Aug 152011
 

News of Unites States FDA approval and release of new AED, Retigabine, on the American market provides hope for over 3 million Americans currently living with partial seizures uncontrolled by current AED’s. Retigabine has shown robust efficacy and safety as demonstrated in two large, completed Phase III trials conducted in patients with refractory epilepsy receiving treatment with up to three antiepileptic drugs(AED’s).

Retigabine or ezogabine, is an anticonvulsant used as a treatment for partial seizures. Developed by Valeant Pharmaceuticals and GlaxoSmithKline by the European Medicines Agency under the trade name Trobalt on March 28, 2011, and by the United States Food and Drug Administration (FDA), under the trade name Potiga, on June 10, 2011.

Retigabine works primarily as a neuronal potassium channel opener—that is, by activating a certain family of voltage-gated potassium channels in the brain.This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine and neuropathic pain.

A personal account of Retigabine success:

National Seizure Disorders Foundation Executive Director, Tonya Heathco, has a special interest with Retigabine. Tonya is an active volunteer in human drug studies for Retigabine hosted by Vanderbilt Neurology Clinic,Nashville Tennessee.  Diagnosed with X-Linked Periventricular Nodular Heterotopia in the last 1990′s, Tonya was experiencing over 150  unpredictable seizures a month. ” I was almost at a loss and facing the reality of being non-productive for the rest of my life. I was not about to give up.  Epileptologist, Dr. Bassell Abou-Khalil, at  Vanderbilt in Nashville,TN introduced me to the study for this new drug. Having trust in God and trust in Dr Khalil was crucial to my decision to enter the study.  Knowing whatever the outcome the study results would benefit the seizure disorders community was the deciding factor. I volunteered without reservation.”  – Tonya Heathco
Today seizure management is attainable. Because of the addition of Retigabine, Tonya’s seizures have dropped from 150(categorized at 5 different types) a month to less than 12 simple partials a month.
Side effects have been minor and very different from other AED’s Tonya  has taken in the past.  Extreme drowsiness is most common in most cases of Retigabine use. Highly uncommon are side effects felt by Tonya: numbing of face and lips, increase of hyper-thought process*, and a remarkable yet temporary increase in appetite. These side effects appear approximately one hour after Retigabine is administered and usually fade about 90 minutes after  onset. Long term side effects are of no concern to Tonya because now she has positive seizure management and takes life one moment at a time. Additional therapies such as diet modification, weight control, stress management, and social integration skills bring the promise of complete seizure control in her future.

Please Post Your Comment Below

Founder&Executive Director, National Seizure Disorders Foundation

Founder&Executive Director, National Seizure Disorders Foundation

 

 

 

 

 

Note:
*Hyper-thought process: a term coined by Tonya  to describe thoughts during side effect phase of Retigabine usage.  Hyper-thoughts are extreme thoughts of imagination.  Usually very humorous. Example: Hyper-thought process instills so many humorous thoughts into one’s mind at one time, one may laugh until tears stream uncontrollably. This process suddenly shuts off 90 minutes after Retigabine is absorbed.

  17 Responses to “Unites States FDA approves new AED: Retigabine”

  1. Dr Pincus, I look forward to speaking with you about my experience with this drug. You and I already have contact via email . I would like to schedule a time and date suitable for both of us. Please respond via email when you are ready.

  2. Tonya,
    How might I speak with you, initially first by email or phone but not on this posting. I am a doctor and am writing on egozabine and would like to interview you. I am at Case Western Reserve University. thanks.

  3. Tonya, in a recent SCI show on television, I became elated to learn that a side effect of Retigabine had a very positive effect on Tinnitus. I do not suffer from any form of Epileptic seizures but I have suffered from Tinnitus for over 40 years. I would be appreciative if you would send me your thoughts on this as if it is true, I would like to ask my Dr. for a prescription to try. Thanks very much in advance

  4. Hi tonya
    My 7 yr old has about 10 grand mals a day. Mostly right when she falls asleep. During the night and upon wakening. They have began to last up to an hour at a time. She normally receives 15 mg diastatyjksgekSh 2x a day in addition to her daily meds of topamax klonipin frisium banzel and weaning off keppra. She has tuberous sclerosis. The dr has prescribed her trobalt and we are waiting for it to be shipped from Europe this is our last resort. Do you think that this affects you differently than the other anti seizure drugs? Should I be hopeful?
    Thanks and good luck!
    Bethany McGovern

    • Bethany,

      Every seizure patient is different so I cannot tell you yes Trobalt will be her miracle drug. I will tell you never give up hope. I will respond the rest to you through direct email.

      Plenty of Peace for you and your daughter,

      Terrific Tonya Heathco, Founder
      National Seizure Disorders Foundation

  5. I can’t even begin to comprehend what it must be like to have any number of unpredictable seizures, let along 150 a month! What an inspiration you are Tonya!

    • Thank you Marty, I am grateful you do not have to imagine and live a life with seizure disorder. I encourage you to stop in again and continue your awareness of seizure disorders so that you can pass it along to someone in your circle of influence. When the spirit moves you to give, NSDF now has a convenient donate button ready for our supporters.

      Many Blessings -
      Terrific Tonya Heathco, Executive Director
      National Seizure Disorders Foundation

  6. Hi Tonya

    You are a brave woman and i take my hat of for you. People like you
    help the world to be a better place for many people.

    Regards
    Theuns

    • I appreciate the compliment and the comment Theuns. Without regard to my own health I took part in the drug study to benefit seizure patients and I wrote about my experience here to inspire readers to step out of their comfort zone to take positive action for their fellow man. It’s my intention to stir fires under my readers to help them contemplate doing something positive to better mankind and our planet.

      Blessings -

      Terrific Tonya Heathco, Executive Director
      National Seizure Disorders Foundation

  7. Hello Tonya

    Very inspiring article. Sounds as if you have been involved in something that will make a difference in many people’s lives. I know many people will be thanking you for volunteering for the study.

    Thanks

    Perry A Davis Jr
    Music City

    • Perry, Thank you for your comment. I am in the study for my people, the seizure disorders community. Without the approval and use of this drug so many more could be experiencing lack of seizure control.
      I appreciate your compliments and the moment you took to leave your thoughts.

      Peace -
      Terrific Tonya Heathco, Executive Director
      National Seizure Disorders Foundation

  8. It sounds like the side effects from the drug far out weigh the seizures. I am curious as to what kinds of emotional therapy you are working on? As I commented before, I suffer from occasional small seizures, but I can only describe them as a very deep daydream state which temporarily effect my short term memory. I believe last time I had one I worked through some emotional stuff. My room-mate gave me a camera while I was going through one of these moments the last time. I have an album on my Google+ page called fugue moment. I took some very interesting shots. All though they only last an hour or a few hours it throws my whole day off.

    • Wow Nicole, Thank you for sharing. Sounds like you’ve described something in the simple partial classification of seizures. In the medical field they are sometimes referred to as “auras” . There was a time not too long ago I would have 150 seizures a month, Many were auras. Frustrating because no one else knows how you feel at that moment and it does wipe out your whole day and much of your short term memory. Have you seen a doctor for these episodes? Keep a journal of when they happen and a specific description. If they begin to worry you or you actually lose “time” ( awareness) then it is time to see a neurologist. Don’t talk yourself out of it. There’s support for you at National Seizure Disorders Foundation. NSDF has our blog, our community on FB, our Fan page on FB, and a Library of Knowledge. When your ready for help with any of these resources, let me know.

      Thank you for your comment. You are in our prayers -
      Terrific Tonya Heathco, Executive Director
      National Seizure Disorders Foundation

  9. Tonya,
    Wow, I have never been around anyone who has seizures. I used to watch a lot of Discovery Health, and I can’t imagine someone having to live with that. You are a brave woman to join the study. Without studies there would be no progress just like David said, and Congrats.

    Jaden

    • Thank you Jaden. Living with seizures and a seizure disorder does make life interesting. When you want to learn more, visit National Seizure Disorders Foundation blog again. It’s been recently reported 1 in 26 people in America will experience a seizure sometime in their life. That being said, awareness and education are valuable. Thank you for the comment and the compliments.

      Peace -
      Terrific Tonya Heathco, Executive Director
      National Seizure Disorders Foundation

  10. Hi Tonya,

    Congratulations are in order. If where not for the brave and willing study participants, like you, who took on this study, we would not be making near the progress in AED treatments that we are.

    Peace be with you,

    David H. Paul
    the Follow Your Bliss guy

    • Thank you David, Helping others is the reason I entered into the study. The positive effects I experience are a plus. Even through a cancer scare, the drug study has been worth the time and energy,

      Peace is with me -
      Terrific Tonya Heathco, Executive Director
      National Seizure Disorders Foundation

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