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  • Freaking OUT! My doc lowered my DOSE!!!

    I am absolutely flipping out! My pain doc lowered my MsContin from 30mg to 15 mg, so he could add a benzo to my regiment!!!

    I don't know what to do! I don't even WANT to try the benzo, my pain levels are already back UP and I woke up CRYING this morning!

    I feel like I'm obligated to atleast try this new plan, to see if it works, but I'm already SO DEPRESSED over it!

    Historically, I can't take benzos every day because they make me depressed! I end up crying over everything if I take them too often!

    What do I do????????????

    Should I atleast TRY this? Or call him and tell him its not working after the weekend???

    I haven't even eaten for 2 days because I'm afraid of aggravating my bladder. That...and I'm so upset I haven't even had an appetite.

    I hate life right now

    hugs,
    Kara I.
    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!

  • #2
    I know you are scared because of the pain but maybe you could at least try if for a couple of days to see if it works. That way you know that you did try and who knows.....maybe you will get lucky and it will work. If you try it and the pain is too intense you should call your doctor.

    Don't be so hard on yourself......everything will be o.k.

    Hang in there and please let us know how it works out
    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


    • #3
      I understand how scared you must be...

      We've most all had those jaw-dropping appointments when the our pain mgt. doc's decide seemingly out of the blue to change our medication. What led up to his/her decision to lower the dose of the Contin and add another med? He/she needs to know about your past problems with the benzo meds. I am the same way. Right now, you are understandibly stressed which makes the pain and stress so much worse. I would have thought if your doctor wanted you to try something different, he would have kept you on the Contin at your regular dose, gradually add the benzo, and gradually decrease the Contin. I HATE when docs do things so abruptly like this. Don't they know stress makes pain so much worse. Once, I told my doctor that my breakthrough meds weren't working effectively, so she totally discontinued them!!! She didn't even add another kind, or increase the MS Contin. Currently, even though I told my doctor I had much better pain control with MS Contin @ 30 mg, 3xdaily, he said "I'll let you take it twice per day". I couldn't believe that after I'd just finished saying "My pain is at about 80 percent controlled now with the extra dose", she did the "I'm the doctor weilding my rein of power over you..and you don't tell me what to do" speil. So, because of this, instead of being able to do things around the house and take my sons to get a movie,etc. (I'm not asking for much), I am in the bed or on the couch most all of the day. I am on fire today and have 1/2 of an instillation left (had 1 left for the weekend and used 1/2 this afternoon trying to spead it out), I'm soooo tired of all this. Anyway, I would advise calling your doctor NOW and letting him know that you have experienced problems in the past with benzo meds...could you please continue on what you were on before because it was working. Best of luck!
      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


      • #4
        I think you should try it, but at least let your doctor know that you have taken similar things in the past and had a bad reaction to them. You may have already done that, but it's quite possible he forgot.

        ****
        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


        • #5
          If you have already told your doctor about how you reacted before, it might be that he thinks this combination might work well for you. You might want to give it a try for a few days just to see.

          Warm hugs,
          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


          • #6
            Thanks for all your replies so far! I'm just beyond frustrated and surprised because I was doing so well, and I guess I just wasn't ready for the
            "lets try decreasing your meds".......especially following a week that I had FLARED quite a bit

            I know I have a really negative attitude towards this, which doesn't help matters much, but at any rate, every time I think about it I end up crying, so I haven't even been mentally stable enough to add the xanax xr....that might throw me into a full depressed state, I mean......it IS a depressant!!!!!!

            I had a few extra 30's, and I haven't even switched to the 15's yet....but the change is inevitable.

            I'm so upset about it, I feel nauseous I know that is probaby ridiculous to anyone that doesn't rely on pain management to have a life.

            According to him, he wants to add the xanax xr or valium to help with the fibro symptoms and he doesn't want me "oversedated", so he lowered the mscontin.. but my bladder bothers me WAY worse than the fibro does

            I just want to scream! Why do doctors feel the need to yank the rug up from underneath you?????

            Off to cry again

            hugs,
            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


            • #7
              Sending you and
              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


              • #8
                I would call your doctor first thing Monday morning and explain what you told us to him

                hugs
                Mary
                NEW YORK YANKEES ROCK THE HOUSE. 26 WORLD SERIES CHAMPIONSHIPS, THE MOST EVER\

                GO YANKEES
                :woohoo: :woohoo:

                Comment


                • #9
                  I totally understand why you are so upset. Why take away or lower something that was WORKING? You said you already know how the benzo's affect your body, so you have a right to be upset, and worried. I know by now it's late Sunday afternoon, but if you are in pain in the morning I would call and ask to be taken off the benzo, and put back on your dose of MSContin. I totally understand what it's like to be dependent on pain meds, and other meds for that matter, to give me a life, and to anyone giving you a hard time about "not giving it time" I think you already knew the answer when he gave it to you. It's intimidating to talk back to a doctor who holds your pain control in his hands. It's HARD to say "Hey, NO, I will not take this or that because I know my body" because they are the authority figure sitting there deciding basically on how you are going to live your life. Are you going to submit to him and take what he says or are you going to call him back and say that this plan is not historically what helps you and heres why.

                  I rambled a bit there, but it's a VERY sensitive issue for me. I know what it feels like. I've had doctors in my past take away ANY sembelance of a life that I had on my meds because they thought they knew my body better than I did. They were wrong!

                  I'm sorry you're going through this and I hope you get your normal routine of meds back. I can see his point, he doesn't want you to become oversedated, but cutting your pain meds by that much is downright SCARY!
                  *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


                  • #10
                    It it aint broke....

                    Kara,

                    I will be thinking of you! I often wonder why Doctors do such strange things sometimes. If it "aint broke don't fix it" would seem to apply. I am so sorry you are feeling this way. Seems like if he wanted to lower how much medication you were taking he'd not add the benzo.

                    Big HUGS!

                    I hope it can be worked out somehow so you can feel good and be pain free or at least pain less to the point of being able to function and live some.

                    Kara
                    Last edited by Kara29; 02-11-2007, 11:03 AM.
                    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                    I also have some journals of my journeys, past and some present at:
                    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                    Comment


                    • #11
                      Thanks Kara and Sandy!

                      I feel like I'm being such a big baby about this! I have stayed in my pajamas the last two day (its pathetic) I'm just so frustrated with it all.....

                      Doctors baffle me sometimes!

                      Atleast I was getting moderate relief from the 30 mg's.....I just feel like my life was yanked away from me.

                      Oh....the stress.

                      I probably WILL call and beg for my old regiment back! BUT aren't I stuck with the 15's for the rest of the month???

                      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


                      • #12
                        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


                        • #13
                          I really don't know. I guess you'd have to talk to your doctor about that. Sometimes insurance companies freak out over things like this too and will not let you get a refill during the month simply because.....just because! They don't want to pay for 2 rx's. He could verbally tell you to take the 30's but I would get it in an RX in WRITING so that when, and if you present it to the pharmacy they can see that the doctor authorized the change, so you wouldn't have enough to get through the month without another RX. I wish it didnt have to be so hard! I've come home many times from my appt wishing I'd spoken up more....this time I did and got what I wanted. My pain doc is a very nice man, but I'm STILL intimidated by him because he holds so much power over me.

                          Please let us know what the doctor says.
                          *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


                          • #14
                            Pain and Power

                            Like Sandy mentioned. Pain Meds and the Doctors that prescibe them don't always realize how much power they have over our lives. If they don't give us the pills that work for us, we don't function. One doctor visit one way or the other can change our whole lives. Let's hope Kara, that you can talk this over with your Doctor tomorrow.

                            A little side story while I am thinking of it:

                            I told the surgeon before he reconstructed my new bladder, that the pain was like if I stuck a needle in his eye and then asked him to try to drive home, eat, spend time with his wife and kids, sleep, and then get up the next day to perform major life altering operations with the needle still there. I asked him if he thought he would be able to live, laugh, love, play and work with the needle in his eye. He looked at me and said, "So in other words, the pain is debilitating?" YES! He understood after that. He did an awesome surgery on me. (I'm pretty sure there were no needles in his eyes)


                            Kara
                            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                            I also have some journals of my journeys, past and some present at:
                            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                            Comment


                            • #15
                              Kara

                              Take a deep breath and remember that at the end of they day no matter what your doctor says its your choice what meds you take!

                              I know how horrible you feel right now and I know how it feel so be taken off a medication which you NEED and rely on to get you through life!!! I've been there trust me but IF its not working for you dont be afraid to tell your doctor what you want to do!

                              He/She will be doing the best for you so why not give the new meds a try?! at the end of the day if they dont help you can just go back on the other meds which you know help you.

                              dont worry about it though and if you feel you cant cope with the pain then ring your doctor back asap and make sure they listen to you!

                              Never ever stop eating because you will make yourself feel even worse as you are depriving your body of nutrients which you need! Just eat plain food if you are frightened of it irratating your bladder but never ever starve yourself.

                              good luck
                              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

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