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  • Anyone NOT HELPED by Elavil?

    Assuming you haven't stopped the Elavil due to side-effects, has anyone taken Elavil for a substantial period of time and NOT had any relief? Thank you.

  • #2
    I really can't remember if I was helped by them for pain, but my husband made me stop taking them, I was very mean.
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #3
      I wasn't helped with them--I took them for about 6 mos--gained 16 lbs on my small 5' body--but I couldn't take more than 25 mg--they made me to tired with everything else I was taking. I was told by someone that you need to take at least 50 mg for them to help with pain ????
      angie

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      • #4
        It didn't helped me - Elavil upped my frequency a lot and I stopped it....
        I'm german, diagnosed september 2005 with mild IC. Current meds: Elmiron, Uropol-S, IC diet.

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        • #5
          It also didn't help me, Elavil made my pain and my frequency much worse - I tried it at least about a dozen times, hoping it would help, and it only increased my pain each time.

          There is a subset of IC patients, like you and me, who experience increased pain with Elavil (and usually with Atarax, too) instead of decreased pain.

          My only guess is what researchers have been saying - that IC is most likely several different diseases lumped under the same disease name.

          You and I might have a different disease than other IC'ers, even though it's called the same thing and has the same symptoms, and that might account for why we (and several others on the boards) have an atypical reaction to Elavil.

          Blessings,
          Lori

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          • #6
            I'm another one who couldn't take elavil. My blood pressure shot up to just over 210/110 --- dangerous level! and I was "super hyperactive" to go along with it.

            My husband does take it for arthritis pain and his 10 mg dose seems to be effective. And some find that even 5 mg helps with pain.

            Donna
            Stay safe


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            [3MG]

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            • #7
              Donna,
              I had the same horrible reaction to Elavil. I just got out of the ER today because my heart rate was so high. It gave me a horrible panic attack. I go back to see my uro tomorrow. Have you tried any other anti-depressants for IC? I am very anxious right now and feel like I need something to help me through this. They gave me Kolonopin at the hospital so I'm hoping it will help.
              Thanks,
              Kim

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              • #8
                Kim

                What dose Klonopin did they give you take and how many times a day?
                I have been helped a lot with Elavil 10mg which I feel really kicks nerve pain either from pelvic floor disorder or urethral pain and spasm.
                I was also recently given Klonopin 0.5 mg to take at night for sleep. I dont think this has done much for me, but it helped some with frequency.
                Antihistamines like Atarax initially put me to sleep for a few hours, then I woke up and was antsy with restless legs. I also have sleep apnea and was hoping the Atarax would work for me, but it didnt.
                We are all different.
                Sammi

                Sammi

                Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                Diagnosis: IC, PFD (both in remission)

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                • #9
                  Sammi,
                  Sorry to hear that the Atarax and Kolonopin didn't work for you. The Kolonopin helps to relax me more than anything but someone did tell me that it helps with the bladder. The Atarax seemed to help me more in the beginning but not so much now. I think you have to go up more doses but I was trying to get PG so my doc didn't want to. Unfortunately, I'm thinking about giving up on that for awhile until things settle back down for me. Good luck to you.
                  Kim

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                  • #10
                    I almost forgot, Sammi...they put me on 0.5 mg. of Kolonopin and it's not enough to be honest. I'm going to see if they'll up it.

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                    • #11
                      Klonopin dose

                      Yes, I agree 0.5 is kind of useless for me too. The problem with this family of drugs is that you can become used to them and then they dont work anymore and they also fear addiction. Klonopin is also good for restless leg syndrome, so I would think it would work for pelvic floor disorders also. I see quite a few ladies on Valium 2mg three times a day for PFD pain, and Valium is the same family of meds, so why they are so antsy about Klonopin does not make much sense to me?
                      Sammi

                      Sammi

                      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                      Diagnosis: IC, PFD (both in remission)

                      Comment


                      • #12
                        I was on Elavil when i was 1st diagnosed, but I can't really say whether or not it helped me because it practically put me in a coma!

                        Diagnosed: IC-2004' Endometriosis- 2000,TMJ - 2004, Osteoporosis-2005, IBS - 2005
                        Peptic Ulcer-2005, PFD-2005, CFS - 2006, ADD - 1996 Bipolar disorder -2007. Other shinanigans: pelvic adhesions, Migraines, Cluster Headaches, fatigue, stomach ulcers, ovarian cysts, allergies, severe PMS.[/COLOR]

                        Since February, I have had MRSA 7 times, was hospitalized for IV a/bs, and will be taking Tetracycline for the next 6 months. In April, my gyno found that not only did I also have a currently active infection of Epstein Barr Virus, but it was reactivated, and as of the blood work last week, still is. Kind of confusing....

                        Current Treatment:
                        Daily Medications: Elmiron, Cymbalta, Baclofen, Nexium, Pyridium, Adderall, Tramadol, Kolonpin, Tetracycline
                        Other: Self-Hypnosis, IC Diet, exercise, IV drips 2x a week of a bunch of stuff...



                        Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't. " -Richard Bach"

                        [/I"]:woohoo: So, I know everyone knows this already, but I just thought I'd remind everyone about how the Saints are going to win the Superbowl this year, so, yeahh...ThE sAiNts,in tHe DoMe...'nuff said

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                        • #13
                          I agree, Sami. They want me off it in a week and my hands are still shaking from the anxiety. I can't imagine not having it which I guess is scary within itself. On a somewhat related topic, did anyone else experience extreme anxiety when they were diagnosed with IC. I had a bad flare back on Monday and I have not felt like myself since. I am very shaky, restless, and anxious all the time. It makes it very hard for me to function. Just curious.
                          Thanks,
                          Kim

                          Comment


                          • #14
                            Kim

                            It is very common to feel anxious and depressed over an IC diagnosis or when living with IC. My God, you are told you have a disease which has no cure, no medications that will work for everyone, might or might not be escalated by diet, may ruin your sex life, prevent you from ever enjoying being out anywhere because you have to be sure you know where the bathroom is; why wouldnt someone be depressed and anxious?
                            It is impossible to be certain why or how it came on so you dont know what to avoid or do more of?
                            That is why IC board has a thread for depression, because its realistic to feel depressed. The trick is to feel depressed and anxious and live your life anyway the best you can, day by day.
                            Hugs,
                            Sammi

                            Sammi

                            Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                            Diagnosis: IC, PFD (both in remission)

                            Comment


                            • #15
                              I was dx with IC the summer after my senior year of highschool, and in september I had my first panic attack. I had been having horrible anxiety since I was diagnosed, I just didn't realize it. I think because I didnt know what it was. I had never had anxiety unil I was diagnosed. Sami is definatly right, I think the stress of the disease and everything that goes along with it causes you to think about it and worry about it constantly, even if it is subconsiously, it eventually manifests as anxiety, depression,etc. Unless you are superman, then I think you could deal with it. I mean, he flys and all, so he can get to the potty very quickly! lol When I have flares, i'm a bundle a nerves too, so i know exactly what you mean.
                              -Anne Katherine

                              Diagnosed: IC-2004' Endometriosis- 2000,TMJ - 2004, Osteoporosis-2005, IBS - 2005
                              Peptic Ulcer-2005, PFD-2005, CFS - 2006, ADD - 1996 Bipolar disorder -2007. Other shinanigans: pelvic adhesions, Migraines, Cluster Headaches, fatigue, stomach ulcers, ovarian cysts, allergies, severe PMS.[/COLOR]

                              Since February, I have had MRSA 7 times, was hospitalized for IV a/bs, and will be taking Tetracycline for the next 6 months. In April, my gyno found that not only did I also have a currently active infection of Epstein Barr Virus, but it was reactivated, and as of the blood work last week, still is. Kind of confusing....

                              Current Treatment:
                              Daily Medications: Elmiron, Cymbalta, Baclofen, Nexium, Pyridium, Adderall, Tramadol, Kolonpin, Tetracycline
                              Other: Self-Hypnosis, IC Diet, exercise, IV drips 2x a week of a bunch of stuff...



                              Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't. " -Richard Bach"

                              [/I"]:woohoo: So, I know everyone knows this already, but I just thought I'd remind everyone about how the Saints are going to win the Superbowl this year, so, yeahh...ThE sAiNts,in tHe DoMe...'nuff said

                              Comment

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