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Spring 2005 ❖ Volume 15 ❖ Spring 2005 ❖ Volume 15 The mission of FACES is to improve the quality of life for all people affected by epilepsy contents through research, education and awareness, and community-building events. Great Fortune ..................1 Great Fortune by Richard Shane From the Program Coordinator ...................2 Sleep Center Opening .....2 Sleep & Epilepsy ............3 Announcements ..............5 Level Four ......................5 FACES Gala ...................6 Developing A Hybrid Neuroprosthesis For Epilepsy Treatment: A Status Report. ................7 Can You Eat Your Way To Seizure Control? The Ketogenic And Atkins Diet For Epilepsy .............8 John Durrua’s Story ......10 Evening Epilepsy Lecture Series ..........................10 Donations .....................11 NYU Comprehensive Epilepsy Center ...........12 Richard Shand, ten months after surgery, on top of Aspen Mountain with niece Tatum Shane and brother Steven Shane. The FACES newsletter is edited by I used to have complex partial seizures What is the value of improving your health Christine Toes and Melissa Murphy approximately every two weeks, never more to the best it’s been in 22 years? Priceless. with support from than 3 weeks seizure-free. With the inspi- Then discovering how to help others with Josianne LaJoie, M.D., ration, guidance and confi dence instilled what you’ve learned? Additional wealth. Daniel Miles, M.D. and in making the right decision offered to me Ruben Kuzniecky, M.D. Thank you Dr. Devinsky, Dr. Doyle and the by Dr. Devinsky and then the incredible team of professionals at NYU. Furthermore, compassion and obvious brilliance of the thank you to everyone who accompanied remarkable Dr. Doyle, I am able to share me on my journey in search of an answer to with you this life changing experience. controlling my seizures. continued on page 4 Steering Committee From the Program Coordinator Chair Orrin Devinsky, M.D. What an incredible few months it has Three new faculty members will be join- Program Coordinator been at FACES! The FACES Gala ing the Epilepsy Center in the next few Christine A. Toes raised over $2.7 Million for epilepsy months. Arthur Grant, M.D., Ph.D. from Research Coordinator research and programs. Read more Univ. of California - Irvine, is an NIH Melissa Murphy about the event on page 6. grant recipient who will be working on research into cognitive functioning in Jeff Benowitz The FACES Steering Committee Brendan Byrne epilepsy; Katherine Mortati, M.D. who reviewed and approved two Public Margot Chvatal has just completed a two year fellow- Service Announcements (PSAs) that Kate Cooney Picco ship in epilepsy and neurophysiology at Larry Davis & Donna Emma were developed by the Canadian Epi- Harvard Medical School; and Alcibiades Sharon & Peter Donovan lepsy Alliance. The PSAs have been Rodriguez, M.D. who has completed Judy Ebner revised at no cost to FACES through Harry Falk epilepsy and sleep fellowships at the a strategic partnership with the Anita Anna Fantaci Mayo Clinic. We are thrilled to welcome Kaufmann Foundation to include the Colleen Farrell them to NYU. Jane Gilbert FACES logo and 800 number. If you Peter & Kathy Gogolak have any connections in television that Finally, my last day at FACES is May Elizabeth Jarvis might help us to get these aired pro 5th! It has been wonderful working with Lynn & Noel Jeffrey Ruben Kuzniecky, M.D. bono, please let us know. everyone for the past fi ve years. Thank you so much for your generosity and Warren & Kathy Lammert The Young Professionals (ages 20- Leonard & Marilyn Lehrer support of FACES. Melissa Murphy, 32) met for brunch on 2/26. Several Randi & Jeff Levine the FACES Research Coordinator, has members asked if they could help put I.D. Luckower been promoted, and we will be hiring Leila Mansouri together a Young Professionals Event a new Education Coordinator in the Amy & Seth Markowitz that would be priced at $100-150 a next few weeks. I would love to stay Karen & Jeff Mayerson ticket. If you are interested in serv- Anne Metcalf in touch, so please update your address ing on a committee to work on this Mary Miceli, RN books with my new email address: event, please let us know. The event Daniel Miles, M.D. [email protected]. Elizabeth Millstein would take place in the fall or winter Nancy Novograd of 2005. Lawrence & Gaye Pecker Sharon Perhac Christine Toes, M.P.A. Jaimee Sabato Mame Kennedy Schrager Richard Shane Remi Silverman Leslie Smith Stevie Solomon Candice Stark Sleep Center Opening Amy Steinman Cohen David Swinghamer The NYU Comprehensive Epilepsy Center is pleased to announce the open- Blanca Vazquez, M.D. ing of the New York Sleep Center, at 724 Second Avenue in Manhattan. Leah & Michael Weisberg More than 40 million people in the United States suffer from sleep-related Neil & Stacey Weiss disorders such as snoring, fragmented sleep and sleep apnea. However, Richard Wheeless only about fi ve percent have been diagnosed and treated according to the Donations to FACES support epilepsy National Sleep Disorders Research Center. Since sleep deprivation can research and programs for all persons trigger seizures in people affected by epilepsy, we are pleased to offer affected by epilepsy. All donations are tax-deductible. Please e-mail your this important service to our patients. For more information, please visit questions about FACES to http://www.nysleepinstitute.com or call 212.871.0227. [email protected]. 2 Sleep & Epilepsy By Meeta Bhatt, M.D., Ph.D. A relationship between sleep and epilepsy has been long recognized. In 1929, Langdon-Down and Brain classi- fi ed seizures with respect to their relationship to sleep as diurnal (daytime), nocturnal (night time), and diffuse (day + night). In 1962, Janz introduced the term, “awakening epilepsy.” Further, it was realized that seizure patterns have a tendency to remain stable with respect to sleep-wake cycle. For example, Juvenile Myoclonic Epilepsy (JME) occurs shortly after awakening in the morning or at night, or at sleep onset. This helps researchers and physicians analyze the etiology, prognosis, and plan treatment. To understand the relationship between sleep and epilepsy, one needs to understand the mechanism of each. Epilepsy is dependent on genetic and acquired factors that increase excitory brain cell activity. This increased brain cell activity in turn helps to transform an interictal discharge (subclini- drugs (AEDs) produce a variety of alterations in sleep cal seizure activity) into an ictal state (clinical seizure). architecture and varying degrees of daytime sleepiness. Sleep consists of two distinct stages in humans: non-rapid Further, several authors have reported a high incidence of eye movement (NREM) and rapid eye movement (REM) primary sleep disorders in the epileptic population, most sleep. NREM sleep accounts for 75-80% total sleep time notably obstructive sleep apnea syndrome (OSAS), peri- and REM sleep accounts for 20-25% total sleep. NREM odic limb movements in sleep (PLMS), and narcolepsy or sleep is further divided into 4 stages ranging from light to idiopathic hypersomnia. Individuals with epilepsy may be deep sleep time. The NREM and REM sleep stages recur predisposed to OSAS due to the adverse effects of AEDs, in a cyclic manner throughout the night. During NREM particularly sedation and weight gain. It has been shown sleep the brain cells discharge at the same time which that treatment of the primary sleep disorder frequently facilitates the spread of seizure discharges. In contrast, leads to improvement in seizure control and in daytime during REM sleep the brain cells do not discharge at the sleepiness in these patients. same time, hindering the spread of seizure discharges. In addition, the muscle tone is preserved during NREM sleep Thus, sleep and epilepsy are reciprocally related. Improve- which permits seizure associated movements (e.g. jerking) ment of nocturnal sleep and appropriate treatment of co- to occur, while the muscle tone is reduced in REM sleep existent sleep disorders may be associated with a reduction preventing seizure related motor movements. in seizure frequency and a substantial improvement in quality of life. Thus, understandably so, seizure discharges are more frequent in NREM sleep, increase gradually with deep- Meeta Bhatt, M.D., Ph.D. ening level of NREM sleep and have a greater tendency Director, New York Sleep Institute to spread in the brain during NREM sleep. On the other Assistant Professor, Neurology (Clinical) hand, factors that lead to REM sleep deprivation exacer- Department of Neurology bate epilepsy. New York University and Medical Center E-Mail: [email protected] Now looking at the reverse aspect, how does epilepsy affect sleep? Researchers have shown that sleep fragmentation is noted in all epilepsy types even on seizure-free nights. This results in excessive daytime sleepiness or fatigue, more on days after nocturnal seizures as compared with 724 Second Avenue • New York, NY 10016 seizure-free nights. Further, sleep defi cits are noted to cor- Telephone: 212.871.0227 • Fax: 212.871.1827 relate with severity of seizures. Additionally, antiepileptic www.nysleepinstitute.com 3 Great Fortune… continued from page 1 I learned and now cling to the belief and make my memory even worse. OR. I remember being wheeled in that all things can happen to all kinds I was still hesitant, but Dr. Devinsky and seeing Dr. Doyle and holding his of people. As a result, it is necessary said, “Richard, if you’re worried about hand. I didn’t want to let go. “Please to maximize every day to its fullest. a little white scar on the side of your Dr. Doyle, take good care of me,” I We owe it to ourselves and to the less head...” He made me realize that the said. I knew he would. fortunate who would trade anything seizures were affecting my ability to I also knew my parents and two broth- to be in our position.
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