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MY EXPERIENCE WITH USING NEUROFEEDBACK
A year ago, after three and a half months of this insanity, my doctors were still trying to convince me to change my meds. I decided to try something new and different. I found a neurofeedback specialist who had experience with epilepsy and started doing neurofeedback in conjunction with the epilepsy medication I was taking. By accident, I came across neurofeedback on the web and learned that it was designed for treating epilepsy. Although, no huge study has been made, what has been done showed a high success rate. It was an easy decision for me - go on the medical rollercoaster again with drugs that never seem to work, except to make me feel sick, emotionally out of control, unclear in my mind, gain weight, anorexic, grow facial hair, irritable, and basically not feel well on a daily basis; or try something new and alternative. I figured what did I have to loose, -time and money. But what I had to gain seemed to offer me a much better outcome than all the drugs normally given to people with epilepsy.
I have had epilepsy for over 35 years. Neurofeedback takes time and patience, especially for someone who has had long-term epilepsy; whereas, a person who had epilepsy for a short time, may see immediate changes more quickly. Since I started, I have noticed some significant changes. For example, these days I don't always have seizures when I am sleep, especially if I take a nap. Before my pregnancy, anytime I dozed off like on an airplane, or took a nap during the day I would have a seizure. My seizures were like clockwork. They happened at specific times in my sleep; ten to fifteen minutes after I started to fall asleep and if I had additional seizures it would usually occur just before I was waking up in a similar timeframe. In general, my night seizures these days are not as disruptive. Before my pregnancy, I existed in constant sleep deprivation because my seizures would be so disruptive. These days they are much more gentle. Often, I am not sure if I had any seizures, or how many. I also do not feel sleep deprived, like I did in the past. The other significant change that has happened to me is that I am starting to have occasional nights without having any seizures. This never occurred over the previous twelve years before my pregnancy.
I still have a long road to continue on regarding my epilepsy and using neurofeedback. What I do know is that the neurofeedback has made a positive contribution to my seizure control. I am hopeful that it will make further contributions. But as I said earlier, for someone like me who has had epilepsy for 35+ years, neurofeedback needs time and patience to retrain the brain from behaving in ways it has become accustomed. For now, neurofeedback has been a worthwhile investment that I continue to pursue and so far I have been able to avoid the medical rollercoaster and all it's difficult side effects.