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  • Pain Clinic - Horrible experience today.

    So I went to my 1st ever Pain Medicine Clinic appointment.

    What a terrible experience.

    I have been having awful side effects to my medication I use for my bladder (Doxepin which is a tricyclic) and have tried most other treatments which have not worked. I was referred to a pain clinic to get help and was treated horribly!

    He told me it was just panic attacks, said it wasn't the medication when I know my body and know it is the medication, he said well you can either stay on the Doxepin, or you can stop taking it and take Flexeril (which is a mild muscle relaxer) which I researched and shouldn't take because I have an irregular heart beat. He was absolutely rude to both my mother and I and when I asked him, what happens if my pain becomes a 10 which it does when I stopped taking the Doxepin a while back... his response was "The pain won't kill you, just breath through it."

    My mother and I were dumb founded.

    I don't know what to do.

    The medication I am taking is making me so sick it's scary, my stomach is getting shredded from the medication and am having stomach pains after I take it and throwing up the last few days, I can barely eat and have to force feed myself every day which I do, I have lost 16 lbs in just two months, I shake all of the time, I near faint all of the time, and for some reason my arms and legs have shooting pains down them all day now. And I have developed a strange breathing problem which is not like the ones you get from a panic attack ( I know what those are from many years ago). I am loosing hand fulls of hair every day which started immediately after I went back on it, and the list goes on....

    I have two thoughts or theories, (Doxepin is in the same family as Amitryptaline just to give a reference), and have done a bunch of reading on both of them. I think for some reason it has enduced panic attack, so yes I am having panic attacks but it is caused by the Doxepin, and two I believe it may be tanking my blood pressure. These are not things my body has just decided to do on there own and are not just going to fix themselves and go away in a few weeks, a month etc. It has been two and a half months and things have not improved but only gotten worse.

    I am sorry for going on a rant but I am frightened, nobody seems to know how to fix this problem without me being in a huge amount of pain and I don't know what to do, I feel like I don't have a voice and know body hears me. I am feeling hopeless and am afraid I am running out of time.

    I don't know if I should just stop taking the Doxepin and just be in huge amounts of pain until someone believes me and helps or what I should do....
    but I know I can't keep taking this medication.

    I wish someone could just admit me to the hospital and help me manage the pain as I go off the Doxepin, get me stable and then I can start try other treatments when I am not so beaten down and fragile.

    Sorry again for the long email,
    thanks for reading if you made it this far.
    Live Well
    Love Much
    Laugh Often!




    Diagnosed:
    Dec 2005
    Diagnosis:
    IC
    Cysto/Hydro:
    Dec 2005
    Other Conditions:
    Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
    Meds for IC:
    Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
    Alternative Treatments
    Physical therapy for 8 weeks, Acupuncture (just started).
    Other Meds:
    Skelaxin (as needed)
    Didn't work:
    Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
    Tried:
    Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

  • #2
    If you have a primary care physician who makes you feel trusting, I suggest you start there and ask for referrals as needed.

    I hope you get some help soon.

    Donna
    Stay safe


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    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


    • #3
      I was like you last year in severe pain and I became allergic to either the lithium or paxil. My whole body shook so bad, I got weak could not eat or sleep. I personally got off the paxil and lithium made an appointment with my phychiatrist, which he said was the right thing to do. The shaking finally stopped, my uro found the right treatment for me, and I am so much better.
      I hope and pray you can find relief soon and as far as that pain clinic goe's shame on them. Talk to your doctor about how they treated you and see if you can go somewhere else for relief. Let us know how things turn out for you, I pray that you go into remission.
      <center>
      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
      </center>

      Comment


      • #4
        I might be tempted to go off the med and when you are in alot of pain go to the ER.

        go back to your reg Dr. and tell him what happened at the pain man, and what you think is going on.

        Sorry you are having so much trouble.

        Hugs MG
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment


        • #5
          Hi Donna,

          My primary care physician is the one who referred me to this guy. I am going to see if I can be admitted to the hospital. I am completely exhausted and can not get off of this medication alone at home at this point. I do not have the energy to take care of myself any longer.
          Live Well
          Love Much
          Laugh Often!




          Diagnosed:
          Dec 2005
          Diagnosis:
          IC
          Cysto/Hydro:
          Dec 2005
          Other Conditions:
          Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
          Meds for IC:
          Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
          Alternative Treatments
          Physical therapy for 8 weeks, Acupuncture (just started).
          Other Meds:
          Skelaxin (as needed)
          Didn't work:
          Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
          Tried:
          Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

          Comment


          • #6
            Hi linda,

            Thank you for the response, I will need to go off the Doxepin right away, however am affraid of the pain at a 10, but it looks like I will have to do it anyways. I am going to see if I can be admitted to the hospital today as I am to a point with exhaustion I can no longer really take care of myself.
            Live Well
            Love Much
            Laugh Often!




            Diagnosed:
            Dec 2005
            Diagnosis:
            IC
            Cysto/Hydro:
            Dec 2005
            Other Conditions:
            Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
            Meds for IC:
            Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
            Alternative Treatments
            Physical therapy for 8 weeks, Acupuncture (just started).
            Other Meds:
            Skelaxin (as needed)
            Didn't work:
            Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
            Tried:
            Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

            Comment


            • #7
              Hi Mother Goose,

              It seems I will have to go off the medication and somehow deal with the pain. I go to my pch today and tell him what happened. I am going to ask to see if he can admit me as I am to exhausted to go off the medication alone at home.
              Live Well
              Love Much
              Laugh Often!




              Diagnosed:
              Dec 2005
              Diagnosis:
              IC
              Cysto/Hydro:
              Dec 2005
              Other Conditions:
              Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
              Meds for IC:
              Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
              Alternative Treatments
              Physical therapy for 8 weeks, Acupuncture (just started).
              Other Meds:
              Skelaxin (as needed)
              Didn't work:
              Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
              Tried:
              Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

              Comment


              • #8
                I sure hope you get some help soon, at least you know it will take hospitalization to help you get off the meds. Sometimes this is what needs to be done then the doctors can start a clean slat.
                IC diagnosis 3 weeks ago.
                Vesicare 10 mg once daily
                IBS and Gerd-Zegerid
                IC diet
                Elmiron 100 mg three daily
                Hydroxyzine 25 mg at night
                Amitriptyline 10mg at night
                Diovan 60/12.5 daily
                Topral 50 mg daily
                Zoloft 100 mg at night
                Klonopin .5 twice daily

                Comment


                • #9
                  What I would do is look up on your list of pain Dr's and look at what they treat. Find one who in their list of treatment says I.C. Then you will have a staff and Dr who understands the disease. Big hug and a prayer for you! Good luck.
                  Sylvia

                  Comment


                  • #10
                    Thank you God!

                    I have been a member of this network for many years. Back in 2005 I gave up a very great high paying job because of how bad my IC was/is. In 2006 I applied for disability. Was declined twice then was able to get a attorney. After a very long wait Today my attorney called me and it was approved. I am in shock! I just can't believe it. When I was diagnosed back in 2004 since now the awareness of IC is so much more understood . For those of you waiting hang on and be positive, your day will come. Peace and love to everyone!

                    Sylvia
                    Sylvia

                    Comment


                    • #11
                      Dolby thats good news, I am pleased for you.

                      Shamay I hope you are not reading this but are resting in a hosptial, I do hope you have found some help, I am sorry you are having to go through this.

                      Hugs MG
                      My are with you all. May you all find a way to peace and joy in your lives.

                      Comment


                      • #12
                        Thank you everyone, I am so grateful to have this forum and support, it really really helps.

                        I was not able to be admitted to the hospital as my doctor is not an admitting doctor for my kind of needs and would be unable to help. He is calling tomorrow morning personally to a pain specialist he knows to see if he can get me in in a timely manner. I will be anxiously awaiting his call.

                        I will be praying all day and night that this appointment is within a week, that they can somehow fit me in somewhere.

                        I told my doctor I am at the end of my rope, I am exhausted, hurting and scared. He said I can see that you by looking at you today that you are exhausted. I really like my pcp he's very kind.

                        And so I wait and pray.
                        Live Well
                        Love Much
                        Laugh Often!




                        Diagnosed:
                        Dec 2005
                        Diagnosis:
                        IC
                        Cysto/Hydro:
                        Dec 2005
                        Other Conditions:
                        Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
                        Meds for IC:
                        Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
                        Alternative Treatments
                        Physical therapy for 8 weeks, Acupuncture (just started).
                        Other Meds:
                        Skelaxin (as needed)
                        Didn't work:
                        Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
                        Tried:
                        Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

                        Comment


                        • #13
                          I'm so glad to hear that your pcp is trying to help you. I am completely speechless to hear that a 'pain doctor' would tell you to breath through the pain and only offer Flexeril, which for me was completely useless. You would think that he would be aware of how tricyclics can effect some people. I had terrible heart palpitations and anxiety with some of these in this class. I really hope you find relief soon.

                          Comment


                          • #14
                            Hi earthlady,

                            I know I was absolutely dumb founded. By the time I got home I was just crushed in spirit.

                            I am so grateful for my new pcp, he is so kind and understand. I am just hoping I get into see this new guy right away! *fingers crossed* And that he will be a good fit.

                            As far as the Flexeril goes, I just about fell out of my chair. I thought it laughable that someone of his expertise would prescribe something so minimal for this. All be it, he doesn't know me from adam and is taking my word on how bad the pain will get, but still. I guess it is true that pain med doctors are really sceptical of people coming in asking for the heavier meds and I kind of understand why. But sheesh, it's not like I walkded in off the street, I was referred by my pcp. :/

                            Oh and as a side note, the pain med guy from yesterday called me today and asked me if he had called in my perscription for anti nausea medication, he couldn't remember, then called me back ten minutes later and asked me what my pharmacy was, when he had it right in front of him! Just unbelievable!
                            Live Well
                            Love Much
                            Laugh Often!




                            Diagnosed:
                            Dec 2005
                            Diagnosis:
                            IC
                            Cysto/Hydro:
                            Dec 2005
                            Other Conditions:
                            Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
                            Meds for IC:
                            Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
                            Alternative Treatments
                            Physical therapy for 8 weeks, Acupuncture (just started).
                            Other Meds:
                            Skelaxin (as needed)
                            Didn't work:
                            Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
                            Tried:
                            Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

                            Comment


                            • #15
                              Makes me wonder how many other people he's 'not' helping. Sounds like he may be in the wrong speciality field.

                              Comment

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