A STORM IN THE BRAIN

Thank you for this informative article. I have dealt with epilepsy since I was 8 years old. My parents didn't explain to me what my condition was. It wasn't until I was in college that I understood what "I had". I remember the neurologist telling me at the time that there was no guarantee the seizures wouldn't return. And he was correct. One cause that you didn't touch upon was the role that hormones take. I relatively fine until I started menopause and then, the auoras, migrane headaches, and when the conditions were right, a full blown seizure happened. Other things would trip them in combination-such as heavy travel schedule, work stress, lack of sleep, etc. Until I found a neuroendochronologist who helped put a stop to the episodes. My neurologist at the time almost laughed at the idea that this is why I was having seizures. The ironic thing is, no one is immune from seizures, they could occur at any stage in a person's life with no explaination. To this day, there is no reason for mine, and could relate to the struggles and frustrations of those in the article. I never told anyone I had epilepsy, I was too afraid of their reaction because of the stigma associated with it. Now, I freely tell people, they need to know. What bothers me the most is, am I more of a danger to someone on the road with Diabetes or a Heart condition? I don't think so, my seizures are controllable. Why are people with Epilepsy considered more of a threat than those two other groups?

HELP US HELP OUR DAUGHTER!!! She has suffered from epilepsy since she was 5 months old, we are currently trying to raise money for medical treatment in the Dominican Republic any amount is sincerly appreciated. Please visit her website www.tiffanysfaith.com

Visit www.journeyforjess.com to learn more about a family who has set out to raise money (and awareness!!!) for seizure-related disorders, in honor of their angel girl Jess, who died after complications from a prolonged-seizure. The journey starts on Friday and will last 3 weeks. Follow their blog and support their cause!!!

am writing in response to the informative articles in the April 25th edition of Newsweek regarding Epilepsy, A Storm in the Brain. The articles provided a thorough, yet grim introduction to seizure disorders that affect more Americans each year. However, we are concerned at the lack of information provided about neurofeedback. Neurofeedback is a type of biofeedback, or simply stated, brain wave operant conditioning. The International Society for Neurofeedback (ISNR) recently adopted a more in-depth definition.
Your article pointed out that research in this area is underfunded and we agree. ISNR has posted a bibliography to their website at http://www.isnr.org/CBEpilepsy.cfm listing all the best research for this diagnosis and you will see that it goes back 30 years or more. However, age should not diminish the value of the work.
There are obstacles that have inhibited public access to reliable information concerning this therapy. Biofeedback/neurofeedback is a modality or a tool to be used by any number of different health care professionals for a wide variety of disorders, however, it is not a trademarked term. A psychologist may use neurofeedback to treat ADHD and a counselor or social worker may use it for addictions. Therefore, the interpretation of what is or what is not biofeedback or neurofeedback is quite broad and in many cases incorrect. Biofeedback is not regulated by the government as with other accepted therapies, and as such, the public may not know how to find a reliable referral source for locating well-trained providers.
I represent the Biofeedback Certification Institute of America (BCIA), the certifying body for the clinical practice of biofeedback. BCIA was established in 1981 with the mission of protecting the public by establishing strict educational, training, and ethical standards and is the only institute recognized worldwide granting certification to qualified health care professionals who have completed strict education and training requirements and have passed a national certification exam. For more information or to find a provider, please visit www.bcia.org.
We encourage you to consider a follow-up article outlining the promise of neurofeedback, specific to epilepsy. With the attention to side effects of nearly all medications, additional articles telling your readers about the benefits of biofeedback modalities for other disorders would also be of interest. We would be happy to work with you to provide any information you may need. Please feel free to contact me if I can be of service.

Judy Crawford - jcrawford@bcia.org
BCIA Director of Certification

Also curious if anyone has heard of a link between TMJ and epilepsy?

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"

The entire reason why people who had a seizure are discriminated against is because the government is leading the discrimination efforts. The following is the law of the land, written in the case of the Virginia State Colony for Epileptics. I???m trying to overturn it, and I need your help to do it. If you have had a seizure and have been discriminated against, I need to hear from you. No human beings or animals should have to live under this law. If you agree, please call Judge Robert Morris at (727) 464-7457 and express your outrage that this is the law of the land in 2009 for people who had a seizure:
???We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser Sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.??? U.S. Supreme Court, 1927, Buck vs. Bell, 274 U.S. 200 (1927). the Law of the Land today due to the sickening greed and unchecked power of the AMA

The entire reason why people who had a seizure are discriminated against is because the government is leading the discrimination efforts. The following is the law of the land, written in the case of the Virginia State Colony for Epileptics. I???m trying to overturn it, and I need your help to do it. If you have had a seizure and have been discriminated against, I need to hear from you. No human beings or animals should have to live under this law. If you agree, please call Judge Robert Morris at (727) 464-7457 and express your outrage that this is the law of the land in 2009 for people who had a seizure:
???We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser Sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.??? U.S. Supreme Court, 1927, Buck vs. Bell, 274 U.S. 200 (1927). the Law of the Land today due to the sickening greed and unchecked power of the AMA

Thank you for sheding some light to the seriousness of this effliction. I woule like to have seen a little more meat and potatoes in your artical. After all you did give it the cover. I do suffer from temperal lobe simple comlex and partial complex seizure.

Another thing that needs to change is paramedics forcing someone to go to the hospital against their will--yes it happens, especially with this condition. Don't let them feed you drivel about how you weren't mentally competent to refuse medical treatment. If you're an adult, and you don't see a reason to go the ER (especially when a stranger called 911), then for crying out loud you shouldn't have to go. In all fairness, some parts of this country are enlightened about this, but many aren't

Like anyone with the condition I'd like complete control, but the end doesn't justify the means. The most important thing is quality of life. What's the point of complete control if the drugs destroy your cognitive ability? Yes, I've been there and trust me it isn't worth it.

This article was a good start. A common problem I run into is the ill-informed get overly-paternal when it comes to this condition. Yes I know you shouldn't swim or bathe alone , which I don't do (showers excepted) because of the danger involved. However, on some level you have to live your life you can't just sit around waiting for the roof to fall in. I love the outdoors on many fronts, and have even hiked routes with exposure

Like anyone with the condition I'd like complete control, but the end doesn't justify the means. The most important thing is quality of life. What's the point of complete control if the drugs destroy your cognitive ability? Yes, I've been there and trust me it isn't worth it.

This article was a good start. A common problem I run into is the ill-informed get overly-paternal when it comes to this condition. Yes I know you shouldn't swim or bathe alone , which I don't do (showers excepted) because of the danger involved. However, on some level you have to live your life you can't just sit around waiting for the roof to fall in. I love the outdoors on many fronts, and have even hiked routes with exposure

I,also of the Not Well Lobbied, MULTI-DISABLED got the institution or the road option reduced to the road. (8+yrs homeless) . when i was told come 500 miles north to sign in for Va transitional program they found out, yes i really wasn't just a mh client and addict besides(ugh) a girl, and i was left out in a strange not nice place in cold winter. Patient advocate would not take give access to the sheets for written complaints and more. Quality control after months of back and forth said has no authority. social worker super would not respond. when i called the oversite office at hud they said "...We don't care what they do with the money..... and besides you have too many medical conditions...." I'll never forget him for sure. SOCSIL WORKERS MDS and PHDS SAY patient ADVOCACY IS NOT MY JOB. When one ER worker was helping too much I WAS TOLD BY MY MD not allowed to speak to him,. What?! i have both VA AND MEDICAL AND MOSTLY CAN'T GET MOST BASIC OF ACESS!!!
ThE REALITY IS STILL- No Lobbyist, cant buy ACCESS or EQUALITY.
LOOK HOW SSI/SSDI MEDICARE vs MEDICAID ARE SET UP.
PAY AMOUNTS AND HEALHT CARE BENEFITS and access ARE BY GROUP TYPE -NOT medical NEED.

STILL. I LOVE OBAMA AND VOLUNTEERED SINCE 2007 IN BETWEEN ER VISITS AND DAYS EACH MONTH STARVING - BUT ON THIS- WE NEED PRIORITY TOO -WHERE IS THE CHANGE?

I've had epilepsy since the age of 2. My mom says she's convinced it was before that but documents are a little sketchy. At any rate, there's a long story to cover everything. To sum it all up, it wasn't discovered what the cause why these seizures were happening until the age of 26. Can you imagine. I lived my entire life in and out of hospitals not knowing whether I was coming or going. I felt like I had taken every medication on the market.

Anyway, at the age of 26 a scar was discovered on the left side of my brain and after some testing, I went in for the removal of it and my temporal lobe. I was seizure free for seven years. The miracles of medicine and a neurological team at Univ of MD who I owe a lot as they kept my sanity. Breakthroughs did come back however and with the miracles of science again the VNS was brought to my attention and we discussed it at length. The VNS was completed in Sept of 2007 and it took six months for it to start kicking in but over that period of time both motor skills and cognitive skills improved.

I was studying for my MBA at the time and as an adult student, I graduated with a 3,59 Cumulative GPA. I am now in the process of taking my Doctorate of Business in Information Technology. My seizures have dropped from 4 breakthroughs a day down to one every 15 days.

This article made me cry. I have epilepsy and have had seizures for the last 14 years or so. It has been a wild ride for me and my family. I started off with the small petit mal (jerks). Then the next thing it was the grand mals. Every 3 months I would have the grand mals but every other day I was having the jerks and falling. The jerks became very intense before the grand mal came on but I didn't know that until years later. I was started taking Dilantin when I was first diagnosed with Epilepsy and it was like taking water, didn't help a bit. I told my neuro but she was like okay lets up the dose. She up the dose a few times and it was like I went from faucet water to bottled water, same purpose but different price. Finally she noticed something and put me on tegretol (regular), didn't work. I still was having the same type of seizures and then she gave me Tegretol ER. I had to go somewhere else so I did. She gave me a EEG and it came out Irregular. She stopped the Tegretol and put me on Depakote. I got FAT! And the seizures kept coming. Plus this is when I started to notice my memory was becoming cloudy and my speech was off now and then. She increased my dosage and my seizures continued, I became friends with floors and concrete at this time. I also started to loose jobs because of the grand mal seizures. A few years moved on and I found a job at a big time medical school and got a great doctor (neuro). He sent me to a hospital for all kinds of test and started me on two different meds (Depakote and Keppra). It didn't fit with me so he tried Topamax and Keppra. ANd I was taking about 5000mg. He had me take a test for the brain surgery but I wasn't a candidate for it. The meds wasn't controlling the seizures, I had a grand mal at work and terrified my co-workers. Now I am in San Diego and with the best Neuro that I ever had (knock on wood). I have had a grand mal seizure every month for the past 4 years and the small ones every day or other day. I can't work any more at least for now. I can't drive and I don't want to. Since I found out I was having seizures I never driven and I never will. I take Topamax, Keppra, and Lamactil, all twice a day (4500mg). My memory is so bad I can't remember what I am going to say before I am going to say it. I hate talking sometimes because people look at me like something is wrong with me like I have had a shot of vodka or something. Or I am just stupid. I have a VNS now, I had it put in last year on May 22. I still have the small seizures but the last time I had a grand mal was in Dec of last year. So that is good. :)

FINALLY!! It is so wonderful to see that epilepsy is getting some media coverage to get the message out there that this is a serious, life threatening disease that is in some desperate need of research and funding! The medications that are available now, however great, still have incredibly harsh side effects...cognitive, physical, even death..not to mention they don't work for everyone! We need a CURE not jusr a band-aid..Thanks Newsweek! :)

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