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I have to start all over

I’ve had epilepsy for 11 years. Recently, my doctor started tapering me off my medication. I’d been on 3,000 mg of Keppra for years which we both agreed was way too much. I was extremely aggressive back then; I’d break things, punch walls, even smash windows. Over the next few months, we reduced the dose to 500 mg, and I started to feel like a new person.

My doctor said that if a patient is seizure-free for more than two years, they usually try to remove the medication completely. So she told me to stop taking Keppra altogether. I asked if she was supposed to taper it down more slowly, but she said no just stop taking the 500 mg. I’m also on 200 mg of Lamictal.

Last night, after being off Keppra, I had a seizure in my sleep. My mom said she found me gasping like I couldn’t breathe. I really thought that part of my life was behind me, but I guess it’s back. My whole body’s sore now, and I can barely walk.

  1. Hi this must be so discouraging for you. I would definitely let your doctor know what happened and see what they recommend for next steps. It seems like too much of a coincidence between your sudden stop in medication and your seizure. Please keep us posted with what you hear back from the doctor. Try to rest in the meantime. Jill (Team Member)

    1. Several people have suggested that I get off my medication since I have not had a seizure since 84. I simply refuse to at this sage of my life, am 62 years old I cant take the chance to start over. I am able to drive and do other things, nothing risky though.

    2. I can understand what you are saying. I am glad you haven't had a seizure in this length of time and you still have the ability to do the things you like. Jill (Team Member)

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