No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts

  • Miracle!!!!!!!!!!!!!

    Well I'm about to cry.

    I was on a medication that is a seizure med, called Topomax, about 2 or 3 years ago. It worked wonders for many things incluing my bladder pain, which I didn't know at the time was bladder pain.

    Well, I went off it for some reason and over time my pelvic pain got worse and worse, I had a hyst, and things spiraled out of control.

    Last year I asked my Gen. to put me back on the Topomax because I'd gained about 50 pounds and the Topomax makes you lose weight. She refused. I was upset.

    This week I asked again and low and behold, she said YES!!!!

    Well guess what?!!! My body pain is GONE GONE GONE!!!!

    And my IC pain.........................almost totally GONNNNNNEEEEE!!!!!!!!!!!!!

    I still have some pain, but the amount of time between doses of morphine is so extended I'm really going to have to start tracking what is going on! It's a miracle!!! I'm so excited!!!

    And that is only on 50mg of the Topomax!!! I still can go up to about 200mg.

    Oh, and I've already lost about 10 pounds in just a few days! Crazy!

    Just thought I'd share the good news. The weight is great, but the pain relief! A miracle from heaven!!! :woohoo: :woohoo: :woohoo:

  • #2
    :woohoo: I am so happy for you. :woohoo:

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    IC 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.


    • #3
      Thank you Sharon!

      I just took one of my MS Contin after I think 13 or 14 hours, I'm not even sure. But I'm not in pain. I'm just not wanting to let it get out of control, or go through withdrawals. I'm going to take another one tomorrow night, even if I'm not in pain, just to taper down. Not wanting to have yucky withdrawal symptoms just because I'm not in pain. Wow! I'm in total shock. I haven't had this little pain even taking my full dose of pain meds, ever!
      I'm so happy! It's like the first time I can't even feel that my bladder is there.

      There are side effects to the med. It's called Dopomax for a reason. But it's totally worth it. I will put up with anything for this heaven.


      • #4
        I'm glad you've found something that is working for you!!!!! Isn't it great to not have to think about your bladder all the time?! Hope it continues!

        Is Topomax the med that they sometimes use for migraines? Sounds familiar.


        • #5
          Wow I am so happy for you:woohoo:

          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.


          • #6
            wow how wonderful. I am very happy for you
            'The will of God will never take you where the Grace of God will not protect you.'


            • #7
              Yep, the migraine med. So as of right now I can honestly say, no migraines, no fibro pain, and no IC pain AT ALL!!! omg!!! I'm so happy!!!! This topomax makes me a little cranky, and a little mellow, off and on, but I don't care! I feel so darn good!!!

              Oh, and I have to be totally honest. I'm so darn sleepy I can't wake up. I have been sleeping all day. But I don't really care about that either, LOL. I would do anything to be pain free.

              I hope everyone can try it and it works for everyone!!!


              • #8
                That's wonderful news:woohoo: I am so happy for you. I am glad youfound a med that works. I hope your relief is permanent.

                Let's keep praying for a cure.
                IC Symptoms began in early 2001
                Divorced : Sept 2002 (Partly due to IC)
                Diagnosed with IC in April 2004
                Most recent injury - Rupurtured Left Achilles Tendon
                Wed Jan 28 2009
                (Ice Storm Accident)
                2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                Other Injuries
                Broken Left Ankle - July 2004 ( fell off ladder)
                Broken Left Ankle (Again) - May 2005 (car accident)
                Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                CURRENT MEDS
                Elmiron, Pyridium


                • #9
                  Thanks so much!!!! When I was on it before, I was only on 20mg of Oxycontin a day! Wow!


                  • #10
                    This is such awesome news Wendy!! I've read some of your posts about how out of control your pain was. It's sooo nice to hear that something is working so well for you.:woohoo: :woohoo:

                    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                    I have tried every oral medication as well as rescue instills and DMSO.

                    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                    Also proud mom to the best Bullmastiff on earth, Claus


                    • #11
                      :woohoo: :woohoo: :woohoo: Good for you! Hope you go to remission! Sending remission thougths your way!
                      Mia Sowell
                      Fort Worth, TX
                      2 Kids
                      Ethan (3)
                      April (17)
                      Husband Eric (Very Supportive)
                      Clinically Dxed 04-16-07
                      Symptoms Since 2004

                      Elmoron 400mg 2x Day
                      Atarax 50mg 1x Day
                      Xanex .50mg 8 hrs As needed
                      Vicodin 5/500mg 4-6 hrs As needed
                      Xanaflex 4mg 1x Day
                      Urelief Plus 6 hrs as needed for Bladder spasms
                      Prelief as directed


                      • #12
                        That's wonderful! I've heard some people do have great results with that medicine - good for you! I'm so glad to hear you are doing great!



                        • #13
                          I used to be on topamax for seizures and migrains. I lost 60 lbs! Of course, I've gained most of it back now that I'm not on it. I'm not sure if it helped my bladder, because I was on so much other medication. I would like to give it a try again.


                          • #14
                            That is wonderful news! I am so happy for you! I am on Topamax also, I started it recently, he just increased my dose to 100mg daily. He said I could take 50mg in the morning and 50mg at night, or all 100mg at night. I've been doing the latter; I don't want to be too spaced out and tired during the day. I haven't lost any weight yet, but I am hoping to have that side effect as well, I sure wouldn't mind. I also have a problem with headaches, and hope that it helps that.

                            I hope your relief continues!!!
                            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


                            • #15
                              I am so happy for you that this medicine is working well for you. My husband took this medicine because of lower back pain and it did help him. They use this medicine for different things now, andI am glad it helps your bladder and other aches and pain. Just feeling good without all the pain is wonderful.

                              Sending hugs, Trishann