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My husband is enrolled in a stage 3 trial of brivaracetam (that link is pretty much a stub) an anti-seizure medication related to Keppra. It is supposed to have much better seizure control, without the mood issues. My husband became evil on Keppra, and had to stop it, in spite of its pretty good seizure control.

 

The results so far have been pretty spectacular. He had to start with 3 weeks of Keppra (which is still evil, if you wondered), and then was switched all at once to the brivaracetam. He had some clear side effects the first few weeks, but they have mostly cleared up, or at least reached a level he can deal with.

 

We went into see the study coordinator, and his ndoc yesterday. They were very excited, and when they heard he hadn't had seizures since he started the Keppra, plus the month he has been on brivaracetam, the ndoc said *no one* in their trial had had seizures. I was taken aback, and I said, "Are you kidding me?," and she said no.

 

Here is a list of studies recruiting, some by invitation only. The invitation only studies are in red, so don't just look only at the green links. It continues onto a second page.

 

There are conditions. I believe you have had to have tried Keppra, and you are also limited to two ACs, DH dumped Dilantin to get into the study. He remains on lamotrogine, and tri-leptal. He can only use ativan PRNs once a week. But he hasn't had a seizure in two months, and is maybe a bit spacey, but still the person I married. This is pretty huge for him.

 

I know there are people here who have poor seizure control, and I have no idea how easy it is to get into the trials. But I wanted to make sure you knew about them. The ndoc and study coordinator were thrilled, and are pretty much certain it will be approved by 2016. I was shocked at the length of time, and said I thought it took 9-15 months, and they laughed, and said, "Yeah, like 10 years ago." Which is just about when my dad stopped practicing, so that explains that. But they said he will get the medication for free until it comes onto the market.

 

After the surgery, he went almost 3 months before he started seizing again. The next time we see them, it will be just short of 3 months. We are kind of agog.

 

I just wanted to make sure you all knew about it. They pick up cab rides to and from the hospital, so not driving isn't an issue. But you may have to live with someone as a witness.

 

Good luck. I hope someone has a chance to try it.

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That is awesome news, for you and your husband. I'm happy its working! My BF takes Keppra and doesn't have the mood issues, thankfully (it took 3 months to get his insurance to approve it, its expensive) He hasn't had a seizure since he started. *knocks wood*

 

Thanks for the link. I'll get my BF to send it to his neurologist, for future use, if necessary.

 

I hope your husband continues without seizures. I hope the spaceyness goes away, too. Best of luck to the two of you, you sure deserve it, and I'm glad you found that.

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