A STORM IN THE BRAIN

I've had Epilepsy (Grand Mal) since I was 6. It's primarily controlled by meds and am grateful for the amazing life I have and will continue to lead. However my condition is something that I wake up to every morning and constantly think about throughout each day wondering when that next seizure will possibly come. I've been seizure free for several years due to my meds and a structured lifestyle but anything remotely oustide of that strutured lifestyle puts me at risk. I'm ecstatic that there's finally some serious Media coverage and the tough questions are being addressed about this condition. I look forward to what the future holds in getting this challenge resolved. Thanks Newsweek for promoting this article and hopefully this won't be the last one we see.

Thank You,
Ben S. Barnicoat
Austin, TX

I have been afflicted with epilepsy for 35yrs now. I found the article extremely refreshing for it dramatically pointed out that we who suffer from what is considered by the vast of society as a disability, though that may be true of some of us who suffer from this illness, far from disabled. Granted the misunderstanding and acceptance of our illness has cost me at times employment, true and substaining relationships with those outside that of my family, I have learned to confront all things with a stronger attitude to achieve no matter what the obstacle that may develop. My father (who also has suffered from disabilites of partial blindness and deafness) has taught me having a disability is like running the hurdles in track (which prior to having the accident that caused this illness I excelled in), they, hurdles are made to overcome.
Due to that line of thought he provided me, in 1994 I was approached by Dr. Steven Schachter (named on pge 47 of the article) to be a test candidate for the vega nerve stimulator (VNS), due to the fact that it was found that I suffered from multi-focal epilepsy, for @ that time I did not qualify for any form of other operation that would assist in the problem. The device was implanted in 1995 and for two years I was the test subject for the device's study......and in July 1997 I was honored to take part in the testimony before the FDA (in Washington) that assisted in its passage. I have been honored to know that through the years it has assisted so many. I know that through Dr. Schachter (who for the past 16yrs I have had the honor to have him as my neurologist) continual work in the finding of a device which will provide additional control of all seizure disorders we can all take comfort that through the continual assistance and research from the medical community we will not be forgotten and now we as a body must make society feel the same way as well.

Robert Cassidy
Fmr. Member of the Board of Directors
of the Epilepsy Foundation of MA & RI

Epilepsy, the mystery of... was certainly a good article. Though The Newsweek, for the most part, as I view it, is generally quite liberal.. This article was informative, interesting & much needed* My mother suffered for approx. 60 years with grand mall seizures, with no medicine completely controlling them. She finally died @ age 68 with complications from Lupus, pneumonia & seizures. Though I am my mother's oldest daughter & her carbon copy, I have been blest not to have had a seizures, though I do suffer from migraine headaches, arthrithis & osteoporosis Than you for making the 'awareness of epilepsy' possible. Let's continue to be more 'factual, truthful, 'covering all bases' & unbiased. GOD BLESS Y'ALL***MY mother's life was well=extended because of much prayers. Very blest, Rose Marie
rmcarter1945@consolidated.net

This was a wonderful and much needed article about epilepsy. It not understood and often misunderstood by the general public. I have had seizures since I was 11 years old. I am one of the fortunate 2/3rds cited in the article - those who can manage their epilepsy. I'm on monotherapy and it's enough to control my seizures. However, because my seizures always occur in the morning and always right after I wake up, I can never quite shake the panicky feeling I get as each day dawns - "Am I going to have a seizure today?" Brain anatomy and neural connections are permanently altered whether you have one seizure or a 100. It is this alteration and the unknown of what is going on in YOUR brain that is the most disconcerting aspect of epilepsy for me.

I am 25 and had my first seizure of any kind, a grand mal, at 22. I have had the challenge of educating myself, family and friends all at the same time, as well as dealing with the emotional transition from being "normal" one day to "different" or "sick" the next. It is a challenge to explain it to every new boss, and to then temper the fear that comes with that conversation. And if someone sees me have a seizure first hand it is as if, for a time, when they are with me they are just hoping that it will not happen again. It is a struggle that is different to begin to deal with as an adult, especially since the doctors have no idea why it has begun, why it continues (I have had about a dozen) or how to help. Perhaps some people I know will read this (I will definitely pass it on), and maybe by reading it at least some will better understand the fear I feel, the difficulty that comes with this DISEASE, and what it actually is. Thank you thank you thank you.

I'd like to thank you for this article, although I had to ignore all the discussion about death. I suffered with epileptic seizures for over twenty years. On March 8, 2009, thanks to Dr. Devinsky and Dr. Doyle, my husband and I celebrated my fifteen year anniversary free and clear of seizures. My twelve year old son wouldn't be part of our lives if it weren't for these two heroes. A dark cloud with a dagger always ready to fall at an impromptu time was removed from my life in 1994. I will forever be indebted to both the doctors and my husband for helping me. Thank you again, Mary Falco

I don't think people in general really understand what a person with epilepsy goes through in their life. As a parent of a 30 year old with epilepsy, I have dealt with trying to help my son first hand. Because of a move our family has made from Ohio to Georgia recently, I tried to help my son find medical insurance until he could get a job that will supply him with insurance. Once I mentioned he had a seizure disorder it was like having a door slammed in my face. Insuance companies would have nothing do with an epileptic. I was stunned at the lack of concern for an epileptic person. It was amazing how fast I was turned away. Finding employment as an epileptic is another story for another time..

There is a little know Disease Called Glut_1 the aflected can have 100's of myoclonice seizures in a hour. To this date the Keito diet is they main scource for slowing the seizures. But many still suffer as my eight year old son. This has never been written about or spoke about it the media at all. But more and More children are being missed dianoised for somthing else and Have Glut_1. At the time when my son was discovered there was only 44 children here in the states that where know to suffer this. Six major hospitals later.

Newsweek Staff: I am pleased to see that you gave given much deserved attention to epilepsy. I am saddened, however, that among the hundreds of sentences included, there was only one uninspiring sentence about the KETOGENIC DIET. The KETOGENIC DIET is a medically proven, highly effective, early treatment for epilepsy that is effective in 66% who try it! THE KETOGENIC DIET IS MORE EFFECTIVE THAN MEDICATIONS WHEN TWO MEDICATIONS HAVE FAILED and is a more effective FIRST line treatment for certain seizure types. Unfortunately, by not including information about the KETOGENIC DIET in your articles, you have contributed to the censorship of this important information by the medical community. Many physicians don't know about the KETOGENIC DIET, and therefore they do not educate their patients about this highly effective treatment. PLEASE consider a follow-up article about the KETOGENIC DIET. You may access more information about the KETOGENIC DIET at TheCharlieFoundation.org, including links to recent articles/studies about the KETOGENIC DIET.
Dr. Deborah Snyder
University of Pittsburgh Medical Center
Author, Keto Kid: Helping Your Child Succeed on the Ketogenic Diet

I read this article and it's very informative. I wanted to buy one to give to certain relatives so they can have a better understanding of what happens to one that suffers from seizures. However, I cannot find this magazine anywhere. I know if I go to the newsstand at my local airport, I can find it there. Since I do not have a ticket, they will not let me in past the security checkpoint. I should have kept the magazine when I was reading it in the doctor's office. UGH! Where can i find this magazine?

I am actually looking for this magazine in the store.
I have a 20 year old daughter who has suffered from this illness since the age of 3. Her seizures were not bad until she hit her teenage years. Now, she is depressed, angry, frustrated with life. She is on so much medication but still suffers from seizures daily. The seizures have damaged part of her brain and she now suffers from short term memory loss. She talks a lot about not caring about living anymore. I wish there were something that could be done to give her hope. Now, we are the mercy of the insurance company to approve further testing ....

I feel like I need a support group coping with all of this as well. This has become too much at times.

Jon,
This NEWSWEEK story was important??? so now what?
In 2001 I was in a minor car accident. That night I had multiple tonic-clonic seizures and did not remember being in the accident; actually I did not remember much of anything about anything. And so it went. I???ve been on every medication that you (and the other authors) mentioned and dealt with horrible health insurance coverage, coverage that seems to blackmail the sick. I was stripped of my twenties. One of the most difficult parts was/is the separation from my peers. My daily focus changed dramatically. I came very close to my last breath a number of times and was resuscitated. So, I started to live every day as though it was my last, really. Because I have nocturnal cluster seizures I cannot detect them, thus I wake up disoriented, I loose my memory and I have to relearn everything from how to tie a bow to who I am. Life is hard as an epileptic. A very lonely place and it is exactly as the article says??? we are not cured, we are merely sedated and it sucks. Thanks to those who are working towards changing this, awareness is very important.
Thank you for your straight-forward and heartfelt article.
A. Finn

I saw this issue at my doctor's office, and immediately bought a copy of my own. Thank you for your article. It was just nice to read a realistic story of epilepsy. Before this article, I felt as if we were all portrayed and identified by the most ill in our epilepsy community, when in fact the condition varies from person to person. Moreover, I feel that prior to this article we were a hidden and misunderstood disease. Even those in my profession of nursing often do not understand my condition. I was not diagnosed until 2006, but had several seizures before then. In fact, after three years of stabilizing on medications and learning to live with my condition, I working as a nurse. This article truly brings to light the condition that affects me and many others. Hopefully it will bring more understanding and research.

Sincerely,
Stacy

Dear Editor,
Thank you for your great interest, time & efforts in researching, writing & publishing a very thoroughly analyzed article many of us, through out the years, have been suffering dearly.
This nightmare is not going to be through that easy, therefore, victims of Epilepsy are
going to need all your dedicated services in enlightening the darkness of a social menace, relegated for centuries, to the back burners society.
Publishing your very important report on Epilepsy may help the powers of the day, to do some good in the name of their citizens in need.
It's about time society acknowledges this fatal menace.
Again, Thank you for your hard work.
Sincerely,
Gerrie
http://www.myspace.com/myseizures

Dear Editor,
Thank you for your great interest, time & efforts in researching, writing & publishing a very thoroughly analyzed article many of us, through out the years, have been suffering dearly.
This nightmare is not going to be through that easy, therefore, victims of Epilepsy are
going to need all your dedicated services in enlightening the darkness of a social menace, relegated for centuries, to the back burners society.
Publishing your very important report on Epilepsy may help the powers of the day, to do some good in the name of their citizens in need.
It's about time society acknowledges this fatal menace.
Again, Thank you for your hard work.
Sincerely,
http://www.myspace.com/myseizures

This is a great story!!!! My sister-in-law passed from a massive seizure in '06. I read once that proper diet, proper sleep, avoiding alcohol/illegal drugs can also help in the long run. However, this was not addressed and it would be great to know if researchers have looked into this matter. Keep up the fight for more research!!

Thank you Newsweek for giving front page space to such a miserable disease. Many of us live with this disease day in and day out never knowing when or where our next seziure will happen. The seizure itself is bad enough but the broken teeth, ribs headaches, etc that reult from all this are very debilitating. What astounds me is that there a huge number of individuals who believe that epilepsy can be cured just by taking a pill. There are several of us who try many drugs with no luck.