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  • So frustrated

    Hi all-

    Well, I need advice. I was doing SO well...the only thing I was on after a terrible bout with amitriptyline was my compounded T cream for a hormonal imbalance. I've been on that for 8 weeks, and it has helped my joint pain, vitality, and libido immensely.

    Since 2 days after Easter, I've been flaring. The pelvic pain comes and goes (day on, 2 days off), but the urgency, nocturia, and frquency have been intense- I was down to 1 to 2x a night and then went back up to 5. I went to a new Uro, gave her the results of my Potassium Test last Sept (which were vague- not clear cut), but based on my history of bladder issues, voiding diaries, etc. she feels strongly it's mild to moderate IC. She gave me Neorontin (100mg) and hydroxyzine (25mg at night), and spirulina tablets 3x daily as first line therapy. If in 7 or weeks that's not working, she wants to do a Cytoscopy with Hydro under aenathesia...

    Well, over the weekend, I was feeling, pretty good, but drowsy. But good. One night I even went only once! Today, though, I had a tiny bit of soy milk and have been paying the price a bit. If 10 is the worst, I am at a 4. I'm gonna take the hydroxyzine soon...

    So ICers, can I expect good results from these meds? In the past I've done detrol, ami, tons of physical therapy, refused DMSO, had a cytoscopy with urethral dilation (HORRIBLE- but eventually had 3 symptom free months).

    Overall, sometimes I suffer, but I feel when it's bad it's tolerable. I can work, do my life, etc. But today is bad. I've had days, weeks, where Indian food and burritos are fine.

    I guess I'm overwhelmed. Since last August, this has been such an arduous process. I was doing so well in Feb/March! I can't figure out if intimacy or my Grandmother's homemade Polish soup made from vinegar and rye set me off at Easter. I know, I know...that was crazy. But she's 86, and I had to be respectful. I had been doing so well.

    I am pretty IC diet conscious for the msot part. But when I feel good, in remission, I start to teeter. Food is so amazing- how can we not enjoy once in a while?

    I'm just going on too long now. Someone, please tell me if I should have the cyto or just wait it out with the meds. I hate meds. But I wanna believe they're helping....myabe I'm falring b/c I'm going to have my period.

    Oh...it's just a lot, you know?

  • #2
    You sound so much like me...I can keep my ic under control much of the time and function in life, but every once and awhile a flare throws me for a loop. My guess is that it could have been either or both the intimacy or the soup. For me, it's stress!

    Anyway, hope you are feeling better. I had been doing well on antihistamines and the occational xanax when needed, but finally broke down and started elmiron about a month ago. I'm feeling much better (knocking on wood as I say that), but don't know if it's the meds or just time and diet getting me out of the flare. Probably a comination of all three. By the way, only you can determine if you need a hydro or not. I've opted not to have them because I worry about causing more pain. IMO meds are usually reversable, but the surgery is not. However, they have helped others.
    mom_in_ma

    Comment


    • #3
      hi

      I'm so sorry you've had such a rough go of it lately.

      But hmmm, what stood out to me what that you're only on 100mg of Neurontin. It is my understanding that the "goal dose" is 300-1200mg three times a day. I just started Neurontin on 4/2/07 and took 100mg 3x/day for the first week, 200mg 3x/day for the second week, and 300mg for the thrid week. I could tell a HUGE difference as soon as I jumped from 200-300 about 3 days ago.

      Prior to 3 days ago I was using 4-5 vicodin per day and now I'm immediately down to 2-3. My doctor wants me to continue increasing it each week until I don't need the vicodin. (I just started the vicodin about 2 weeks ago so I'm not concerned about addiction or tolerance YET).

      I read somewhere, but don't remember where, that a lot of ICers need 900mg 3x/day to get relief. However, I think I might be able to ditch the vicodin all together in a few weeks with maybe only 400-500mg 3x/day of the Neurontin.

      Anyway, just thought I'd share my thoughts on your Neurontin dosage.

      I wish you much luck and hope you feel better really soon. Take care.
      Lee Ann
      Current Rx Meds:
      Atarax, Ditropan, Elmiron
      Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
      Hooray for babies!
      Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
      Didn't work for me:
      Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
      IC (Mod-Severe) since 1996

      UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


      My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

      Comment


      • #4
        oh yeah

        And also I have found that I need more than 25mg of hydroxyzine....I started with 50mg and over a few months built up to 100mg at night and 50mg in the morning.

        And spirulina? Hmmm...I haven't heard of that one. I'm gonna have to check into that.....I know I've seen it at healthfood stores.......
        Lee Ann
        Current Rx Meds:
        Atarax, Ditropan, Elmiron
        Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
        Hooray for babies!
        Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
        Didn't work for me:
        Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
        IC (Mod-Severe) since 1996

        UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


        My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

        Comment


        • #5
          Do you get seasonal allergies? If you do, that could be leading to some increase in symptoms. It leads to flaring for some ICers. The antihistamine would help with that - can take a few weeks to really start helping.
          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
            Spirulina is thought to restore the lining of the bladder naturally.

            My doc originally prescribed 300mg a day, but I got scared- I am usually anti-med...if I eventually up the dose, does the drowsiness go away after an adjustment period?

            By the way, Mom-in_Ma, I am in MA as well.

            Comment


            • #7
              hydroxyzine

              Well yes it does make me drowsy even though I've been on it for FOUR years. I did adjust to it a little, but it still makes me tired. That's why I only take 50mg in the day and 100mg at night. When I'm feeling really lousy I'll take 200mg at night. My doc told me to do that only occassionally. Or else I'd take 200mg permanently!! I know what you mean about not wanting to take too many meds. I was resistant as well. Up until recently I used only the hydroxyzine to control symptoms. But even then, I was peeing 30 times a day. Since this awful flare began 6 weeks ago I actually feel better NOW than before the flare, now that I'm taking these meds. Today I was down to only 15 times on the potty!!! Now that I'm feeling better, I'm not going off of them! I wish I would have tried them sooner. (I have mod-severe IC). I too, kinda hate to be on so many medicine. I feel like I'm giving my power away. But they *do* work, so ..............
              Lee Ann
              Current Rx Meds:
              Atarax, Ditropan, Elmiron
              Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
              Hooray for babies!
              Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
              Didn't work for me:
              Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
              IC (Mod-Severe) since 1996

              UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


              My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

              Comment


              • #8
                I suggest you read the information at http://quackwatch.org/search/webglim...uery=spirulina before you spend your money on spirulina.

                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

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