Stopped Taking My Incontinence Medication

Leio

Est. Contributor
Messages
412
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Little, Incontinent, Other
I know that stopping a medication without talking to the doctor first isn't advisable. The medication was giving me an intolerable amount of dry mouth... the dry mouth was so bad that it was giving me a very bad sore throat.

I just couldn't handle it. The medication wasn't helping my overactive bladder at all. I honestly don't know whether I could handle another overactive bladder medication. It seems like all medications designed to treat the condition have the same kinds of side effects.

I just feel like I don't know where to turn and what I should do now...
 

Fireband

The musician of many genres
Est. Contributor
Messages
173
Role
Diaper Lover, Little, Incontinent, Carer
I feel you...truly I do. My medication for overactive bladder and IC is causing my hands to shake uncontrollably at random moments.
I am a musician, and I have had to cancel 3 shows because of my hands. I'm in a real tight spot. I also feel you when you say you feel like you have nowhere else to turn. I want to leave home but I don't have the money and I can't afford the numerous other meds I need. I also don't know what to do.

If you ever need someone to talk to I'm here. If you need anything from me, ask and I'll see what I can do.
 

dogboy

Est. Contributor
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18,964
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Adult Baby, Diaper Lover
Though I don't suffer with incontinence, over the years on this site, I've read of many IC members who have complained about the same side effects. Most have also commented that the meds either weren't helping that much or weren't helping at all. I'm sure you'll hear from other IC members in a few minutes.

A lot of different medications have annoying side effects. Some blood pressure medications can cause an annoying, constant cough and decreased sexual libido. I'm sorry your meds have effected you so adversely. I'm sure you were looking for much better results.
 

ieyasu

Est. Contributor
Messages
75
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Adult Baby, Diaper Lover
Tell your urologist about the side effects. Weigh out your options. A good urologist will listen to your opinion. Mine did. In fact, his opinion was to try some medicine and only continue it if I thought it was helping enough.
 

Rob110

Est. Contributor
Messages
960
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Incontinent
Hi Leio

Sorry to hear your having side effects from your meds, talk to your urologist about different options for meds or take the route a lot of us who decided to simply where premium taped diapers (24/7) to manage our iC issues. I have no regrets deciding to skip the meds that do not work 100% of the time especially after my boss started on a med thats in the same family of incontinece meds he is experiencing memory and consentrstion problems, his doctor wants him to remain on it even though he is displaying some of the more serious side effects.

I know diapers are not the preferred option but they work, hope you can find a solution thst works for you with out creating any other issues.
 

Missy1

Est. Contributor
Messages
362
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Adult Baby, Sissy, Little, Incontinent
Im sorry the meds dident work Leio dear :( , as the others have sed you really need to talk to the Urologist about this dear . I compleatly understand youre desition. and like Rob this is one of the reason i chose to accept wearing taped diapers and al the rest for the rest of my life. And DONT accept any meds.
 
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Bellybag58

Diaper Up!
Est. Contributor
Messages
96
Age
60
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Diaper Lover, Incontinent
If the meds aren't working and you have intolerable side affects from them, STOP IMMEDIATELY regardless of what a doctor would say. Stop the meds and THEN talk to the doctor. In the mean time if you have to wear diapers then so be it. Weigh the cost of the diapers against the cost to your health. Sorry but they can shove meds down your throat or they can find another way to resolve the problem. My doctor wanted me to take meds to help empty my bladder so I didn't go as often with urge incontinence but I'm not one to take more meds. Sometime you just have to listen to yourself and take a practical and reasonable approach.
 

ST50

Est. Contributor
Messages
1,316
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Diaper Lover, Incontinent
I stopped taking my incontinene meds too. They were doing litlte to curb my nightly bedwetting and gave me sight problems. To be honest I would rather wet the bed than have any sight issues.
 

Slomo

Est. Contributor
Messages
7,252
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Adult Baby, Diaper Lover, Incontinent
If the meds aren't working and you have intolerable side affects from them, STOP IMMEDIATELY regardless of what a doctor would say. Stop the meds and THEN talk to the doctor. In the mean time if you have to wear diapers then so be it. Weigh the cost of the diapers against the cost to your health. Sorry but they can shove meds down your throat or they can find another way to resolve the problem. My doctor wanted me to take meds to help empty my bladder so I didn't go as often with urge incontinence but I'm not one to take more meds. Sometime you just have to listen to yourself and take a practical and reasonable approach.
^This^. Ask most any doctor and they will tell you the same. If side effects are severe enough, stop taking them immediately- and then notify your doctor.

By the way, was it myrbetreq? That lessoned my symptoms by about 25%, but gave me horrible dry mouth as well. It just wasn't worth taking since I still had the same problems irregardless AND the dry mouth on top of that.
 

rennecfox

Est. Contributor
Messages
2,281
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Babyfur, Diaperfur, Incontinent
A doctor will always advise you to stop medication if the side effects are severe and contact their offices immediately for what to do if an alternative needs to be given.
 

Dinotopian2002

Breathe Deep, Seek Peace
Est. Contributor
Messages
153
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Diaper Lover, Incontinent
Hi Leio

If your meds are giving you dangerous side-effects, come off it, it's not worth it and it could be dangerous to your health. I tried a number of meds, and only Mirabegron was able to help my bladder control. I still use it as it helps cut down the amount of accidents I have, but I still have to wear diapers 24/7 as its too risky for me to go without one, even though I'm on the highest dose they prescribe.

I still have some Detrusitol, and I tried it again last weekend as my Mirabegron had run out. Big mistake. One of the side-effects of Detrusitol is drowsiness, and combined with my fatigue I ended up sleeping for most of two days as well as two nights. And being so drowsy meant I would wet in my sleep, so I had to wear thicker diapers than normal. Kind of defeats the point really!

If you can, I'd try Mirabegron, but that was the only one that worked for me. I think most of us reach a point where we'd prefer to use diapers to manage the condition rather than deal with all the side-effects of drugs.

Breathe Deep, Seek Peace
Dinotopian2002
 

daylight

Est. Contributor
Messages
77
Role
Incontinent
I second (or nth) in going back to your doctor to discuss your choices be that other meds or practices. Medication didn't work for me, and I may re-visit it in the future. Check with him/her as there maybe something that works for you. My doctor offered up InterStem years ago, though it is not something I want to try at this time, it might be something for you to think about.

Adapting your daily routine can help with management and lowering stress. Chiefly (for me), choosing when to drink water has been a big (not perfect) help. Just be careful balancing physical activity vs hydration is a fine edge to walk. For instance, I hydrate at home in the evenings more than when working. Whereas, drinking smaller amounts and adjusting for busy times during the day.

Also, you learn to know every clean bathroom from home to work. I have had to make emergency stops (or changes) at all of them I'm my area. Sometimes every 30 minutes which is 2-3 times in one commute direction. My wife would roll her eyes and say 'Really?! Again?'. On longer trips, e.g., out of the area, I adapt and resign myself to diapers and changing later.

Emotionally, it is hard. Community support, bantering, laughing, and ___________ that keeps things glued together.

Find joy in each day, and be flexible in accepting what works for you.
 
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Slomo

Est. Contributor
Messages
7,252
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Adult Baby, Diaper Lover, Incontinent
I second (or nth) in going back to your doctor to discuss your choices be that other meds or practices. Medication didn't work for me, and I may re-visit it in the future. Check with him/her as there maybe something that works for you. My doctor offered up InterStem years ago, though it is not something I want to try at this time, it might be something for you to think about.

Adapting your daily routine can help with management and lowering stress. Chiefly (for me), choosing when to drink water has been a big (not perfect) help. Just be careful balancing physical activity vs hydration is a fine edge to walk. For instance, I hydrate at home in the evenings more than when working. Whereas, drinking smaller amounts and adjusting for busy times during the day.

Also, you learn to know every clean bathroom from home to work. I have had to make emergency stops (or changes) at all of them I'm my area. Sometimes every 30 minutes which is 2-3 times in one commute direction. My wife would roll her eyes and say 'Really?! Again?'. On longer trips, e.g., out of the area, I adapt and resign myself to diapers and changing later.

Emotionally, it is hard. Community support, bantering, laughing, and ___________ that keeps things glued together.

Find joy in each day, and be flexible in accepting what works for you.
Oh gods no! Do not trust interstim to work. Even their own success numbers are over inflated. 80% improvement for HALF who get it. Meaning it is a complete fail for the other half. And even IF you're in the lucky half you can expect only an improvement, never the "cure" they make it out to be. Does it work at least a little for some, absomutely. That's one heck of a crap shoot to find out though, and the odds are not in your favor.

Me personally, when I had it done I had a full blown knock you out surgery to have the test implanted. And when they turned it on it felt like electro torture. Low level, and not painful at first. But that went on for three weeks as they tried to "dial it in". In the end I couldn't stand it one even the absolutely lowest setting, and had to have another full blown surgery to have it removed. Worse still, the implant effectively fried my sacral nerve and left my bladder urges and neurogenic sphincter blockage much, much worse than I started off with.
 

Inconinmiss

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588
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Incontinent
My urologist has tried me on 6 different drugs over successive 3-month periods for my urge incontinence. None of them had any significant effect on my incontinence. The side effects varied from drug to drug and in a couple of cases were so bad that I stopped taking the drug before the end of the trial period. My feeling is that unless a drug helps my incontinence enough to allow me to stop wearing a diaper 24/7, it’s probably not worth the cost of the medication.
 

mkinko

Est. Contributor
Messages
34
Role
Incontinent
I tried several medication (Vesicare, Detrusitol, Betmiga). Both Vesicare and Detrusitol had side effects (fatigue, blurred view) so that I stopped taking it. I had no side effects with Betmiga but the medicine did not help either.

It's important to talk to the specialist. As mentioned in other posts no doctor will advise you to take this kind of medication if the side effects have a more negative than positive impact on your life. The doctors specialist in the subject and knowing the patients personal situation might be able to develop a strategy against incontinence, but there's no warranty for success, because there is not one fool proof approach to treat incontinence. Some people react very well to medication (or interstim), others have side effects or the treatment does not lead to the expected improvement. Personally I think that being incontinent needs a lot patience and tolerance for frustration. Same as for daylight, routines, finding pleasure in life (hobbies, friends, ...), a good job as well as a good choice of protection (in my case diapers) help me most to live with incontinence,
 

Missy1

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Messages
362
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Adult Baby, Sissy, Little, Incontinent
My feeling is that unless a drug helps my incontinence enough to allow me to stop wearing a diaper 24/7, it’s probably not worth the cost of the medication.
Thats my view on this as well for BOTH /AL of my IC iccues (nodding head ) and as i have red about the so called success rates of Meds and al other Methods (except surgery BUT not even that is without risks and cant even that guarantee youre being free 100 % from diapers. I have chose to embrace and accept the fact that i will have to wear diapers and al the rest needed from the start & for the rest of my life

And i live in a very advanced IC treatment country i should ad
 

caitianx

Est. Contributor
Messages
2,910
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Adult Baby, Babyfur, Incontinent
I know that stopping a medication without talking to the doctor first isn't advisable. The medication was giving me an intolerable amount of dry mouth... the dry mouth was so bad that it was giving me a very bad sore throat.

I just couldn't handle it. The medication wasn't helping my overactive bladder at all. I honestly don't know whether I could handle another overactive bladder medication. It seems like all medications designed to treat the condition have the same kinds of side effects.

I just feel like I don't know where to turn and what I should do now...
I have had not nice side-effects using incontinence mitigation medications.
It is bad enough that I have Male BPH, which I take medications for to insure I can go pee-pee.
Anti going pee-pee in my pants medications defeat the purpose of anti Male BPH medications.
Tomorrow I have to refill my Tamsulosin Anti Male BPH medication.
 

pioneerford

Est. Contributor
Messages
47
Role
Diaper Lover, Little, Incontinent
Any good doctor will tell you that a medication is only good if it does it job.... my neuro physiologist has always told me that if the side effects of my pills out way the good they do then they are not worth taking.

You want to improve the quality of life.

If you feel that the pills are having a negative impact on the quality of your life, then stopping them would be a good idea.

Sent from my SM-N960F using Tapatalk
 

mickdl

Est. Contributor
Messages
149
Role
Diaper Lover, Incontinent
Hey Leio,

This was also my experiance. How ever I think the medication worked at last for me at the first time. In the first year I tried three or four different drugs end ended up with Tolterodin that worked best for me and helped me to improve my bladder volume again. However I had big problems to cope with the side effects, and meanwhile I had also desided for me that it’s better to accept more wet nights and some daytime accidents then to go with the side effects. The medication helped at the first time where - when I had in bad times - maybe ever 15 min an uncontrolable urge occurs that let me wet myself. But meanwhile I can hold it long enaugh to make it save to the next toilet - if it in reach. I have meanwhile 15 to 20 min. before most likely an accident happens. This is still not perfect but the point is that the medication does not improve this much more. Only for the bettwetting it was still working and cut the times where I wet the bet while sleeping maybe by the half.
But to be honest - for me it matters little if I wet the bet 5 or 10 times a month. The point is - I don’t like to wet the bed anymore. So if it would help me to stopp wetting savely I would think about it despite of the side effects. But unfortunatly it doesen’t and I’m already thru all the alterativ medication.

So from my point of view the only logical conseqense was to stop the medication.
 

Kyma

Est. Contributor
Messages
38
Role
Adult Baby, Diaper Lover, Sissy, Incontinent
I know that stopping a medication without talking to the doctor first isn't advisable. The medication was giving me an intolerable amount of dry mouth... the dry mouth was so bad that it was giving me a very bad sore throat.

I just couldn't handle it. The medication wasn't helping my overactive bladder at all. I honestly don't know whether I could handle another overactive bladder medication. It seems like all medications designed to treat the condition have the same kinds of side effects.

I just feel like I don't know where to turn and what I should do now...
Same here, it made me not feel right, I will take the diapers instead.
 
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