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  • Topamax for pain

    I know that a few of you are taking Topamax and have had great results with it! I have a few questions!!! How long did it take to help with the pain? How long does the side effects last and how bad were they? I had bad nausea the first time I took it and I have not taken it since. How long did it take before you noticed weight loss? I know that a side effect is lethargy and I was wondering if it affected one getting up early in the morning for work or ability to drive? I do not want to give up on this med yet but I do not have weeks to wait for the side effects to wear off and I certainly cannot lay in bed all day! Oh yeah very important, did it cause you urinary frequency? That is another reason I am afraid to take it again! I was in the bathroom all night! Sorry about all the questions!!!! And thanks so much!!!!!

    Jessica

  • #2
    Jessica,

    It has helped some with the pain but not near as much as elavil, but I am only on the minimal dose. I am going Tuesday to get it increased to 50mg.. I have had no side effects from 25mgs.. It is helping with my frequency and as far as weight I have lost 8 pounds in 2 weeks :woohoo: I get hungry but when I start to eat I seem full so I push it away..I am so excited about that..I am hoping the 50mg will help more with my pain..I have noticed that my body aches have went away I truly believe I have Fibro..So we will see.. Please keep me informed..

    Ronda
    Hugs
    Ronda

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

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    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.

    Comment


    • #3
      I think I'm going to ask my Rheumatologist if Topamax would help me with my body aches. I'm on Lyrica now and have gained 13 pounds on it! It sucks! But it does help with the pain.....but I can't continue to gain so rapidly like this......ugh!!!!! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        Originally posted by leelee88 View Post
        Jessica,

        It has helped some with the pain but not near as much as elavil, but I am only on the minimal dose. I am going Tuesday to get it increased to 50mg.. I have had no side effects from 25mgs.. It is helping with my frequency and as far as weight I have lost 8 pounds in 2 weeks :woohoo: I get hungry but when I start to eat I seem full so I push it away..I am so excited about that..I am hoping the 50mg will help more with my pain..I have noticed that my body aches have went away I truly believe I have Fibro..So we will see.. Please keep me informed..

        Ronda
        Ronda, isn't it amazing that the body aches just went away like that? :woohoo: Mine were gone just like that! Crazy! I think I've levelled off with the weight, but I'm not sure. I know I lost somewhere around 40-50 all at once, but that makes sense because I'd gained that much all at once when I went off of the Topamax a couple years ago. All fluid retention I know.

        Except for a flare I had last week, I've bee all good the whole time! I had to take full doses of my MS Contin during the flare and now I'm getting back to before where I could not take it or only take half a dose if I want. It's just wonderful!

        http://www.TheCraftyEwe.etsy.com

        Comment


        • #5
          Originally posted by Roxie2007 View Post
          I think I'm going to ask my Rheumatologist if Topamax would help me with my body aches. I'm on Lyrica now and have gained 13 pounds on it! It sucks! But it does help with the pain.....but I can't continue to gain so rapidly like this......ugh!!!!! Roxie

          Oh I hope you get it and it works for you!!! I have NO body pain now! NONE!

          I was out in the garage cleaning the WHOLE garage in just two hours Friday evening. Then this evening, I helped the kids mow the lawn, I trimmed hedges, pulled weeds, transplanted my tomatoes, oh my goodness! I haven't done this much in ages! Tomorrow/Today, I'm hoping to get up early even though I'm in this bad habit of being up all night from the all time flare, and I want to get out in the garden some more ( I have wild strawberries ) and take pictures to do more designs on the t-shirts etc... and get the current projects finished.
          http://www.TheCraftyEwe.etsy.com

          Comment


          • #6
            OK OK Moonheart slow down you are wearing me out...
            I am having a terrible flare today dont know what set it off, I really hope the 50mg helps.. I know its working though because before the flare started I was feeling pretty good.. I think it was what I ate this weekend hotdogs..I knew better..lol..Now today water water water uggggg...

            (((((((((((hugs)))))))))))

            Ronda
            Hugs
            Ronda

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

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            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.

            Comment


            • #7
              LOL! Sorry hon! But you know you'll get through it right? You did the same thing I did didn't you? Silly me eating jalapenos and all just because I felt great. And then to top it off? I made Thai food!!! What was I thinking?!!! LOL! Boy did I suffer!

              So now, I'm back to normal, eating yogurt everyday (it's okay for me for some reason) and being a good girl and taking my Elmiron which surprisingly is what brought me out of the flare. I never take it, then took one dose and bye bye flare! Wild!

              Okay, anyway, yet again I've been up all night (are you sensing a pattern here?) and hopefully I'll get something done today and won't sleep the day away. I hate those days, where I stay up all night then sleep all day. I'd rather be up all night and work all day. At least I feel like I got something done.

              Hon, I'm sending Anti-Flare Vibes your way okay? Think of the "Open...open...open" lady from those commercials? Did you ever see those?

              Anyway...go lay down with some water and a pack of whatever makes you feel better k?

              Love ya!

              Moonie
              http://www.TheCraftyEwe.etsy.com

              Comment

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