In the Grip of the Unknown

Donna Barajas http://www.cbs.com/primetime/60_minutes/video/?pid=GQIzNJWFeZA3_UdBSl8JcB58XdIud78c

This episode has some interesting info on a new procedure for people with siezures. My son has had seizures for over 20 yrs and part of his frontal lobe removed. He went 6 wonderful yrs without any siezures, until a year ago. They are back... This gives me hope again!

my son was diagnosed at 5 yrs of age with siezures, he is now 31. He had apart of the right frontal lobe removed. He went 6 yrs without siezures and now has had them again for over a yr. They are the same, only thing is now he has no memory of them coming and going. Plus, he does not remember basic things for hours, He does not recognize things or people for hours. It is sad that this disorder has gone on with little awareness and funding to find a cure! It is a horrible desease and sad that the world still hides it and is ignorant to what it is! Meds, he was everything out there! Diets he tried them! Surgery did it! What is next???? oh, prayers all across the world in every domination! nothing has worked!

THANK YOU Newsweek for publishing this article. Like many others who have commented, I believe that epilepsy is something that others are scared of because they are unaware of what it really is. I'm 21 and have suffered from epilepsy since I was 13 years old. I think it's somewhat genetic for me... there is a history of neurological conditions that affect my mom's family; her mom had Huntington's disease, and my mom's sister also had epilepsy. I don't like having to live with the fear of others labeling me as insane or 'possessed' if they are ignorant as to what epilepsy really is. I think it's time that the world should see epilepsy for what it really is, and treat it like any other condition... most people don't stigmatize cancer or heart disease..

I've been lucky enough to have a generally mild case of epilepsy. I have only had a seizure once a year until two years ago, when I started adjusting my medication. I now take Tegretol 100 mg daily and it has made me hypothyroid and therefore I have gained quite a bit of weight over the years. The reason why I adjusted my medication was because of the side effects. Of course, the rest of the world automatically assumes that if you gain weight, you're eating too many sweets and fried foods. Unfortunately, I have not had the best luck with doctors. The very first medication he put me on was Depakote at 14 years old... Depakote is not to be used as the first treatment choice for women of childbearing age unless the case is more severe; mine wasn't. There are studies that show that Depakote can increase a woman's chance of getting PCOS by up to 50%. I am very, very thankful that I listened to my own body and got off of it within 2 months due to the weight gain. My neurologist didn't even mention this to me before putting me on it. It was only earlier this year that I confirmed this fact with my family doctor. I am glad that others who have more severe cases than I do can confide in better doctors who listen to their patients and really help them.

During my last seizure in the summer, I fell on the corner of a raised platform made from bathroom tile. It dug out almost all the flesh in my knee. I had to get stitches to fix it, and while my knee looks normal (other than the scar), I can't lean on it without it being painful. Since then, I have seen a naturopath, who I really hope can help me control my seizures while I lower my dose of Tegretol.

All in all, I'm just glad that this article has been published in a popular magazine so that others can learn about epilepsy and not fear it as they may have done in the past. Great job!

I am so hoping the commenting doesn't cease. Even though more articles will be done and more attention is being brought to the need for a CURE nationwide, MORE needs to be done. Hoping to read more from those who were treated or are in Dr. Devinsky and Doyle's care. My case is unique and I'm still waiting for a firm diagnosis. I'm considered atypical and am also hypersensitive and idiosyncractic to Rxs and OTC medications. I have hope and know God is in this, but there are days hope wears thin. I'm doing much on my own to get things rewired "up there".

Jeanne Holland Newton
http://projectrewire.blogspot.com/

Curious how many people out there are on Phenobarbital for seizure control. When it come to control it works ( for me ). The 20 years fog and sensitivity to noise and light is less then desirable. The cranky me that can get up to quick and who wishes I did not have hormones that make it all worse. The me that struggles to form words at times. The me that cant string a sentence together and looses motor skills. Scattered and fragmented. So little do we hear about the quality of life sucked away by the medication we take. For my 25 + years of medication the two I refused to take any are the two years I remember the most and that means something to me. The glorious days the I forget my medication where I am "awake" and can have complete thoughts. Where I feel I must be close to feeling like everyone else. While I know I am in a fog I am sure I cant even recognize anymore exactly how much. Its cheap and it works . For that I am grateful as I do have to be a productive member of society and reliable and safe parent and am lucky to be as active as I am but I wish I could remember me "before" Amber

" A single spark can start a prairie fire"

I'm a former patient of Drs. Devinsky and Doyle. They are great physicians and great men. I'm very lucky, I've been seizure free for 5 yrs (ten since my surgery).

I tell everyone the same things--just remember anyone can have a seizure, all you need is a brain. The only people who aren't going to get them are politicians!

HOPE. that is what we all need. Epilepsy is a genetic thing in my family. My mother and grandmother both had it, now i do. I hope my daughter never has it and i hope that should she medicine will have gone far enough to "cure" her. I know what epilepsy does to my mind, body and emothions I never want her to experience these pains. Over the years I have learned to live my life without letting the aiezures get in the way. I don't like having to hind my "problem" from others. I know that many people are still not familiar with siezure and many still believe you can swallow your tongue!! haha!! so...if you have epilepsy or know someone who does..........HOPE.

epilepsy in a genetic disease in my family. My mom and grandmother both had it. I am told that my epilepsy is very much controled by hormones. I have to keep to a strict schedule and take meds twice a day. Hope..... hope is what i get everytime i see these articles. i hope my daughter never has epilepsy. i hope that if she does than medicine will have gone far enough to "cure" her. i am told that my epilepsy is so advance that there is no way to "cure" me. i will take my meds for the rest of my life. that is just fine with me. I do hate having to hide things from people just so they will treat me as an equal. I try not to let this get in the way of my life. I have 2 wonderful children. My husband and i have been together 7yrs now. Everytime I have an "episode" he tells me exactly what happens. I have spent my time crying....now I just try to help figure out how to control this disorder. If you are epoleptic or know someone who is... HOPE is always there.

Having been treated by both Drs. Devinsky and Doyle, I can say without hesitation, that a better team to receive care from when fighting the disorder we call "Epilepsy" simply does not exist.

Nice to see articles about epilepsy as presented in Newsweek. Such actions helps provide ???hope??? to those of us who are dealing with epilepsy, a condition I have had for over 45 years. The toughest part of epilepsy is dealing with the side effects of medications, being labeled (by management and state laws), and depression. Keeping quiet about my condition enabled me to build a career, a social life and a family (been married 25 years and have 2 sons). I enjoy running, backpacking, sailing, traveling and participating in many social activities in support of scouting, my church and the high school my sons??? attend. I rarely ask ???why me???? but wonder ???what am I supposed to do with it???? for having a condition that can instantly change my life makes me take in the wonders of every moment.

Until four years ago my seizures were controlled through medication (Dilantin) and as new medications were developed, they were used as a secondary back-up. This process worked until four years ago when I had to elect to have the damaged area in my brain removed in order to control my seizures. The initial outcome of the surgery was unexpected for I had many issues with memory recall. Through much prayer and mental challenges (puzzles, math, project analysis), I have recovered much and am more open about my epilepsy (amazing how the brain can heal and re-wire). I am now on one medication and occasionally have auras but I do not loose consciousness.

I have been a project manager on construction projects (for the past 28 years) in support of government agencies including construction of national monuments. Recently I took on the role of being a supervisor and found that informing my staff about my condition helps overcome misunderstandings and allows us to be more open with one another (this year we will have overseen the award of nearly $1B of construction contracts).

People need to understand that epilepsy does not mean that someone is stupid or incompetent; nor does having a seizure mean that someone should be listed as physically disabled. I am thankful that research has been ongoing over the years; I pray that more methods of treatment can be developed and a cure found (thanks to organizations such as the National Epilepsy Foundation, etc.). It would be great to see a follow-on story about the causes and first aide for seizures to help people understand that someone with epilepsy should not be feared, how to provide assistance (i.e. when to call 911), and help minimize the embarrassment and deaths. Jon Sadler

My 16-year-old son suffered a severe traumatic brain injury in 1997. He was run over by a car driven by a driver who was speeding. He underwent two neurosurgeries at a Level 1 trauma center in Northeast Ohio. After 2 weeks in intensive care he was transferred to another Northeast Ohio university-affiliated medical center with an ???alleged??? reputation in neurological rehabilitation. He received 6 weeks of inpatient cognitive, speech, occupational, and physical therapy and was discharged. I was told by my son???s physical medicine and rehabilitation (PM&R) physicians that he was ???medically stable??? and his risk of having a seizure was essentially the same as mine. My son continued with outpatient cognitive and speech therapy for three months and continued under the ???care??? of a PM&R physician at the medical center. My son died in his sleep three weeks shy of his 19th birthday from a post-traumatic seizure. I subsequently found out that even in 1997 it was well known that victims of severe traumatic brain injuries were at significant risk of post-traumatic epilepsy. The information I was given by my son???s PM&R physicians was completely inaccurate. Based on my son???s experience I would tell those who have experienced a severe traumatic brain injury (and/or their loved ones) the following:
1. You are NOT medically stable. You are at high risk of suffering a post-traumatic seizure???even a fatal one???months and even years after your injury.
2. Insist that you be placed under the regular and continuing care of a neurologist with extensive experience treating brain injury patients. PM&R physicians lack the education and training to make informed neurological assessments regarding your brain injury. In my view, neurologists have given up too much turf to PM&R physicians when it comes to treating brain injury patients.
3. Insist on receiving regular CAT scans to assess the status of your brain injury. My son had one CAT scan 1 year after his injury that was ordered by his neurosurgeon. His PM&R physicians never ordered another one. I was told CAT scans were unnecessary. Don???t let anyone try to dissuade you from having a CAT scan because scans are expensive. You are not obligated to look after the bottom lines of health insurance companies or help a hospital's CEO earn his or her bonus by keeping costs down.
4. Learn the warning signs of seizure. Make sure your loved ones know what to do if you have a seizure.
5. If you start experiencing seizures or your neurologist believes that a seizure is likely ask him or her whether you should be placed on anti-seizure medication.
6. Support epilepsy and brain injury organizations in their efforts to find safer and more effective treatments for epilepsy.

My 16-year-old son suffered a severe traumatic brain injury in 1997. He was run over by a car driven by a driver who was speeding. He underwent two neurosurgeries at a Level 1 trauma center in Northeast Ohio. After 2 weeks in intensive care he was transferred to another Northeast Ohio university-affiliated medical center with an ???alleged??? reputation in neurological rehabilitation. He received 6 weeks of inpatient cognitive, speech, occupational, and physical therapy and was discharged. I was told by my son???s physical medicine and rehabilitation (PM&R) physicians that he was ???medically stable??? and his risk of having a seizure was essentially the same as mine. My son continued with outpatient cognitive and speech therapy for three months and continued under the ???care??? of a PM&R physician at the medical center. My son died in his sleep three weeks shy of his 19th birthday from a post-traumatic seizure. I subsequently found out that even in 1997 it was well known that victims of severe traumatic brain injuries were at significant risk of post-traumatic epilepsy. The information I was given by my son???s PM&R physicians was completely inaccurate. Based on my son???s experience I would tell those who have experienced a severe traumatic brain injury (and/or their loved ones) the following:
1. You are NOT medically stable. You are at high risk of suffering a post-traumatic seizure???even a fatal one???months and even years after your injury.
2. Insist that you be placed under the regular and continuing care of a neurologist with extensive experience treating brain injury patients. PM&R physicians lack the education and training to make informed neurological assessments regarding your brain injury. In my view, neurologists have given up too much turf to PM&R physicians when it comes to treating brain injury patients.
3. Insist on receiving regular CAT scans to assess the status of your brain injury. My son had one CAT scan 1 year after his injury that was ordered by his neurosurgeon. His PM&R physicians never ordered another one. I was told CAT scans were unnecessary. Don???t let anyone try to dissuade you from having a CAT scan because scans are expensive. You are not obligated to look after the bottom lines of health insurance companies or help a hospital's CEO earn his or her bonus by keeping costs down.
4. Learn the warning signs of seizure. Make sure your loved ones know what to do if you have a seizure.
5. If you start experiencing seizures or your neurologist believes that a seizure is likely ask him or her whether you should be placed on anti-seizure medication.
6. Support epilepsy and brain injury organizations in their efforts to find safer and more effective treatments for epilepsy.

As someone with the condition in question I feel the need to emphasize that on some level you have to live your life, you can't sit around in bed waiting for the roof to fall in. I don't swim alone (or even at all), nor do I take baths alone, I certainly take risks which could beyond the comfort zones of others with this condition. When I'm hiking, I enjoy climbing on boulders. I've done class 3 climbs on more than one occasion. I've done a couple of ski descents. I have a mountain bike, which has gets used. The worst thing about being unable to drive (for me) is that is that much harder to do the things I like to do: outdoor activities.

Sure I take risks, but I get a much richer life. Life's too short to worry about what might happen while I'm on my mountain bike, or skiing down a peak. If have this condition and you want to have a good life, you can't spend every waking moment pondering what might happen if you have a seizure. Instead, you think about acceptable risk versus unacceptable risk. If it's the latter, you obviously don't do it. However, if its acceptable you have to let your fears go and take a chance, other wise you will have a miserable life ahead of you.

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

This was a great article. I'm one of the lucky people that has suffered from epilepsy. I''ve been through hell but, in the long run, it was worth it. I had bacterial menningitis when I was 13 which left scar tissue in my brain that was causing seizures that interefered with my speech and comprehension. I didn't realize what these were until I was in my twenties. I was on medication for years which didn't help the seizures, they were getting worse with time. I was working full-time, taking care of a 3 yr. old and trying to cope with 15-20 seizures per day. My neurologist in Ottawa sent me to the Montreal Neurological Institute for testing and surgery. I had a left temporal lobectomy at age 31 and it was completely successful. I have not had 1 single seizure since 1991. There were a few side effects but I would rather live with those than the hell of the seizures, one of the things I hated most was the auras before and the absolute terror I felt during and after a seizure. All of that is now gone, thank God.
After the surgery I waited 1 year and got my driver's licence back and to help with the side effects I got back into sports, which I had really missed. I have since participated in marathons, triathlons, long-distance swimming, 42 km inline skate races, mountain biking, all the sports I couldn't do before with the epilepsy.
I am very happy with my results and I have to thank my neurologist in Ottawa, Dr. Alan Gubermann and my neurosurgeon in Montreal, Dr. Andre Olivier.

Great to see an article like this in a mainstream publication - so many people are blissfully unaware of epilepsy or the impact it has on sufferers and their families so exposure like this is invaluable.

My 1 year son Ross has had severe epilepsy since birth and whilst his seizures, which peaked at more than 80 a day, are currently under control, his mental development has been limited. He has started smiling though, which makes caring for him so much more rewarding.

In June 2009 I will be climbing Mont Blanc in France in order to raise funds for the National Society for Epilepsy, a UK based charity which funds research into epilepsy and supports people with epilepsy. To help by sponsoring me, to follow our training and ascent or to see photos of Ross and follow his progress, please visit www.archiesmountain.com

I had my first seizure about 7 years ago @ age 27 and I know that I am one of the lucky ones in that my seizures are mostly under control and I can lead a perfectly normal life. I saw this issue of your magazine while sitting in the waiting room of my neurologist's office and I was just blown away with the information you provided and the tact with which it was presented. I had to run out and buy a copy of the magazine so that I could finish reading the articles. I think I learned more from you than I manged to get from years of casual research on the internet. Thank you for making me realize that I am not alone and I am actually one of the lucky ones.

What an Enlightened article in Newsweek regarding Epilepsy. My 14 yr. old daughter had her first Grand Mal when she was 9. Since then it has been an uphill battle that just recently & cautiously we feel we have the right combo to control her seizures. More than that though, I want to thank you for bringing up the daily struggles of side effects from the meds or mini episodes that have affected her daily life,especially in school. While my daughter is very upbeat, a good academic & athletic student, I will be bringing the mag into her school for the guidance counselor to read so that she might enlighten other teachers so they have a better understanding of her mood swings (which at 14 I have trouble distinguishing between)or times that she tells them she "just does'nt feel right". We have never used Epilepsy as a crutch for my daughter but would appreciate a little more understanding on the schools part.

Your articles in the apr 20 issue were great. I would like to donate to "CURE" but could not find an address. How can I obtain one.