STARS US

I was 32 and healthy when I visited the Hoover Dam and had a first ever “grand mal seizure”. That was the beginning of my medical journey which would take five years before my true condition was diagnosed and properly treated. If it weren’t for my being a nurse, taking some initiative, and finding the STARS website, I might never have learned the truth.
Following the seizure I was led through a world of neurological workups, in hospitals in Nevada and later in my home state, Connecticut. Even though every neurological test came back negative, my neurologist placed me on an anti-seizure medication and told me not to drive for six months. He said that as many as 11% of the population have a one-time seizure in their life, never to be troubled by the event again. He believed that I fell into this category. But the seizure seemed to trigger a new problem.
White eating, I often would feel faint. After the first few bites I would “swoon” for several moments, nearly but not quite losing consciousness, and then feel fine. My neurologist told me this had nothing to do with the seizure and added that I should eat breakfast every day. He weaned me off the anti-seizure medications and discharged me, telling me to be in touch if I had another seizure.
During the next two years, I worked full time and I got married. I continued to nearly pass out on a daily basis, and still didn’t know why. I was so used to the “swooning” that during meals I would routinely lower my head when the lightheadedness came. I would do this while at work, at restaurants, anywhere. My husband and co-workers became accustomed to my strange ritual.
It got worse. I started actually blacking out for very short periods, perhaps a few seconds. I was trying to figure out the best way to get the right medical help, and then found out that I was pregnant. Uncannily, the swooning stopped entirely during the pregnancy and I thought I was fine. I don’t remember exactly how old my infant son was when the “swooning” started again, but it did. I dealt with it the same way I had in the past. I would begin to eat, feel like I would pass out, lower my head and the feeling would quickly go away. Life went on like that until I had a second seizure, nearly five years after the first. My two-year-old son and I were home alone, and I was watching him play as I was eating breakfast. The next thing I remember is waking up on the floor with my upper arm muscles heaving. I was now highly motivated to get to the bottom of my problem.
I consulted a new neurologist and again all tests were negative. I was informed that because I had suffered two unexplained seizures within 5 years that my diagnosis was epilepsy. I was put on anti-seizure medication and told not to drive again. I told the neurologist about my daily “swoons” and the blackouts associated with eating. He told me that the sensation was probably an “aura” and part of my diagnosis of epilepsy. All I can say is that this just felt wrong; something was telling me to look further.
I started searching the web extensively, looking for clues as to what might be happening to me. I happened upon the STARS website and “Asked the Expert” who concurred that epilepsy may not have been the correct diagnosis and asked if I had seen an electrophysiologist (heart rhythm specialist).
About the same time, a physician friend also suggested that I be seen for a complete cardiac work up. I asked my neurologist for the referral, but he responded by saying that there was no mistaking that I had epilepsy, and that if I had any doubt I should attend an epilepsy clinic at Yale University Hospital where they “will make you understand” I decided to find myself a cardiologist.
The cardiologist sent me home wearing a monitoring device, and after 24 hours he called and said “I know what is wrong with you.” The monitor revealed that my heart was stopping for 5 to 10 second intervals whenever I began eating. He said my diagnosis was “Swallowing Syncope,” a rare problem where the act of swallowing triggers the vagus nerve to over stimulate the heart’s electrical conduction system, thus cause it to stop beating.
The cardiologist advised that I should get a pacemaker. While a pacemaker wouldn’t correct the underlying vagus nerve problem, it would serve as a safety net when the vagus nerve triggered my heart to stop. My demand pacemaker was inserted in January 2005 and I have been completely symptom free ever since. After my pacemaker was implanted, I read the warnings about not going through airline security, not getting near large speakers or other electromagnets and, incredibly, not going to the Hoover Dam which is one of the world’s largest electromagnets. I now realized it might not have been coincidence that I had an initial seizure while my future husband and I were standing on the Hoover Dam looking at the collection of high-voltage electrical wires heading out in the direction of Las Vegas?
Perhaps I had some latent electro-cardio issues that got worse that day. The moral of the story? Think twice before visiting the Hoover Dam, and don’t always listen to your neurologist. If in doubt, seek a second opinion.
Martha Bryce