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Thread: Stopped Taking My Incontinence Medication

  1. #11

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    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

  2. #12

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    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.
    Last edited by daylight; 4 Weeks Ago at 17:00. Reason: grammer...

  3. #13

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    Quote Originally Posted by daylight View Post
    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.

  4. #14

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    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.

  5. #15

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    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,

  6. #16

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    Quote Originally Posted by Inconinmiss View Post
    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

  7. #17

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    Quote Originally Posted by Leio View Post
    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.

  8. #18

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    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

  9. #19

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    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.

  10. #20

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    Quote Originally Posted by Leio View Post
    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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