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One Week On 50mg of Topamax and doing good.

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  • #1

    One Week On 50mg of Topamax and doing good.

    Ok everyone wanted me to keep them updated.. So here it goes, I am happy to report that I am doing good on the 50mg of Topamax. I have lost 11 pounds in 3 weeks and the pain is almost gone, with the exception I do have small flares..The frequency is not as bad and the urge feeling is getting better.. I have noticed as long as I can keep my IBS-C under control then my bladder usually behaves to..So I am giving Topamax a thumbs up for now..

    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
    :woohoo: That's awesome Ronda!!!!!
    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

    • #3
      Ronda,
      I am sooo happy to see this post! I have felt so concerned for you since this pain mgmt nightmare began for you awhile ago.
      When I was first diagnosed, I swore I would become a doctor so that i could help all my IC friends. But then I realized I was too sqeamish!
      I hope you continue to feel better.
      Love Sarah
      Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

      Comment

      • #4
        Thanks so much Sarah..I am keeping my fingers crossed ..I just hope this is for real and im not getting my hopes up for nothing...

        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

        • #5
          Ronda I am so happy for you. It is so good to hear that your pain issues is getting better with your medication and I know losing weigh with it is very good. I hope it continues to work for you. It is such a relief to find the right stuff that does help us. :woohoo:

          Take care, Trishann

          Comment

          • #6
            Lucky girl , Im happy for you:woohoo: :woohoo: :woohoo:
            :Loren

            Current Meds
            Elmiron 300mg tid
            Elavil 25mg at hs
            Atarax 50mg bid
            Tramacet as needed
            Vitamin D 2000 iu bid
            Gabapentin 300mg tid
            Uracyst instillatons one a month

            Comment

            • #7
              i'M glad to hear that. I think I have all the conditions you reported but am on totally different meds. What is Topomax for? How does it work?

              Comment

              • #8
                Originally posted by ABliske View Post
                i'M glad to hear that. I think I have all the conditions you reported but am on totally different meds. What is Topomax for? How does it work?

                Topamax is being used for many different conditions and they are finding more all the time.

                It started out as a seizure medication, then mood stabilizer, migraine medication, now it is being used for fibro, chronic fatigue, and Interstitial Cystitis and many neural conditions.

                It's also working well for weight loss for many. It shouldn't be used only for weight loss, but if you have other conditions then there isn't any reason you shouldn't try Topamax if there aren't contraindications.

                I lost 40 pounds in about the first three weeks, now it's somewhere around 50-60 pounds, but I don't have a scale. I was retaining lots of fluids and it's also a diuretic so it's helping rid myself of fluids.
                http://www.TheCraftyEwe.etsy.com

                Comment

                • #9
                  Thanks Moonheart for explaining that...
                  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

                  • #10
                    Ronda,

                    I'm so happy that you are getting relief with the Topamax! Hopefully I follow suit!
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

                    Comment

                    • #11
                      Wow! It sounds like it really treats a wide range of conditions. I wonder if it'd cause weight loss in someone who was comfortable with their current weight. I would mind losing a little, but I wouldn't want to look too skinny either.
                      Is it classified as a pain killer, antidepressant, or what?
                      Glad to hear you are having good results with it!!!!!

                      Comment

                      • #12
                        Rhonda, have you ask your doctor about taking 100mg twice a day of the topamx? I do take 100 mg twice day and it has been since May of 2004. I amm so happy it is working for you. Have a nice day.

                        Deborah Bush
                        I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.

                        Comment

                        • #13
                          I just want to add my thanks for sharing this info and my congrats for somethhing working!

                          What are the side-effects for you (besides the weight loss)? I work with numbers and have to keep mentally clear.

                          Thanks!

                          Comment

                          • #14
                            My mind is totally clear and my pain is totally under control. I even have days where I can go without my morphine. I just end up taking it to manage withdrawal symptoms. I'm going to be getting setup at the UW Pain Clinic soon and I suspect we'll be working on all of that. A little scary, but if I don't need it all, then it's best to go off of it.
                            http://www.TheCraftyEwe.etsy.com

                            Comment

                            • #15
                              Hello all,
                              Well I am still on 50mg of Topamax I am having better days now.. My bladder is feeling good, but still having the retention, but some days are better..I think I am liking the Topamax better than the elavil..Still loosing weight.. Lost 12 so far but have a long ways to go.. I gained 40 from elavil so it will take time.
                              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

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