For Stacy, coping with epilepsy has been challenging. She began having seizures when she was 8 and tried numerous medications. They did not bring her full control, and she found the side effects intolerable. Most of the time she had partial seizures, but had grand mals about every two years.
In 1994, about the time she graduated from college, Stacy began seeing two doctors to try and get her seizures under control. Her physician, Dr. Manso, had Stacy begin a high protein and low sugar diet.
She began neurofeedback training using the Neurocare Program under psychologist Dr. Nancy White. Stacy says, "I decided to take neurofeedback training because I was tired of taking meds, and getting the side effects." Six months later Stacy was seizure free for the first time since childhood. She was able to stop all of her medications and states, "I went four years with no seizures and no drugs. I had two kids and after the first one, my hormones changed and I started having Gran mal seizures."
At the time her seizures returned, Stacy was unable to continue neurofeedback and tried other routes for managing her seizures, "I've tried General MD, vitamins, neurologists (who just increased my meds instead of trying to fix the problem), neurofeedback, and acupressure."
"After tracking my own seizures and habits for a long time, I'm finding that I am the one who knows the most about me. I know I can fix this, as I've gotten it down to a science now."
Coping With Epilepsy developed out of Stacy's and Bernard's searching for ways to manage Stacy's seizure disorder. According to Bernard, "The site was built at the tail end of what was probably the lowest point in our lives. Nothing appeared to be working. I didn't know about other forums at the time, but I did know how to build web sites, so I threw together CWE using a bunch of free scripts."
Coping With Epilepsy offers several forums arranged like a house party. Come into the Foyer, take off your coat and introduce yourself. Make yourself comfortable. There are about 500 members on CWE so just hang out, look around and meet the others. Whatever you're looking for, you may find it here.
One member, Robin, found CWE following a Google search (http://www.google.com ). Robin says her daughter has seizures and, "I was touched that Bernard was in the same situation as I was, helping to care for a loved one who has seizures. Sharing research, tirelessly searching under as many stones as needed. He and the others made me feel at home immediately."
Like any good party, you'll find a lot of folks congregating in the Kitchen. This is the place to ask questions and discuss anything epilepsy related. Frustrated, need to talk about things? Head for the Lounge. Spout off, you'll find willing listeners here. Got a joke or funny picture to share? Post it here.
Marian's son has seizures. She states, "What I like about CWE is that everyone is friendly and truly understands my thoughts as a parent of a child with epilepsy. Here I can vent, ask questions (where no one will laugh at them), absorb information that I had no idea about, tell my story along with my opinion and suggestions. This forum has been my savior. I can talk to everyone and they all understand my concerns. It must of been meant to be for me to find CWE. It has opened up my world dealing with epilepsy."
The Back Fence Forum is for polls on many topics. Meet in the Library to discuss news, articles, research, and treatments for epilepsy. This is the place to post any news and information you want to share with others.
The General Issues Forum is the place to go to make suggestions, post comments, or questions about CWE.
Bernard has continually upgraded the site, expanding the news, information and support available. The news page links to articles on epilepsy, neurofeedback and neuropathy. Bernard and Stacy have a special interest in keeping up with neurofeedback news and making it available to members.
When neurofeedback helped Stacy become seizure free Bernard began looking into it. He says, "The more research I started doing on the subject, and especially as compared to what I was learning about VNS (Vagus Nerve Stimulator) therapy, the more upset I got that doctors were pointing patients with difficult cases to something that is so expensive, invasive, potentially harmful and relatively ineffective. [link to recent eval of VNS] http://www.emedicine.com/neuro/topic559.htm.
"I am convinced that neurofeedback is the best kept secret in epilepsy therapy. I am happy to play my part as `Johnny Neurofeedbackseed' in raising awareness of this moderately expensive, non-invasive, completely safe and very effective option." Stacy is now combining the use of anticonvulsants with neurofeedback training to manage her seizures.
Bernard recently added a section covering non-drug therapies for seizures. Whatever your approach to dealing with seizure disorders, you will find an open and welcoming community at Coping With Epilepsy. The party's started, join in, make yourself at home.
Links:
Neurocare Program:
http://www.zengar.com/about/index.html
1Zoey's email: Zoey@gilanet.com
web contact: pietsch@indiana.edu
@2007, Zoe L. Langley