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  • #16

    Today was the first day I had an appointment with a pain clinic doctor. He did put me on gabapentin 300mg. Plus a low dose of Morphine Sustained Action Oral. They told me to just take the Morphine tonight and then tomorrow try the gabapentin and go from there. Do you think the gabapentin is working for all of you?


    • #17
      I know that the gabapentin is working for me, the only problem I am having is sleepiness. I am not worknig so I can rest when needed but I a hoping that this passes soon. I am so tired of being tired. My Dr increased my dose and now I take 400mg three times a day. I don't know if taking all of it at night would work for me because it seems to help me as I continue to take it through the day. I still have pain but now my pain is more localized to my bladder, before I hurt constantly in my entire lower abdomen and lower back. I can also now tell what food cause me trouble, in the past that wasn't possible for me.

      I hope it works for you. Let us know how you do with it. Be aware that taking that and the morpine is likely to make you very tired in the beginning.

      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #18

        Hi Sandra,
        Thanks for the information on it. They only have me taking 300 mg x 3 times a day. I was reading about it today and read that it makes you gain weight. Have you or anyone that takes this med gained weight from it? I sure don't need to gain any more It did seem like it did help me today. I did feel a little tired. But the pain from the IC and Vulvodynia did seem to be a little better. This was the first morning since 2002 that I woke up and didn't feel like I had been hit by a truck. so that was good. I did wake up at 3:00 am, and wasn't able to go back to sleep. It seemed to keep me awake.
        Last edited by lfocht; 06-02-2011, 02:40 PM. Reason: Made a mistake


        • #19


          I am glad you are having good luck with it. I hope I do to.Did you start out on 300 mg also? Can you tell a difference from going t\up to the 400 over the 300mg?
          Last edited by lfocht; 06-02-2011, 02:41 PM. Reason: goog


          • #20

            It sounds like the gabapentin is helping most of you. I hope it will do the same for me.I find that when I wake up I can't go back to sleep. But am trying it again tonight to see what happens. I also take Elavil and Atarax. I only take 50mg of Elavil at night and one Atarax. Those two don' t seem to bother me.I am up all thru the night and usually when I lay back down I can to sleep but last night I wasn't able to. also take ambien cr before going to bed and that use to help me go back to sleep. Maybe last night was just an off night, plus it was my first night on it.


            • #21

              Gabapentin has been very helpful to me, especially with vulva pain and nerve pain in the pelvis. It took along time for me to adjust to 300mg three times a day. Recently my dose was increased to 600mg three times a day. I'm adjusting and at times feel very tired. For me the longer (day's, month's) it's in my system, the less I feel tired. I guess my body gets used to it. I still have to take pain medication, but my pain is controlled better. Wishing you a pain free day!
              Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

              Thankful: For all the support and comfort I receive on this site.


              • #22
                So is it a pain med then? In seeing a new doc on Friday and I know she doesn't prescribe pain mess. So I don't wanna ask if it's classified as one. I feel like I have nerve pain in my urethra. And for the last month, I've had an awful time with getting up in the middle of the night. I take 75 amitriptyline and that doesn't help. But 1 hydrocodone 5/325 will help me feel relatively "normal" during the day. Even up to 12 hours. I'm trying to get off the hydro and take Tramadol 100mg twice a day tho.
                symptoms when in a flare:

                I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                *I have a fibroid on my uterus near my bladder.

                100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                Flexoril 10mg (doesn't work)
                Hydrocodone 5/325 PRN
                Cetalopram 40mg *severe anxiety over flare

                Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                My urethra are very tight.

                currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012

                find me on Facebook! Brandy Schildknecht Covington


                • #23
                  Yes, it is for nerve ending pain.
                  It can be effective, with small doses.
                  Current Medications:
                  Trileptal - MS
                  Amantadine - MS fatigue
                  Trazadone - sleep
                  Elmiron -since March 2007
                  Gabapentin - pain
                  Citracal - osteopenia
                  Vitamin D - deficient
                  Valium vaginal - as needed
                  Prelief - as needed
                  Fish Oil


                  • #24
                    So since many on this thread have taken Gabapentin - and it is originally intended for epilepsy...... do any of you wear the ID bracelet stating that you are on an anti-spasmodic??

                    Every website I came accross that speaks on specifics of gabapentin ( and the like) have said that you should wear an ID bracelet stating that you are on an anti-spasmodic in case of emergencies.

                    I wonder if this is because the website is assuming the intended patient is Epileptic?

                    My DH isn't comfortable with me taking it without an Emergency bracelet (if that is required), as he is out of town so often, it would be terrible if I had a bad reaction/accident somehwere, and no one knew what I was on......


                    Dx'd IC : 9/2010 Dx'd PFD : 4/2012

                    Currently on:
                    *Back on Elmiron [100mg] + *Elmiron/Bicarb/Lido INSTILLS 2x weekly----*Nortrel Birth control--*MagOx400--*Nitrofurantoin (1 after intercourse to avoid UTI's)--*Prelief--*Prosed--*Clonizapem--*Flexeril 10mg--*Zyrtec
                    *PT for IC&PFD - Both hands on/all-up-in-there approach, and the breathing techniques/stretching approach--- helpful, but difficult to continue at home and make time in daily life

                    Didn't work:
                    *Nexium ,*Sanctura , *Enablex ,*Atarax ,*Allegra,*Arginine
                    *Elavil (2 pills and I passed out, cold on the floor....)
                    *Hydrodistention - Done by the best Dr, but did not prove to relieve any pain over long term at all
                    *Gabapentin (DANGER - Caused suicidal thoughts, inconsolable crying & erratic behavior when mixed with Clonazepam & Flexeril)

                    Hair loss/thinning/breakage Elmiron 300mg daily caused to my hair.... it is NOT a slight side effect