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  • No more elavil... Oh the pain!

    Going off elavil has been a nightmare the pain is coming back with a vengeance..But I can not go back on elavil due to the weight gain, because it is affecting my blood pressure and now they are saying dietabetes...I could just cry..I think I could handle maybe gaining 10 or 15 but when I was at uros office I weighed and had now gained 40 pounds!! Thats wayyyy to much..But with hurting so bad now I dont feel like exercising. I just dont know what to do .. Any suggestions would be great and thanks for listening to me vent.....

    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.

  • #2
    leelee...I wish there was more that I could do to help you, but all I can do is give you a (((hug))) and send you prayers.
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC 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 had to stop taking elavil too... It was giving me pains almost like a heart attack! I stoped cold turkey, b/c my dr didnt call me back. Do you take pain meds? working out is hard with ic. I have hard time sticking with the usual routine.... i run and do ab workouts. but someday i just cant. i saw this machine on an infomercial. you sit on this stool like thing and you swing your body left and right and it's supposed to be a good for your abs... or the beanie have you seen that? I dont know what' exercises you've tried.
      I hope you feel better soon sweetheart!
      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


      • #4
        Awww Ronda, I'm so sorry that you're in so much pain. I don't have any suggestions but wanted to send out some ((((((((hugs))))))))))
        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


        • #5
          Thank you all... I called my GYN today she said see if my uro would put me on Elmiron..I said ok and ask about Topomax because I am having severe migrains again and I have heard it helps IC pain.. So waiting on her to call me back..Thanks again to you all.. I really needed them hugs today
          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


          • #6
            {{{{{{Ronda}}}}}}} big hugs!!!

            I had to go off of Elavil too, so I can relate!

            You'll be in my prayers!!

            Warm hugs,
            Beth
            IC diagnosis 1999
            Meds: Elmiron
            hydroxyzine hcl
            DMSO as needed
            valium as needed
            librax 3x day

            TENS therapy



            Thanks to all on the boards - YOU have helped more than I can say!



            A person's true wealth is the good he or she does in the world.

            Comment


            • #7
              Oh, Ronda! I am so sorry that you had to go off Elavil when it was helping you with the pain! But, I also hate that it was causing all the other problems. It seems sometimes we just cant win for losing! Prednisone is that way for me! It helps me like no other med! I feel WONDERFUL on it..no pain AT ALL, and I have SO much ENERGY! But, I gain so much weight every single time I am on it even for a few days! It is awful that things that help us so much, hurt us so much too!

              I do hope that they let you try Topamax! Moonheart has just started it and has had great results with it for pain relief and weight loss. I also just started it. I am not quite to the dose that she is taking yet, but have already lost 6lbs in a week! I am pretty excited about trying it.

              It is a neuropathic med, (similar to Lyrica, Neurontin, Keppra, etc), except, most of those others have the side effect of weight GAIN and this one has the side effect of weight loss! :woohoo: Like the rest of the meds in it's class, it has to be titrated up slowly to whatever dose they want you on. So, my Dr. started me on 25mg 1 a day last week. Then, this week, I take 25 mg 2 x a day. Next week I take 25 mg 3 x day and by the 4th week I will be at 100 mg once a day (or 2 50 mg doses a day.)

              Everyone I know that has been able to tolerate Topamax has lost weight on it. I really hope they let you try it and you can tolerate it too!!! *Crossing fingers**

              Ronda, when you say your Drs are "saying diabetes" are they saying that if things dont change you might get it, or that you already have it? If you already have it, is it something that can be controlled by diet alone, or will you need insulin too?

              I am so sorry that you have all this going on! I honestly dont know how you have handled everything that has been thrown at you this past year, but you are an amazingly strong person to have gotten thru it all and you will make it thru this too! I just so hope that they let you try the Topamax and it will help you lose weight and relieve your pain and that if it helps you lose weight, then maybe the diabetes will go away.

              I am just starting it myself, (as of last Monday), but if you do try it and have any questions I can answer or want to compare notes, feel free to pm me. Or, if you want to talk, or need a shoulder to cry on, I hope you know that you have got mine! You have been there for me so many times! I want to be there for you too!

              Sending you big hugs,
              Amy

              Comment


              • #8
                Sorry to hear that you had to come off of Elavil. Hopefully though that you'll be able to find something very soon that will provide you with relief.

                I too am looking at having to come off of Elavil due to an increase in BP. i've been on BP for many years now, however the last couple of BP checks have shown a significant elevation and the suspect is Elavil. I've got 3 months to see if my BP comes down, otherwise its bye-bye to the Elavil.

                When you do find something that works for you be sure to post.

                Feel better soon.
                Diana
                (\__/)
                (o.O )
                (> < ) This is Bunny. He's on his way to world domination.

                Comment


                • #9
                  Oh Ronda! I'm so sorry you are suffering! Poor thing!!!

                  I'm praying so hard over here that your doctor let's you try to the Topamax! If not, then you need to find a doc JUST for the headaches and get on the Topamax for that alone! Or order if off the internet or something! You know it's a miracle drug for me. We have to find a way to get it to you okay? God will make sure your doctor let's you take it, I know He will!

                  Hugs and loves!

                  Moonheart
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #10
                    YIKES! I sure hope they give you something to help out. Sending you big hugs that things ease up soon.

                    Comment


                    • #11
                      oh hon that is so sad! If you lost some weight naturally whilst you are off elavil will they prepared to put you back on it?

                      what dosage was you taking originally?? what bout gabapentin can you take that? I take that now as Elavil also made me put a lot of weight on

                      take care x
                      Started with symptoms 2004 after a severe infection.
                      Was diagnosed with IC Feb 2006 after cystoscopy.
                      Diagnosed with vulvodyina and PN in july 2006.
                      Dignosed with ME and IBS Oct 2006.
                      Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                      Also doing IC diet and regular use of heat packs.
                      Still struggling with IC and controling my symptoms so looking for some help

                      also recently had abnormal pap, CIN III and just had LEEP done 2007

                      Comment


                      • #12
                        Thanks everyone,


                        Kjd, I am waiting today for the nurse to call me back. I will keep you informed.. She said that the dr did not know what else to put me on..lol Duh shes the doctor seems like she would know..All that was mentioned yesterday was Elmiron.. But I am undecided about taking it..I ask her for topomax so I will see what she says today..
                        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
                          It could be that a different antideparessant would help with your pain without the weight gain.

                          I hope you find a solution soon.

                          Donna
                          Stay safe


                          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                          Have you checked the ICN Shop?
                          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                          Patient Help: http://www.ic-network.com/patientlinks.html

                          Sub-types https://www.ic-network.com/five-pote...markably-well/

                          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                          I am not a medical authority nor do I offer medical advice. In all cases, 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.
                          [3MG]

                          Anyone who says something is foolproof hasn't met a determined fool

                          Comment


                          • #14
                            Thanks again everyone for your support. I sure needed it these past few days.. I did get some good news my GYN is going to let me try Topomax.. I sure hope I get good results from it...Thanks again to all of you((((((((((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


                            • #15
                              Hey Rhonda! Let us know how the Topamax works (headaches, IC, weight loss, etc). I sure hope it helps you! I have gained 10 pounds just due to the IC diet (and inability to exercise). Sounds like a great med to try, except that I don't have headaches (other than ones I get from Elmiron).
                              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                              [

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