What else is there for me now that i've pretty much exhausted all of the drug options?

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I have TLE and myoclonus and I am a 24 yr old female. I have exhausted most AED's and have been on klonopin for 7 months. its been increased three times and i am now taking .5mg 3x a day. it has reduced my absence seizures but my myoclonic jerking is getting worse. My neuro says it is not related to the epilepsy after a 72hr ambulatory EEG. I experience very violent jerks of my upper body most right side and tremors. the tremors just recently moved to my legs as well, I recently had noticable tremors in my legs two days ago that didn't go away for about an hour. What treatment options do I have because i feel that my quality of life is gradually declining. 

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4 Replies

  • Posted

    Hoping you get some help soon. Im wondering if its related to the klopin itself. 
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  • Posted

    Can the neuro change the clonazepam?
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  • Posted

    What anti epileptic drugs have you been on in the past . Hope u don't mind my asking.

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  • Posted

    A  little like you, I thought I had exhausted the medication market, and no I'm still no controlled, but I do have my answer, so maybe it's time for you to go and push for yours, after many years, of them telling me try another one, I was eventually was sent for an MRI in London, it's the training college for epilepsy, there they did test, and more tests, and finally, 2 and half years on I've been told I've got metabolic epilepsy, which means a high protein/fat low carb diet is what I require, and that I need to   avoid/ restrict my favourites sweets/alcohol lol. Some people in the hospital were there to see if operating was an option, of having. I have complex partial mild seizures , with myoclonus jerks, I do believe hormones okay a key role in this too, take care, and hope your next visit back to your GP or specialist is productive. 

     

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