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  • Big Flare - first post

    I've never posted here before, but often lurked reading the info. I was diagnosed in July, but really haven't had a flare since I started on the Elmiron/Atarax the fall. Then all the sudden yesterday the pressure returned. It usually starts for me with urethra spasms. The bladder pressure thankfully hasn't been a problem except for after my cysoscopy. Tonight I have it all it seems. I can't sleep, I have to go every 20 min or so... I thankfully have learned to manage my anxiety around this since my last big flare and am managing to only be mildly upset tongiht. But I just could bear to sit here alone, in pain, wishing I could sleep. So I thought I'd post.

    Danielle

  • #2
    Hi, Danielle. Sorry to hear you are flaring --- it can be scary when we have felt good for so long to suddenly be socked with a flare. Can you link it back to anything? Food, stress, etc.? Or could it be a UTI?

    I hope you find some answers and I sure hope you feel better soon. kissing
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment


    • #3
      If you're not feeling better this morning, I do suggest you call your doctor. It's possible that you have infection since it came on fairly suddenly.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Thank you for the support! It helps so much to know i have a place to go now. And I do feel better this morning.

        I started a new vitamin regimine this week. I am wondering if one of the vmins I started with is causing problems. I've done E & C before, but I started with a bcomlex, mixed carotenes and selenium. I'm going to quit all three and try adding them in one at a time. Stragely enough I think it might be the selenium...?

        Today all I can say is thank goodness I don't have a job yet! I just moved and haven't found anything. Oh, and a double thankgoodness for valerian root. A couple of those things and I just don't care that I hurt anymore and then I pass out.

        Thanks again for the support.
        Danielle

        Comment


        • #5
          You might take a peek at the vitamin section of the Patient Handbook:

          http://www.ic-network.com/handbook/vitamins.html

          You may be onto something with the vitamins b/c they can cause problems for many of us. I think it is the B vitamins that often cause trouble for ICers. It's often suggested to try and get those vitamins naturally in IC safe foods - there is a pretty good list at the link above.

          Good luck!
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment


          • #6
            i agree with donna if you dont feel better soon please go to the doctor or the er to let them check you for a uti. hope you feel better soon
            xxxxxooooooo
            Rhonda
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.





            I have IC, but IC doesn't have me anymore!

            Comment


            • #7
              I hope you feel better soon. grouphug
              DanaW

              "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

              Comment


              • #8
                hugs hope you feel better soob
                brat
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  Hi Danielle, and hope you start to feeling better really soon. Let us know how you are doing, hugs Iris. hi grouphug
                  Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

                  Comment


                  • #10
                    Thanks everyone for all of the support! I'm feeling significantly better after getting some good rest. I'm still dealing with some urethral tenderness and there are occasional quick, sharp pains. But I also realized when I rolled over the other night and brushed my breast against something that my hormones are raging. Its been a long time since my hormones have caused a flare, but I'm guessing it has been the combo of new vitamins with hormones. I'm trying to clean myself out and wait for the tenderness to pass. In the mean time I'm thankful in some ways for the flare because I feel very connected and supported and its forcing me to find new doctors and take my health into my hands again.

                    Thanks again.
                    Danielle

                    Comment


                    • #11
                      Hi Danielle,
                      I can't take B-complex at all! Huge and long flare when I did try to take them. I heard that the only B vitamin we can take is B-6. You might want to try that one. Also, the C vitamin may be bad unless it is the non-acidic kind. (ester-c, or something like that) Good idea to try them one at a time to see which one causes the pain. But, I would bet it is the B-Complex. Good luck
                      DanaW

                      "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

                      Comment

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