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please help me with your advice!

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  • please help me with your advice!

    Couldn't find the right place to put this question, but here is where I settled.

    I manage to control my pain (most of the time) with a strict diet. But, what is driving me crazy is getting up ten times a night to pee! I am getting no quality sleep.

    My doctors have given me samples of Enablex, Toviaz and Vesicare, but I am afraid to try them. I am so afraid that I will have to pee and not be able to. It reminds me of the feeling when I had Urodynamics and I felt like I was going to burst and I couldn't go. Believe me, not a feeling that I ever want to have again.

    I just can't seem to make myself put one of these pills in my mouth.

    Any advice?

    Thanks as always,

  • #2
    Are you taking elavil? I think that helps alot of people sleep better and cuts down on those bathroom trips. I'd start there if you're not taking it yet.

    I wish I could reassure you about the drugs you've been given but unfortunately until you try one you don't know. I have never had an issue with them and take vesicare but some people do. Were you told you have retention to begin with? Are they low dose samples you were given? the lowest is best which is 5mg for vesicare and 4mg with toviaz, not sure about enablex. If they gave you higher dose samples probably best to not try those imho. And unfortunately you can't cut them because they are extended release meds lasting about 24 hrs.

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      Sounds like your Dr is giving you some good meds to try. You won't know what any med is going to do unless you try it unfortunately. All meds can cause different people retention so I would say just pick one and give it a try, you might find it is the best thing you ever tried! I am sure your Dr has methods and treatments that he has found to work well with his/her patients, not all Dr's choose the same treatments and you could have different problems that he might feel don't require you to take elavil or some of the other options out there. You have to start somewhere....

      Good luck and keep us updated.
      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4
        Muscle Relaxers Helped Me

        Dear Rocklandgal,
        I have had the same problem as you with getting up what seems like a billion times a night to pee, but have found some relief with taking a muscle relaxer at bed time. I currently take 4 mg of Zanaflex at bedtime.

        I have also had some success with taking Aterax (an antihistamine frequently prescribed for IC) and Ambien for sleep. Although until you know how these medications interact together you should be careful because they all have sedating like effects, so you should be EXTREMELY CAREFUL and talk to your doctor first before trying any of them together.

        I am rather resilient to all types of meds and can take most of these together but I would not recommend it for others who don’t know how their body will react. By far the Zanaflex seems to have worked the best and it also helps me sleep. I tend to get better rest while on it because I am up less frequently for the bathroom. I also use it in conjunction with my pain meds when I am dealing with a sever flare, since I am in bed anyways it doesn’t matter that I am sleepy during the day.

        Remember all IC patients react differently and have different things that work for them, try a range of solutions before you settle on the one that works best for you. Good luck!