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  • #31
    Originally posted by jen74 View Post
    Hi Moonheart.
    I am so happy for you!!! Now is topomax only given to treat migraine headaches or is it being used to treat IC as well? I would be willing to give it a try if it can help with the IC pain. I hope this continues to work well for you.
    Sorry Jen, the whole family came down with stomach flu! Actually, my son had it a few days ago and I thought he was faking and made him tough it out at school I'm a baaaaaaaaad....baaaaaaaaaaaad....mommy.

    So anyway, I had the bad belly ache all day and was confused at first because I wasn't sure if I was having pelvic pain again or what.

    Jen, Topamax has many off label applications. It's original use is for seizures, but it's being used for bipolar disorder, other mental disorders, migraines, weight loss, fibromialgia, and I've heard several cases now of IC! It's really turning out to be a miracle drug! Thank God!


    • #32
      Originally posted by Breezy1218 View Post
      I started my 100mg dose a couple weeks ago, and I've been taking all of it at bedtime. I was down 5 lbs this morning! I could handle this keeping up, for sure! It's hard to say how it's helped pain-wise, since I've had my period for ten FREAKING days, and with my endometriosis on top of the IC, it's always very painful no matter what I take for it. I am almost out of pain meds so it had better stop soon, I cannot refill for quite a while yet. Hopefully when it's done I will see some positive results from the Topamax, since the Neurontin didn't do anything for me.
      Hi Breezy!Isn't it exciting to see the scale go down?! I have only seen the scale go up for the last two years! It's been awful!

      I've only actually measured, but I can't wait to actually weigh myself.

      I have endo as well, and had a total hyst for it. I thought it hadn't died off because all my pain came back four months after my hyst. Well turns out it was IC and my hell began. So it's a miracle to have this work for the IC when nothing else really has, not even narcotics.

      How are you taking the Topamax? I wish I knew if there was some magic formula or something. Have you tried not taking any of your pain meds to see what happens? Then taking your meds if the Topamax doesn't work? I hope this starts working for you!!! I hope it does!!!!


      • #33
        I've been on Topamax for more than a year or so, and lost almost 45 lbs, (most of that was due to an illness from last year; but I haven't gain any back) went from a size 14 to a size 8-10. I now weigh about 130lbs. (haven't weighed this since my first son was born 23 years ago!) Reason I got on Topamax in the first place was due to balance problems- fluid in my brain. I take 150mg at night. Too bad it doesn't help with my IC pain!. Glad though it helps you. Question Wendy, do you take all of yours at night, or do you spread it out during the day? Maybe I need to do that? Let me know. I might need to talk to my doctor and get this changed around.


        • #34
          I take mine all at night. I'm out of meds today. My doc didn't tell me she was sick and I drove an hour each way for my pain meds. I'm on 120mg of MS Contin so even though I don't really need it for IC pain I do have some various pains it helps with, and it helps keep withdrawals away. So I'm having withdrawals tonight and it's miserable.

          I have lost 30 pounds! Yay me!

          I'm going to be back on after I feel better k? Hugs all!
          Last edited by Moonheart; 05-24-2007, 04:40 AM.


          • #35
            Could you all pray for me this morning that my doc will see fit to not hassle me about writing my script?

            This is my regular appointment, but the office manager is hassling her for some reason and I'm just worried about it.

            Thank you all for thinking about me.


            • #36
              You got it hun... Prayers on its way

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

              Link to Patient Handbook:

              Diet Reference Sheet:

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


              • #37
                Thanks hon, I'm so worried. I don't want to be, but last night was pretty awful and stressful with the office manager. Between the flu and just the touch of withdrawals, I honestly don't feel like driving an hour down to get these meds. But you know. When you're stuck between a rock and a hard place?
                I'm not suffering the worst I could, God willing, but I sure don't want it to get any worse! I think Topamax is helping with that. This med is amazing. It's listed even as helping with withdrawals. Wow.


                • #38
                  I hope you get your meds all right, Moonheart (or did, since it's Saturday?). I suppose you would have to drive anyway, since they can't call that in, or do you mean get it from a different doctor? Sorry that I am not very up on the story!

                  For other reasons that I won't go in to at the moment, I am going to be upping my Topamax to 200mg a day, and will continue to take it all at night. I hope that it continues to help my pain (and the weight loss...ha). I've had my period for two weeks and REALLY need it to end so I can see how it is helping for the daily pain!
                  32 years old

                  former Med/Surg RN

                  endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008