Announcement

Collapse
No announcement yet.

Miracle!!!!!!!!!!!!!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Oh thank you ladies so much!!! I slept all last night and all day until 1:30 this afternoon! I didn't get up ONE TIME to go to the bathroom!!! I'm seriously ready to cry I am so happy!!!

    It was 18 hours this time and I still hadn't taken any pain meds and I still wasn't in pain. NO PAIN. OH MY GOSH! I only took it to make sure I didn't have any withdrawals. I still haven't felt any bladder pain. I felt a little ache but then I realized it was because it was 3pm and I still hadn't gone to the bathroom. ROFLMAO!!!! OMG!!!! Then I pee'd buckets!!! No retention nuthin!!!
    I'm not going to say the rem....word....don't want to jinx it....but oh my goodness!!! Maybe...maybe!!!

    All my fibro pain, all my headaches, and I'm losing weight like a crazy person!!!

    I want to first of all thank God...then my children for putting up with me, then my mom....then all of you lovely ladies for being such a fabulous support system!!! I LOVE YOU ALL!!!!

    GOSH I'M SO HAPPY!!!
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #17
      Great News

      I am so happy for you! :woohoo: :woohoo: :woohoo: I hope that it continues to work for you! Sending big smiles your way and hoping that this one works. Hang in there.

      Comment


      • #18
        awsome!
        Angela aka sleepyangel30

        Comment


        • #19
          Little pain as I came up towards time for my Topomax dosage and that was about it. I took my Morphine and felt like I actually had MORE pain AFTER I took it than BEFORE. So I'm going to have to do some experimenting with that.

          Does anyone have any experience with narcotics making their IC pain worse?


          Thanks guys!
          http://www.TheCraftyEwe.etsy.com

          Comment


          • #20
            Now, I want to give it a try even more. I can't wait to get back to my doctor.

            Comment


            • #21
              Ok, I've lost enough of my butt and all of my belly rolls that I'm going to go pull out my skinny jeans and try them on. Not sure if they'll fit yet, but since I'm not sure where the scale is (think I threw it off the cliff in behind the house) I need a gauge. LOL!
              I'm not kidding. The rolls are gone. The belly pouch is almost gone, and my thighs are shrinking and my hips and thighs are taking on normal girly dimensions.
              The swelling in my hands and arms, ankles, etc... all is going down. And still, no fibro pain, no IC pain, no migraine pain. No hunger pain. I've since researched and learned that seizure meds are given for fibro pain with success which I assume is why this is working for me. I'm going to ask to raise my dose soon to 100 mg a day because I can feel my symptoms leveling out and the relief kind of leveling out as well. My appt is on the 23rd and will ask then.

              Oh hon! I hope this works for you!!! I'll be praying your doc lets you try it and that it works okay?!!!


              HUGS!!!
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #22
                Moonheart,
                I am really happy for you.. You know with me having to give up elavil I wonder if this would be a good alternative.. I have gained so much weight with the elavil..I read somewhere that this drug is not recommended for people who have had kidney stones.. I have had a few.. Have you heard anything on this?

                Ronda
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


                • #23
                  I am so happy that you are getting pain relief and weight loss with Topamax!! I actually started it last Monday too! They started me on 25 mg 1x a day last week. Then tomorrow, I go up to 25mg 2x a day. Then, by the 3rd week, it is 3x a day, and then, the 4th week, 50mg 2x a day. Already, I lost 5lbs this week. I just dont have much of an appetite on it and then, when I eat, food doesnt taste the same, (which is a good thing for me!!! )

                  I am pretty excited about it too! I hope that I get pain relief from it too! That's the only thing that is worrying me. So far, I am not noticing any difference in my pain. But, no other side effects either, (except the lack of appetite :woohoo: ) But, it will KILL me if I lose weight with this and then it gets taken away b/c it isnt helping with pain, (which is the reason the pain Dr. gave it to me.) Though the pain is bad, it has been bad forever and I have been fat too! If I am gonna hurt anyway, it'd be nice to at least lose some of this weight!

                  I am so glad that it is helping you! I know you have really had a hard time for a while. I am glad that you have found something that helps and has this wonderful side effect! :woohoo: Keep your fingers crossed that when my dose gets a bit higher in a few weeks, that my pain relief will come too!

                  Congrats!!!

                  Hugs,
                  Amy

                  Comment


                  • #24
                    Hi Ronda!

                    I do know that it causes kidney stones, and this could be because it's a diuretic. However!
                    Don't let it scare you off. Just drink LOTS AND LOTS of water! I have a history of stones also and no way am I gonna stop this med!!!! No way!!!

                    I have NO PAIN! I'm still taking my morphine, but I don't have pain with or without.

                    GET THIS....

                    I measured since I can't find my scale.

                    I have lost TEN INCHES...count them....TEN INCHES off my waist and ten off my butt!!!!!!!!!!!!! OH MY GOSH!!!!

                    I'm in a size 12 down from a size 16 in just one week!!!

                    I know that's because I was retaining a ton of water, but still! It's wonderful!!

                    I have heard stories of people losing anywhere from 60 pounds in six weeks to 75 pounds in six months. So try to get on this if you can!
                    http://www.TheCraftyEwe.etsy.com

                    Comment


                    • #25
                      Amy,

                      Praise the Lord you are already on this!!!

                      I would do anything, anything to stay on this! ANYTHING. I hope you see what I"m NOT saying. ANYTHING.

                      I think you aren't on high enough dose to see any kind of results with this med.

                      You need to be on a min. of 50mg and you need to take it all at once to see it work. I would take it at night so it will help you sleep.

                      You have fibro right? This should take away your fibro pain too. You may end up not having to take the Neurontin and prednisone which both cause weight gain right? If you are taking weight gainers, then they may cause you to not see as much weight loss. But you said you saw five pounds loss right?

                      I think once you start raising your dose you'll see results. Just don't take it spread out. Take it all at once or you won't get the same benefit. I started out at 50mg and it was all at night. I'm going to go to 100mg this week, and will probably take it all at night as well.

                      Good luck guys! I'll be praying for you all! I'm praying that this is the answer for all of us! I pray this is the miracle cure we've all been looking for!

                      HUGS,
                      Moonheart
                      http://www.TheCraftyEwe.etsy.com

                      Comment


                      • #26
                        Originally posted by Moonheart View Post
                        Amy,

                        Praise the Lord you are already on this!!!

                        I would do anything, anything to stay on this! ANYTHING. I hope you see what I"m NOT saying. ANYTHING.

                        I think you aren't on high enough dose to see any kind of results with this med.

                        You need to be on a min. of 50mg and you need to take it all at once to see it work. I would take it at night so it will help you sleep.

                        You have fibro right? This should take away your fibro pain too. You may end up not having to take the Neurontin and prednisone which both cause weight gain right? If you are taking weight gainers, then they may cause you to not see as much weight loss. But you said you saw five pounds loss right?

                        I think once you start raising your dose you'll see results. Just don't take it spread out. Take it all at once or you won't get the same benefit. I started out at 50mg and it was all at night. I'm going to go to 100mg this week, and will probably take it all at night as well.

                        Good luck guys! I'll be praying for you all! I'm praying that this is the answer for all of us! I pray this is the miracle cure we've all been looking for!

                        HUGS,
                        Moonheart
                        Thanks for your quick reply! Yes, I read between the lines there! LOL! I already thought the same thing if it helps me lose the weight. As for the Neurontin, I have actually been off it a few months, (just havent changed my sig yet. ) For the last 4 months, they have been messing around with my neuropathic meds. First, they upped my Neurontin to the max dose and when that didnt work, they titrated me back down and took me off of it. Then, we tried Keppra, but it made me a lunatic! So, I was off of it in a week. Next, we tried Lyrica, and it was 2 months of titrating it up then back down when it didnt work. So, now, we have arrived at Topamax. But, I have wanted to try Topamax forever! I have encouraged lots of people here to try it that have had weight problems, and neuropathic pain. I have heard GREAT things about it forever, but this is the first time I have ever got to try it.

                        I definately agree with you on lots of the meds having the weight gain side effect (Neurontin, Lyrica, Prednisone, Elavil, etc.) But, the Elavil is the only one I am on at the moment. (10mg at bedtime.) The Prednisone, I only take it when I am in an active Lupus flare. Prednisone is a double edged sword for me. I do great on it, and feel AWESOME on it! ALL of my symptoms totally disappear when I am on it, every time! The Fibro, Lupus, IC, Pain,....well, everything goes away! BUT, (and that is a big BUTT, ) I gain a TON everytime I have to go on it, (like 15-20lbs per episode, usually). Also, it is SO hard on my kidneys and has so many nasty side effects, that I just cant take it all the time. So, it is one that is reserved for Lupus flares for me. (Fortunately, I havent had one in a while now! *knocking on wood*)

                        So far, I havent lost that much yet, but I am still thrilled with it! (After seeing the kind of numbers I have been seeing, I am just thrilled to see it going down! ) I agree with ya though, that I think once I get the dose titrated up higher that I will start to see bigger results. (The NP told me that at the end of the month, I can take the 100mg in 2 doses a day or once a day, whichever I preferred.) So, you think the once a day is better?

                        I am just really going to be thrilled if it helps me lose weight OR if it helps my pain, but if it does BOTH, I will be so happy, I will be doing cartwheels in front of my Pain Drs. office!!

                        Thanks again for all your help! And congrats again on finding your Miracle!! I am SOOOOOOOO happy for you! You definately deserve this!

                        Hugs
                        Amy

                        Comment


                        • #27
                          Thanks hon! You deserve it too! Isn't it exciting?! After suffering in varying degrees for so many years, it is just stunning to feel no pain. The only times I've felt no pain was when I was pregnant or nursing, or had an epidural, lol. It's just the most amazing thing to have happen, and SOOOO unexpected! I took it for the weight loss! I didn't expect anything else! And to have the body pain disappear also?! Wow!

                          I really hope your pain goes away soon. I'll be so thrilled. Play with the time you take it and all too k? I've been taking DHEA with it also so don't know if that has anything to do with it, probably not, but just thought I'd throw that in.

                          Write any time if you have questions k?

                          LOTS of HUGS!
                          http://www.TheCraftyEwe.etsy.com

                          Comment


                          • #28
                            Oh, and don't worry about the weight! Try measuring. See if the inches are there.

                            I've lost ten inches from the waist and ten inches from my hips. That's HUGE, literally!
                            http://www.TheCraftyEwe.etsy.com

                            Comment


                            • #29
                              Hi Moonheart.
                              I am so happy for you!!! Now is topomax only given to treat migraine headaches or is it being used to treat IC as well? I would be willing to give it a try if it can help with the IC pain. I hope this continues to work well for you.
                              Jen

                              Comment


                              • #30
                                I started my 100mg dose a couple weeks ago, and I've been taking all of it at bedtime. I was down 5 lbs this morning! I could handle this keeping up, for sure! It's hard to say how it's helped pain-wise, since I've had my period for ten FREAKING days, and with my endometriosis on top of the IC, it's always very painful no matter what I take for it. I am almost out of pain meds so it had better stop soon, I cannot refill for quite a while yet. Hopefully when it's done I will see some positive results from the Topamax, since the Neurontin didn't do anything for 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

                                Comment

                                Working...
                                X