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Well, I started Topamax!

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  • #16
    Well, my uro-gyno said I'm the most interesting case he has right now because my pain is endo (by my description and history and hiatus in pain with BCP, but now it's back). My frequency/urgency is how people with IC describe it to him. So, he gave me the IC diagnosis based on the PST even though the cystoscope (on 2 occasions) came back normal. What kills me every day is the urgency/frequency. It interferes with my life in every way. I'm miserible. I feel like I can't go anywhere some days because I don't know where I will be when the urge gets too strong to ignore (I'm just trying my best to ignore it and "train my bladder"). Since the Ultram seemed to dull the urge signal a bit (taking it from a 10 to a 6 or so) they thought maybe a nerve type drug would do the same. So, they suggested Topamax because Elavil is out of the question for me. I really need to take some vitamins... I guess I'll have to research some things on that.
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

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    • #17
      Have you ever been Dg wit PFD?
      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.

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      • #18
        No, they didn't say I have any indication for PFD. They actually said that my muscles seemed good in my pelvis and that my bladder was contracting normally (not overacting). They felt like there is some type of nerve issue going on (my bladder is saying "ouch, ouch, ouch" and my brain is reading that as "go pee, go pee, go pee"). That is why they wanted to try Topamax. Tonight is absolutely terrible. Each night has progressivly gotten worse. I actually had to take Lortab (liquid Vicodin) tonight because I started to get some pain, which hasn't happened outside of my period and running. My urgency is through the roof and I am unable to sleep. I haven't had that since I started the Atarax in April. I really don't know if this Topamax is going to work for me
        [SIZE="1"][B]Be well, Alyssa :hi:[/B]

        [

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        • #19
          If it is bothering you this much I would call the doctor and see if you can stop it and see if the symtoms go away and if they do then you know its the Topamax...I am so sorry.. You know that was my first symptoms to.. I didnt have bladder pain.. I just had the feeling that I had to go even if I didnt.. And the dumb URO did the Hydo/cysto and ruptured my bladder and thats when all the severe pain started. That was last Nov... So I really hope they find something that helps you..To bad you cant take elavil it seemed to really helped me with that nerve pain.. I wish I could take it again..
          ((((((((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


          • #20
            Oh that is just terrible that your bladder was damaged, severely, during the hydro/cysto. It's sad to think that you got worse due to a diagnostic procedure/treatment option. I really hope you improve and stay better on Topamax. Elavil was one of the first meds they put me on, so it's a shame I couldn't take it. It sounded like the best option for me.

            I am going to tall my doctor this morning about the Topamax. Last night was terrible. I had a bad reaction to codeine before (horrendous abdominal pain to the point I couldn't breathe and was taken by ambulance to the ER). So, last night, I was feeling terrible, I had to use the bathroom so bad, the pelvic pain was starting a bit (probably from straining), so I took Lortab (which they gave me for a cystoscope), and that made me so sick. Not as bad as the codeine, but I knew that moving would made the pain worse. I had the same pain, breathing trouble, etc, but I remained still and it passed in about 4 hours, whereas the codeine was 7 hours in the ER and took Dilaudid to squash the pain.

            So... anyways... I'm not in a good place. This is where I was back in January... at my worst...
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

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