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Day #2 on 50mg of Topamax

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  • #1

    Day #2 on 50mg of Topamax

    I am happy to report pain is only at a level 2 today and like I said that is nothing for me..I am hoping this will continue.. I have noticed my frequency has gone up, but dont no if thats from the meds or because I have increased my water intake..Will keep you 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.
    Tags: None
  • #2
    I'm glad to hear the topamax is making you feel better! Besides the frequency are you having any other side effects?
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

    Comment

    • #3
      That's great Ronda, I'm so happy that you're feeling so much better pain wise!:woohoo:
      Christine



      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

      Comment

      • #4
        Sandy,
        I am just more tired, but I have heard this is normal until I get use to the medicine oh and I have lost 8 pounds which for me is a great side effect..
        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

        • #5
          I think I need to take Topamax just to lose weight! lol I do find with the Elavil that I want to eat everything in sight some nights.
          Christine



          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

          Comment

          • #6
            Oh Christine,
            I wanted to eat EVERYTHING!!!! On Elavil..lol it was like I had to have it..So strange...
            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
              So how is Day 3 going? Or will it be Day 4 when you read this? I do hope you get better and better results.
              Sharon

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

              Where I can be found most days.



              Link to the ICN Patient Handbook:
              http://www.ic-network.com/handbook/

              Link to the IC Diet:
              http://www.ic-network.com/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.

              Comment

              • #8
                Watch the weight loss! I have lost 60 pounds in 3 years. Now I'm to the point that I don't need to lose any more weight-- at 5ft7in (128lbs) I'm almost too thin as it is. My family doctor is about to take me off of it. But he has to talk to my neurologist to see what he can be me on.
                (p.s. I haven't weighed this since my first born was just a baby and that was 23 years ago!!) --don't know if that good or bad??)

                Comment

                • #9
                  Hi, I am also on 50mg I haven`t lost any weight , are you watching what you eat or are you eating what you want maybe I am eating to much. As for the pain I really need it higher it doesn"t `t help me enough for me to be comfort able. I still have to take lortab almost every day. I will keep trying ,hoping it will start to helping me, I have been on 5omg for 5 days now thank you violet

                  Comment

                  • #10
                    feresp,
                    I am just not hungry, I have to make myself eat..

                    Sharon, I think its day 4..The bladder pain is still gone BUT the clitoral pain is coming back, I thought the Cymbalta was helping that but I guess it was the elavil to .. I think I am going to see if I can just go on a low dose of elavil like 10mg and see if that helps.. I think I can live with being over weight I CANNOT live with that clitorial feeling you know it was driving me crazy..

                    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

                    • #11
                      your one of the luck ones who dod not gain weight on it. I gained a few pounds, but only was on it for a short time do to side affects.
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment

                      • #12
                        Ronda. On 50 mg I still get lots of clitorus pain, so thats why I wnt to get on 100 mg quick.. I took a LORTAB AND 1O MG ALAVIL today to help with the pain I hope tomorow is a better day. Moonheart how much topamax do you take? thank you Violet

                        Comment

                        • #13
                          I've been on Topamax for 4 years...started to control migraines...and at that time they didn't realize how bad it was at high doses and i was all the way up to 500 mgs!!!! needless to say, I couldn't remember my own name. I stopped taking it for a while but went back on because of nerve pain and he had me at 200 but I dropped it to125 b/c I was just too sedated with my other meds. And yes, I lost 80 pounds in 7 months...unfortunately, over a 1/3 of that weight came back on so, but I have to control my diet so I can keep diabetes away. anyway, it is a good med but it makes you forget stuff very easily, especially the higher you go. I used to tell my husband, each increase I could feel my IQ drop by 10 points.

                          Good luck to you....It is very good for nerve pain.
                          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                          Medications I CURRENTLY take:
                          90 mgs Ms contin (45 mgs Am/PM)
                          Percocet as needed
                          Topomax 100mg day
                          Ambien 10 mg bed
                          desipramine 25 mgs




                          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                          Albert Einstein

                          Comment

                          • #14
                            Hi guys!

                            I'm on 100 mg a day and have complete migraine relief, complete clitoral relief, VV relief, bladder relief, frequency is 2-3, max of 4-5 times a day with infrequent flares.... Tracey, I think you were actually on too high of a dose of for migraine relief. I've heard it going the other direction at that high of doses for migraines. I have heard many people getting migraine relief like me at 50mg.
                            http://www.TheCraftyEwe.etsy.com

                            Comment

                            • #15
                              moonheart, thats great thart you are doing so good on so low a dose. I don,t do well at all on 50 mg i know I have to go to 100, as a matter od fact i was in so much pain this morning I took a 5o at 5am then the pain wasnt gone at 9am i took another 50 at that time I feel better now but I still have the frequency. Tonight I will take the full 1oo together to see how I feel. I will let you know. I wish the frequency would go away, I really don,t have to go I just have a little bit when i go. Is that how you were? hank you Violet

                              Comment

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