The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Topomax withdraw

Discussion in 'Pain and Inflammation' started by Misfit Toy, Dec 3, 2014.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I wanted to post this. I had said before that Topomax made me a zombie. When I first started, it was kicking my butt and all I wanted to do was sleep. I had to taper back to 12.5 mg. Even on such a small dose, my pain was reduced by 40%. That's huge.

    But...alas, other symptoms or side effects came on. I became freezing on it. No matter what I wore, how the heat was at 75 degrees, I was bone cold. I could not warm up. My CFS doc said this was the norm with Topomax. His direct quote, "it can be the devil. It's a great drug, but it's got some negative side effects."

    Then, the oversleeping turned to full on insomnia. Going to sleep at 5 to 6 am. What a nightmare. I would get up at 2 pm sometimes, 2:30. This was NOT like me. I normally go to bed between 3 and 3:30 am. I know, some are like...well, that's later, but it makes a huge difference to go to sleep at 5 am. My day would start when everyone else was ready to come home from work. It was messing me up mentally.

    I called my rheumatologist. Told him what was going on. Told him I wanted to stop the Plaquenil for Sjogrens. He said, "No, these symptoms are from the Topomax." Stop it. So, I did. I stopped it Sunday.

    Now, I can't sleep AT ALL. I sleep 3 hours with the help of Tizanidine. Lovely

    I am in so much pain and in full on insomnia mode. This stinks. I can't stand medicine. Every med brings side effects that suck. It helped with pain, it just brought on insomnia and freezing cold and I lost weight on it. 6 pounds and let me tell you...I can't afford to lose weight. I had no appetite on it.

    But...now I can't sleep and my pain is through the roof.

    So bummed. But, feel the need to give people this info.
     
  2. Nielk

    Nielk

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    I'm sorry about your painful experience. I'm surprised that your doctor told you to stop taking it cold turkey. topi max should be titrated down slowly as to avoid withdrawal symptoms.
     
    WillowJ likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    @Nielk I think The reason he had me stop it quickly is because I was only on 12.5 mg so going lower seems maybe pointless? I'm not sure.
     
    WillowJ likes this.
  4. Martial

    Martial Senior Member

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    Probably best just to continue staying off of it. There are many other things you can try for the sleep and pain, medicinal and natural options.
     
  5. Nielk

    Nielk

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    The withdrawal symptoms should diminish every day. I hope.
     
    Misfit Toy likes this.
  6. AndyPandy

    AndyPandy Making the most of it

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    Sorry you are going through this @Misfit Toy. Thinking of you.
     
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  7. john66

    john66 Senior Member

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    I have no experience with Topamax, when I stopped cymbalta, I was counting the grains. Cymbalta made me gain weight that was unnatural.
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    Antidepressants can do that. I hate that! I started Remeron for sleep and I will not be on it long because the last time it made me FAT. Oompa Loompa fat.

    But I slept 9 hours straight last night! Woo hoo! :thumbsup:
     
    WillowJ, AndyPandy and zzz like this.
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    It is also normal to have loss of appetite and loss of weight with topiramate.

    I didn't know it could make one cold.
     
    Misfit Toy likes this.
  10. Misfit Toy

    Misfit Toy Senior Member

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    @WillowJ -wasn't your daughter on this medicine? I vaguely remember...or you had an issue with it?
     

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