Epilepsy Talk

Clinical Trials. YES or NO? | February 10, 2011

If I was asked to take part in a clinical trial, I’m not sure what I’d say…

First there’s the fear factor. Would I be a guinea pig for something dangerous? Would they take away my meds? Would it hurt me? Would it change something in me?

I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/

He patiently explained that before any clinical trials can begin, the med goes through rigorous testing and must be accepted as viable by the FDA.  I’d be able to keep taking my regular AEDs (Whew!) and I’d be monitored very carefully by medical specialists, every step of the way.

That made me feel more secure.  Because with every visit, both my health and seizure status would be checked and closely followed. So, if there were any negative effects, the specialists would know immediately.  And if there was any danger, my testing would be stopped, right then and there.

Then I got curious. What exactly happens in a Clinical Trial?

David Albaugh explained that it’s really quite simple. Some people are given the actual pill. Others are given a placebo (with an inactive substance in it). Neither the patients, nor the medical team know who has what. (Blind study) Which makes it kind of mysterious and exciting. (It’s like trying to cheat on the written part of your driver’s test. You can’t, because the person beside you has a different test! I learned that the hard way!)

Then I got hopeful. I could learn more about my seizures. I could possibility control them. All it took was trying this new adjunct drug along with my regular meds.

So, I wondered: Could this be the answer? Could this finally be my “magical med” mix?

I have to tell you, I kissed a lot of frogs before I found my answer. From Dilantin (which made me a zombie) to Pheno (which made me a double zombie) and dozens of others over the years.

And like me, you know that finding the right combo of AEDs is a crap shoot. (That’s why they call them “Clinical Trials!”) The prospective med has to be thoroughly tried and tested before it can become available.

But I couldn’t stop thinking: What if this really did work? Then I let my imagination go a little wild and thought, what if this could lead to more freedom? (Bye-bye helmets, bye-bye cane!  Yeeee Haaaa!)

More importantly, I wondered, What if this new discovery could help control not only my seizures but also other people like us?

We all know that nobody wants epilepsy to rule their life. And nobody should have to.  That’s why this Team Epilepsy project gives me such hope.

There’s this wonderful saying: “When the world says Give up, Hope whispers: Try it one more time.” Sounds like good advice to me…

NOTE: Text taken from an interview with David Albaugh, Director of Patient Advocacy, Team Epilepsy (http://www.teamepilepsy.org/)


6 Comments »

  1. Good Morning Phylis,

    My answer would be YES! If the clinical trial was in an area convenient to me & my seizures were still uncontrolled. After all, we are Still guinea pigs, even on the meds available to us. 🙂 My med is the oldest med available & they are still finding ‘new’ side effects. So What the Heck? 🙂

    Love Candi

    Like

    Comment by candi — February 10, 2011 @ 5:01 PM

  2. Well, this is an exciting adjunct med for partial seizures. I’m really psyched about it and thrilled with the opportunity to be of some help…

    Like

    Comment by Phylis Feiner Johnson — February 10, 2011 @ 7:33 PM

  3. I have been a guinea pig for 3 drugs. One was Tegretol which was great. I took that when I was in college. Neurontin when I was working.
    The last drug I probably didn’t give it enough chance.

    Neurontin was the only one I had a reaction in the dbl blind study. I had more seizures during the time period. Even when I knew I was taking the drug. The last test drug began w./ an l

    Like

    Comment by Toni Robison — February 11, 2011 @ 3:04 AM

  4. This is very exciting!
    It’s so awesome that you have a ‘servants heart’ and want to help others. It takes special people like you and Toni to help kick start the rest of us. Thanks
    I believe we have been given grace, mercy, and power beyond comprehension for our situations, Once we feel the peace that goes with it, we’re unstopable. you go girl!!!!
    Blessings

    Like

    Comment by Charlie — February 12, 2011 @ 12:03 PM

  5. […] Trials. YES or NO? « Epilepsy Talk via Clinical Trials. YES or NO? « Epilepsy Talk. This entry was posted in Epilepsy. Bookmark the permalink. ← Epilepsy — Advice and […]

    Like

    Pingback by Clinical Trials. YES or NO? « Epilepsy Talk | Living With Epilepsy — March 13, 2011 @ 9:39 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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