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Anyone NOT HELPED by Elavil?

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  • #16
    Thanks for all of your nice notes. I had another case of rapid heart rate yesterday right in my doctor's office. My resting heart rate was 130 and it should be 80. She said that was high and asked if I was nervous. At the time I was not in a flare so I said no, not really. So, my thyroid was extremely high a few years ago and I've since gone off those meds. They tested my thyroid yesterday and last night I had another what I think is a panic attack. But I guess the signs of a panic attack and having an overactive thyroid are the same. I just want them to find an answer soon. In the meantime, they've put me on Prozac and Kolonopin but they put me on the lowest doses and are only letting me take the Kolonopin twice a day which is not that helpful.
    Well, thanks for listening. Any ideas on how to get through a panic attack, if it is that?


    • #17
      I started Elavil about four days ago and the first two days were great, I was so excited then it started yesterday-running to the bathroom to pee every 30 minutes. Today has been horrible. I think I might have to join the can not take Elavil club. I am so depressed, I just want to sit and cry. I can't seem to take anything, I don't even know what to try now, what is left? I took an AZO to try to help, but so far all I have is orange pee!!!!!! HELP!!!!!!!!


      • #18
        It took some time to work consistently for me

        The first week I started Elavil at 25 mg nightly. I had two or three terrific days, then the pain, frequency and urgency came back. So I went up to 50 mg the following week (my doctor's instructions were to do 25 mg for one week, then go up to 50 mg if needed, then after another week up to 75 if needed). I had less symptoms, but still not perfect. After two weeks I went up to 75 mg and have been there for about five months. I have just gotten better and better, with longer times between flares.

        I would agree with others who have said it took about three months to really work. At about the three month mark I was definitely having many more good days than bad. I've gone as long as three or four weeks without a flare, and my flares are much more tolerable. I think I've probably only taken 5-6 pyridum this year, which is a good indicator for me of how well I'm doing.

        So, Dette, my advice would be not to give up if you can tolerate it -- and talk to your doctor about your dosage. Some get immediate relief, but for others it takes time. Wishing you well!

        Last edited by jjt001; 03-21-2007, 03:30 PM.


        • #19
          i'm on 25mg of elavil at night and to be honest, it does nothing but make me tired. i'm not really sure why the heck i'm even on it because i really dont have any pain problems some days itll make me so tired that i feel like i'm on sleeping pills and other days i can't tell a difference at all. i've also noticed that i prolly shouldnt be drinking on makes me pass out cold after like 2 drinks. *sigh* good luck!
          I've tried:
          Detrol LA
          dmso and heparin instills


          • #20

            I was taking elmiron & elavil.
            but then my hair started to fall i quit the elmiron...
            still felt fine..for weeks (bladder-ily speaking)

            but the hair loss i freaked out..and quit the elavil too.
            now my symptoms are starting to creep back up.

            i had no idea how much the elavil was helping me.
            i saw a dermatogist..she said she never seen a case of elavil causing hair i went back on it last night

            25 mg
            Quit ELMIRON due to hair loss
            Cystoprotek ROCKS!

            find me on FACEBOOK -
            search my email [email protected]

            Current Meds:
            AM Cystoprotek & ATARAX 50mg
            Dinner CYSTOPROTEK
            PM Elavil 25mg