I have epilepsy. This past year I gave birth to my first child, a daughter. Before my pregnancy I was seizure-free during the day for about 12 years and only had 1 to 2 seizures per night, while I was sleeping. During my 3rd trimester, 2 months before my daughter was born, I began to have an increase in seizures activity that landed me into the hospital twice within a month. Both times, I spent 3-4 days there. While there, I had a lot of seizures that occurred continuously. No changes were made by the doctors, the seizures eventually calmed down. However, these epileptic events and seizures persisted for the remainder of and after my pregnancy. Often, these seizures were triggered by environmental causes that made me feel more confused and unclear about what was happening to me. I had never had seizures that were triggered by environmental causes before, and the seizure behaviors were also different to what I had grown accustomed to over the previous 12 years.

In the 35 years of having epilepsy, I had never experienced seizures quite like these. I began having a strong sensitivity to noise, light, and startle. Light in general, including sun and candle light, could trigger seizures; high-pitched noises like drilling, hammering, even voices triggered seizures, and if by chance I almost tripped, or my husband put is hands on my hips or shoulders when I didn't expect it, in that I felt startled, I would have a sensation or an actual seizure. During my stay in the hospital, I heard repetitive noises in my head like chicchichichcic and bambambambam that kept cycling. Each time I felt the seizure growing closer, these sounds repeated over and over again for hours, even in my sleep. As they repeated, they built and grew faster until it hit a point that triggered the actual seizure. I couldn't lay on my back because it some how made me feel closer to having a seizure; my left arm and hand also experienced part of the sensation as the seizure occurred.

I spent seven months feeling afraid to leave my house. I always carried with me earplugs and sunglasses in case I needed to protect myself. In the beginning, I wore them all the time, daytime, nighttime, and during sleep I used earplugs and had a shirt wrapped around my head to keep any light out of my eyes. I used meditation music daily to go to sleep to try to calm my system down.

When I was in labor, I wrapped a shirt covering my eyes while wearing sunglasses and with earplugs in my ears. The room was dark with the shades down and no lights were permitted on. I was lucky to have two amazing midwifes who worked with my situation. Ironically, as my contractions progressed my seizures dissipated.

As time has passed so have my symptoms. It has taken a year to finally feel much like myself, less afraid and more relaxed. I haven't had a day seizure in a year, so I am finally driving again, but much more limited than before.

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.

On a final note, my story above is one example of the kind of story, I would love to hear including any alternative treatments that you have tried that may or may not have been effective.