topiramate diaries

sort of a blog of postictal experiences and cogitations



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I was driving home one day when I woke up on a gurney, inside an ambulance. A friendly-looking fellow was looking down at me through the open rear doors, surrounded by sunlight. He had unkempt hair and wore a white coat. “Grand mal,” he was saying. I could tell he was establishing confirmation with someone. Darkness washed over me.

I awoke again, sitting up in a hospital bed. A nurse was asking me for my name, which was obvious – it was Stephen Barrera. She asked me what the date was – November 10, 2004. She asked me who the President of the United States was – it was George W. Bush, recently elected to great acclaim. Satisfied with these responses, she left the room.

Then that same friendly-looking fellow came in – he was a doctor, I understood. He tossed a piece of paper onto the bed – it had the word “Mom” on it and a phone number, written in pencil. “We’re lucky the insurance company gave us your mother’s cell phone,” he said. “We’ll let you talk to her soon.”

He explained that I had suffered a seizure. I had had massive convulsions and could expect to be sore all over my body. I had crashed my Jeep and was lucky to be alive and unhurt. Fortunately the crash had involved no other people.

I talked with my mother, and also my father and the older of my two sisters, by phone, but I don’t remember anything that was said. I only know these conversations took place from interviewing my sister much later. I lay in the bed hooked to an IV bag for the rest of the day. I don’t think I moved at all.

This body of mine
I gotta get out of this void
This body of mine
Cos I don't wanna be destroyed
This body of mine
And I don't wanna turn android
This body of mine
You've gotta help me avoid that
Here I go
Flying low
I'm gonna miss it
You bet I'll kiss it
-Hawkwind, “Brainstorm”


So what is a seizure? As the word implies, it’s when your brain gets seized, or taken over, by gods or demons, as was thought in ancient times. In modern times we believe that it’s electrical energy, or abnormal patterns of electrical activity in brain cells, that have taken over. Either way, you are no longer in control. The body turns android. When you’re having a grand mal seizure, you shake like a Bender robot jacked into a fluorescent sign. Needless to say, under those circumstances, you should not be driving your Jeep down Wade Avenue in Raleigh, North Carolina.

There are actually all kinds of seizures, which makes sense. Just are there are all kinds of lightning in Earth’s atmosphere, there all kinds of ways electricity can go haywire in your brain, producing all kinds of fun effects. You might have weird sensations, or hallucinate outright, or spontaneously say things and then forget that you did, or lose consciousness for awhile and stare off into space. In addition to the full-body spastic attack I had, you can experience clenching of the muscles – causing weird poses – or relaxing of the muscles – causing complete collapse to the ground – or convulsing – but of only one limb.

But really, the thing I had, the classic “epileptic fit,” is the most common type of seizure, and also the most likely type of first-time seizure in a 38-year old man. But I knew none of this yet, as my hospital stay began that fateful day.

Dr. A_____, I presume

The next day they studied my brain to see if they could figure out why it blew up. The way they studied my brain was first by putting it under a big buzzing machine that resonated its molecules with a magnetic field (I had to keep my head still) and next by putting electrodes near it and measuring the electrical impulses it generated. They couldn’t figure out what could have caused a seizure, which is good, because if they had it might have meant I was going to die soon.

The fact that there was no discernible genesis for my seizure was informed to me by that friendly doctor, who I don’t think ever introduced himself – but his name was presumably the one that was printed on the strap wrapped around my left wrist. He told me I had a big, fluffy brain that pushed against the sides of my skull, which I can only assume is a good thing.

He explained that no one actually saw me have a seizure before or during the crash, but that it was assumed that was what had happened because the EMTs witnessed me having a seizure in the ambulance. Why else would an otherwise apparently normal male drive his vehicle into a pillar? The second seizure was evidence of a first one. That accounted for my brief experience coming to on the gurney – the EMTs had summoned the doctor to give him the news.

Dr. A_____ then said that my condition didn’t affect my morbidity or mortality in any way, and on that cheerful note departed, never to be seen by me again.

Family gathering

Later in the day my mother and sister arrived at the hospital from Virginia. They had talked to me by phone earlier, and since I was in much better shape than the day before, my father decided to continue with a planned trip to New York with his friend. We knew I didn’t have a brain tumor or an alien implant, and there was much relief all around.

That night we watched Saving Private Ryan (it was Veterans Day) and my father called from his friend’s house in Pennsylvania. The younger of my sisters called to wish me well and offer support. I called my friend to tell her what had happened to me, and also my gaming buddy to inform him that I wouldn’t make that night’s role-playing session. I also called the management of my apartment complex and had them feed my cat.

My mother and sister found a hotel nearby and I spent my second night in the hospital. I was getting used to the routine of nurses checking up on me, measuring my vital signs and poking my finger for a small blood sample, or sometimes even sucking a whole tubefull out of me. Every once in a while I would get a pill in a little paper cup. I didn’t know what it was, but I obligingly swallowed it.

I was still in a haze and I wasn’t contemplating what had really happened to me or just how much time I had lost between whenever I had entered my Jeep and whenever I had awoken in the hospital bed.

If you want to know
What’s behind the show
You ride my carousel
And enter life’s jail cell
Love and blood begin to meld
You’ve lost the self that you once held
Merry go round your head -
Awake, asleep, alive or dead.
-Mr. Bungle, “Carousel”

Steve, we hardly knew ye

Because, you know, I was gone for a long while there. What I later found out is that I had been in what is known as a postictal state, which just means a post-seizure state. To the medical professional this is a period of tiredness and confusion, difficulty speaking, lack of short term memory, and general cognitive impairment. To the seizure victim, this is a period of – well, it isn’t really a period of anything at all.

You see, what I assume now, many days after the event, is that the nurse I first saw when I awoke sitting up in the hospital bed had been asking me my name, and the date, and who the President was, over and over again – waiting for me to finally get the answers right before she fetched the doctor. And the moment when I got the answers right was the moment when Steve Barrera returned to Earth. Up until then there was a thing alive on the bed, but it was still that body turned android, not me – I was destroyed.

That brain must have still been frazzled or something, and me, the little old self, had been whipped around the merry go round to the other side. But I’ll have to get back to this later, because it’s not time for philosophy quite yet.

My new friend

The next day I met Dr. B_____, a nephrologist, who was concerned about my creatine levels. He was the doctor who would eventually discharge me, but not until the next day. He had a sonogram performed to check out my insides, and told me the sad news that I was going to have to spend Friday night in a hospital bed watching television. There was no way he was going to let me out while I had as much creatine in my bloodstream as someone who had swum the English Channel back and forth seventeen times (I may be exaggerating.)

So the blood lab people were visiting me again, trying to find fresh spots to stick their needles in me and extract tubefulls of my precious life fluid. It’s hard to find veins in my arms, so this was starting to become bothersome. Also, when the nurse came along with the paper cup, the capsule pill had been replaced by a yellow tablet. There was more to this little fellow than met the eye.

Later that afternoon I got out of the bed for the first time. Whenever they had performed one of the tests on me, someone had come up to the room, grabbed the bed, and wheeled it off to the appropriate wing of the facility, where it fit into or beside whatever gizmo they hooked me up to. But I just had to take a crap; there was no stopping me. I yanked the electrodes from the monitor off of my chest, and swung around on the bed to stand on the floor.

Then I discovered that Dr. A_____ had not been kidding – I was sore all over, especially those big thigh muscles. When I had that seizure, it was like an involuntary workout where I wasn’t quitting no matter how fatigued my muscles got (remember, I wasn’t even there to give up if I wanted.) My mother says she could tell how much pain I was in when she saw me stand that moment. But I made it to the bathroom, dragging the IV with me, and unloaded a nice healthy one. At least part of me was working.

My mother and my sister and I all ordered hospital food for dinner and watched the WB Friday night sitcoms together. I challenge you to come up with a lamer way to spend an evening.

The first bottle’s on us

Saturday morning I met Dr. C_____, who was to be my follow-up neurologist. Like Dr. A_____, he had unkempt hair. Apparently neurologists are too busy pondering the mysteries of the human brain to bother with combing their hair. You have to admit the human brain is pretty mysterious.

Dr. C_____ wanted to know if I had ever had a seizure before, or if I had any other medical condition, but all I could think to mention was that I was a pothead. When I said this, he put his hand on his face and shook his head. He seemed to have the same low opinion of pot that he had of combs. I got the idea this guy was one of those “red zoners.”

That was all Dr. C_____ and I had to say to each other, so he left. Then some nice ladies came along with financial aid forms, which were supposed to help me since I didn’t have any insurance. They seemed smugly concerned by the implications of this. I gathered they were “blue zoners.”

I also received a month’s supply of the yellow tablets they had started giving me, which was a drug called Topamax. “The first bottle’s on us,” I was told, “Which is good for you, since you don’t have any insurance.” I couldn’t tell if this was a red zone or a blue zone comment. I was beginning to realize that a seizure might be something very expensive.

The funny thing is, I fancy myself sort of an expert on this red zone-blue zone stuff, and on the day of my seizure was on my way home to post a blog entry on the subject matter.


Later that day we were joined by my younger sister, her husband and my darling three year old niece. The little girl was unusually shy, probably because we were in a hospital. Who likes being in a hospital? It didn’t matter: the doctor signed the discharge form and someone made sure I knew my special instructions (“Topamax 100 mg. twice daily.”) I extracted my clothes from the big plastic bag where they had resided for three days, then donned them, and off we headed for the elevators. Every finger tip, the crooks of both my arms, and both of my wrists were covered in little round scabs, but I was finally free!

We headed off in a vehicle convoy. The first stop was the wrecker service where my Jeep was. I kept the business card for the company in my wallet, and someone had kindly written “YOUR CAR IS HERE” on it. It wasn’t in that bad shape! I had obviously smacked it into something on the driver’s side front; part of the bumper had been sheared off, and the panel mashed up a bit, but the wheel and tire were fine. My brother-in-law drove it back to my apartment, and thought there might be axle damage.

Everything was nice and tidy back at my place, but boy was my cat pissed! He hates being left alone, and let me know it by screaming at me a whole bunch. I fed him and comforted him, but couldn’t give him much time because we were soon off to my favorite Mexican restaurant for my first real meal in days. My niece made my day with a delightful comment: “Steve crashed his car, he’s a silly boy!” Ah, the perfect schadenfreude of a three year old.

Afterwards, my younger sister and her family headed back home. On a toddler’s busy schedule, they had the least free time, and since they live close by, they were able to make a day trip of visiting me. My mother and older sister were still hanging, willing to stay the weekend, and I wanted companionship after my ordeal (also, I was forbidden to drive, so needed help with errands.)

That night we bought me a six-pack of Yuengling and watched my favorite movie, The Big Lebowski. I discovered how my meds interact with alcohol. Like a sledgehammer! I think about one and half bottles through I felt like I was in a tunnel, and that was all I could drink, which is just as well because somehow we had gotten a bad batch. The beer just tasted wrong. But this was definitely the way to watch the greatest movie ever made (well, almost.)


Topamax is Ortho-McNeil’s brand name for topiramate, a monosaccharide with the chemical designation 2,3:4,5-Di-O-isopropylidene-ß-D-fructopyranose sulfamate. I have no idea what that means, but my brain sure does when it absorbs this miracle drug and my reality transforms.

See, when I was hospitalized, I was in a zone, feeling ragged and not really caring. But now that I was back in my familiar world, I was beginning to understand what 100 mg. twice daily was going to be doing to me. This stuff was fucking me up!

First off, I couldn’t put the dishes in my dishwasher away. I didn’t recognize them. This, I found out later, is called jamais vu. The contrary of déjà vu, it’s when the familiar seems strangely unfamiliar. It is strange, indeed. I would have the same problem with my computer files and folders. Luckily, this effect wore off quickly.

Also, everything tasted wrong. This is because topiramate targets the temporal lobes, where smell and taste are processed. Carbonated drinks especially taste horrid. I know now that every beer and soda I drink while I am on Topamax will taste like Fat Bastard’s stool sample. I was mistaken when I thought we had bought a bad batch of Yuengling. They’re all bad batches from here on out.

And then there’s the perceptual distortions, the little flashes in the peripheral vision, the fatigue all day long, the aphasia, the general feeling of being in a stupor and, well, I’ll get back to all this in a bit.


On Sunday at noon my mother left for Virginia. Next my sister and I took the cat to the vet. I had been delaying this duty for some time, but figured that after racking up God knows how many thousands of dollars in uninsured medical costs for myself, I’d might as well treat the poor feline to a couple hundred bucks worth of rabies vaccine and blood tests. Then we got some groceries, and I invited my gaming buddy and his wife over for dinner.

I told my buddy about how I was on my way home to blog about the election and the culture wars, when I had my seizure, and he said I should take it as a sign. I figure I had had a brilliant insight into the nation’s electoral troubles, that I had solved the alchemy of the red and the blue and found the perfect purple solution, when suddenly – brrrr-zzzzzaaaappp! You'll never be able to prove otherwise.

With Mom gone it was time to break out the stash box, and find out how my meds interacted with the good stuff. Like a sledgehammer wrapped in terry cloth! We watched The Simpsons season premiere, which wasn’t that funny, but man, the good stuff…

Oh, and by that next morning, I realized that I hadn’t remembered a dream since my brain blew out.

Don't ask

Monday was the last day of errand assistance for me, since my sister did have a life of her own and had to return to it. She took me on a mega-grocery run, and we did all my laundry. Late in the afternoon she departed.

Now I was back to my normal life, except that it was a life on Topamax, a life touched by a seizure, the life of a person with epilepsy. So what did that mean? How could I find out? That was easy: I would use the Internet.

What I found at first was that I couldn’t face the music. I would find a web page, read a couple of paragraphs, start feeling anxious, and then close the window. I just didn’t want to know about epilepsy after all.

But I must have learned a little bit, because I know I had some information in my head when I went to see the doctor the following Thursday.

The Sacred Disease

Epilepsy was known in ancient times as the sacred disease, because it was believed that those suffering from a seizure were possessed by the gods, and that their bizarre behavior was divinely inspired.

Many famous persons in history have been epileptics, including the three greatest military leaders ever: Alexander the Great, Julius Caesar, and Napoleon Bonaparte. Epilepsy is often associated with creative genius, and many great artists were epileptics, such as van Gogh, Dostoyevsky, Tchaikovsky, Lewis Carroll, and, some believe, the greatest genius of all time, William Shakespeare. By the way, I have not been diagnosed with megalomania.

Epilepsy is best defined in one sentence as “a brain disorder in which the neurons signal abnormally and then everything goes to hell for a few minutes.” It is not inappropriate to describe the abnormal neuronal activity as a brainstorm, although the term seizure is usually used.

A seizure can be partial or generalized, depending on whether it is focused in part of the brain or involves the entire cortex. It can be simple or complex, depending on whether or not it interrupts consciousness. A seizure can alter sensations, perceptions, emotions, or behavior. Some complex generalized seizures manifest as absences of consciousness for a brief period of time – what used to be called petite mal seizures.

A seizure can lead to involuntary muscle movements in various forms:

  A tonic seizure is one in which the muscles stiffen up. The person strikes weird poses.
  An atonic seizure is one in which the muscles go completely limp. The person becomes a lump on the ground.
  A tonic-clonic seizure is one in which the person first stiffens, usually letting out a cry, and falls over (this is the tonic part.) Next, the person convulses violently for awhile (this is the clonic part.) These are what used to be called grand mal seizures.
  A myoclonic seizure is one in which one or more of the person limb’s spazzes out. Whenever you’re about to fall asleep, and then your leg or arm twitches and you jerk awake, you have a mini version of one of these.

Sometimes epileptics have warnings of their seizures – these warnings are known as auras. This can come in the form of an unusual smell or taste, dizziness or light-headedness, or a rising or falling sensation in the pit of the stomach. Others aren’t so lucky – their brains go bonkers just like that. Or maybe they’re the lucky ones; you figure it out.

See, I told you I had some information in my head.

Ironically, I have no trouble saying “aphasia”

Getting back to a normal routine was not going to be an easy matter. One obvious problem was the medication I was on – this stuff just made me loopy. I was supposed to take it twice daily, and the logical times to do so were the two times a day when I fed the cat. That way I wouldn’t forget, because the cat wouldn’t let me.

So I started my day by brewing coffee, plopping some cat food in the cat’s dish, and then swallowing a yellow tablet of Topamax with a full glass of water. I would sit down at the computer to check my email, and then begin my modest work day (I work from home, so the whole not driving thing wasn’t an issue.) Not long afterwards I would start tripping.

No, I’m not talking about an acid trip, but there were definitely some psychoactive effects going down. Objects didn’t seem to be the right size, or were limned with light. Music sounded really weird – one line of a verse would go by too quickly, and then the next one too slowly, and so the whole song would seem to stutter. I also noticed this time distortion when I watched water drain – it would rush towards the drain for a few seconds, then slow down and sort of trickle towards it.

I could swear I was sometimes seeing a glimpse of some little guy out of the corner of my eye, like I might actually see a pink alien if I took two of the pills instead of one. If I took three pills, I would know what planet he was from, and if I took four pills, what his mission was. At five pills, he would take me back with him, and at six pills – well, if I tell you what happens, my alien overlords will have to proceed with the plan ahead of schedule.

I was still getting a little bit of the jamais vu at this point, discovering my computer file system’s organization. Coffee tasted awful (but I still drank it, because I was a caffeine addict) and food still tasted funny. My sense of smell would be enhanced sometimes, and I would be acutely aware of the plants, or the cat litter, or the dirty dishes.

The worst part was feeling like an all around dumbass. I could speak OK, but thought I might have a bit of what they call aphasia, or difficulty finding the right word for something. It was hard to concentrate, and even the simplest arithmetic and HTML coding was about impossible. This was very depressing. I had to call my client and explain to him my situation and that I was not going to be getting any work done for awhile. Of course, he was sympathetic. The work could wait.

In general, I felt worn out from the moment the Topamax kicked in until the end of the day. It was kind of like having a cold. I know this all sounds whiny, but if you’ve ever been on meds with strong side effects, you know just what I’m talking about.

Q: Is suicide truly painless?
A: No one has complained yet.
-From the FAQ

Return to sender

When you realize how much Topamax sucks you decide to do some research online, and then you finally understand the bind that you’re in. See, you’re constantly worrying about having a seizure. You just can’t get over the thought, after having had the experience once. But the medication you’re on to prevent that from happening makes you as dumb as a doorknob.

So you have a choice between having a brain that periodically blows up, or being the village idiot. Suddenly, suicide looks like a refreshing option. I mean, I’ve talked about killing myself before, when I’ve been in dire financial situations or heartbroken, but I know I was just being a little pussy bitch crying for attention. This time it made sense – it is actually worth considering returning an epileptic brain to sender.

Who would want to live with this bullshit of going tonic-clonic out of nowhere? It’s no wonder epilepsy carries the fourth leading risk for death by suicide. It’s no wonder all the epilepsy support sites mention the famous epileptics – they’re trying so hard to console you about the absolutely shitty state you’re in. Well guess what: all those people were famous because they were fucking freaks! Oh, and try not to notice that so many of them were miserable and died young.

But really, I'm just being a drama queen.

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This is all copyright Steve Barrera 2004-2014. All rights reserved.