National Seizure Disorders Foundation is a 501(c)3 Non-Profit Organization bringing order to seizure disorders since 2010.
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.
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*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.