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  • #16
    Question for the group....

    Elavil seems to have been prescribed for just about everyone. For those that no longer take it, was it because it didn't work or was it side effect related? For those that still take it, do you think it really works or is it because your symptoms have calmed(diet adherence)?

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    • #17
      The elavil really worked for my pain but I had to stop taking it because it made my blood pressure drop really low. I wanted to keep taking it for pain relief but I don't want to pass out every time I stand up
      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
      Lexapro-20 mg
      Aciphex
      Ambien-as needed
      Percocet-7.5 up to 3 per day as needed
      Valium-10 mg x2 per day
      Phenergan-1 at night
      Prelief w/everything
      Now recovering from acute pancreatitis

      Currents treatments that help somewhat:
      Heating pad
      Hot baths
      Ice
      Being VERY still while lying down with legs elevated

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      • #18
        Hey Toby,
        Sorry you are having so many problems. Can't help with the Elavil thing, but apparrently it works well for many. If you Google Elavil, it is actually recommended for IC. The correct dose is something between you and your doc. Will tell you that marshmallow root tea is a real soother for my hub, he drinks a pot a day with just a teaspoon of honey, and it really seems to soothe his symptoms. That and Hydroxyzine 50 mg at night have calmed him down. Just got a shipment of 15 lbs of marshmallow root tea! It is a lifesaver for him. Totally understand how you feel like a guinea pig, I think everyone goes through that unless they are really lucky. Wish you the best, and please let everyone know how you are doing. Knowledge is power, and if we keep each other up to date, we will get there. Jill, wife of Bob

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        • #19
          Toby, Can you elaborate on your symtoms. Do the symptoms come and go or are they constant? After trying a host of meds I am now on the route that Sherwood was talking about "pelvic floor therapy" which can help with people with IC. Google it and see if any of the symptoms are related to you. Actually their are some articles here on the ICN that are very good on pelvic floor therapy. I have had IC for 15 years now and the med that helped me the most is hydrocodone but I am on another mission to get to the root of the symtoms instead of just masking. I did take elavil for several years and it did help with sleep, pain, and urgency but sometimes it would cause me to flare as well. I did not feel like myself on elavil and decided to explore other meds. Be careful to not jump up to fast on the elavil.... it can make you feel like a zombie/very tired.
          [SIZE="1"][SIZE="2"]Please send all private messages to [email protected]. I do not check my ICN mailbox much.
          Symptoms:
          24/7 Bladder Pain, Mild Urgency and Frequency. Always tired and fatigued. Trouble sleeping due to bladder pain and trips to bathroom.
          Allergies/Sensitivities:
          Alcohol(big time!), Soft drinks. Foods dont bother me.
          Current Supplements: None presently
          Conventional medications!!!!!: Nuerontin, Hydroxyzine, Elmiron, Tramadol
          Tried many other medications... will list later

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          • #20
            Hi Dean,

            Symptoms are similar to yours....urgency(sensation of needing to go to bathroom, not an urgent rush to bathroom.), pain in penis, perineum pain occasionally. First, the urologist said IC, then after following diet with no change, he said it sounded more like chronic prostatitis. Either way, seems like treatment is similar. I've continued following IC diet. Thus far, I flared on mayo and tomatoes. Not sure if that means it's IC though.

            This all started in late November with a stressful time I had. Actually started the same day my stress peaked. The feeling hasn't left since but does get worse with flares which seem to be food and stress induced.

            I haven't seen much effect from the elavil, now at 50mg. I only have sleepiness the first day after dosage change. After, I don't notice any effect, good or bad. Only side effect is muscle twitching in my abdomen, which may be an allergic reaction to the meeds. It started the night after my first dose.

            I go see my urologist in two weeks and plan to ask him about the pelvic floor dysfunction. I've tried to read a little about it online but it's a bit confusing, since most literature is about women issues.

            I'd appreciate any feedback...I was sure the elavil was going to work. Quite frustrated that I haven't noticed any effect after three weeks and following diet.

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            • #21
              Originally posted by Toby1 View Post
              Question for the group....

              Elavil seems to have been prescribed for just about everyone. For those that no longer take it, was it because it didn't work or was it side effect related? For those that still take it, do you think it really works or is it because your symptoms have calmed(diet adherence)?
              I have never been on elavil, i was on elmiron for a short period it did no good.
              i have dmso once a month so far all is well in that area of my life.

              Sorry to here you have IC but I am glad you found this forum its very helpful to all of us.

              We are all brothers and sisters to this desease no one else truly understand the life changes and pain we go through.

              I hope you have a good uro and that he or she has you on a good treatment plan.
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