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Freaking OUT! My doc lowered my DOSE!!!

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  • #16
    Kara....good positive thoughts...

    coming your way this morning. I hope your talk with your doctor goes well and you will have relief soon. What stress and pain he has put you through. He would be curled up in a fetal position crying for his Mommy if he had to deal with even HALF of what you've had to deal with! I'm breaking ties with my pain mgt. doc today (sending certified letter) and requesting to begin seeing another doctor. I hope my current doesn't take it out of me and cut my meds or kick me out. He's so strange, I wouldn't rule out this possibility. I just can't go on with his 'treatment' which is more like abuse anymore!

    Hang in there 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.!

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    • #17
      So right!

      Kara29...you're description to your dr. about him placing himself in a painful situation while trying to go on with his life was a good 'wake up' for him. Debilitating is definitely the word I use all the time. I think before ANY doctor of ANY speciality finishes his residency, he should have to become a patient for a specific amount of time. During this time, the doctor (patient) should be injected with something that causes alot of pain, but nothing that would do permanent damage. As the 'patient' is laying there screaming for relief, the attending doctors and nurses should read from a script of comments, such as, "It can't be that bad", "You just had pain medication 2 hours ago", "Just relax, you're making yourself tense, that's why the pain 'seems' worse" and MANY other comments that we've all heard. This final 'empathy' test should last at least a full day. Wouldn't our healthcare providers have a different outlook on pain after their experience??? Somehow, instead of doctors getting more education on all aspects of pain and how to treat their patients in the best manner, it's gone backwards. My husband, who tries his best to understand, just isn't able to after all these years. God bless him. He's never had dental or medical problems. The one time he was ever in pain was because of a bad stomach/intestinal bug. I'll never forget him coming out of the bathroom saying "Now I know what it must feel like to go through childbirth, because that really hurt!". My jaw dropped and I told him, "O.K., just imagine what you just felt, but add another 8 hours of it hurting nonstop with the feeling of someone jabbing huge knives in your abdomen". He's never experienced real pain, so he just can't understand. It took years to get him to believe I was hurting. That was a very lonely time. He changed his mind when he saw the photos and talked with my GYN after my 4th surgery. He needed to SEE proof. I can't understand how someone can be so close-minded like that...but now he's right by my side and understands as best as he can. I just returned from the endodontist's office and learned I need a tooth extracted and since the tooth is in the upper front, I can't go with a bridge, so I will have to get an implant. I am so worried about the pain that will be upon me very soon. I need to request full sedation for both procedures but don't know if they will accomodate my request. Even with the pain meds I currently take (which are not doing the job anyway...still in pain), my tooth is throbbing away. What to do....what to do. At least I know my dentist is very good and knows that I've been dealing with pain a long, long time, so he will find someone who'll help me as best as they can.
      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


      • #18
        Kara

        If I were you and this is my experience and also facts about daily benzo use, I would stay away from the benzo. If he wants you to take it everyday, I would think hard about it.

        I started taking Klonopin, benzo, daily for IC "stress" and bladder spasms. I took it at night everynight and when my script ran out, after 8 months of use, I didnt get a refill. I had NO idea how addicted my body was to this drug. I did not crave this drug, I did not enjoy or get high off this drug, but I was severely addicted it to it physically and mentally. After 5 days of stopping it I went into a withdrawal I NEVER want to go into again. I couldnt believe how bad it was. I am still on this drug, trying to ween off of it slowly.

        Had I known how bad you body relies on this drug after prolonged use I would have never taken it. I am mad that my doctor gave it to me like I was taking tylenol with no warnings. I never took more then my once a night dose. Now I am stuck in benzo hell trying to get off it.

        It will just be one more thing your body will have to ween off of.

        Benzos do help narcotic pain meds work better. Maybe his thinking is lower the pain meds but increase the validity of the pain meds with benzos. It's traded an evil for an evil. Not that pain meds are evil, they help but you know what I mean, I hope I just felt the need to warn you of benzos. I wish somebody would have warned me, I was completely oblivious to it's powers.

        Hang in there though at the lower dose of pain meds. In a week or two your body will adjust to a lower dose and it should work effectively at your pain.

        I had the same issue. I had my pain med lowered and my bladder acted out for a week, I think b/c of the med change. But in two weeks I was back at my normal pain level with less meds.

        Amy

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        • #19
          Kara,

          Just wondering how this worked out for you?!
          *IC-- Summer 2004; PFD--October 2005
          *Fibro--Fall 2000; CFS-- Fall 2000
          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

          Total Abdominal Hysterectomy--adenomyosis--9\08

          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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          • #20
            Hi Sandy,

            Thanks for thinking about me! I'm doing TERRIBLE actually, I've been on the couch in pajamas for the last 3 days and won't leave my house or do anything. I physically can't.

            My husband is nagging me to call the doctor and I suppose I will, but my question is, if I've already filled my prescription for the 15mg, can he even give me more in a month? Would my insurance even cover that? I don't know if it would do any good to call him or if it'll be another frustration for me, I don't think I could handle more disappointment right now.

            I tried taking the xanax for a few days and ended up crying alot (course it doesn't help being in pain).

            I guess i have two choices, keep suffering.....or call the darn doctor.

            Thanks for thinking about me! It really does make me feel warm and fuzzy.

            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!

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            • #21
              I'd call, just to find out. I'm really sorry you feel so bad, but I had been thinking about you. Rather than just calling, why don't you make an appointment? That way he knows you're serious. The one or two times I had to see my doc in an emergency, FIX MY PAIN NOW, kind of way I went to see him and he was fine about it. I don't know about your insurance, but the only way to find out is to ask, unfortunately!

              Let us know how it goes, and I hope you feel better soon!
              *IC-- Summer 2004; PFD--October 2005
              *Fibro--Fall 2000; CFS-- Fall 2000
              *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

              Total Abdominal Hysterectomy--adenomyosis--9\08

              04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

              Comment


              • #22
                Insurance - Dosage Adjustment

                A doctor can do a dosage adjustment in the middle of the month. If the insurance rejects it have the pharmacy call them and explain this is a medication adjustment. Insurance should pay for it. Medications are adjusted all the time.

                Could you get an appointment with the doctor and have a family member go with you? Doctors are on best behavior with a family member present. It doesn't even have to be your husband if he has to work. A mother, sister or cousin will do.

                I know these pain doctors don't make a lot of money doing pain med consults, but you need to be assured if this change doesn't work it will be handled and the timeframe in which it will be taken care of. Personally, when medication adjustments are being done a patient should be seen every week in case problems arise. Our medical system just isn't great in handling chronic illnesses, so we have to work extra hard to make the system work for us. I know it is an exhausting situation when you can't even get dressed, but hang in there and let us know how you are doing.

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                • #23
                  Freaking out

                  I hear you, Thursday I met with my pain doc. to let him know that the last procedure he did was actually working not total relief without meds. I was taking 30 mg mscontin twice a day and 15mg once a day. oxy contine as needed. Since the procedure the 30's make me shake so we lowered the dose to 15 mg 2x a day and 10mg of oxycontine as needed. I immediately called my pcp and let her know about the changes since i didn't have enough 15mg to last. I then get home to my older sister calling me to let me know our brother is in the hospital with heart attack. Friday morning he passed, I start making arrangements to fly to Alaska. I need my new meds to go with me but will my doctors office help, not only no but hell no, my pcp wasn't in and will not be back until tomorrow and know one else in her office would help me. They wanted to talk to the pain clinic first and he wasn't in. I finally get a hold of the pain doc on call, he in turns call my regular pain doc and got the ok from he as to what I was claiming by this time my pcp office had closed and the on call doc tells me "The only way you are going to get narcotics is wait until Tuesday or go to the er". I had to change my reservations for Thursday and ask my family to have his memorial service this coming weekend. My brother wanted to be cremated and ashes thrown on the waters of Resurrection bay. Fortunately the memorial service can change easier then my doctors office can.

                  I have been having problems with my pcp every since she took over my pain contract. From day one she let it be know I did things her way or noway. I'm done I live in the Auburn Washington area and I need a new pcp. Hopefully one who has other IC patients.

                  I saw a message here once that there is a support meeting at St. Frances hospital in Federal way. Any body with info on that please let me know either here or a my email address: [email protected]

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                  • #24
                    You should have been able to get what they call a vacation dosage. I am glad you are shopping for a new doctor. We take pain medications so we can participate in life, not be tied to a prescription refill when there is an emergency. I am sorry you had to experience this situation in a time of grief.

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                    • #25
                      You definitely need to get another script. You shouldn't be suffering like this.
                      http://www.TheCraftyEwe.etsy.com

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                      • #26
                        Ruth

                        Ruth,
                        I am sorry about the loss of your brother. I will keep you and your family in my prayers
                        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

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                        • #27
                          Ruth, sorry about your brother. I lost my brother last summer and since he was my only sibling, it still hits me every once in a while that he is really gone. He suffered with cancer for almost 2 years and for awhile it was a relief in my mind that he was no longer suffering, it still hits my heart.

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                          • #28
                            Toby -- I'm glad your body was able to adjust to a lower dosage of pain meds with the same level of relief, but that is not everyone's experience. We are all different.

                            Kara -- I understand this is hard for you, but you need to prime yourself for your next visit or discussion with your doc. Any time he announces he's making a change in your meds, the first thing out of your mouth should be, "Why?" I know he did say he wanted to treat the fibro -- but, girl, you gotta stand up for yourself! Practice saying, "Fibromyalgia is not my chief complaint and it is much more important for me to have my IC pain under control. Also, I have had bad reactions to benzos in the past. I don't want to do this change." Please, please get out of bed and get in touch with your doctor. As someone already explained, generally a "change of dose" can be filled at any time. It's a pretty standard policy. So stop telling yourself that there is no way out of this situation, and start trying to find one. [I just re-read that last bit and it sounds a little harsh. I didn't mean it that way. I'm sorry.]

                            Now we're all waiting to hear the next episode of this drama, so you need to put it in play so you'll have something to write about!

                            Good luck. I'm sorry you have to go through all this crap.
                            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

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                            • #29
                              Support Group Meeting

                              I e-mailed you about the up coming meeting.
                              angie

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                              • #30
                                Thank you all for your condolences. I had to wait until Tuesday to see my pcp and she all but ignored what happen this past weekend. I looked her straight in the eye and told her that if she didn't want to be my doctor any more the least she could do is tell me. No comment. I was able to get my meds and will be leaving tomorrow for Seward, AK.

                                Angie I didn't receive your email would you pls resend thank you.

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