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  • Started Elavil

    OMG!!! I took my first dose of Elavil last night. My uro gave me a 25 mg dose to take at bedtime to start off w/. I am sitting here at work about ready to fall asleep. I literally feel like I need some toothpicks to keep my eye lids up I read that it could make you drowsy but lord this is nuts. I think I read that some people take it an hour or 2 before bedtime to try to be more awake during the day. Does this help? Thanks for the input
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  • #2
    my doctor started me on only 10mg for 7 days, then i increased to 20mg for 7 days, then tonight i start 30mg for another 7 days...then i can maintain it or decrease, depending on how the 30mg does me...

    i DEFINTELY take it before bed! it helps me sleep and allows me to function during the day...I couldn't tolerate it during morning...i'm out within 20 mins of taking it usually...I've even fallen asleep in the bathroom b/c it works soooo fast for me
    my husband laughed so hard when he found me in there a couple of times! - rule # 1: make sure you don't have to pee when you take it!
    rule # 2: always refer to rule #1!!

    lol...

    good luck w/it, it's made such a big difference to me with this condition, i was on Ditropan XL for a year, but this works even better for me...

    Comment


    • #3
      hi there,
      it might help to take it an hour before bedtime...otherwise you'll be a zombie! my dr. started me on the 10mg dose (i'm only 93lbs lol) and i tried it about an hour b4 bed. i wish it worked for me...it made me loony for about 2 hours THEN tired...and then made me retain urine. grrr. but so many have success with it, good luck!

      tracy
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:


      Connor with Santa...so happy!


      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

      Comment


      • #4
        I love Elavil! For me the tiredness went away in about a week, now I can't even tell that I've taken it. It may help in the mornings if you take it an hour or so before bed, but that's only if you can keep awake for that long after you take it. Elavil was a godsend for me. I noticed improvements within 2wks and it just kept getting better! Good Luck! Hope it works for you too!

        Comment


        • #5
          Oh thanks Leah!
          That's so great to know that the tiredness went away for you. I hope it does for me too. I've read that it helps so many people, I'm really hoping that it helps me too. Maybe I'll take it a little bit earlier tonight and see how I do tomorrow morning.
          Christine



          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus

          Comment


          • #6
            I love elavil too. I try to take it about an hour before I go to bed... I usually pass out after about 1/2 hour after taking it. my bf get's mad when I fall asleep before he's ready for bed b/c he says he geting in bed and it;s like hugging a log. I dont cuddle with him lol. I'll never forget the 1st night I took it I wasn't even ready for bed yet. I was watching tv and passed out! My bf had to get me dressed for bed and then try to wake me up to take my contacts out. It was kinda funny.
            I'm really tired in the morning too. I've been trying hto have a few sips of coffee in the morning. a few sips will make my hands shake from the caffeine. My body isn't used to it. Then I drink tons of water to flush it out. It works for me. I hope it gets better for you.

            Rach
            ***Rachel***

            Dance like no one is watching
            Love like you've never been hurt
            Live today like it's your last

            Dxd with IC in June '06

            Comment


            • #7
              Christine,

              As I have told you I take 25mg of elavil at night to.. If I take it after 10pm I am very tired the next morning but I have found if I take it at 9pm and get more sleep I am fine in the mornings..It just takes getting use to.. If you can deal with the tiredness for about a week the benefits of the meds are wonderful..I went from using the bathroom 4 times a night to just one and in the day it went from 20 times a day to about 9 now..I really hope it works for you also it does take about 2 weeks to get the full effects of the medicine..You will be able to notices a slight change in a couple of days..I sure wish you luck with this medicine I know you surely deserve a break from all this pain..(((((((((((hugs))))))))))
              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


              • #8
                re-started elavil

                I just re-started elavil myself.

                I was taking elmiron & elavil...but by hair was falling out...so i quit elmiron...
                and i was doing fine...except my hair still falling out...so i quit elavil too.
                about 1 week after quitting elavil..my symptoms started to creep back up..

                so i started back on elavil on sunday.
                i am feeling better already
                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

                Comment


                • #9
                  Well, I've never taken Elavil -- I can't take antidepressants for other reasons, but I do know it helps a ton of people!! I do hope the fatigue goes away... and that it helps your symptoms!!
                  ****
                  Jen

                  *Diagnosed with severe IC in 2004
                  *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                  *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                  *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                  **I am not a medical authority nor do I offer definitive medical advice. I 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


                  • #10
                    25 mg is kind of a high starting dosage, I think. My dr. started me on 10. I'm still trying to adjust to 20, but honestly I could sleep all day. I mean this quite literally; if no one wakes me up, I'll sleep the entire day. Dr. just told me to try taking 15 for a week, so I'll be getting out my handy-dandy pill cutter tonight. But those pills are already so tiny! I'll try to remember to check back in and let you know how it goes -- if I can stay awake long enough -- LOL.

                    Anyway, good luck, Christine.
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn
                    ___________________________________________________

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                    On the Beach with IC

                    Comment


                    • #11
                      LOL thanks Carolyn. He said that this was a middle of the road dose. Some patients are on lower and some are on higher so he wanted to start me out with this. I think I'm giong to take it earlier tonight to see how that works. I feel like I could sleep all day as well which is really bad when you work full time I fully told my boss today that the new meds were making me really really tired. She asked me my opinion during a staff meeting and I told her I didn't have one because my brain is not functioning properly. If I still feel really out of it then maybe i'll cut my pills in half and do that for a week or so.
                      Christine



                      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                      I have tried every oral medication as well as rescue instills and DMSO.

                      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                      Also proud mom to the best Bullmastiff on earth, Claus

                      Comment


                      • #12
                        Christine... Before cutting them in half call your doctor or ask pharmacist about cutting them in half some meds cant be cut in half and can cause more harm than good...Just letting you know....
                        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


                        • #13
                          Thanks Ronda, I would call someone before I did that, I'm going to try to ride out the utter exhustation. I took it a couple of minutes ago so I'm sitting here waiting to fall asleep in my laptop, and I still have to get Griffin to bed, take the dog out and finish laundry, LOL. Hopefully I can stay awake long enough for all of that, but I guess it can't be any harder than it was to stay awake at work today.
                          Christine



                          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                          I have tried every oral medication as well as rescue instills and DMSO.

                          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                          Also proud mom to the best Bullmastiff on earth, Claus

                          Comment


                          • #14
                            I can't take it because it makes my heart race......and when I did try it I was totally zonked out within 10 minutes. I hope you can get it worked out and that it helps your pain.
                            Miss Bessie

                            Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                            Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                            Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                            Comment

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