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  • Anyone taking anti seizure drugs?

    I am going to be seeing my IC specialist in a few weeks and since I am not doing better since my last visit we will be looking into anti seizure meds. Has anyone tried this and had success? It seems to make sense for me; the majority of my major pain comes from spasms of my bladder and pelvic floor muscles. Plus my frequency isn't helped by any other drugs I have tried. I just really want to know how these work for IC patients and what side affects come along with them so I can be objective when I talk with the Doctor. I am going to look in the IC survival guide to see what is listed there as well, but I really appreciate feedback from other IC patients.
    Thanks!
    Rachel
    DX's:
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


  • #2
    About 5 weeks ago I was started on neurontin (Gabapenten is the generic). I have seen some improvements, though I am now unable to drive because of some side effects (or, I don't drive most of the time). I started with 100 mg 3 X daily, and now I take 300 mg 3 x daily--my new uro at Strong is going to double this dose eventually. It has probably given me more relief than other things. Good luck!
    Lish
    Besides IC, I suffer with MS (there are several schools of thoughts about this), IC, VV and IBS-C. Used to avoid ALL meds and solve everything herbally, boy have things changed!

    Follow (to the best of my ability) IC diet and IBS diet.
    Current Medications: Just had an interstim implanted 10-5-07 at Strong Memorial in Rochester. 2nd interstim placed 2-12-00 and then following an infection had it removed & put back in 4-?--09; currently having botox injection procedure done every 3-4 months; Current M ed:noritriptyline HCL 40 mg nightly, Gabapentin 3 X daily, 10 mg Toviaz 1X daily; 5 mg Rapaflo 1 X daily; diazepam 2 xs daily for spasms, macrobid 1 x daily during even months, paired with trimethoprim 1 x daily during odd months to avoid UTIs and becoming immune, prazosin 1 X daily, oxycarbenzapine 2X daily, baclofen 2X daily, som a 3X daily & hydrocodone or oxycodone for breakthrough pain management. I am back on methadone 3 xs daily for pain management--things just got too hard. Now diagnosed with VV and I apply lidocain 5% in a cellulose cream 3xs daily. I also take capsulated cholorophyll with each meal, bifidophilus flora, and I-X for iron. I have, as needed, instillation of lidocain jelly, heparin, kenalog, and Marcaine through catheterization.

    Comment


    • #3
      Thanks for letting me know. I think we may try Valium for the pain first. Those were the two options whe wants me to try. I am seeing a Uro at Strong as well. You have a longer drive than I do! I have heard they are really good there. I have only had one visit, but it was a great experience. He took a good 20 minutes to talk to me before doing any exams. I was so used to Doctor's just rushing in and taking 2 minutes to talk and then rush out that I was taken aback.What sort of side affetct did you have? Just curious. I really like to know what I am putting in my body.
      Rachel
      DX's:
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

      Comment


      • #4
        Klonopin

        I am currently taking 0.5mg of Klonopin for restless leg syndrome and the Doc told me it will also help for PFD and bladder spasms. I had been taking Elavil which does work well, but there is the weight gain on it.
        Klonopin at higher doses is used for seizures, lower doses for restless legs, bladder spasms, and PFD.
        Sammi

        Sammi

        Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
        Diagnosis: IC, PFD (both in remission)

        Comment


        • #5
          I am on Lamictal but not for IC. I have been taking anti-seizure medicine since 1990 so if they help they didn't help me because I wasn't diagnosed with IC until 2004.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #6
            I have had luck with Antiseizure Meds

            I take Lyrica and it helps me a lot with pelvic pain issues. In the past I have had good luck with Neurontin and Keppra. All of these are antiseizure medications.

            I wish you well if you try any of them!

            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


            • #7
              I have had great success with Neurontin (Gabapentin), even at fairly low dosages! It's definitely worth a try. Currently, I only take 200mcg at night which cuts down on the daytime side effects!
              current meds:
              cytotec 200mcg twice daily
              toprol
              allegra

              ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

              dx: hashimoto's thyroiditis 1998
              dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
              dx: endometriosis 2003
              dx: innapropriate sinus tacchicardia 2005

              meds tried but failed:
              elavil (6months)- severe tachycardia
              elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
              a bunch of others



              Me and my best friend's baby (also my Godson!)

              Comment


              • #8
                I take both Lamictal and Lyrica -- the Lyrica is specifically for the IC and fibro pain, and the Lamictal is for a different problem altogether. However, I find that I have no real side effects from either, and the Lyrica really does a great job at reducing shooting-type nerve pains (and it's done wonders for my all-over-the-body stiffness and pain from fibromyalgia).

                I hope you have success with them if you decide to try it out.
                ****
                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


                • #9
                  I've tried the Vallium Suppositories will little help. I was taking 10mg at a time up to 4x a day but I found using 20-30mg at a time to helps a bit more. Now I haven't tried the oral vallium but my dr says it's ver addicting and said I would be so loopey if I took it orally. Hope this helps

                  Comment


                  • #10
                    Originally posted by sami4 View Post
                    I am currently taking 0.5mg of Klonopin for restless leg syndrome and the Doc told me it will also help for PFD and bladder spasms. I had been taking Elavil which does work well, but there is the weight gain on it.
                    Klonopin at higher doses is used for seizures, lower doses for restless legs, bladder spasms, and PFD.
                    Sammi
                    Thanks Sami!
                    I wason Elavil, I had to take 20 mgs to get any significant relief and it was great at night, but I get WAY too tired on it. Even when I took it at 7:00 pm I would pass out on the couch the next day as early as 10:00 and with a 2 year old that was very bad! I am assuming the anti seizure meds will be a low dose. Have you had any side affects?
                    Thanks for answering my ?'s.
                    Rachel
                    DX's:
                    IC; PFD; possible Fibromyalgia; IBS;

                    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                    I've Tried:
                    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                    Currently using:
                    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                    Comment


                    • #11
                      Originally posted by IcyAngel23 View Post
                      I've tried the Vallium Suppositories will little help. I was taking 10mg at a time up to 4x a day but I found using 20-30mg at a time to helps a bit more. Now I haven't tried the oral vallium but my dr says it's ver addicting and said I would be so loopey if I took it orally. Hope this helps
                      That might be an option for me. I tend to get loopy on anything that says it may make you dizzy, etc. I also have terrible vaginal pain that we can't find any explanation for except IC and PFD. While many of the other things I am trying help take the edge off of daily pain and get me through flares without pulling all of my hair out, that pain is the worst! And I get basically no relief from it. I just take a hot bath and lots of meds and try to lie down.
                      Rachel
                      DX's:
                      IC; PFD; possible Fibromyalgia; IBS;

                      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                      I've Tried:
                      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                      Currently using:
                      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                      Comment


                      • #12
                        Thanks everyone!

                        It helps to know your experiences and specific names of drugs as well. My Doctor knows his stuff, but I think he appreciates if I do a little research too. He is also willing to listen to my concerns reguarding side affects, addictions, cost, etc. I haven't made the appointment yet but will be this week and now I have a list of things to ask about (have to make use of the time, it is a LONG drive to see my Doc, but he is a specialist and very good!)
                        Rachel
                        DX's:
                        IC; PFD; possible Fibromyalgia; IBS;

                        Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                        I've Tried:
                        three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                        Currently using:
                        Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                        Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                        I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                        Comment


                        • #13
                          Hi there. Personally, I've tried Neurontin and Lamictal.

                          I was on quite a low dose of Neurontin for a while, then I moved up to about 900mg a day. I didn't notice a difference, though. I don't think it affected me much at all, positively or negatively. In terms of IC meds I've tried, I put Neurontin in the "neutral" category.

                          I'm taking Lamictal right now for bipolar disorder. I've been on 25mg since September 2005. It hasn't affected my IC positively or negatively.

                          Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
                          Current IC treatments: menstrual suppression
                          Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
                          As-needed treatments for other conditions: Klonopin, Ambien

                          Comment


                          • #14
                            Rachel, I just want you to know that my husband's doctor gave my husband an anti-seizure for back pain. I did not like that at all. I freaked out on it. But the good news my husband is doing well with it. It does help his back. So maybe it will help IC.

                            Sending hugs, Trishann

                            Comment


                            • #15
                              trileptal

                              I'm on trileptal now. Not for IC. Noticed it helped my IBS and my IC flares. Helps prevint my migraines but actually gives me TMJ, among other side effects. It does help with the whole problem called bracing or blocking.

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