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Just need to vent because of flare...

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  • Toto
    replied
    Thanks to all... Taking advice from all the great folks here and today is a bit better.

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  • Pammylynn8
    replied
    hoping you feel better soon! I am so sorry about the flare up! I hope you can find a medication or therapy that will help you soon! hugs!!

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  • Toto
    replied
    I only tried a couple meds such at Elavil (way too strong) and Hydroxyzine and they did nothing. Also, I am allergic to something in Elmeron and can't try that med. Seven years ago I got Urodynamic testing (first of two over seven years) and the doctor said at that time that the only thing that would help me would be an Interstim. They never prescribed medicine and in a nice way said none would work anyway. My diagnosis was not IC at that time but was "overactive bladder." What's really strange is that my recent Urodynamic test showed that my bladder is not overactive at all, but that it is very small. And after having a cytoscopy, I got the diagnosis of IC with little explanation and was given this website address and told to look at it.

    Thankfully, I do have an anti-nausea drug on hand for migraines call Promethazine. When I'm desperate I take one and I can sleep. Of course I'm very groggy the next day for half the day. (even at the smallest dose)

    I am SO grateful for this site and I rely heavily on it for pain management and support. Last night I went out to buy the Azo pain relief tabs recommended here. And they do take the edge off but don't stop the burning (that's the worst part for me). During my travels I was pleasantly surprised to find a coffee substitute recommended here called Roastaroma. It is very good and has a taste similar to coffee.

    I really hope in two weeks my new doctor (Urogynecologist) will at least explain the results of all the testing I had done. I can handle a bad diagnosis but can't handle when the information I get is so vague.

    I seem to be rambling here. Again, thank you for the kind words and support. I would feel dreadfully alone in this without this site.
    Last edited by Toto; 08-12-2011, 07:02 AM.

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  • earthlady
    replied
    Chamomile tea always worked for me but I would hate to recommend a tea and then have it cause you irritation. In the beginning it was the only tea I could drink. I'm wondering why your dr. told you medications won't work for you? Have you tried most of them already? Most people do find something that works even if you have to try several. Are you able to try the baking soda and water? If you aren't on a sodium restricted diet and don't have health issues that would effect you with it it may be worth a try. Good luck with the new dr. I hope you start feeling better soon. Flares aren't always diet induced, and sometimes they just happen for no known darn reason.

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  • ICNDonna
    replied
    I hope your tomorrow is better.

    Warm hugs,
    Donna

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  • KarenAnne
    replied
    Feel better soon Toto!

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  • Toto
    replied
    Thank you so much for your kindness nanawaggs. It's helps me so much just to know someone is listening and understanding.

    I'm really praying nowadays that this new doctor will be what I'm looking for. I'm hoping to try other meds or at least have an emergency plan of action.

    Just when I think I'm over a flare another hits. My darn bladder is so temperamental.

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  • nanawaggs
    replied
    Hi, Toto ~ I certainly remember the days of crying pretty much all day/night. Have you tried a little baking soda in some water? Don't be so hard on yourself about the diet....just start at square one each time and give yourself a pat on the back for keeping on! You may get a lot of questions answered from your new uro/gyn....I know mine is wonderful. I don't have any experience with some of your questions, but want you to know I care. I'm so sorry you don't have anyone to talk to, but the ICN is the right place to vent, get comfort, understanding and advice.

    Take care.....

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  • Toto
    started a topic Just need to vent because of flare...

    Just need to vent because of flare...

    I've been on this site all day. My bladder finally calmed down a bit (was terrible over the past week) but then suddenly something set it off. My period is coming and I'm am guaranteed misery. But then I ate something that was not safe (msg and a new herbal tea) and my bladder freaked out. I tried to rest a bit but couldn't because I had to pee every 5 minutes (wish I was exaggerating).

    I just read the thread here on flare relief. I'm sitting with a heating pad, drinking water and wanting to cry. I'm so angry at myself for not doing well enough on the diet. I can't tell you how much money I've wasted on food trying to stick with the diet. I've been going up and down over the months and feel it's such a major change. I hate cooking and food shopping is the worst chore to me. I just wander around the store in a daze.

    I have no emergency meds on file because my other doctor told me meds won't work for me. (two doctors told me the same thing over the course of 7 years) So now I'm going to see a urogynocologist in a few weeks and get a third opinion and consider the hydro (though I'm real nervous about that).

    I took a prelief... REALLy hoping it helps.

    I'm thinking a cucumber I ate may be a problem. I read it can act as a diuretic. Perhaps that also added to my misery since I ate one with the tea one hour before the severe flare started.

    Is there no relief during pms?

    Has anyone has luck with cornsilk? I read that it is good for the bladder.

    Thanks for letting me vent. I can't talk about any of these things with anyone!
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