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  • #76
    Re: Botox Today

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    • #77
      Re: Botox Today

      I'll be thinking of you and hoping this will be an answer for you.

      Warm hugs,
      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

      • #78
        Re: Botox Today

        Wizbe

        I am glad to here you have had the Botox and that part is behind you now, I will be praying for you that this one works well for you.
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment

        • #79
          Re: Botox Today

          I am beyond happy! It seems to be working. The constant sensation to pee is gone, the urethral pain is intermittent, the constant bladder pain is diminished but still very present, the frequency has cut in half the last two days - YAY. I was awake for half the night due to bladder pain but hydromorphone did eventually calm this down. I am having some retention so I am presently catheterizing in the morning and before bed. I am peeing on my own but as the botox kicks in this could change - I could have to catheterize to pee as I may not be able to pee on my own. I am beyond happy! Praise God for giving me my life back :-) - I know it's coming :-)

          Current Meds:
          1 Elmiron 100mg 3x a day
          1 Cimetidine 300mg 2x a day
          4 Gabapentin 300mg 3x a day (3600mg)
          1 - 2 Atarax 25mg at bedtime
          1 baclofen 10mg 3x a day as needed
          200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
          2 belladonna and opium suppositories as needed for pain daily.
          Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

          I have tried but failed -
          lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
          [/I]

          Comment

          • #80
            Re: Botox Today

            I am so pleased for you, I have been waiting to hear back.

            You had double the dose right?

            I know it has been awful for you, but maybe the next person when the Botox doesn't work they will know to try a double dose.

            I am so glad your getting your life back on track
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment

            • #81
              Re: Botox Today

              Britza

              Sorry she high jacked your post I hope they shut her down soon
              My are with you all. May you all find a way to peace and joy in your lives.

              Comment

              • #82
                Re: Botox Today

                Originally posted by wizbe View Post
                I am beyond happy! It seems to be working. The constant sensation to pee is gone, the urethral pain is intermittent, the constant bladder pain is diminished but still very present, the frequency has cut in half the last two days - YAY. I was awake for half the night due to bladder pain but hydromorphone did eventually calm this down. I am having some retention so I am presently catheterizing in the morning and before bed. I am peeing on my own but as the botox kicks in this could change - I could have to catheterize to pee as I may not be able to pee on my own. I am beyond happy! Praise God for giving me my life back :-) - I know it's coming :-)
                Wow Wizbe,
                That is such great news, I am really happy to hear that. I hope that you will continue on the road to complete healing.

                Yessie
                Your body's ability to heal is greater than anyone has permitted you to believe

                I am 40 years old and have (2) children, ages 14 and 10. The bladder pain began on the month after my 40th Birthday.

                I have not had any procedures done, I have not been diagnosed with IC, I do not take any medications.

                I had a tubal ligation in 2006. I have (1) ovarian cyst which Dr. said is no problem. Have had over 30 UTI's throughout my lifetime.

                Comment

                • #83
                  Re: Botox Today

                  Wizbe,

                  I'm so happy that you're feeling better and doing so well! I hope that this is the beginning of a long period of health for you.

                  Dave

                  Comment

                  • #84
                    Re: Botox Today

                    Originally posted by ltapilot View Post
                    Wizbe,

                    I'm so happy that you're feeling better and doing so well! I hope that this is the beginning of a long period of health for you.

                    Dave

                    So nice to see you online. Thanks for the well wishes. I am hoping for a long period of health too because the last 8 months has been pure torture. Thankfully this botox treatment is working and I cannot be more pleased and thankful. How are you doing? Is the botox still helping you? How are your other health issues? Thinking about you!

                    Wizbe

                    Current Meds:
                    1 Elmiron 100mg 3x a day
                    1 Cimetidine 300mg 2x a day
                    4 Gabapentin 300mg 3x a day (3600mg)
                    1 - 2 Atarax 25mg at bedtime
                    1 baclofen 10mg 3x a day as needed
                    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                    2 belladonna and opium suppositories as needed for pain daily.
                    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                    I have tried but failed -
                    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                    [/I]

                    Comment

                    • #85
                      Re: Botox Today

                      Thanks everyone for the well wishes. Pain has increased lots over the past week. Frequency is still ok - thankfully. I thought I may have had an infection. According to my urologist I do not - darn it.

                      I had an urologist appointment yesterday. I do have some retention but I knew that. He told me it was really too early to tell if it would work for pain. The botox full effects can take a long time to see.

                      I was advised to continue the instillations always. Botox works for frequency. Instillations work for my pain. Though the last three days I have been living on hydromorphone.

                      Thankfully, things have improved with the frequency. YAY! I am hoping that this new diet that I am using will eventually help with pain.

                      Have a blessed day everyone. It is instillation time for me. Many, many blessings :-)

                      Current Meds:
                      1 Elmiron 100mg 3x a day
                      1 Cimetidine 300mg 2x a day
                      4 Gabapentin 300mg 3x a day (3600mg)
                      1 - 2 Atarax 25mg at bedtime
                      1 baclofen 10mg 3x a day as needed
                      200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                      2 belladonna and opium suppositories as needed for pain daily.
                      Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                      I have tried but failed -
                      lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                      [/I]

                      Comment

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