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Terrible flare up!

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  • Snowden1
    replied
    earthlady,
    I have tried mostly the SSRI's I think Lexapro, Paxil (was on this 17 years before getting IC) Prozac, Cymbalta (terrible retention), Prestique (spelling?), Well butrin, Elavil, some others too I just forget right now. Lexapro really worked well for me until they gave me Diluadid for pain. It interacts in a dangerous way for me. I throw up, get dizzy, feel faint, get a rash, really, can't handle light or sound, it is really bad. Lexapro before the Diluadid was really helpful and stopped my frequency. Now I can't get off the Diluadid and if I could I don't know onto what. I am allergic to percocet (can't breathe), Fentynl (severe muscles spasms in chest), morphine (stops urination, jittery), subqtex (spelling - severe vomitting), Lyrica (did nothing) caused blurry vision, Gabapentin -2500 mg began having stomach issues and so sleepy. Can't remember there were some others.

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  • Snowden1
    replied
    425runner,
    Thanks for the response. I should probably post my meds at the bottom of my page. I take Klonapin .5mg twice a day. I also take all Hormones, (subq) for complete hysterectomy that started this mess three years ago. Exalgo (this is extended release Diluadid) 8 mg once a day and Diluadid 2 mg for breakthrough pain. I can only eat organic chicken (a few other meats), rice, rice milk, canola oil, olive oil, lettuce, almonds, organic rice cereal, green beans, organic cane juice, and potatoes. This is my list and this is really all I can eat. I have tried to add other things in and I know eggs cause pain, dairy causes pain, vitamins and minerals like Vit C, B and all magnesium. I am gluten intollerant so no bread and most of the gluten free has egg whites or something I can't have.

    When this first started I could eat more. Now it is much worse. Aloe Vera was helping for awhile a long time ago and then I started breaking out in a rash. I have since tried to take it again and had the same results. I am not sure about Marshmellow root tea. I used to drink it in the tinture without alcohol just in warm water. It did increase my frequency,, not sure if it helped with the pain because there was so much trying different foods or meds all the time. I have some and can try it again. I need to make sure my bladder is somewhat calm or I can't tell if something is making it worse. I will try it again by itself thanks for the reminder about it.

    I seriously don't go off the IC diet or my crazy diet I call it at all. Never. It hurts way too much. For over 2 years the only thing I did go off for was blueberries and I paid for that.

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  • earthlady
    replied
    You didn't mention what class of antidepressants you've used. I couldn't take any of the tricycic antidepressants, but I could take the other class that includes Prozac. All the tricyclics ( elavil,tofranil, pamelor etc.) would cause me some retention and nervousness, but Prozac never did.

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  • 425runner
    replied
    Snowden1 -

    Sorry to hear about your problems, but what I think you need is a low dose Klonopin 0.5 mg twice a day to calm down your bladder. I'd also suggest drinking marshmallow tea since it's soothing to irritated tissues. Are you taking any nutritional supplements? PM me if you'd like some suggestions.
    I hear ya about the anti-depressant, I went through the entire line of SSRI's -it was terrible, until I finally setlled with Wellbutrin XL. As far as foods...is there anything that doesn't cause you pain? If so, stick with eating just that for a while.

    Hugs

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  • Snowden1
    replied
    Retention is a huge problem

    When IC first started for me I had frequency like crazy and moderate pain. Now it seems like every medication I try causes me to STOP urinating. Pain medication (my pain is now very severe), anti-depressants, and it seems foods. Also, I am becoming MORE sensitive to things I could take in the past. Does anyone have any suggestions? I can take NOTHING for constipation without severe bladder pain. I can't take anything for GERD because of severe bladder pain. If I take more pain medication to help with the pain I can't pee. Please, does anyone have any suggestions? What do you do when you've tried all the conventional treatments and nothing works ? I NEED an anti-depressant, but they ALL interact with the one pain med I am currently taking (but thinking of going off of) that I'm not allergic to (I'm allergic to morphine, fentynal, percocet). I throw up, break out in hives, etc. I need a pain med and an anti-depressant has anyone had this problem? Help....

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  • Jocotter
    replied
    Hi Anna, this is totally off subject, but I notice your name Luvterriers. I had a rat terrier, Bogart,up until last November when he passed away. I loved that little dog so much! What a great personality he had. We got him at a rescue place and someday soon, we will look for another.

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  • 425runner
    replied
    You can get marshamallow root on line. It comes in a bag, loose tea.
    Last edited by ICNDonna; 04-14-2011, 02:25 AM. Reason: Removed sales site.

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  • luvsterriers
    replied
    Originally posted by 425runner View Post
    I've been feeling good for the last two weeks so I decided to have some Starbucks. First day was just mild burning and I ignored it. This morning, I had another coffee and boy...did it give me bladder pains! It was so bad, I was in tears and had to leave work.

    I guess caffeine is off the limits forever back to drinking that marshmallow tea...grr...no energy from that.

    I'm also wondering where did you get that Marshmallow root tea? Asian store? I have find corn silk tea in asian stores in the little tea packages, tried that for bladder with no good results. I have heard of marshmallow root capsules.

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  • Jocotter
    replied
    I love Starbucks coffee, too, but can only drink it if I have been having a good few weeks. My flares seem to come and go, but when they are here, watch out. So it's a rare treat.

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  • momto3
    replied
    I have never liked coffee so I didn't have to give it up. However, I can drink Starbucks lattes. I get a vanilla grande with a single shot of decaf. It satisfies me and gives me a pick me up, even though its just decaf. I also can drink chai lattes but not too many days in a row. I had a 2 day flare this week and I think that may have contributed.

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  • jimmydickens
    replied
    tea

    Originally posted by 425runner View Post
    I've been feeling good for the last two weeks so I decided to have some Starbucks. First day was just mild burning and I ignored it. This morning, I had another coffee and boy...did it give me bladder pains! It was so bad, I was in tears and had to leave work.

    I guess caffeine is off the limits forever back to drinking that marshmallow tea...grr...no energy from that.
    marshmallow root tea? Does it help with a flare during? I've never heard of it. Something online or maybe CVS? I'll try agything when I'm in one.....

    Leave a comment:


  • earthlady
    replied
    I did the same thing with Starbuck's coffee. After my two months of pt work and feeling like I was normal again I went and had Starbuck's coffee a few days in a row. I was feeling like I needed a lift, but boy was I sorry. I've heard that Starbuck's coffee is the most acidic coffee out there due to how many times it is roasted- which I guess gives it the robust flavor but sure adds the acidity. I've also heard that cold pressed coffee (which you can make at home from beans) takes out the acid. Not absolutely sure how much acid it takes out, but if anyone out there knows it would be good to hear.

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  • cmclien
    replied
    Ouch! Thats too bad your insurance won't cover it. I have to pay 130/mo or so for mine which is expensive enough. Maybe a generic will eventually come out.

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  • 425runner
    replied
    Hi Cindy,

    I decided against Elmiron since it's so expensive, sorry but I don't have extra $500 to spent. I ***** & moan when I have to pay $78 for 30 pills of Vyvanse and already spend about $200/month for my other meds/supplements

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  • cmclien
    replied
    You had a couple of good weeks so that is very promising! You probably just went overboard with the diet and coffee. I'm certainly not one to judge on that because when I feel really good I push the diet everytime too. Who would ever have known that pushing this diet means I sneak a yogurt and some cocoa almonds. Kinda ironic to feel guilty about that right?

    Did you decide not to try elmiron? I didn't see it in your list of meds.

    Leave a comment:

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