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  • #31
    Mary I take Topamax and Neurontin 900mg. twice a day with no problem.

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

    Comment


    • #32
      Hi, Do most of you take topamax twice aday or once what dose is most commom? What do you do do for the thingding? How do you get relief? That soungs terrible. Thank you, violet

      Comment


      • #33
        I was told the opposite, that there weren't hardly any drug interactions with it.

        Neurontin has a side effect of weight gain that I think would nullify any weight loss of Topamax.

        What's the thingding that you're worried about violet?
        http://www.TheCraftyEwe.etsy.com

        Comment


        • #34
          Topamax was originally used as an anti-seizure medication. It is approved for bi-polar. The side effect that most experience is weight loss. It is no longer recommended because it causes osteoporosis. Most MDs no longer Rx it because of this connection.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #35
            retention?

            Is anyone taking the Topamax experiencing a worsening of symptoms?

            I can't tell what is going on. I seem to have several hours of retention-like symptoms where I need to pee but can only pee a little. But I am going to the potty about 40 times a day, which is about 15 times more than normal. However I just realized that jalapenos were in a soup I was eating and didn't realize it----and I've had a serving at least once every day this week. So I don't know. Maybe it was that. ???

            Anyone w/ negative experiences while on Topamax?
            Lee Ann
            Current Rx Meds:
            Atarax, Ditropan, Elmiron
            Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
            Hooray for babies!
            Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
            Didn't work for me:
            Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
            IC (Mod-Severe) since 1996

            UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


            My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

            Comment


            • #36
              Originally posted by L. Thomas View Post
              Topamax was originally used as an anti-seizure medication. It is approved for bi-polar. The side effect that most experience is weight loss. It is no longer recommended because it causes osteoporosis. Most MDs no longer Rx it because of this connection.
              I'm finding the osteo, but not that docs won't prescribe it, just keep up with your calcium. Since it's well known now that calcium doesn't cause kidney stones, but rather a lack of it, it would help to take calcium with Topamax to preven stones and osteo.
              Last edited by Moonheart; 06-03-2007, 10:27 PM.
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #37
                Originally posted by LeeAnn View Post
                Is anyone taking the Topamax experiencing a worsening of symptoms?

                I can't tell what is going on. I seem to have several hours of retention-like symptoms where I need to pee but can only pee a little. But I am going to the potty about 40 times a day, which is about 15 times more than normal. However I just realized that jalapenos were in a soup I was eating and didn't realize it----and I've had a serving at least once every day this week. So I don't know. Maybe it was that. ???

                Anyone w/ negative experiences while on Topamax?
                I had jalapenos also last week and I had a flare to end all flares, DESPITE the Topamax!!! It JUST ended! YUCK! That was NOT fun!

                Now I'm back to my happy go lucky self where I can almost take or leave the pain meds. Thank God!
                http://www.TheCraftyEwe.etsy.com

                Comment


                • #38
                  Does it help your migraines too??

                  I want to take it primarily for migraines and also need an alternative to elavil (really helped me) as had to come off due to palpitations. still taking 5mg of elavil.
                  I am also taking pizotifen for migraines but put on a lot of weight since starting that so keen to have an alternative migraine med!

                  yes imitrex and all triptans flare me BIG time, so really want to find something that helps prevent them!
                  IC diagnosis: Aug 2005
                  Symptoms: Urgency, urge and irritation and urethral symptoms
                  Flareup for 1 year til July 2007 (had constant urge and pain et al....)

                  Elmiron 100mg 3x daily April 2006 - present
                  Enablex 7.5mg nightly Sep 2007 -present
                  Atarax, Elavil 10mg nightly (Dec 2007)
                  Acupuncture - November 2007 - present

                  (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

                  Comment


                  • #39
                    Sweetangel,

                    I have not been on it long but I have migraines to and so far I have not had one and I usually would get one bad one a month.. I will keep you informed
                    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


                    • #40
                      Hi! Everybody Topamax is used for migraines. Violet I take 100mg. of Topamax twice day. I use that medication for my clitorus pain not my IC pain.

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

                      Comment


                      • #41
                        Deborah: I was just told by the pharmarist (?) and by my doctors (primary care & neurologist) that I couldn't take both of these meds together (topamax and neurontin) as they interact- you need to read the insert of the medication or ask the pharmarist(?) next time you get it refilled.

                        Comment


                        • #42
                          Leslie...How is it going with you?
                          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


                          • #43
                            Hi, Thank you for answering me. tomorrow I start 50 mg twice a day. I have mosyly burning and shooting pain down there so the doc put me on topamax. So far it has not helped. I hope a higher dose helps. Did you get any tingling on your hands or other parts how did you cope with it? Thank you violet

                            Comment


                            • #44
                              topamax

                              I'm on 50mg right now and so far I'm having tingling only in my lips. It's very slight and I barely notice it. I'll be increasing my dose to 100mg in another week. I only take it once at night.
                              Lee Ann
                              Current Rx Meds:
                              Atarax, Ditropan, Elmiron
                              Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                              Hooray for babies!
                              Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                              Didn't work for me:
                              Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                              IC (Mod-Severe) since 1996

                              UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                              My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

                              Comment


                              • #45
                                LeeAnn,
                                How is the retention?
                                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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