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Freaking OUT! My doc lowered my DOSE!!!

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  • #31
    Ruth,

    I just wanted to let you know that I am very sorry to hear about the loss of your brother. My heart goes out to you and your family. I have 2 brothers of my own and cant imagine going thru what you are right now. You are in my thoughts and prayers.

    Hugs,
    Amy

    Comment


    • #32
      Ihurtoo, Every time I'm feeling sorry for myself the lord shows me why I shouldn't. I am so sorry that you have to deal with all that you do.

      I am a 42 yr. old female w/ end stage IC, my uro's words not mine. My IC is caused by chronic kidney stones, I pass at least a stone a week, it used to be daily. Since my hysterectomy I don't have to deal with endo, but the night sweats and mood swings are wicked. I can't take hormones pills any way they cause a never ending flare-up. The patches were better but they didn't stop the night sweats, decided the risks of continuing out weighed the little good they did. I have found an all natural herbal remedy for the sweats.
      Chronic irides, inflammation of the eyes, which I found out that it because of the IC. Both are inflammatory diseases.

      Well thanks for helping and I will add you to my prays.
      Ruth

      Comment


      • #33
        I wish my doc was lowering meds he isn't even giving me pain meds and I am in severe pain. I am waiting for an appoinmet for pain managment and that is a month away.

        Comment


        • #34
          Kara, I was just wondering how you are doing? Have you called the doctor yet? I am worried about you, please check in with us! If it were me, I would call my doc ASAP and tell him this isnt working AT ALL for you and see if you can talk about something else to do. That way, he can maybe come up with the answer himself! You know they like to feel useful.
          I also was thinking that if you are too upset to call, maybe your hubby can call for you. I have had my husband call a few times and they seem to take it real seriously if he calls in. Plus it is a way to let them know what your suffering is like for those close to you.
          I hope you are hanging in there sweetie. You will be in my thoughts.
          Sarah
          Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

          Comment


          • #35
            Thanks Sarah,

            I have an appt Monday morning at 8 am! JUST wish me LUCK getting this whole nightmare REVERSED! This last few weeks have been HELL. I have been on the couch in pain and lost weight

            Wish me luck!
            Love,
            Kara
            Hugs and Wishes for Pain FREE days!!,
            Kara


            www.loveforearth.net ~reducing plastic waste one bag at a time~

            Facebook: Kara Kaiser
            Twitter: Love4Earth

            Me and my Guccigirl... she helps me through those painful hours!

            Comment


            • #36
              Oh gosh, I hate that you've had to wait this long for it to be resolved.
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #37
                Hoping the time 'speeds' toward Monday!

                Kara,

                I've been feeling so bad for you. It's hard enough to get a doctor to 1. Believe you need long-term pain control 2. Then to finally get to the right levels to control your pain, but then having the rug pulled out from under you. It is so scary what you are having to go through. It is cruel and total nonsense. There are doctors all over the country who are starting to 'wake up' to the fact that IC is very painful and can't be ignored. A friend of mine who has severe IC was just told by her doctor that since her pain was not getting any less, perhaps the pain meds were the problem and she should stop them for a while. WHAT!!!!!! I'm no doctor, but the solution is to find a different med and try it to help her pain. I don't know how some of these doctors can sleep at night. We certainly haven't had a good night's sleep in ages! She and I are going to a new doctor next month who is supposed to be wonderful. He not only controls your pain, but he also makes sure you are getting enough sleep, making sure you are keeping in touch with friends and family about how you're feeling (group sessions) and generally treats the whole person. The pain can totally wreak havoc on emotions....and that part is so hard to mend. I hope Monday is a bright new day for you and your new doctor fixes everything so your pain will be controlled. Suffering is so hard to understand. My thoughts and prayers are with you!

                Dani

                Originally posted by Kara Isabel
                Thanks Sarah,

                I have an appt Monday morning at 8 am! JUST wish me LUCK getting this whole nightmare REVERSED! This last few weeks have been HELL. I have been on the couch in pain and lost weight

                Wish me luck!
                Love,
                Kara
                Dani


                -Bladder surgery to correct reflux-'68
                -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                -DX'd with IBS in 2000
                -Rhabdomyolysis in 2001 (has not returned)
                -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                -DX'd with TMJ in 2000-wear splint
                -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                -DX'd with Epilepsy -2000
                -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                -DX'd with Fibromyalgia (2006)

                Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                Comment


                • #38
                  Kara

                  You are certainly in my thoughts and prayers. I pray that you get some much needed relief and that Monday goes very well for you! We are all here for you! Healing Hugs, Rach
                  When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

                  Diagnosed in 2001
                  Meds
                  Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed

                  Comment


                  • #39
                    Kara,
                    I will be thinking of you and sending you thoughts to be strong. I remember something Amy( I hurtoo) said to me before one of my "big" pain doc appts; she said when you feel all alone in the waiting room and look over at the empty chair, just know that all of us are sitting in there with you in spirit. That made me feel better because I would think of all the things you gals would tell me about being strong and communicating and I could do it in there too!
                    Just be honest with your doc. Tell them you tried the xanax and it just isnt working. I have gotten mid-month dosage adjustments before and the pharmacy filled it no problem, as long as he remembers to write the higher dose on the script. Like not just write for more 15 mg pills without writing that you are taking more.
                    Try to hang in there, okay! We are all thinking of you.
                    Love Sarah
                    Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

                    Comment


                    • #40
                      I just got back from my appointment and the NIGHTMARE CONTINUES!

                      I told him what was going on with the pain and the benzos making me so depressed and it went IN one ear and OUT the other!!!!!!!!!!

                      He did give me TWO 30mg mscontin for the day BUT he CUT MY NIGHT DOSE COMPLETELY OUT!

                      He wants me to take valium at night......

                      I CANNOT stop crying.

                      I know the valium isn't going to do anything! I've taken it before and I'm still UP all night in pain......

                      AND if that wasnt' enough, my pain doc has decided NOT TO TAKE my insurance, BCBS any more so I have to pay out of pocket!!!!!!!!!!!

                      I can't even BREATHE right now I am SO hysterical and depressed!!!!!!!!

                      My husband wants to call my doc and tell them this is BS, but I doubt it will do any good.

                      I just wish I could stop crying........I guess you all will be seeing me around ALOT more at night since my stupid bladder will no doubt keep me awake!!!

                      I hate being ME right now.

                      love,
                      Kara
                      Hugs and Wishes for Pain FREE days!!,
                      Kara


                      www.loveforearth.net ~reducing plastic waste one bag at a time~

                      Facebook: Kara Kaiser
                      Twitter: Love4Earth

                      Me and my Guccigirl... she helps me through those painful hours!

                      Comment


                      • #41
                        Kara,
                        I don't know what to say. I just don't understand doctors who don't listen to their patients at all. Sending a gentle hug your way,
                        hugs,
                        Janie

                        Comment


                        • #42
                          I'm sooo mad about your 'Doctor'....

                          what happened to the oath he took saying he will "Do no harm"? I can't believe he didn't listen to you and is so stubborn while watching you suffer right there in his office. How long has he been your doctor? I think your husband, mother, whomever can, should call this doctor and explain exactly what you've been going through with the lesser dosage of the pain medication and the addition of the benzos. He should be 'hounded' day and night until he wakes up that he made a big mistake at your expense. Any doctor knows (unless he/she is nuts) that changing someone's medication is going to make a huge difference in not only how they feel physically, but emotionally as well. I feel so bad for you and wish everything would be resolved within this day. Why are some doctors (most) soooo insensitive and stubborn! Don't they realize this pain is not going to just go away and our bodies and minds are going to be o.k. with it. A 5 year old knows better than that! UUUGGHHHH! ARRRRGGH! I don't wish any harm to come to someone, but if this doctor could experience an awful bladder infection for a week, do you think he would just 'shoo' it aside....no...he'd make sure he was comfortable, because his pain is 'real'!! My soon to be ex pain doc is so detached and even though I told him I was feeling so much better with the MS Contin 30 mg @ 3xper day, he said "I'll let you take it twice per day". I repeated myself and he ignored me!!!! I think he is sadistic....I really do. Someone else who had the misfortune of having him perform a procedure on her (spinal shot for pain?) said he did it incorrectly which left her in excruciating pain (migraine too) and he didn't apologize, left the room and another doctor came in to help her. UNBELIEVABLE!!! I truly don't understand how some of these 'doctors' ever decided to help people with their pain. Sometimes they cause more than what you came in there with. If your doctor doesn't budge (you waited so long to get relief....and he didn't come through), immediately get your hubby to call around to find another doctor. You need to get this straightened out ASAP. If you called your insurance co, would they help you find someone if you tell them you are not getting the care you need and your doctor is not taking care of you and pretty much denying you proper care for your condition? My insurance co. helped me once a while ago and I was surprised at how fast and kind they were at getting me referred and in to see someone else. They also took note of my complaint about the doctor who messed me up. I feel sooo bad for you. I know you feel like you are stuck in a pit right now, but you will be out real soon...I will be praying that all this gets resolved immediately. You should not be suffering....it is inhumane! Get your husband to call the doctor right away!

                          Sending hugs and prayers your way!

                          Danita


                          Originally posted by Kara Isabel
                          I just got back from my appointment and the NIGHTMARE CONTINUES!

                          I told him what was going on with the pain and the benzos making me so depressed and it went IN one ear and OUT the other!!!!!!!!!!

                          He did give me TWO 30mg mscontin for the day BUT he CUT MY NIGHT DOSE COMPLETELY OUT!

                          He wants me to take valium at night......

                          I CANNOT stop crying.

                          I know the valium isn't going to do anything! I've taken it before and I'm still UP all night in pain......

                          AND if that wasnt' enough, my pain doc has decided NOT TO TAKE my insurance, BCBS any more so I have to pay out of pocket!!!!!!!!!!!

                          I can't even BREATHE right now I am SO hysterical and depressed!!!!!!!!

                          My husband wants to call my doc and tell them this is BS, but I doubt it will do any good.

                          I just wish I could stop crying........I guess you all will be seeing me around ALOT more at night since my stupid bladder will no doubt keep me awake!!!

                          I hate being ME right now.

                          love,
                          Kara
                          Dani


                          -Bladder surgery to correct reflux-'68
                          -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                          -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                          -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                          -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                          PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                          -DX'd with IBS in 2000
                          -Rhabdomyolysis in 2001 (has not returned)
                          -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                          -DX'd with TMJ in 2000-wear splint
                          -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                          -DX'd with Epilepsy -2000
                          -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                          -DX'd with Fibromyalgia (2006)

                          Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                          Comment


                          • #43
                            P.s.

                            Doesn't the doctor know that Valium only relaxes the body, but doesn't have the capacity to really relieve pain...and why not let you have one more tablet per day???? I don't understand it. My doctor was just as stubborn and would not explain why. When nighttime comes, I just try to 'knock myself out' with a Soma (which is just supposed to relax my TMJ), but I have no choice! It's crazy that a doctor has a patient sitting there saying, my pain is controlled with just 30 mg more per day....and then he denies you the relief! Maybe your doctor and mine are related!! They make no sense. I have friends (I.C. sufferers), who take really strong medications (the 'Fentanyl' patch @ 120mg per day) and they are still in pain. If I took that much, I would not know down from up and be unable to walk or do anything. What I'm getting at is, you are not asking for much!!! Still sooooo mad for you!!!

                            Dani
                            Dani


                            -Bladder surgery to correct reflux-'68
                            -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                            -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                            -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                            -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                            PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                            -DX'd with IBS in 2000
                            -Rhabdomyolysis in 2001 (has not returned)
                            -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                            -DX'd with TMJ in 2000-wear splint
                            -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                            -DX'd with Epilepsy -2000
                            -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                            -DX'd with Fibromyalgia (2006)

                            Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                            Comment


                            • #44
                              Thanks ladies,

                              I'm just beside myself right now, I feel like the rug was pulled out from underneath me!

                              I mean, I am willing to give it a shot........but from last month's experience its not looking hopeful The valium seems to be increasing my frequency quite a bit and possibly aggravating my IC?

                              I just don't know what to do?????? Look for another doctor? Or stick it out with him for a few months until I get stabalized before I switch???

                              Or call my urologist and reconsider doing the Instills??????

                              I'm SOOO confused and depressed.

                              I wish these docs could experience ONE DAY of this HELL!!!!

                              love,
                              Kara
                              Hugs and Wishes for Pain FREE days!!,
                              Kara


                              www.loveforearth.net ~reducing plastic waste one bag at a time~

                              Facebook: Kara Kaiser
                              Twitter: Love4Earth

                              Me and my Guccigirl... she helps me through those painful hours!

                              Comment


                              • #45
                                Originally posted by Kara Isabel
                                Thanks ladies,

                                I'm just beside myself right now, I feel like the rug was pulled out from underneath me!

                                I mean, I am willing to give it a shot........but from last month's experience its not looking hopeful The valium seems to be increasing my frequency quite a bit and possibly aggravating my IC?

                                I just don't know what to do?????? Look for another doctor? Or stick it out with him for a few months until I get stabalized before I switch???

                                Or call my urologist and reconsider doing the Instills??????

                                I'm SOOO confused and depressed.

                                I wish these docs could experience ONE DAY of this HELL!!!!

                                love,
                                Kara

                                Hi Kara hon!

                                I was wondering if you could tell us how much MS Contin total you were on before this all started? Then what is the total amount you are on now, whether it's morning or night or whatever.

                                The reason I'm asking is to see if maybe you could take part of your day dose at night to help you sleep?

                                Thanks sweetie! Hang in there!
                                Last edited by Moonheart; 03-05-2007, 08:22 AM.
                                http://www.TheCraftyEwe.etsy.com

                                Comment

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