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Will I be on Topamax forever?
  1. #1
    lusciouslady1 is offline New Member
    Join Date
    May 2007
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    Delaware
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    Question Will I be on Topamax forever?

    Hello..I'm new to the board and this is my first thread. I joined because I have taken Topamax everyday now for almost 2yrs because I was a chronic migraine sufferer. Granted, Topamax is a blessing because I am migraine free but when I tried to go off of it in January, three days later they started up again. The next day, I was right back on the medication. I am scared that I will be on this medication for the rest of my life! But the migranes are sooooo baaaadddd. Loss of vision, nausea and vomitting, and the pain! I am pretty much unfunctionable when I have one. I went through the cat scans, blood work..everything was normal. Just wanted to know if anyone else out there was in the same boat? UGH!

  2. #2
    mjohnson06 is offline New Member
    Join Date
    Apr 2007
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    4

    Default

    Yup, exact same thing, and for 2 yrs also. If I go w/o it, I will get a migraine within 2 days. It's horrible, but the only thing that has helped me also. I just pray I wont grow a tolerance to it, and wont have any negative effects later. I did have to stop taking it when I got pregnant though, but luckily ( I guess due to all the hormones) I barely had any migraines until after my baby was born, then I had to start taking them again!

  3. #3
    TmaxBrainDamage is offline New Member
    Join Date
    Aug 2007
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    4

    Default Topamax and YOU

    Hello, I too have been on Topamax for 2 years. I have seizures so I can convulse if I don't take the topamax but I've decided this drug and my body are like oil and water. I have had so many problems right down to the fact that I'm like 99 year old woman on this drug w/ no short term memory. It got so bad, I lost my job, my insurance and my neurologist would only give me this drug. Why doctors are pushing this drug down everybody's throat is a huge mystery. She literally y refused to help me get on another anticonvulsant patient assistance program. She did however give me Exelon which is what they give people with Alzheimer's Disease. Things got so bad I had to move to Florida to live with my mother. After a relatively successful jaunt, leaving home at 20, getting a degree at NYU, moving to Los Angeles, I was forced to move into my mother's tiny apartment to get help. Her doctor refused (I need a neurologist, which is the same thing I heard when I went to free clinic in LA.) I am now seeking help at epileptic foundation in Florida and I have found others who have had similar experiences on Topamax.

    it was "free" but was it really? I lost two years of my life, my job, my independence and I would literally sit in job interviews and space out, and respond with a "uh...ummm...uh", not remembering whta I was asked. My self confidence was in the toilet. I also had serious eye problems, charged up a ton on my credit card at the opthalmologist. They were stumped. It's "eye herpes, no it's recurring corneal erosion, no wait, it's a mysterious virus that mimics eye herpes and recurring corneal erosion." and they treated symptoms with tons of drops, a contact lens bandaid and they came right back weeks later.

    I have found many people who have had similar experiences so this drug either meshes with you or it doesn't.

    I am now weaning off this drug and have ringing in my ears, severe joint pain and headaches. I am charging another AED on my chredit card. I cannot be on this drug anymore. I'd rather die than live the way I have the last two years.

    So, only you know if this isn't for you. My advice would be to get off it if you feel that the side effects are too much. Talk to your doctor abotu putting you on another medication for migraines. Topamax isn't the only AED and it isn't the only anti-migraine medication...it's is, however, one that is being pushed down patients throats and marketed like wildfire by the pharmaceutical industry/doctors.

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