Jeffrey’s Story

February 12, 2019

A diagnosis of epilepsy need not be a barrier to a professional, rewarding life, as my experience may attest.

I was diagnosed with epilepsy in 1980, while still in high school. My seizures were diagnosed eventually as “partial, mild”. In fact, the manifestations were small, visual disturbances of tiny pinpoints of bright lights, called “scotoma”. Also, I would experience particular smells and tastes – sour and sweet. These occurrences were very brief and infrequent. Additionally, there were even very brief feelings of euphoria, lasting for one second or two, at the most.

As a young lad, I had no feelings or outlook of concern, prior to diagnosis. I can even recall one instance of playing a set of tennis, experiencing a seizure, then taking a very brief moment of rest, then of continuing play (and winning the match). I really did not even recognize the symptoms for what they were.

During a routine annual examination, I reported the occurrences to my family doctor who recognized the symptoms immediately. He referred me to a child neurologist. Treatment began and succeeded, as I no longer experienced the seizures. As I aged, I moved to another neurologist who maintained the same treatment.

Eventually, I noticed that when I failed to take my medication, I may have a seizure at night. It was not a certainty, nor was it immediate, but when the medication level in the blood lowered, it increased the likelihood of a night-time seizure. Taking my medication regularly and consistently was a good rule and a simple one, and one which I did not always obey, either through negligence or obstinacy. Once, in the early 1990’s, I even stopped taking the medication for thirty-one consecutive days, as a personal “experiment”. There were no symptoms for that time, but on night thirty two, I had a seizure. (Well, I am a lawyer, not a scientist or doctor, and I successfully proved that fact to myself – genius). Take your medication, folks!

These night-time seizures are slightly more debilitating than the ones I had in my youth. I am told that I freeze up and possibly kick my legs a bit. I do not remember these actions. It is disconcerting for my wife. They can last for as long as thirty or forty seconds. The first time it happened, my wife, not seeing it before, called an ambulance, fearing it was something worse. The physician at the hospital determined the cause.

On one occasion, I had to fly to northern Canada on business. I missed my morning dosage of medication. I did not carry my medication on my carry-on baggage. (My error – a good lesson). Of course, the checked bags went elsewhere on arrival night. So, an entire day of medication, plus the following morning’s dosage was missed.

Two days following, while preparing to venture out on an Inuit-led dogsled ride, I had a seizure and passed out on the snow, to be brought to a doctor in Pond Inlet, Nunavut by my comrades. (Loved the dogs, but missed the ride).

We can fully manage my present situation, but if the prescribed medication drops in my bloodstream, this deficit does increase the chances of a potential, night-time seizure.

Following a seizure, I tend to begin a day with a right-side headache, lasting two or three hours. I also tend to have a day of what I refer to as “racing thoughts”, making sleep difficult. It is a strangely positive feeling in that the thoughts are lucid and I am quite energized, willing and able to take on multiple tasks and thoughts competently. Thinking is energized, so it tends to be an increasingly productive time for me, strangely enough.

Another experience post-seizure is a repeated feeling of “déjà vu”. I get the feeling that whatever I am watching or hearing, I have seen or heard exactly the same way before. It is an odd feeling, though it is not debilitating at all, once one understands what it is. One can understand the feeling with an example. While watching a “breaking news’ story of some event that is just occurring, one gets the feeling that one has watched the news story previously. Of course, this fact is a physical impossibility as the event has not happened before. It is just presently happening. Questions seem to be asked the same way, answers are given the same way, and issues are resolved as they have been “previously”. This “déjà vu” feeling may happen only once, or it may occur continuously over a few hours.

All returns to fully normal in a day or two. I submit that the post-seizure symptoms would not be noticeable to third parties, should I not discuss them, with the possible exception of the racing thoughts. Why? They may be evident as these thoughts tend to manifest as increased activity and communication (though, as an opinionated lawyer, fewer persons may notice my new-found talkativeness than I think).

I share these personal experiences in the hopes that their specificity will assist others recognize possible symptoms of epilepsy and seek treatment for these symptoms. I hope that others will see that they may live a productive, professional and rewarding life. My advice for those who have a diagnosis like mine is to foremost maintain proper prescription medication usage patterns. When I do so, I do not have problems associated with epilepsy. I am able to maintain an active life, intellectual, social and physical, with no disturbance.