend, decades ago. I strongly suspect this was due to picking up some type of pathogen through sex that entered the bladder via the urethra, which created a long term (possibly intracellular) infection of the bladder lining or the bladder nerve supply.

I'd never had these bladder problems previously; in fact I had a rather iron bladder, that could last most of the day without going to the toilet. But almost overnight I suddenly found myself with this urinary urgency condition, which arises from nervous spasms of the bladder muscle (detrusor muscle). The fact that this happened to me almost overnight needs an explanation: some factor must explain this sudden change of status, and an infectious agent is my guess.

A related condition is interstitial cystitis (IC), which is similar to overactive bladder, but IC can also involve excruciating bladder pain as well as urgency of urination. IC has been linked to a Gram-negative bacterial infection of the bladder tissue, and I suspect overactive bladder will in the future also be found to be linked to chronic low level infection.



Overactive bladder is not to be confused with polyuria. Overactive bladder is where there are almost uncontrollable nervous contractions of the bladder muscle, which create great pressure, and force you to find a toilet pretty fast, else you fear you may wet your pants (and I found this sometimes happens if you cannot get to a toilet in time, but fortunately in my case only very rarely). These nervous contractions of the bladder can occur even if the bladder is only say one third full, so it is not much to do with how full your bladder is.

Polyuria by contrast is where the throughput of liquids in the body is much faster: your kidneys are always dumping water into your bladder, so you find you have to visit the toilet a lot more.



In terms of treatments of overactive bladder and interstitial cystitis, restoring the glycosaminoglycan layer (GAG layer) in the bladder can improve or cure the symptoms of overactive bladder or interstitial cystitis. The GAG layer is a protective mucous membrane lining that covers the bladder. Refs: 1 2 3

Gepan and Uracyst are products that can repair the GAG layer in cases of overactive bladder and interstitial cystitis. They contain a sterile solution of chondroitin sulphate which is instilled into the empty bladder. Some other similar products are detailed here. Some contain hyaluronic acid as well as chondroitin sulphate.

Apparently you can administer Gepan yourself at home if you prefer; see here.

You can also take a combination of chondroitin sulphate and glucosamine sulphate (or N-acetyl-glucosamine) supplements orally to help repair the GAG layer, but I am not sure how this compares in efficacy to products like Gepan and Uracyst that you squirt into your empty bladder via the urethra.

The oral drug pentosan polysulfate (Elmiron) is thought to work by restoring a damaged GAG layer. Ref: 1

Other oral drug treatments for overactive bladder include:

Darifenacin, oxybutynin, solifenacin, tolterodine and trospium. These all work by blocking one or more of the muscarinic acetylcholine receptors, such as the M3 receptor that is mainly responsible for bladder muscle contractions. People with glaucoma, urinary retention, or gastrointestinal disease should avoid using these anticholinergic drugs.

Mirabegron is a adrenergic beta 3 receptor drug that work by activating a receptor in the bladder muscles that relaxes the muscle.

Imipramine (a tricyclic antidepressant drug) also relaxes bladder muscles.

Botox injections can be used to treat overactive bladder.



Effective herbal treatments for overactive bladder include: pumpkin seed oil, and gosha-jinki-gan. Refs: 1 2
If one has bladder issues and doesn't want go risk hair loss like elmiron can cause, what are some of the other drugs and procedures you'd recommend most? Mine is most worsened by ketamine. But I have issues even after stopping ketamine. Ketamine is a staple pain meds for me so its concerning to have bladder problems with it and worth trying to fix them
 
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