Dealing with Epilepsy

When I was age fourteen, still in eighth grade I started to change in a dramatic way. I had previously been social and outgoing and enjoyed the camaraderie of school friends and buddies, but inexplicably I lost any sense of youthful optimism and slowly started withdrawing from my peers. I had no understanding of why this was happening, I just had a very dark foreboding, and a deep sour depression set in.

                           

I loved team sports despite the fact that I was a lousy athlete and would play football, baseball, and basketball. The latter I had absolutely no clue how to play. I only picked it up in junior high school which was too late to be even remotely proficient. But I knew how to pass, run, catch in football, and I could pitch, hit, and field in baseball, at least to the point where a person watching would not scratch their head and wonder what the hell I was doing. So sports was the one thing that I would still do collectively with my friends.

                 

Sometime in January of 1968 when I was a freshman in high school, my buddies and I got together one Saturday afternoon to play street hockey at a friends house. We were all mediocre but we didn't care. It was a great way to spend a winter day. About after twenty minutes of play I became light headed and confused. I lost all context of where I was or what time it was, and walked off to the side of the house. I found myself on the ground trying to lift myself off of a hard and frozen surface. I only regained full consciousness in my friend's living room sitting in a lounge chair while the rest of the buddies were cracking jokes and being typical fifteen year old's.

I was bewildered.

The last thing I remembered was that I was playing outside, then there was this fleeting memory of trying to lift myself off the ground, then suddenly I was sitting inside. I didn't remember stopping to play or walking in the house with my buddies. I had no idea how long I had been inside. My short-term memory had no continuity and was missing details of the very recent past.

Once I became coherent enough to realize something unusual just happened, I cut into the conversation saying, “Wow. I don't remember anything that happened in the past few minutes. I feel like I just stepped into some time machine and advanced to the future. The last thing I remembered was we were playing outside, and suddenly I'm in the house. What happened?” I was amused by the experience, except for the fact that a terrible headache was setting in.

My friends didn't have an answer and looked at me with nervous smiles. Typical of fifteen year old boys, it didn't concern them terribly, especially since I was intact and ambulatory. Much more interesting to talk about girls, and I shrugged off the experience as a one off.

A few weeks later, it happened again under similar circumstances while playing basketball in the gym at school. Instantaneously I lost all context of continuity of time. I was standing in the middle of basketball court and didn't remember how I got there. Fear and adrenaline kicked in instantaneously. Suddenly I had no memory of anything that transpired earlier in the day. No memory of getting up, having breakfast, taking the bus, going to homeroom. My legs felt very heavy so I slowed down my pace on the court. I bent over and slowly caught my breath and my memory started to recover slowly.

This time I was not amused, I was scared. This was not a one-off but something seriously wrong. At fifteen where normalcy is paramount, I decided not to share this with anyone. I figured if it happens, I just slow down, catch my breath, and deal with the headaches that follow. The last thing I needed was to be thought of as different. 

The headaches were nasty, brutal, and every bit as debilitating as migraines. And like migraines, they were sometimes accompanied by a slight sense of nausea, sensitivity to light, noise, heat and cold. Memory came back in small fragments which one had to put piece together like a jigsaw puzzle. Typically it took me about twenty to thirty minutes to fully recover my memory and be able to account for the events of that day.

These trends continued for years, and they always involved aerobic sports where I was running and breathing hard continuously for fifteen or twenty minutes. The slow recovery of memory was something I tried to mask. After gym class I had no idea of what year it was, much less what my next class was. I would typically follow my friends in the hall and look for an indication of where I was supposed to go. I remember one time going to my locker, and getting frustrated that my combination wouldn't work, only to realize I was the locker I was standing in front of was my freshman locker. Then a memory fragment would crystallize and I would come the realization that I was a sophomore, and my locker was somewhere else.

It was in December 1968, on Friday the thirteenth no less, that things took a turn for the worse. I was at gym playing full court basketball which I was terrible at but loved. I somehow was managing to rebound well and steal balls from the opponents but when I drove towards the basket I'd stop at the key and throw bricks, missing every time. A schoolmate Ricky yelled at me to start using the backboard. On the next steal it worked and got an easy layup, but a couple of minutes latter in mid court everything became disoriented and I lost all context about where or who I was. Oddly the one thing I could remember was that this had happened before. I got frustrated and angry and rather than pausing and walking to the sidelines to catch my breath, I pushed on.

The next thing I knew I was on my back on a cot in a trainers room. I had a god awful headache, nausea, and virtually every muscle was exhausted. One of the gym teachers, typically a crusty ex-Marine, was sitting on the cot, by my side looking at me with fatherly concern. He spoke in a soft voice and showed me some curved hard plastic tube and told me that this had been down my throat.

Swallowing, I believed it. My throat was raw and lacerated. I could taste the blood in my mouth. I slept for an hour and I was surprised to wake up with my parents by my side. Mom had a forced smile on her face. They told me that they were going to take me to the hospital. I was too exhausted to argue so I went quietly. I went through a standard medical examination and then was told I was going to spend the weekend in the hospital.

At which point I became angry. “I don't see what the big deal is, all I did was get winded and fainted.”

“No, you had a seizure.”

I was stunned.

Over the previous few hours I had been perplexed about the amount of bruising I had on my body, and cuts in mouth and tongue. While the explanation clarified everything, I was secretly enraged. “Seizures? Are you f*****g kidding me?” I bit my already badly bitten tongue and quietly walked with my parents to the admission office.

Thinking back to that time, I'm reminded of the scene in the movie “Little Miss Sunshine” where Duane a high school freshman who has aspirations of being an Air Force pilot is told that he is color blind. My anger was similar but went a lot deeper, owning to the implications of how it could effect every aspect of what otherwise would have been a normal life.

Seizures I quickly learned, were symptoms of one of many things that could be going wrong in one's body. They can be caused by tumors, scar tissue in the brain, hypoglycemia, hyperactivity of external stimuli (example strobe lights), sleep deprivation, and hyperventilation. For about fifty percent of adolescents that have a seizure, they never have one again. Apparently the adolescent stew of growth and sexual hormones in a teenager's body can create some metabolic tipping point which allows these things to happen, but as the body matures the risk of recurrence melts away. If you seize, you are not considered to be epileptic.

Epilepsy is the catch-all for when you have more than one seizure that doesn't not have some obvious physiological origin. The origins of it can be hereditary or involve some neural reorganization, either of which result in the creation of hyper-excitable cells and concentration of calcium ions in brain neurons.

The brain normally functions in a wonderfully asynchronous fashion, where neurons are happily pinging other neurons, processing external stimuli, monitoring your vitals, allowing you to synthesize all of these inputs into form and meaning. The hyper-excitable cells short circuit all of this activity, overwhelming the delicate chemistry of the brain by imposing a crude, hyper-synchronous jolt of electronic discharges. It's really not that different from taking someone unconscious and tasing them repeatedly.

Eventually the chemical imbalance that caused the hyper-activity dissipates, and most amazingly, the brain reboots, much in the same way your computer comes to life after it crashes. The primitive functions start working and slowly the brain recovers back to being fully functional. About the last thing to recover is your short term memory.

After a day in the hospital and a battery of tests include EEGs, spinal taps, and simple hand and eye coordination exams, the doctors declared me healthy, and assumed I fell into the one-off bucket and wouldn't have these issues again. In retrospect the doctors missed an important detail which could have altered their diagnosis. They never asked about the dizzy spells and loss of memory that had been ongoing on a regular basis for almost a year. Technically these things are called epileptic auras (or short lived and partial seizures). They can serve as an early warning system that a full grand mal seizure is just around the corner. It was the warning I ignored while on the basketball court. Had I been an adult I would have volunteered this information if a doctor had not asked for it, knowing that enabling a doctor with more detailed information is your best chance of getting control of a medical problem. But I didn't and the doctor told me what I wanted to hear.

I wanted to get out of the hospital and feel normal.

Going back to school was difficult because suddenly what I had tried to keep to myself was public knowledge. I brushed off an inquiries from my friends, cracked some jokes about it, and reassured them that it was a freak episode. The next two years the same patterns of epileptic auras continued. Whenever I played some team sport and found myself hyperventilating after twenty minutes of activity, I would experience an aura, slow down, catch my breath, and shake off the headaches. I kept these ongoing symptoms to myself. The uncertainty of my health and the fact that I was struggling with it alone took its toll. The depression that surfaced in eighth grade became overwhelming, driven by the knowledge that I did not have control over my own life. Thoughts of suicide became a preoccupation with me.

Then as a senior in December in 1970, while playing basketball in the gym lightening struck twice. The second seizure involved a trip to a neurologist who after some tests prescribed a daily dosage of Dilantin, I was also told that I could no longer participate in gym class, and that I was diagnosed as having idiosyncratic epilepsy. I hated the diagnosis, but I liked the idea that doctors were convinced that it could be so simply controlled by taking a few pills every day. I was going to be graduating in a few months, had been accepted to UVA, and was going to take those silly pills, and be able to put all of this behind me.

Unfortunately Dilantin really never worked for me, but it took me almost two decades to come to this realization.

The crux of the confusion is the fuzzy concept of control, which is a relative term for epilepsy. A small percentage of patients seize once a week, some even multiple times in a day. So control for one patient could mean reducing seizures to once a month. Control for other patients means no seizures if you take your meds.

At UVA I had lots of seizures. The first was within days while playing football in the quad. Another after walking off in a dazed aura on the third floor of my dorm and falling somewhere on the steel capped steps at the bottom of the dorm entrance stairs. I suffered from a skull fracture, was partially paralyzed on one side of my face, and lost most of my hearing permanently in my right ear. The paralysis was short lived. One seizure happened immediately after getting washed down a flash-flooded creek near a farm house my buddies rented. I seized just after pulling myself up over the mudbank trying to avoid getting trapped under a Ford Mustang that being washed away with me down the river. I also had seizures in situations which started to diverge from the standard pre-conditions in high school.

Under a couple of situations I had seizures in a class room under the stress of finals. The mental stress compounded with too little sleep, and too much coffee turned out to be another tipping point. The paramedics and emergency room staff at UVA got to know me as a regular. Unfortunately, there was very little interest in my situation, owning to the fact that that I had been diagnosed and doctors were convinced that the seizure was an artifact of missing my daily medication. And that was difficult to dispute given my mental state when being interrogated after a seizure.

A typical conversation when first becoming conscious would go like this:

“Bob can you hear me?”

“Yes.”

“Do you know what year it is?”

“Nineteen sixty eight?”

“No, it's nineteen seventy four.”

“Oh.”

And after a few seconds a piece of missing memory would be recovered. “Yah. Now I remember.”

“Did you take your Dilantin pills this morning?”

“Yah. I think so.”

Then the doctor would shake his head, indicating that he was dubious, and assume that I forgot to take my medication. I would rest for about an hour, shake off my dizziness and head home, with no follow up.

This became the template of my medical interactions.

Putting aside the patent absurdity of asking me if I took my morning medication immediately after I revealed couldn't remember the current year within the better half of a decade, there are the inherent limitations dealing with emergency room doctors who for good reason are focused addressing life threatening symptoms and leave it to the patient to follow up with specialists who might step back and revisit whether or not medications work.

I've talked to other folks who have had to deal with seizures and while low frequency seizures are orders of magnitude easier to live with that people who have them every day or few weeks, the down side is that it takes a very long time to measure any statistically significant improvement for a change of medicine. It also requires strong concerted effort on behalf of a patient and neurologist to step back, apply some skepticism to the current diagnosis, and depart from the current treatment to something new. It takes months to wind up on a new medication, more months to wind down on the old medication, and three or four years to come to meaningful conclusions about whether things have improved.

Changing medications implies substantial risk for the patient, and requires determined self-discipline and focus by the patient to administer medication regularly and keep a written journal that ensures a seizure was not caused by missing medications. But self-discipline is not a strong suit for a twenty year old kid. Denial comes much easier.

While grand mal seizures are an acute medical condition, typically a person will recover from it without medical intervention. The two biggest risks are having a seizure in the wrong place at the wrong time, or on rare occasion having a seizure that takes a serious turn and causes cardiac arrest.

During my life, I've had five seizures that were life threatening. Two were because of cardiac complications during the seizure where my heart stopped and CPR had to be administered.

Three other times I was in a precarious circumstances: the flash flood in rural Virginia, toppling down the stairwell in my college dorm, and getting caught in the 1978 blizzard in Massachusetts. My car stalled about a hundred yards from the driveway of my house. I had to crawl on my hands and knees to get up to my house, and I seized while opening the door. Had it happened five seconds earlier I would have seized outside in the howling winds and snow and could have easily died of exposure.

Typically people are unconscious during a seizure, but not always. I had one seizure where I was semiconscious and could sense my head involuntarily jerking. The time a person seizing is unconscious is usually a few minutes unless there is a complication. Becoming conscious after a seizure is itself disorienting.

For me, consciousness begins with a the mistaken notion that it is morning and I am simply awakening from a long nights sleep. Then I become aware of strange voices I don't recognize and realize that I'm not in my own bedroom especially when I shift and feel a hard surface. Often it is waking up to a very loud ambulance siren and the technical discussions between attending para-medics.

Ask a person how many times they've been taken to the hospital. If they can't answer you, it's most likely they have epilepsy and have lost count.

Embarrassment is a predominant emotion of someone who is coming out of a seizure, and its unavoidable. One time I collapsed into a grand mal seizure and defecated in front of a group of forty people who had been listening to me give a technical discussion. Anyway you cut it, that's embarrassing.

But the embarrassment is not confined to the individual who seizes, it can carry over to family members when it happens in a public setting. Family members are deeply traumatized by seeing a loved one in such a state, but their inability to do anything especially when there is a crowd of strangers gawking at the spectacle carries its own emotional baggage. I've talked to young families whose child has had seizures, and despite being well educated, their impulse is to assume that the problem is transient and will go away.

Another natural emotion is revulsion. I would be lying if I stated that I would prefer to have a seizure than watch one, but not by much. Seizures are disturbing to watch, and tap into primal fears and realization of all our mortality. The fact that a person who in one moment appears perfectly healthy and in the next moment is writhing on the ground in what outwardly looks like death throes, can be frightening to witness.

I've had enough seizures to quickly shrug off the initial embarrassment. After recovering, people approach me who saw me seize to inquire about my well being but also to talk about their experience of being so terrified.

One particularly nasty seizure occurred when taking a final examination. It was one of the last finals I had to take in my last semester at UVa, and it was for a class I was taking in anti-trust economics. I was an English major focusing on creative writing, so this fourth year class was a real stretch. My mid-term grade was disappointing and I was determined to turn things around during the final. Pushing towards the finish line of my undergraduate life, I prepped hard, probably missing meals, drinking coffee, and studying late into the night. Basically doing all the things that are standard seizure precipitants.

When the final exam was placed on my desk, I looked over the essay questions and knew I was going to ace the exam. Excitement and adrenaline kicked in and I started knocking off the essay questions. About twenty minutes an aura kicked and I lost all my train of thought. I knew that I was at risk and tried to compose myself. I stepped out of the examination room to sit on steps of a staircase. Time was bleeding away, so within about five minutes context came back and I went back to finish the test.

Auras are useful because they tell you that you are in a dangerous state, but they are internal and transparent to others. I knew I could not simply talk to the professor and tell him I wasn't feeling well. Trapped by circumstances, I had to risk going back and try to finish the examination. I probably lasted about thirty seconds. Next thing I knew the UVA paramedics were strapping me into a stretcher and the professor looking deeply frightened told the students that they could take as long as they want to finish the exam.

Fast forward about sixteen years and I am married, have put myself through graduate school in Computer Science and have career in high tech at Digital Equipment working on distributed database technology. I work twelve hours a day, and have two young children I need to support. Since college I continually made adjustments to my medical condition. After having a particularly nasty seizure playing basketball on an Easter Sunday where CPR was administered, I gave up playing basketball and all other competitive team sports. I decided I would workout alone, allowing me to pace myself and slow down if I felt the least bit disoriented. Sometimes it worked, sometimes not.

But as I approached middle age, the pattern of my seizures took a strange turn and they started happening not just when I was stressed and performing.

Out of the blue, while working in an office, sitting at a desk and being very passive, I fell over and seized. I was thirty-seven. They took me to the hospital, let me rest, and then took my driver's license away for a year and a half. It's one thing to deal with a serious medical condition on your own, it's quite another thing when it impacts people who are dependent on you to make a living. People I loved counted on me to be healthy, and I was failing.

It's been said that with epilepsy, the real handicap is other peoples perceptions of you. While there is a grain of truth to this I rarely encountered any serious social stigma about my condition. Most people I knew were supportive and sympathetic. One glaring exception occurred when I was attended a Catholic pre-cana session before getting married, and the theologian lectured against getting married to psychopaths, narcissists, and epileptics. I spent a good couple of hours composing a letter to the Boston Diocese, trying to clarify the distinction between a behavioral pathologies, and neurological disorders. To their credit they got back to me and acknowledged the difference.

But good intentions can only go so far. At the end of the day, employers are limited in what they can do and will extend themselves only so far. If you start having regular seizures on the job, you will quickly find yourself unemployed.

If you are the bread winner for the family, your ability to be able to function at work and keep your job becomes paramount. The latest seizure so was atypical and obviously not controllable by medication or the life time adjustments I had carefully made. Things were out of control and I was scared enough about the implications of this on my family to finally be proactive and start aggressively talking to specialists and start juggling medications to see what would really work.

My first visit was with a neurologist at MGH. He listened and concurred that things had changed and added an additional medicine called Tegretol, to supplement the dosages of Dilantin. It did not take long to gauge its effectiveness. I started seizing randomly at the drop of a hat. No auras, no standard precipitants. I went back to MGH telling my doctor that the additional medication made things worse. The doctor disagreed insisting that the additional medication could not have cause the problem.

I thanked him for his opinion, and immediately scheduled an appointment with another neurologist at the same hospital. I got the same, wrong answer. I moved on and got a reference to a neurologist at Beth Israel who was highly recommended. She was slowly moving from doing clinical work to spending time doing research, but she was willing to take me on as a patient.

She was a wonderful doctor, one of the very few specialists who truly listen and respect their patients. I gave her my whole history, explained what worked and didn't work, made the case that the secondary medicine destabilized my condition.

She listened, saw my frustration, and agreed. “We've got to get you off Tegretol. Sometimes I don't know how you people cope with these situations.” she said. She proceeded with the standard battery of neurological tests, and finished by asking me an unusual question.

“Do you write?”

Thinking that the question had to do with fine motor skills, I said “Actually I spend my time typing on a computer. I seldom write anything long hand.”

“No. I meant do you write non-fiction or stories?”

For a moment, I looked at her slack-jawed.

“How did you know that?”

She smiled. “Funny. Almost every patient I see says yes.”

She then prescribed a third medication called Primidone.

“Take two pills a day. Tonight start with a half tablet and then move to a full dosage of two tablets per day after about two weeks. Then we will slowly decrease the Tegretol dosage over a period of a few months.”

The doctor was being pro-active and aggressive and was just the kind of doctor I was searching for. I purchased my medication, and took my new half pill in addition to the other drugs I was taking right before going to sleep.

In the morning I could not manage to lift myself out of bed.

On more than one occasion when younger I had indulged in heavy drinking. There were a few nights where I polished off a fifth of tequila. No encounter with alcohol in my life matched the hangover I received by taking this small little pill. And this was a quarter of the dose that I was supposed to take every day.

Once you achieve therapeutic levels with some drugs, you body reaches a steady state of equilibrium.

Primidone is different because it is a barbiturate and is dynamic.

The next eighteen months were spent adjusting to the change of medications. I would have dizzy spells at DEC, sometimes losing my balance while walking down the halls. Coffee couldn't be avoided, and it helped me concentrate. I drank about eight cups a day. Slowly I ramped up and the side effects of Primidone started going away. After taking the drug for couple of years it had virtually no side effects. It became as innocuous at taking an aspirin.

The two year mark was also significant because during that time I didn't have any seizures or auras.

Two years was about the longest time that I had gone without a seizure. But I was not assured, since statistically it could be an outlier.  Three years later and still no seizure, I was finally convinced that the drug was indeed doing its job.

This was in 1994. It had taken twenty five years to get my health under control. For the first time since I was fifteen I could breath easy and look forward to having a normal life.

Reviews

[emmajoy]

I need to come back to this again, to read slowly rather than start and take off. What you've written and posted deserves far more care and calm appreciation. In the interim: have to add that it takes great courage to air such personal details shows amazing courage - as well as feeding the mind of this ignoraamus who first saw a seizure just before school assembly almost thirty years ago. Thank you so much for sharing what is far more than a 'post'