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  • Tension/Migraine headaches for over a month

    Please pray for me. I have been having daily headaches for over a month now. I am seeing a new neurologist who has me working up to a 75 mg. a night dose of Elavil and Topamax (50 mg 2X a days) as a painkiller in the meantime. Also, I am going to physical therapy for my neck and shoulders and going back to my psychotherapist.

    My neurologist is concerned it's Elmiron causing the headaches, but I take it out of the capsule. I've taken it since November, so it's been almost 5 months. It may be rebound headache actually. I was taking ibuprofen for more than three days a week for a couple months there when I was having dental work completed.

    My boss is creating more stress for me at work unfortunately. My rights are being violated -- rights to privacy, but also rights to when I can seek medical attention. I keep saying to God -- please help me.

    And, trust me, my hubby needs your prayers, too, for putting up with me! I think he's tired of hearing about my head hurting. Every weekend is shot unfortunately.
    Blessings, Susan


    IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

    Vulvar Vestibulitis -- Dx February 2007

    Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

    TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

    Fibromyalgia -- Dx April 2008

    Mild depression/anxiety disorder
    (Not completely cured, but on-so-much better. :woohoo



    "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

  • #2
    Susan,
    I hope things get better and your stress is under control.........sometimes you gotta love hubby's..........they do put up with our aches and pains.......but someday the favor will be returned!
    Hang in there!
    Tons of support,
    Jaime

    IC angel helping families in need for the holidays. [email protected]

    Comment


    • #3
      Thank you Jaime My husband finally took me to an urgent care in town last night. They gave me a shot of phenergal and bupernex (spelling?). I slept very well for once and had relief like I haven't had for quite a while. Today, I had a smaller headache and had to take Topamax, but didn't need to second dose. I appreciate the prayer support.
      Blessings, Susan


      IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

      Vulvar Vestibulitis -- Dx February 2007

      Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

      TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

      Fibromyalgia -- Dx April 2008

      Mild depression/anxiety disorder
      (Not completely cured, but on-so-much better. :woohoo



      "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

      Comment


      • #4
        It's possible that it's the elmiron creating the headache. It did for me. You might take the advice of your neurologist and stop taking it for a week or two to see if it could be causing your headache.

        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


        • #5
          The Topomax is fabulous and it works over time, so make sure you take it daily and don't miss any doses. If you miss, then it starts all over again and it isn't as effective the second or third time around. If you take it regularly, eventually it should work up to total relief.

          I was taking Topomax and I didn't have a headache for two years. I'm getting them again so I'm going to start up on it again hopefully. Just have to get in to the doc's.

          Take care,
          Moonheart
          http://www.TheCraftyEwe.etsy.com

          Comment


          • #6
            The topamax is wonderful. Been taking it for over 2 years now. I take 150mg at night. The only side effect that I can see is losing weight. I lost around 30 lbs since started the medicine. (needed to- or at least I thought I did. What I weigh now, haven't weighed since my second child was born and that was 18 years ago.)

            Comment


            • #7
              Sonja

              Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

              Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

              IC Diet: Very diet sensitive, esp. to spices.

              Comment


              • #8
                Wow! Now I have some new questions for my neurologist. She has me taking Elavil for a preventative and Topamax as needed for headache, not the latter for preventative, so I've taken it as needed. I didn't take it today! I best take a dose tonight. Maybe I'm misunderstanding.

                I did learn the Elavil is drying my mouth and eyes out even more than they were before though, so now am wondering if it's worth it. Very uncomfortable existance to constantly need drops, water, like a fish.

                Thanks for the feedback. I will have more to ask! :-)
                Blessings, Susan


                IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

                Vulvar Vestibulitis -- Dx February 2007

                Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

                TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

                Fibromyalgia -- Dx April 2008

                Mild depression/anxiety disorder
                (Not completely cured, but on-so-much better. :woohoo



                "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

                Comment


                • #9
                  Update

                  OK -- now I'm to stop Elavil, since it's drying my eyes and mouth profusely, and up Topamax to 75 mx 2X a day. I am having tingling, burning in my feet, so the doctor said to take potassium supplements. My husband bought 90 mg supplement at Sam's. Is there a problem with IC patients taking potassium supplements though? I've called in to my uro but haven't heard back.
                  Blessings, Susan


                  IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

                  Vulvar Vestibulitis -- Dx February 2007

                  Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

                  TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

                  Fibromyalgia -- Dx April 2008

                  Mild depression/anxiety disorder
                  (Not completely cured, but on-so-much better. :woohoo



                  "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

                  Comment


                  • #10
                    I take a potassium supplement full time. It's an essential nutrient and a deficiency can be dangerous.

                    I think of it this way: When the potassium sensitivity test is done, the potassium is instilled directly into the bladder, which does cause pain --- similar to rubbing salt into a scratch (owch!). But just as it doesn't cause pain if you eat the salt, potassium that goes through the digestive process shouldn't be a problem unless you get too much of it. (That's how my doctor explained it to me.)

                    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


                    • #11
                      I would question your doctor about why he suggests potassium for burning/tingling, which seems to be nerve pain, not cramps. Are you diabetic? Have you recently had shingles? Lyrica is supposed to be a good drug for nerve pain. Or are you reacting to some medicine adversely?

                      I'll tell you why I ask this last question. I had an allergic reaction to Gynazole, a new prescription yeast cream last year. My whole body burned/tingled, but it started with my feet. It was like a very bad case of athlete's foot. The burning was so bad. Then my tongue swelled up and I started getting a rash.

                      I don't think pot. supps would hurt you, but I am just OCD and have to have an explanation for everything these docs want to put in my body.
                      Sonja

                      Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

                      Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

                      IC Diet: Very diet sensitive, esp. to spices.

                      Comment


                      • #12
                        Yes -- my doctor is saying that she thinks the burning/tingling (feels likes little needles) in my feet and sometimes hands could be a reaction to Topamax, and she says she thinks it could be a potassium deficiency. I've been wary about taking vitamin supplements ever since I found out I had IC, which is why I asked. (You know, I still haven't heard back from my uro about potassium, but I really should just take it, like Donna says. It's 90 mg., which is in keeping with what the doc said was fine, and I don't want to create more problems for me after all Eeek!)
                        Blessings, Susan


                        IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

                        Vulvar Vestibulitis -- Dx February 2007

                        Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

                        TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

                        Fibromyalgia -- Dx April 2008

                        Mild depression/anxiety disorder
                        (Not completely cured, but on-so-much better. :woohoo



                        "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

                        Comment


                        • #13
                          Thank you for your prayers. It's been a bad March for me, let me tell you. I just talked with a fellow chronic headache sufferer and she said her neuro blames the barometric pressure changes here for all the pain he's had to try to stop in his patients. I've been put on and taken off different meds, and am starting to feel like a chemistry set.

                          I've tried DHE, Raglan (in the doctor's office), which resulted in anxiety and restlessness. I've tried Neurontin at 300 mg. and became dizzy, drowsy and nauseous, but still had the headache. I also started Elavil at 25 mg. at night and had to stop because of severe dry eye. (It was so bad my eyes felt like they were injured. I was constantly using drops with no relief and I use Restasis for chronic dry eye already.) I tried Topamax, like I said, and had burning feet at 50 mg, so she lowered it and added Zonegran at 25 mg. and I developed severe nausea and diarrhea. She wanted me to stop Zonegran and start 100 mg. Neurontin instead this week. I did that and have had severe nausea and diarrhea on and off. Now she wanted me to stop both, and when I tried to stop Topamax, I got a migraine, so now I'm taking Topamax still for fear of what will happen if I don't. (A medical assistant there tried to tell me it might be "stomach flu," but then it wouldn't be on and off, would it?)

                          I am still on Topamax then, just now at a low dose: 25 mg. 2X a day. I am just getting through this as best I can right now, and the pain isn't really gone. Any higher dose and my feet feel like they're on fire. I may need to find another doctor. She wants to try steroids for three days in a row (30-minute intravenous treatments) with steroid meds to taper off and get the headache stopped. She said that once the headache is killed, then the preventive meds will have a chance to work. That scares me, especially since I've had such strange reactions to drugs at low doses.

                          I should have had a better game plan, so I wouldn't feel so out of control now. I did ask my neuro Friday if maybe my drugs could be reaction against each other, but she researched it and said, No. I'm seeing my family doctor Monday now. I'm on call this weekend for my office and just hoping it's a slow weekend since I'm not feeling like myself. A part of me thinks I should continue with this doctor and a part says run for the hills. She at least is starting to understand that I am not the average patient and have drug sensitivities. I'm so anxious though now about what's next for me that I think it's time to move on. Please continue your prayers and thanks for "listening"/reading.
                          Blessings, Susan


                          IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

                          Vulvar Vestibulitis -- Dx February 2007

                          Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

                          TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

                          Fibromyalgia -- Dx April 2008

                          Mild depression/anxiety disorder
                          (Not completely cured, but on-so-much better. :woohoo



                          "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

                          Comment


                          • #14
                            HI! I hope you get your headaches under control. They make you feel so miserable.
                            I read your list of meds you've tried. I have a cabinet full of meds I've tried and then couldn't take. I wish I had the money I've spent on all those drugs...I could take a relaxing trip to some place warm year around! lol Roxie

                            Double Spinal Cord Stimulator surgery 8/09
                            Unsuccessful MiniArc sling surgery 12/07
                            Dx'd Hypothyroid
                            Dx'd Chronic Axonal Neuropathy & Myopathy
                            June 2007
                            Dx'd IC May 2006 (after suffering for 25+ yrs!)
                            First Cysto 1979
                            First Hydro 1981 (Many treatments since then!)
                            Collagin"Durasphere" injections for urethra
                            Gall bladder surgery Aug. 2004
                            Gastric Bypass Dec. 2004
                            Dx'd: Barrett's Esphogus July 2004
                            Dx'd: Vaginal Atrophy 2005
                            Bladder surgery 2000
                            Dx'd: IBS 2000
                            Hysterectomy (fibroids) 1999
                            Laminectomy 1989
                            Dx'd: Degerative Disk Disorder 1989

                            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment


                            • #15
                              Thanks, Roxie. Yes, that's my husband's complaint about my doctor -- all the drugs that are now sitting in the closet. It seems like I'm running each week to get something else.

                              My pharmacist asked me why she never tried Imitrex or one of the other triptans to stop my headache. I've never asked. I may make one more appointment. My husband told me this weekend that it's my body; I can say "no" if it's a treatment I feel uncomfortable trying.

                              (On a side note, I read your signature block information about using MSM. I will have to research that! I'm happy you are finding relief. Is it natural?)
                              Blessings, Susan


                              IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

                              Vulvar Vestibulitis -- Dx February 2007

                              Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

                              TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

                              Fibromyalgia -- Dx April 2008

                              Mild depression/anxiety disorder
                              (Not completely cured, but on-so-much better. :woohoo



                              "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

                              Comment

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