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JD’s story: Juvenile Onset Myoclonic Epilepsy nearly killed me (again)

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JD submitted this story of how juvenile onset myoclonic epilepsy has nearly killed him several times over.

JD’s Story

When I was 14 (1985) I began having bizarre, frightening experiences. In the mornings, while in the bathroom, I would suddenly find myself falling to the ground without any memory of how I stopped standing normally. During the day, in class, my head would suddenly bounce off my desk for no apparent reason. Sometimes I would hold conversations with people and, although nothing would seem different to me, they would start looking at me like I was crazy. When I asked why, they would explain I had stopped talking for several seconds and then started up again as if I had never paused, sometimes in mid-word.

A health class discovery

My pediatrician, a well respected doctor, had no explanation. He offered ridiculous suggestions like “try eating breakfast before going into the bathroom for your shower, etc”, or getting more sleep, and so on. I don’t think he believed these suggestions, but he needed to try something. A few months later, in health class, we were shown a movie. You know the type – black and white film, made in the 50s, with a horrible voice over and scratchy lines cutting through it. This one was about epilepsy, and although the medical science was horribly out of date even then, it was enough for me to recognize what was happening to me.

I can’t tell you the excitement and relief comes with realizing that there is an explanation for what is happening to you–that you are not a crazy person. The glimmer of hope it offers-that there might actually be some solution. After a series of tests, my self-diagnosis was confirmed and given a label: juvenile onset myoclonic epilepsy.

Juvenile Onset Myoclonic Epilepsy

This is a very technical way of saying puberty had triggered a condition I was born with that causes the brain to short circuit. Over time this condition, if left untreated, will develop into tonic clinic seizures, which are the type most people think of when they hear the word seizure wherein your muscles tighten and release repeatedly for varying periods of time.

Seizures that last five minutes or more, is called status epilepticus and could possibly result in brain injury or death. Often, but not always, these seizures include loss of bowel and/or bladder control. Just imagine explaining that to a new girlfriend in the middle of the night.

Another Mystery

I also experience something I call mini-seizures. My doctor has never given me a proper medical term, although I am sure there is one. In these mini-seizures I do not lose consciousness or anything else, it is just one specific set of things that happens. My chest constricts like a hiccup, I take an involuntary step, but most significantly, I feel as if my mind is momentarily slightly outside my body. That is a metaphor for something I have difficulty describing. I am not saying my mind actually leaves my body. I am saying the physical and mental perception is as if I am somehow disconnected from my brain and snap back into place. I know how crazy that sounds, but I do not know how else to describe the sensation. It is disorienting, terrifying, and exciting all at the same time. Afterwards, my stomach is tied up in knots for an hour.

The Meds

My first neurologist, at the age of 15, prescribed phenobarbital, a powerful barbituate. I went from being among the top students in my class to being a glassy eyed dope head in a matter of weeks. It also had the wonderful side effect of giving me acne across 80% of my face. All of this with little effect at reducing my seizures. My next doctor was horrified to discover he had prescribed this drug, and immediately changed my prescription to something called depakote. My acne cleared up, my mental processes became better (still not normal, but better), and my seizures started to come under control. There is no such thing as 100% control. I have been lucky enough to have good control.

Travel with a twist

When I was 19, I decided to travel across country in my car. People told my I was crazy to do this as an epileptic, but I refused to live a life of fear. The first leg of my trip took me to NY state where I immediately got into a car accident. At the time I did not connect it to epilepsy, but when I looked back on it later I realized it was an absence seizure that caused me to pause in the middle of an intersection, not poor vehicle pickup due to too much weight, as I tried to convince myself at the time.

The last thing I remember was checking both directions for clearance and then entering the intersection. I do not remember my car being struck in the passenger door, causing it to pivot up onto its nose. I do remember looking through the front window at the ground, and then the car slamming down onto its roof and spinning like a top. I managed to climb out and was standing there when the first responders arrived. I clearly remember all of them being shocked that I was alive, let alone suffering nothing worse than a few scratches. I did continue my cross country trip, but that is a separate story.

Frontline responder

Eventually I was able to maintain enough continuous years seizure free that I was able to volunteer as a firefighter (yes my Chief knew the story). Which was very exciting for me, because that had always been my dream job. After a time I was preparing to take the test to become a paid firefighter, and two days before the test I had my first tonic clonic seizure. I remember eating breakfast in a local diner, and then I remember being in an ambulance struggling with the medic. When I became aware enough to stop fighting him, my first question was, “What am I doing in an ambulance?” he told me I had a seizure, and I just sighed. Ending any hope of ever being a paid firefighter, or even volunteering anymore. After all, how could I possibly put other firefighters at risk like that?

As an adult living in California, I had to find a new neurologist. This doctor put me on a drug called Topomax, along with the Depakote I was already taking. In addition to successfully controlling my seizures, I lost most of my short term memory, and my weight dropped below my high school weight in a matter of weeks, essentially making me look like a junkie, and I began suffering from something called temporary global amnesia. This lovely condition presents as finding yourself somewhere with no idea how you got there or why, although you still know who you are and how to do things like drive for example.

New doctor makes a difference

My doctor at the time (I had returned to PA and a new doctor before this last symptom presented) told me this was unrelated to my epilepsy or my medicine. At which point I began looking for yet another new doctor. The newest doctor, who remains my current one, told me of course the conditions were related, in a way that made me feel good about thinking the prior doctor was a moron. He took me off both of the old meds and replaced them with a medicine called Zonegran which has proven to be very successful at controlling seizures and has shown little in the way of side effects.

In fact, not only did I regain a healthy weight, and my short term memory, but I also discovered that what I thought was a normal depression cycle (for me) was in fact a side effect of Depakote, and I had been suffering from cognitive issues as well, all without realizing it. Over a decade lost to depression and cognitive suppression. But nothing is 100% and I do still suffer from occasional seizures.

A different brand of fear

Although I still hold a legal driver’s license, I do not drive anymore out of fear of what might happen to someone else. I do not think I could forgive myself if someone else died as a result of me having a seizure while behind the wheel. What really scares me though is that I might die in some totally pointless way. I am a person who has traveled America several times, I snowboard, I’ve hiked mountains, I do not fear death by adventure. I do fear a humiliating death, falling down the stairs, hitting my head on a toilet, etc. and epilepsy makes that a real possibility. Ten years ago I almost died in the shower when I had a seizure, fell through the shower curtain, which then wrapped around my face, cutting off my air supply. Had one of my house mates not happened to be home, heard the crash, and kicked in the door when I didn’t answer, pulling the curtain off my face just in time, I surely would have suffocated to death. He told me my face was pale and my lips were blue and I immediately began sucking air in once the blockage was removed. I have no memory of anything between getting in the shower and waking up in the hospital.

Recently, I was riding my bicycle to meet a friend when I apparently had a seizure in the middle of an intersection. I remember riding my bike on Friday and waking up in the hospital on Saturday in four point restraints, a neck brace, my right eye swollen shut, and three broken ribs. In addition, for reasons I can not explain, I believed I had been kidnapped and that the medical staff were lying to me. I was actively fighting and verbally assaulting my caretakers as if they were indeed kidnappers, although I had no reason to believe they would want to do so. When my mother was put on the phone, I warned her to stay away lest she too fall into their trap. It would be Sunday before I began to return to reality. I still have no memory of events between riding my bike on Friday and waking up on Saturday, though I was apparently awake a good portion of that time. I am a man who believes in facing a challenge, attacking it, and defeating it.

An unusual opponent

When your opponent is your own brain, what are you to do? Unseen, unknown, unable to mount any type of defense or even be given a real explanation. This is life with epilepsy. What I want, what those of us with epilepsy need, is twofold. 1) an educated public and 2) a greater focus on a finding a cure instead of just a treatment.

So here’s some education: don’t ever put anything in an epileptic’s mouth, they’ll just bite it off and choke on it.

If you see someone having a seizure put a pillow under their head, and move anything that might hurt them away. Only call an ambulance if they have hurt themself already, or if it goes on for three minutes or longer, there’s very little a hospital can do for just a seizure. Although an extended seizure can cause brain trauma. Afterwards give them water, and tell them what happened, because they will be confused and dehydrated.

Epilepsy is not a sign of mental retardation or weakness; Alexander and Ceaser conquered the world while suffering from epilepsy in an age when people thought it meant you were possessed by demons.

Epilepsy does not prevent you from handling most mental or physical tasks, although you should self regulate when it comes to putting others at risk, but I am perfectly capable of doing most anything anyone else is doing on any given day of the week. The one thing all types of epilepsy, and many other neurological disorders have in common is low levels of a chemical called GABA. This acronym describes a a chemical which supports the transmission of signals between neurons on the brain. Anti-epileptic drugs help by increasing the receptiveness of the cannabinoid receptors (yes the same receptors as marijuana cannabinis affects) in collecting signals that the low GABA levels cause difficulty in making connections.

Another step forward

Is this an oversimplification? Yes, but it’s not wrong. So why are we so far from a cure? I do not know. The brain is a mystery still. Many good people are working on the problem, but no one has a solution yet. There are days, years, that go by where I am able to barely think about it. Other times, I have no choice because it is shoved right in my face like a brick wall. I am reminded that I am a powerless victim of my own brain and genetics and there ain’t a damn thing I can do about that.

All I can do is stand up and dust my self off and take another step forward because what other choice do I have. Screaming at the sky don’t do nothing, not even make me feel better. That’s life with epilepsy, until it isn’t. Why am I writing this for the whole world to see? I really don’t know, except maybe it’s a little bit cathartic. Epilepsy has nearly killed me three times now. Will it be the death of me in the end, or will I die from something else entirely? Only time will tell. [update: 2/13/13] Another close call, December 20th, two days after my birthday, causing a LisFranc fracture of the right foot which I am still recovering from the resulting surgery. This seizure was full of firsts; my first stairwell fall, my first broken bone, my first surgery, and my first metal plates implanted into my body.

I remember sitting at my desk and then being in the hospital. My roomate says his dog came and got him just as he was leaving. A few minutes later, and I would have laid there for how long? My Doctor wants to give me a second medication. Last time I tried that it had devastating mental and physical side affects. I can handle the physical, but the mental? Which is worse seizures or stupid? If you think that’s an easy question then you either have never had a seizure or you are not a creative thinker. 28 years of seizures, with no end in sight, and all the doctors can offer me is more drug expriments.

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2 Responses

  1. Joy Stewart
    |

    Good writer JD! Keep them coming! I support you. I had chance to meet you at The adult support group in Philly. You write your story well. I hope to see at next support group.

  2. Lindsay
    |

    Thanks for this story. I felt like I was reading my own. I was diagnosed with JME at 15 and had many similar experiences. I am pretty well controlled at this point in my life but you can never tell with this kind of condition. I have also had a scary experience in the shower where I fell out and ended up with 2nd and 3rd degree burns on my arm. I was curious if you find most of your experiences happen in the morning?