Get “Seizure Smart” This November
November is National Epilepsy Awareness Month, and the theme proposed this year by the National Epilepsy Foundation (NEF), which sponsors two regional offices in Pennsylvania and a number of chapters serving specific locales, is “Get Seizure Smart.”
I first mentioned epilepsy and seizure disorders in a column in April to help promote a fundraiser in Tunkhannock coordinated by a long-time friend of mine, Nikki Stone, whose son, Trevor, suffered seizures in his sleep. Although not uncommon, the type of seizures that Trevor lives with and the times at which they occur are as unique to him as a seizure disorder is to anybody who has dealt with epilepsy.
The fundraiser was a great success, and Nikki was thrilled with the article, but she admitted to being a little disappointed with me that I did not disclose my own experiences as a person living with a seizure disorder.
For my former classmates who may be getting a little ahead of me, that’s not what was “wrong” with me in school. I was just a fairly eccentric and insecure kid. Unlike most people who live with epilepsy, I did not suffer seizures as a child or during my teenage years.
I am one of many people who began to experience seizures as a result of blunt force trauma to the head. In my case, it was a fall from the back of a moving van on a snowy day in 2000 that caused a minor brain injury but left scar tissue on my temporal lobe that sometimes prevents the neurons that once traveled freely through my cranium from maintaining their familiar path. Many veterans returning from conflicts in Iraq and Afghanistan with head injuries are experiencing seizures for the first time in their lives.
The day after my accident, I was working on my truck with the hood propped up and a feeling came over me unlike anything that I had ever previously experienced. First, I was hit with nausea. Then, my mouth had a funny taste in it, and something smelled putrid. Finally, an electrical impulse started deep within my being and spread out to the tips of my extremities, giving me the sensation that I was growing while everything around me was shrinking.
I grabbed onto the truck and said to myself, “What the hell was that?!” I experienced two more of these odd spells before the day was out and continued to have four or more of them per day for about a week before they subsided. In between spells, which is what I called them, I felt intermittent nausea and a dull pressure in my head.
They stopped as suddenly as they began, however, and I felt fine for about a month, when the spells returned with a vengeance. I began to have mild hallucinations, hear voices, and see changes in colors. The spells would build for about a week, reaching a crescendo before ending abruptly, as if someone had turned off a switch.
To make a long story short, I went to my family doctor, who told me that I was having anxiety attacks. He prescribed Paxil to me, which, from my experience, should be taken off the market. In my case, it merely erased my emotions, but I kept having the spells. The doctor continued for five years to tell me that I was having trouble dealing with stress and prescribing me unneeded antidepressants.
Lucky for me, close friends and family could see a pattern evolving of which I was not entirely aware. That’s one of the tricky things about epilepsy; what you are experiencing is not what the people around you are observing. It was those collective observations that gave me the confidence to insist to my family doctor that I was not experiencing anxiety attacks and to remind him that these episodes of spells began after the day in 2000 when my head bounced off the pavement.
Finally, my doctor said, “Rick, I think that you are having seizures.” A battery of appropriate testing, followed by two years of experimenting with two different seizure medications nearly eradicated my seizures and gave me back my life. I had lost seven years looking for an answer, however, which is why one of the NEF slogans is “Not another moment lost to seizures.”
Medicine, however, was not enough to make me feel whole again. Fortunately, the Epilepsy Foundation of Eastern Pennsylvania (EFEP) gave Kerri Michnya, an EFEP associate who had already begun presenting seminars in schools and at larger companies, leeway to coordinate the first meeting of the EFEP Lancaster Chapter Adult Support Group. I had driven once to a similar meeting in Wilkes-Barre that was attended by a handful of people, but nearly 20 people attended this first meeting in Lancaster, and we all knew that we had started something that was going to last.
Finding an outlet for sharing my own experiences and hearing the stories of so many other people who lived with different forms of epilepsy and who experienced varying types of seizures and levels of severity was empowering. My position as a writer for a local newspaper company allowed me to promote the group, which was expertly guided by Kerri.
We watched attendance grow each week, and we watched the lives of regular participants improve as they too found their voice and strength in each other’s stories. The Lancaster Adult Support Group became the fastest growing chapter in the state, and we were honored to be chosen as hosts for an annual EFEP conference.
I greatly miss the friends that I made through that group, but I know that they are in good hands. I also have no doubt that there are many people in the Endless Mountains besides Nikki and Trevor and me who have dealt with these issues and who can help others by sharing our experiences, paired with scientific facts about epilepsy.
Pennsylvania is served by EFEP and the Epilepsy Foundation of Western Pennsylvania (EFWP), which splits our readership area. My desire is to develop a database of adults who have seizure disorders, as well as parents of children who do, so that we might get together by next spring to initiate a support group. I would work with the two regional offices to garner support for our activities, while also seeking a venue central to Bradford, Sullivan, Wyoming, and Susquehanna Counties that might accommodate us at no cost. I would also solicit speakers for the first meeting and coordinate further activities with those who have the time and desire to work with me if there is sufficient interest.
Please contact me via email at firstname.lastname@example.org, using “epilepsy” in the subject line, if you are interested in participating in such a support group or call 570-746-1217. In the meantime, log on to www.epilepsyfoundation.org to “Get Seizure Smart.”