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Topamax or Topiramate? Any Exerience With This Medication?

Discussion in 'General Treatment' started by Stone, Jul 31, 2010.

  1. Stone

    Stone Senior Member

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    NC
    I've recently been prescribed this medication and have NOT had a good experience with it. Has anyone else ever used this medication? Have you had any success with it? Have you had a negative experience with it? Please share.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Hi, I used this to help leg pains i get at night and interfere with my sleep. I started with 25mg and it worked well for awhile with pain and sleep but needed to increase the dose until i got to 100mg, prior to that i had no side effects at all then hitting 100mg i had a constant metallic taste in my mouth and constant reflux that wouldnt go away with antacids, these side effects dont sound bad but they were at an unbearable level, so i stopped. I can understand why they say people lose weight on it cause u feel to sick to eat. I moved to topamax as lyrica had pooped out on me but after stopping topamax i then moved to neurontin which is doing the job fine although lyrica was better for sleep, i may go back to it down the track though. I have taken the occassional dose of topamax at 50mg with other sleep meds and it has helped improve sleep quality.

    Can i ask what u are using topamax for???

    cheers!!
  3. Stone

    Stone Senior Member

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    NC
    Sure, I was using topamax for severe and constant nerve pain in my legs that has been diagnosed as neuropathy. The primary care doctor (not the neurologist) started me on 25 mg twice a day. The first day I took one since I got it filled in the afternoon, and within an hour of taking it I was hysterically crying and feeling unbearably hopeless and my pain was terrible. The next day, I took one and within 30 minutes I could feel my pain start to ramp up to maddening levels, and again had uncontrollable crying. Also, I could not eat at all on this medication which is very bad since I've been trying to stop losing weight. This insanity continued till the middle of the next day when my husband took me to the emergency room where I was told to stop taking the medication because it was making my pain worse. I'm going to call my doctor now and leave him a message about my bad topamax reaction.

    I had high hopes and was encouraged by what the pharmacist said when we picked up the medicine, but it's not to be. I don't do well on meds like this ever. I can't take Neurotin, Lyrica, Cymbalta, Savella, or Chantix. Now I can add Topamax to the list.

    I'm glad it worked well for you for a time and it's too bad the side effects overtook the benefits. Good luck with your current regimen. BTW, I don't think Neurontin is considered helpful for sleep in general. Best of luck to you!

    Thank you for sharing your experience. It's so helpful to me.
  4. serenity

    serenity Senior Member

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    Austin
    i could hardly walk the next day after taking Topomax for sleep. i never took it again. my limbs were heavy & i was so tired i could harldly move. not what i am looking for.
  5. Alesh

    Alesh Senior Member

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    Czech Republic, EU
    I was using it for about six months for the constant localized headache: no result.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
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    australia (brisbane)
    look into gabitril its also an anticonvulsant which may help with nerve pain and help with sleep. Other things worth looking into are tramal, klonopin or valium or low dose amitrptyline or doxepin, the last2 are antidepressants but are old school and can be sedating and were used for nerve pain prior to all the new drugs like lyrica etc, also look into muscle relaxants, i have found baclofen helpful for good sleep but there are many oither out there too.

    So maybe have a google of these things then ask your doc to trial them.

    cheers!!!

    hope something helps u soon, i feel your pain.
  7. Stone

    Stone Senior Member

    Messages:
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    Likes:
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    NC
    I've tried some of those and others. Neurontin does absolutely nothing good or bad. Lyrica makes me unable to stay awake under any circumstances. Cymbalta caused violent, take-me-to-the-hospital stomach pain and vomiting. Savella made my orthostatic intolerance intolerable, and I had to literally crawl to the bathroom and sit on commode with my head down. Very fun medication. Valium does nothing for the pain. Klonapin does nothing for the pain. Low dose amitryptaline worked well for years early on in the beginning of my disease but it caused carbohydrate cravings so bad I gained 60 pounds on it. I recently gave it another try and had to stop because of the 'donut dreams' and I started eating in my sleep, and it did nothing for the pain. My doctor today has called in for me the 5th anti-convulsant medication. I have horrible reactions to these medications. I called back, spoke with the nurse, of course, and told her that I will not take this medication until the doctor explains to me why he thinks this 5th anti-convulsant medication will help me and not give me a bad reaction. The reason the neurologist who diagnosed me with neuropathy did not put me on such a medication is that I can not take them. I also told the nurse that I am too sick to tolerate another reaction and another trip to the emergency room. Puh-LEEZE!

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