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

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  • Breezy1218
    replied
    I hope you get your meds all right, Moonheart (or did, since it's Saturday?). I suppose you would have to drive anyway, since they can't call that in, or do you mean get it from a different doctor? Sorry that I am not very up on the story!

    For other reasons that I won't go in to at the moment, I am going to be upping my Topamax to 200mg a day, and will continue to take it all at night. I hope that it continues to help my pain (and the weight loss...ha). I've had my period for two weeks and REALLY need it to end so I can see how it is helping for the daily pain!

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  • Moonheart
    replied
    Thanks hon, I'm so worried. I don't want to be, but last night was pretty awful and stressful with the office manager. Between the flu and just the touch of withdrawals, I honestly don't feel like driving an hour down to get these meds. But you know. When you're stuck between a rock and a hard place?
    I'm not suffering the worst I could, God willing, but I sure don't want it to get any worse! I think Topamax is helping with that. This med is amazing. It's listed even as helping with withdrawals. Wow.

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  • leelee88
    replied
    You got it hun... Prayers on its way

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  • Moonheart
    replied
    Could you all pray for me this morning that my doc will see fit to not hassle me about writing my script?

    This is my regular appointment, but the office manager is hassling her for some reason and I'm just worried about it.

    Thank you all for thinking about me.

    Leave a comment:


  • Moonheart
    replied
    I take mine all at night. I'm out of meds today. My doc didn't tell me she was sick and I drove an hour each way for my pain meds. I'm on 120mg of MS Contin so even though I don't really need it for IC pain I do have some various pains it helps with, and it helps keep withdrawals away. So I'm having withdrawals tonight and it's miserable.

    I have lost 30 pounds! Yay me!

    I'm going to be back on after I feel better k? Hugs all!
    Last edited by Moonheart; 05-24-2007, 03:40 AM.

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  • mary124
    replied
    I've been on Topamax for more than a year or so, and lost almost 45 lbs, (most of that was due to an illness from last year; but I haven't gain any back) went from a size 14 to a size 8-10. I now weigh about 130lbs. (haven't weighed this since my first son was born 23 years ago!) Reason I got on Topamax in the first place was due to balance problems- fluid in my brain. I take 150mg at night. Too bad it doesn't help with my IC pain!. Glad though it helps you. Question Wendy, do you take all of yours at night, or do you spread it out during the day? Maybe I need to do that? Let me know. I might need to talk to my doctor and get this changed around.

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  • Moonheart
    replied
    Originally posted by Breezy1218 View Post
    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.
    Hi Breezy!Isn't it exciting to see the scale go down?! I have only seen the scale go up for the last two years! It's been awful!

    I've only actually measured, but I can't wait to actually weigh myself.

    I have endo as well, and had a total hyst for it. I thought it hadn't died off because all my pain came back four months after my hyst. Well turns out it was IC and my hell began. So it's a miracle to have this work for the IC when nothing else really has, not even narcotics.

    How are you taking the Topamax? I wish I knew if there was some magic formula or something. Have you tried not taking any of your pain meds to see what happens? Then taking your meds if the Topamax doesn't work? I hope this starts working for you!!! I hope it does!!!!

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  • Moonheart
    replied
    Originally posted by jen74 View Post
    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
    Sorry Jen, the whole family came down with stomach flu! Actually, my son had it a few days ago and I thought he was faking and made him tough it out at school I'm a baaaaaaaaad....baaaaaaaaaaaad....mommy.

    So anyway, I had the bad belly ache all day and was confused at first because I wasn't sure if I was having pelvic pain again or what.

    Jen, Topamax has many off label applications. It's original use is for seizures, but it's being used for bipolar disorder, other mental disorders, migraines, weight loss, fibromialgia, and I've heard several cases now of IC! It's really turning out to be a miracle drug! Thank God!

    Leave a comment:


  • Breezy1218
    replied
    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.

    Leave a comment:


  • jen74
    replied
    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

    Leave a comment:


  • Moonheart
    replied
    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!

    Leave a comment:


  • Moonheart
    replied
    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!

    Leave a comment:


  • ihurttoo
    replied
    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

    Leave a comment:


  • Moonheart
    replied
    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

    Leave a comment:


  • Moonheart
    replied
    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!

    Leave a comment:

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