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hi everyone,

i was wondering if there was anyone on this forum who also has interstitial cystitis (IC). i have a really bad case, pain-wise, and the pelvic pain has actually been so bad, that this disorder has taken over the dysautonomia. I actually have to take narcotics for. Anyway, I just wanted to see if anyone with dysautonomia had it, because I figured someone with both disorders might be someone who I could identify with even more.

take care,

kit

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I have this. One thing that helps a lot is Hydroxyzine HCL. It is an antihistamine prescribed and it helps some IC patients. Another thing that helps me is watching what foods I eat. There is a definite burning that occurs in my bladder within minutes of ingesting or drinking the wrong things.

I have mast cell activation syndrome. This is the problem causing my POTS and IC. I have just found out about this and I do not know the final outcome of the meds I'll be taking, but I thought I'd let you know. At 60 years it's been a long time coming.....I mean, I've been one big medical mystery all these years and I'm finally getting to the bottom of it.

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I've got both, too, as a result of the super exciting mast cell issues. The Atarax does help, but mostly I've found that it still flares up during particularly stressful times along with my other typical issues (GI problems, hives, etc.). It's not a whole lot of fun, but it definitely is manageable with the right meds--and with a good "bladder" diet!

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thanks for teh responses everyone. my ic is unrelated to my diet, and the atarax does not help. i've tried everything. i live near one of the hubs of ic research, and eventually they just decided to put me on narcotics. they help, but i hate the idea that i'm on them. i dont' know why, but it makes me feel embarrassed. the pain is horrendous though, so i'm definitely glad that there is something that helps. i hope that none of your cases get as bad as mine.

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Kitshalleen, I'm sorry you have a bad case of IC, but glad you can take the narcotics. I cannot. They make me really sick.

Has your IC specialist looked into root causes for your IC?

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