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  • cmclien
    replied
    Hi Jonathan,
    My doctor says the newer class of drugs has less side effects like those. Vesicare is new and there is an even newer one now but I can't remember the name. Of course everyone reacts differently to them but maybe you'll find one that helps. The ditropan also caused a little burning for me. I eventually went off it because I thought the side effects were almost worse then going too often. I've been on the vesicare about 3 weeks and am very happy with the results. I'm on the lowest dose but would possibly try a higher dose at my 6 week checkup if it would quiet the bladder muscle even more. I've read to give it at least a couple months for full effect. It depends on how much drier it would make my eyes.

    Bladder training, its not very fun at first and I get tired of going to the bathroom by the clock though my doc said the vesicare would help and he's right. I had a rare 3 hour time period yesterday, the first in years so it must be working. My goal is to get to 3 hour intervals and I'm increasing it 15 minutes a week. The key is to start with a reasonable number that you can make and increase it 15 minutes each week, so you see its slow going. I have the minimum and if I can go longer I do. Also, you're not supposed to cut back on water intake while doing this. Just drink your normal amounts.

    The diet thing is confusing me somewhat. I'm thinking the article Jem posted on hystamine intolerance might be right there for me. I ate a burrito bowl from chipotle last night with that hot verde sauce....I know I know, not supposed to but I did anyways. I took 3 prelief with it and had zero issues with it so go figure.

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  • jonb1
    replied
    Hey Cindi,

    I have tried Sanctura several times in past 5 months and stopped it because of retention. I am wanting to try another OAB. I see where you like Vesicare better than Ditropan. I was going to ask for Ditropan next week. How long have you been on Vesicare?
    I want something that really helps. I have been on elmiron 300 mg a day for 3months. And just started hydroxyzine, but I don't think it's jurting and not helping. I go 12-15x a day and feel like I could go more sometimes.
    Is the bladder retraining working..easy to to stick with?
    And this diet thing is hard to,where I miss chocolate, pizza and and taco sauces, etc etc.

    Thanks!!
    Jonathan

    Leave a comment:


  • cmclien
    replied
    Hey Rachael,
    I do feel the vesicare has significantly lessened that feeling for me. I was on ditropan for a couple of years but I didn't like it as much; it almost made it hard for me to go, kind of gave me a hesitancy. I don't have that feeling at all with the vesicare which is nice. It really dulls the feeling, it relaxes the bladder so it isn't telling your brain as early that you gotta go, gotta go, gotta go! I have had times where it was every 15 minutes. The only thing that helps me is baking soda 1/2tsp in a glass of water or just alot of water. Its a bit of a viscious cycle, the more I drink the happier my bladder is but then of course the more I have to go. I just ordered Dr. Moldwin's book, am looking forward to reading it, you're obviously in good hands. Ask him about one of the anticholinergenics. My dr is starting conservatively too which I'm glad about. I have read that elavil will also relax the bladder some too in a different way.

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  • marar76
    replied
    @Kadi - Awesome!!! Thank you so much for that link! I will definitely be checking that out. I've read a lot of your posts and your so inspiring. I base what might be okay for my bladder off of what you eat

    @Cindi - Yes, it sounds as though are symptoms are quite similar. I haven't been put on any medications like vesicare. I take .5 klonopin at night and 10mg. of elavil. It bums me out as I really hate taking pills. I always thought I'd be able to just eat organic and stick to helping myself through lifestyle change BUT when this popped up I was like there's no way in hell I'm gonna live like this, gimme whatever you can. My dr. is Moldwin so he's starting off conservatively. I'm wondering now if I should ask him about what you're on. If I could just get rid of this false urge I'd be good to go. Do you have problems with sleep. This feeling makes me anxious sometimes so it's hard for me to sleep. Have your meds significantly lessened this feeling? Thanks for your response! -Rachael

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  • kadi
    replied
    Check out http://www.myfoodstyle.com You can subscribe for $4.99 a month and get a daily IC-friendly recipe! I've made the sesame dressing, Moroccan meatballs, hummus, soy sauce substitute, garlic chicken pizza -all very good

    Leave a comment:


  • cmclien
    replied
    Mine are similar to yours though I started out going about 10-12 times a day and now am at about 7 (I am doing bladder training), hoping to get it down to about 5 but my bladder kind of hurts when I don't drink so I end up drinking about 7 glasses of water a day and another 3 of coffee or the acceptable teas. I currently feel like I gotta go an hour after I last went and then have to basically hold it until 2 hrs and 15 min. It is uncomfortable, the vesicare has helped alot, are you taking something like that? It has weakened that feeling somewhat and totally stopped the spasms which were super uncomfortable.

    When I eat the wrong things I get some mild pain, like it kinda hurts to sit as if my bladder is super full but its not. Regular non-acid reduced coffee always does that to me and cocoa and yogurt and I'm trying to figure out the rest but its slow going.

    I started taking claritin last night to see if it will help as I don't think I can handle the side effects of hydroxyzine which my chronic dry eye syndrome not to mention the tiredness it would probably give me. I'm super drug sensitive. Its only been a day but I am having a good day so maybe its helping. I will keep taking it for awhile to see.

    Are you on medications?
    It is uncomfortable I agree and just want that false feeling to go away.

    Leave a comment:


  • marar76
    replied
    Thanks for your reply Cindi! May I ask what your symptoms are/were? Mine are just the false sense of needing to go. I go only about 5x's or more a day but feel as If I could much more but know it's not real. I think what's making things worse it that I feel deprived of the simple pleasures of life so it's giving me anxiety. I'm just tired of being in discomfort most of the day.

    Rachael

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  • cmclien
    replied
    Thats a tough one though garlic, ginger and oregano are all on the ok list, well ginger I think is a try it. Once a week I go out and eat whatever I want and just take alot of prelief with it. I guess it depends on how severe your symptoms are and how sensitive you are to foods. When I was diagnosed my UG told me to stay away from the big ones like most fruits, alcohol, tomato, chocolate, coffee, spicy food (thats the hardest for me), coffee (I just cant give it up now buy low acid coffee from Hevla on line. I mix 2/3 decaf and 1/3 reg. I personally think its really good but kinda pricey). Not everything on the list bothers everyone so try something new everyday on the tryit list or even on the caution list and see what your reaction it. I don't think alcohol bothers me at all as long as I take prelief with it but again its very individualized.

    Leave a comment:


  • marar76
    started a topic foodies!

    foodies!

    Hi all,

    As many of you have read I'm a complete coffee addict (gave it up) and big time foodie! My husband and I live in NYC and loved going and trying all different restaurants. I'm heartsick to have to stay home and have flavorless meals. Can any other foodies respond as to how they've dealt with this? My passion has been taken away from me. There's only so many times I can eat plain chicken and rice. Ugh! There are some really great recipes on here but they're so fattening. How does one cook reasonable healthy without adding flavor?

    Rachael
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