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  • Well, I started Topamax!

    I added Topamax to my routine last night. I took it a few hours before bed because Moonheart said it could be sedating or energizing...

    Verdict... boy was it energizing. I felt like I was on a caffeine rush. My heart was racing a bit and I was flying around my apartment doing stuff. I was able to fall asleep around 1:30am and got a phone call around 9:30am that woke me up. So, it didn't give me insomnia or anything... but I woke up and am still on that same "rush". It feels dangerously close to an anxiety attack, so I have to be careful to not let my mind trick itself into thinking that. I wanted to feel less fatigue, but I don't want this caffeine buzz permanently! I wonder how many days until it calms down...

    They started me on 25mg and in 2 weeks I have an appointment with lab work.

    I sure hope this helps me! So far, no concentration or memory issues. If anything, I am more intense at doing things, focusing harder than I have been the last several months with all these IC meds. My Atarax may have that benefit to calm me down a bit. I have a liquid form that I take 3 times per day but cut it back to bed time because it was making me groggy during the day. I took it this morning for sure! LOL!

    Wish me luck on Topamax!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  • #2
    It did the same for me at first at 25mg then it calmed down..Then when I went to 50mg well there I went again, but it subsided to, thats why I am glad I am going up slowly. I could not of handled it all at once..Glad you are going up slow to. GOOD LUCK! ..

    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'm glad to hear it calmed down for you! I have had anxiety attacks before (due to overloading my body with caffine... 8 cups of coffee every day in high school) and this isn't a good feeling per say. It's not quite the same feeling, but the rapid heart rate and faster breathing made it feel like anxiety. Again, glad to hear it doesn't last! I'll be on 25mg for 2 weeks then discuss increasing it if need be!
      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

      [

      Comment


      • #4
        If possible when you get like this just relax.. I would just sit down for a few min and take a few deep breaths..Take a deep breath through your nose and exhale through your mouth slowly..Thats if it gets to bad..That only happened once for me, but that was because I was cleaning so much and would not stop..lol.. I learned my lesson on that one...Take care

        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
          ...

          Yeah it kind of gives me this weird quivering feeling in my abdomen and chest but it doesn't bother me. I sometimes put my husband's hand on me and say, "Can you feel me shaking?" He can never feel it. So it's either subtle or it's just my imagination. LOL.
          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


          • #6
            Well, the second night was not nearly as energizing!
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

            Comment


            • #7
              that's good

              That's good Alyssa,
              I'm crossing my fingers that it will work just as good for you as has for me. And that we don't build up a tolerance to it..........
              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


              • #8
                well i am glad its not as bad tonight
                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


                • #9
                  Originally posted by leelee88 View Post
                  If possible when you get like this just relax.. I would just sit down for a few min and take a few deep breaths..Take a deep breath through your nose and exhale through your mouth slowly..Thats if it gets to bad..That only happened once for me, but that was because I was cleaning so much and would not stop..lol.. I learned my lesson on that one...Take care

                  Ronda
                  ROFL!!! Remember the post where I was gardening and you were like "Slow down Moonheart, your making me tired!!!" ROFLMBO!!! :woohoo:
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #10
                    Ok... so you said that Topamax can be a diuretic? My frequency/urgency is worse. It's been 3 days. Is it a temporary thing? I'm going as often as before, but the volume has increased drastically and so the urge has increased drastically.

                    I'm scared to keep taking this... each day has been worse...
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

                    Comment


                    • #11


                      Oh no! This didn't happen to me. I didn't know it was a diuretic. Is it really? I never heard that. Topamax doesn't do this to me. When I first started taking it I had my doubt but it turns out I had eaten a soup that had an ingredient in it I was reacting badly to. I just looked it up in my 2002 PDR and "micturition frequency" and "retention" are listed as side effects so it's possible that it is causing this. I'd call your doctor if I were you. Oh man, I was really hoping it would help you.
                      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


                      • #12
                        Yeah, Moonheart was telling me it can be a diuretic. It makes me have to go the same amout, but the urge is stronger because the volume is larger...

                        I just don't know if it is temporary...

                        It has been noticeable the last 3 days... and today was the worst, but I did try ranch dressing last night. But even so, I have noticed it being a bit "worse" the first 2 days and each night I haven't been able to sleep through like I have been able to with my Atarax (still on it BTW).
                        [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                        [

                        Comment


                        • #13
                          Born2swim,
                          How is your pain level?
                          Mine is gone so far with the Topamax and yes my frequency and urge was very high at the beginning just as Tig-gal and Moonheart. I was about to call it quits but they both said all medicines take time.. So I stuck it out.. The urge has gone down. the frequency is about the same as before the Topamax, but the biggest plus is when I went to 50mg and the pain decreased so much...If I was you I would try it a little longer but if you keep haveing the same affects then give up and you can say you gave it your best shot..((((((((((((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


                          • #14
                            Ronda,

                            Honestly, I don't have pain outside my period or running. I just have to pee all the time. My urge to go is so bad right now because the volume of my urine is higher. They say to drink more with Topamax, but I'm not drinking THAT much! Geeze! I feel like I could cry today because it is driving me nuts. Also, I can tell I'm "feeling" the drug a bit in that my eyes feel heavy and when I move them, they move slowly to the object I move them to. That's it in terms of side effects so far (that and I feel warm, but that could be Florida heat too!).

                            I just need this urge to go away! I'm on 25mg for 2 weeks then I see my doctor in 2 weeks for bloodwork and to talk about the med. I just read that Topamax can lead to B12 deficiency, which is bad because I am already deficient and on shots. So... I have to be careful with that on top of the other side effects.

                            What vitamins do you take... sorry off topic... but I'm trying to find something to take. I have been doing a Flintstone vitamin here and there to just give my body a boost, but I can't do that when I'm having a bad day like this!
                            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                            [

                            Comment


                            • #15
                              ok so you are just trying the Topamax for urgency? you dont have pain with IC? And I am not on any vitamins because except calcium..
                              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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