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Much more positive pain appt follow up

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  • Much more positive pain appt follow up

    Followed up with the pain doc and signed my contract today (and got my TENS unit). I feel much better about things now. He rearranged my meds a little, is switching me from Neurontin to Topamax (I feel like since I started that I've been eating when I haven't been sleeping ). He is increasing the Zanaflex from every eight hours to every six, to take with the Percocet. No talk of stopping the Percocet this time, did mention the possibility of increasing it, depending on how all of this goes. He would rather increase that than start on a long acting; he thinks tolerance builds up faster on a long acting opioid and would rather wait on that. I am OK with that for now.

    He just seemed so much more open, and this time said he was not worried about a dependence issue with me (I got that impression with my first visit). So, I feel much better having a sense that he trusts me!
    32 years old

    former Med/Surg RN

    endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008

  • #2
    I am glad you are getting what you need. I saw your post on the TENS. Give it some time. I think you will like it. Did they show you where to put the leads? I use mine on back and when pressure is unbearable on lower buttocks region and inside thighs. That is where they placed them when I went through PT for PFD. Good Luck. I am thinking of going to a pain clinic myself, and am hopefully get a referral to the one ihurtoo goes to since she broke them in on IC.


    • #3
      I'm so happy to hear that your pain management appt went well. I know how scary it can be to worry about not having pain meds. My uro just told me that he thinks the meds he put me on will lower my pain a lot and didn't give me anymore pain meds! I hope that you have success with the meds that he's giving you.

      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


      • #4
        I'm not sure I agree with your doctor about long acting opiods causing more of tolerance than the short acting ones. I've always been told and taught it's the other way around. You have to keep taking more and more of the short acting meds because they just don't last long enough. But, it's good that you felt he was communicating with you and willing to give you pain meds.

        *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.


        • #5
          I'm with Sandy... the shorter acting ones are also more likely to cause problems than the long acting ones. However, I am happy you feel much more positive about this appointment, and I hope you do get the pain control you need.

          *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.


          • #6
            Thanks for the advice, ladies. I will kind of let him do his thing for a while, and in all honesty, I'd rather have breakthrough pain relief and I'm afraid if he started long acting ones, he'd maybe stop the others, and I don't want that to happen! I also did ask about the Provigil, and it's a possibility but he's hoping that switching off the Neurontin will help the sedation.

            I see him again in 4 weeks, but he gave me enough in scripts to last well beyond that. I can refill my month's Percocet after May 9th, so I won't need an appt just for that.

            Maybe this will be ok after all!
            32 years old

            former Med/Surg RN

            endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008