Brain Tales: Stacy's Story of Epilepsy and Neurofeedback
Posted Sep 13 2008 1:17am
I received an email the other day from Bernard Ertl, the creator and moderator of theCoping with Epilepsywebsite and forum.
When I had a chance to visit his site and read about the experiences he and his wife, Stacy, have had with neurofeedback, I knew I wanted them to share some of their story with my readers.
I often get requests from folks who find my website,Brain and Healthor blog to share what "typically" happens when someone receives neurofeedback training. I'm not allowed by my professional regulations to ask my own clients to share, so when I find someone who is willing to share their story, I really want you to be able to hear it from their mouth (keyboard?). Even though there really isn't one "typical" pattern, I know it helps to hear about what others have experienced.
So first let's let Bernard and Stacy share their story, then I have a couple of comments.
And just for the record -- apart from these preliminary comments and the ones that will follow, this is a completely unedited version of what Bernard so graciously sent to me...
Stacy was diagnosed with epilepsy when she was 8 years old. Her family on her mother's side has a history of epilepsy that can be traced back several generations.
Stacy was put on various medications over the ensuing years (Depakote, Dilantin, Zorontin, Tegretol, etc.). The changes in medication were mostly because she disliked the side effects and would refuse to continue taking them.
As a young adult, Stacy was working two jobs and taking 15 hours of college classes. She was getting about 6-7 hours of sleep a night and drinking sodas with caffeine and sugar to stay wired during the day. She was having multiple petit mal seizures every day:
- the "zone out" where she would stop talking in mid-sentence and forget what she was saying
- the "jerks" where her body (or just a part of it) would suddenly flail wildly usually without her conscious awareness of the event
Fortunately, these seizures did not occur during times when Stacy was concentrating on something, like driving a car or riding her bicycle.
She was having grand mal seizures with full convulsions about every two years (just like her mother's seizure pattern). After the convulsions, Stacy would sleep for a couple of hours before returning to consciousness. Even so, her muscles were so tired from the convulsions that she was unable to function for at least a day.
Around the time of her college graduation, she started seeing a doctor who put her on a high protein, low (simple) sugar diet (it was more low glycemic than ketogenic). She also started EEG neurofeedback therapy on the Neurocare Pro system.
At the time, Stacy was adamant that she did not want to take any drugs. For her, the side effects and potential for long term damage to her liver outweighed the impact of her seizures.
After about 3 months of neurofeedback sessions 2-3 times a week, and at considerable out of pocket expense (our insurance did not cover it), we almost quit the neurofeedback sessions. We weren't seeing any tangible results from it and it was burning a hole in our savings.
But, we decided that the money was better spent now in the hopes of a better life for her than saving for some far off day that we might never get to enjoy if she didn't her seizures under control in a manner that she could be happy with.
We continued with the sessions and one day a couple of months later we realized that she was no longer having absence seizures any more. The benefits of the neurofeedback sessions, diet and sleep regimen she was maintaining just clicked like a light switch after about 5 months of sessions. She no longer had any visible petit mal seizures - no jerks, no zoning out.
She went 4 years completely seizure free and drug free before seizure returned after delivering our first child. Her seizure activity got worse after delivering our second child and we have been been trying to get her back to that holy grail of seizure control without drugs every since. We hope to resume neurofeedback sessions for her as part of that journey.
About the author: Bernard met Stacy when she was still in college. He dutifully chauffered her 1 hour each way for every neurofeedback session for almost 6 months. Bernard and Stacy are happily married with two children. They started the Coping With Epilepsy web site as a forum for people with epilepsy to discuss treatment options and offer peer support.
I hope you benefited hearing a personal story -- if you have comments or questions, feel free to make them here or I'm sure Bernard would welcome hearing from you on theCoping with Epilepsyforum. If you'd like to share your own experience, please just let me know!
The only major comment I would like to make is to point out the pattern of change Stacy experienced when working with the NCP system (what I talk about here and on my website as the CARE method of neurofeedback training.)
Sometimes people expect neurofeedback to act like a medication -- take a pill, see a difference.
But it's not like that, especially using the CARE approach that respects the brain's own self-regulatory processes.
As Stacy and Bernard discovered, it can seem like nothing is happening, nothing is happening....meanwhile the brain is making the changes it needs to support the changes you may be looking for... then it seems as if Change Happens.
And this is SO difficult, if not impossible for trainers like me to predict in advance. It's important to make the commitment that Stacy and Bernard did in trusting the process.
For more about the CARE model and how Change happens, try reading the articles at these links: