topiramate diaries

sort of a blog of postictal experiences and cogitations



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Epilepsy and philosophy intersect in the bathtub

In addition to being weary and depressed, I was still aching in my muscles from my clonic convulsions. My gaming buddy's wife recommended a hot bath with Epsom Salt. They only have one car, and he had it at work, so she rousted up a mutual friend and sent her over to take me to the store for a bath supply run.

The friend is an amiable hippie chick, who, as it turns out, has a mother with epilepsy. Her mother has petite mal, or absence seizures. As she describes them, her mother “gets stoned for a while.” Her mother’s boyfriend calls them “darth mal seizures.” That’s a little epilepsy humor there.

We didn’t find Epsom Salt at the Kroger but found something close, and also a nice sponge. I also had to get a can of Scrubbing Bubbles because my bathtub was a scientific experiment gone awry.

When we got back to my apartment, my friend was kind enough to leave me a little of the good stuff. I told her just a tiny bit would do because if the stuff got her to here – I indicated a point with my hand – then it would get me to here – I raised my hand higher. That would be thanks to the Topamax.

Unfortunately for me, I wasn’t close enough friends with the hippie chick for her to have any further role in my bath, so she bid me good night and departed. I cleaned the tub with the Scrubbing Bubbles, which couldn’t quite do the job on my mighty mold colonies. I am quite proud to say that I have the bathtub that defeated the Space Age’s most miraculous cleaning product.

Then it was hot water, bath salts, good stuff – the perfect therapy. I settled into the water, sponged myself, studied the spot of mold shaped like an eagle that sits over the cold water spigot, and contemplated what I was doing. Because obviously it’s stupid for an epileptic to take a bath unsupervised. If a seizure starts, you sink into the water, and it’s adios, muchacho.

But then, once you’ve had a seizure, you really could use a pain-relieving hot bath for those poor, sore muscles. So what’s a solitary epileptic to do? This is where epilepsy intersects with philosophy, as I was discovering it often does. The condition creates dilemmas – it forces you to consider the risks and rewards of life and the meaning underlying the choices you make.

Consider the beauty of a climbing tree. By that I mean a tree which is perfect for climbing, one whose lowest branches are within easy reach of the ground, and all of which bifurcate nicely and are thick and sturdy so that you can easily scale it to its top and poke your head out through its upper foliage to view the scenery around the spot where the tree has been for the sixty or eighty or one hundred years that it has taken for it to grow into the perfect thing that it has become.

I ended up discussing this with a friend in California (I started calling people to tell them what had happened to me,) and she agreed that sometimes there would be trees I would just have to climb, despite the risk of having a seizure and falling out of them. It makes sense – there is just too much joy to be had in climbing a perfect climbing tree. The reward is worth the risk. Falling to your death from a climbing tree is a good way to die, unlike drowning in a bathtub. I cut my bath short.

The cat who cuts through Topamax

It was Thursday, and time for my appointment with Dr. C_____, the follow-up neurologist. Everything was still trippy for me, thanks to the meds, and I still hadn’t had a dream yet (thanks to the meds?) My gaming buddy came to pick me up and I had a funny thing to tell him.

You see, my cat has this really persistent and irritating mewl. He has me conditioned to serve him unquestioningly, as is only proper in the feline-human arrangement. While everything seemed different to me under the influence of my meds – music sounded weird, food tasted funny, conversations with people were warped – the cat’s mewl was exactly the same. So I called him “the cat who cuts through Topamax.”

My buddy dropped me off at the clinic, then went to the coffee shop (the one I was driving from when I had my incident) to await my call for a pick-up ride. My appointment was underway. A few bureaucratic niceties later and I was in the patient room at my appointed hour of 2:00 PM, looking at a large, colorful poster of the human brain.

Then, on to another wall, where there was a display of four famous epileptics. I guess they had especially chosen the epilepsy room for me. There was Lewis Carroll, the pedophile, alongside Alexander of Macedon, the drunken mass murderer. Below them were Pyotr Tchaikovsky, the depressive suicide, and Julius Caesar, who spent his last day surrounded by friends. Hey, I was in good company.

Dr. C_____ was obviously a very busy man, and I had plenty of time to study those two posters. But he joined me eventually, and we were able to ask each other some questions. I still wasn’t sure what had happened to me on November 10, but I thought I had had two seizures (one in the Jeep and one in the ambulance,) so I asked if I had been in a state of status epilepticus. He assured me I had not.

I told the doctor about my bath, asking him if that had been a bad idea. He said it was a one in a million chance, but next time “take a shower.” I told him that I hadn’t had a dream since my seizure, and he said that was impossible, but that instead I hadn’t remembered a dream. He insisted that Topamax did not “affect sleep architecture.”

Dr. C_____ spent most of our time together with his face stuck in my paperwork. He got preoccupied for a bit with that creatine stuff. He was surprised that I was there at all; apparently it was a little too soon after the event for him to be seeing me. He was also shocked that I was on 100 mg. doses of Topamax. He could have sworn he had instructed the nurses at the hospital as to the proper protocol – start off at a lower dose and work my way up in 25 mg. increments weekly.

Well, well, well – no wonder I was such a space case. The doctor was amazed I was functioning as well as I was – he said I should have been suffering much greater cognitive impairment. I reminded him of our conversation in the hospital, when I mentioned that I was a pothead. Perhaps I was simply used to cognitive impairment. Then came a familiar gesture: he put his hand on his face; but I could tell he was grudgingly agreeing.

So the doc told me to go down in my dose level, to 75 mg. or 50 mg., whatever made me comfortable with the side effects, and then work my way up 25 mg. a week until I got to 100 mg. To that end, he gave me a couple of bottles of 25 mg. sample tablets. In a month, he said, I shouldn’t feel like I was on the stuff at all. No more side effects!

I told Dr. C_____ I was really worried about having another seizure, and he patted me on the back reassuringly. Since I had no insurance, he wouldn’t see me again for six months. That was that. I went up to the desk where I was to pay the bill and tossed my credit card onto it. “And what’s your co-pay, Mr. Barrera?” asked the nice lady. “What the hell is a co-pay?” I thought. “Oh, right…” I didn’t respond; the nice lady figured it out.

Whatch you seizin’ bout dubya?

That night was gaming night, and by bizarre coincidence, it was the week I was supposed to take over running the role-playing sessions. We didn’t get much done with me on my meds, but we had a lot of fun. I was feeling better, thinking of how I was going to be going down in dosage, suffering fewer side effects, and eventually no side effects. This stuff wasn’t going to be as bad as I had thought. Plus Thanksgiving was coming up – a chance to enjoy the love and support of my family.

The next day I went down to 75 mg. doses of Topamax, but I still felt too icky. The day after that I decided to drop all the way down to 25 mg. doses, just one of the little white pills in the morning, and one in the evening at the same time as the cat’s second feeding. The next day (Sunday) was when my younger sister would drive down to pick me up for a week with the family, so I had one last chance to party. I invited my friend over for dinner.

She accepted, bringing some dessert. Together we watched my collection of “That’s My Bush” episodes on videotape, while I took care of the household chores I like to have done before a vacation absence, and scraped my pipe clean (pathetic, huh?) I didn’t know this at the time, but it turns out that there are some who think President Bush’s infamous pretzel incident may have been a seizure. Could he be a modern day Joan of Arc?

I told my friend about my experience. I was actually unwilling to wear the same clothes I had worn that day, including the shoes, which I was calling my “seizure shoes.” I also wondered if hadn’t developed a phobia of driving. Not that I was allowed to drive or anything.

He who appeals to the human intellect will knock at the gate of the human brain; he is a speaker. He who appeals to the human emotions will enter into the hearts of men; he is a preacher. But he who penetrates the spirit of his hearers is a prophet, who will abide in their souls forever.
–Hazrat Pir-O-Murshid Inayat Khan

The preacher and the heretic

On Sunday my sister picked me up and brought me to her house. While she drove, I took advantage of my free weekend minutes to call far away people on my cell phone and give them my news. Some I reached and chatted with, others I left messages for. We stopped for food at a Wendy’s and it turned into a ridiculous ordeal because they were short-staffed at the cashier’s station.

My sister had a choir performance at her church so we went there shortly afterward with the baby. We arrived early, since my sister had to be at rehearsal. It ended up being a long, tiring stay where I spent a lot of time sitting doing nothing, except maybe watching the kid. Even at 25 mg. the Topamax was fluttering in my brain.

The performance was very nice. I am lapsed Catholic but my sister is Baptist, and the difference is striking in the style of worship. Catholic is all formal and solemn, with the priest intoning in a dead language and the congregation responding in precise verses (at least that’s true of the old school Hispanic Catholicism I remember.) Baptist is casual and joyful, with modern multimedia accoutrements such as video projection equipment and electronic keyboards playing their all-important roles spreading the good word.

I was quite worn out by the time the concert began at 7:00 PM. I had awoken earlier than usual, been on a long road trip, and babysat a rambunctious toddler. I was vulnerable. I knew my sister was trying to get me into the Jesus thing, and this concert was designed to break through the barriers and enter into the heart. The music was very modern, very Gen-X, and very emotional. The feelings welled up inside me, bringing me to the verge of tears.

I could also tell the performance was boring to the younger crowd. Their faces lit up when they heard there was one last song. Afterwards the pastor came out and spoke. He was very good at generalizations, at speaking broadly. He wanted us all to know the presence of the Lord, perhaps even some of us who had never known it before, some of us who had been through difficult times. He didn’t look at me, but he appealed to me. He cast his net wide, this fisher of men. But he wasn’t going to catch me. He didn’t realize I had already been to heaven. Heh heh heh.

Heaven is a place where nothing ever happens
-Talking Heads, “Heaven”

The extinction of the self

Remember when I was postictal, and was sitting on the hospital bed, confused about who I was and what day it was? That’s funny, because I sure don’t! Seriously, that was a period of time – I’ll never know how long – in which my mind existed but my self did not. How can this be so?

In one theory of life, the universe, and everything – consciousness – awareness itself – is the fundamental ground of all existence. It is the only thing which is real, and everything else – space, time, matter, energy – is mere manifestation within awareness. Consciousness creates the universe by choosing from quantum possibilities and collapsing the wave function as events are observed.

Events are observed by God as All of Us, the Cosmic Creative Source of everything in the universe. This is the Lord that the pastor wanted me to find. But we think it is I who is observing – that is, the ego. The ego is formed as experience is localized within the brain and reflected in the memory of past experience.

What was happening to me there on the bed was that my memory wasn’t functioning, so the normal process that maintains a sense of self had been disrupted. I was in nirvana! It was just like – nothing. Whoop-dee-fucking-doo. It was much better to come back to Earth and start having illusory experiences again.

We really do love our selves. The anxiety that I feel about having another seizure comes from grasping at the ego; I don’t want to lose the self that I hold, or think I hold. It’s not quite rational, since ultimately I will lose that self for good, like we all will, when my brain stops working for good. So what if I lose it a few extra times in my life before the Big One? But it’s only natural to worry about things, and we epileptics have a special thing to worry about.

Anyway, if you want to go to heaven, you only have to do what Kurt Cobain did. Put a shotgun in your mouth, and blow away your backbrain. That’s all there is to it.

Thanks for asking

After the performance, I sort of met some of my sister’s fellow churchgoers. I found out that they had all been praying for me. I was “the brother who almost met his maker.” I don’t think any one actually asked me my name or offered me theirs, however. I was being prayed for but I wasn’t really a person. It was like it was all a game. I was glad to be out of there.

The next couple of days I spent at my sister’s. I found myself in a new routine, involving strange hours. Apparently there is a six in the morning, a favored time for toddlers to rise from slumber. I do enjoy being with my niece, in all fairness to her extremely energetic self.

My sister worked from home, and while she did so I set about researching my condition. Understand now, I hadn’t done any serious web surfing on the subject yet. This diary is written from a future perspective. Now that I was with family, I felt more comfortable with the idea. So I used my sister’s husband’s computer (he did not work from home) to get the scoop.

SUDEP?! Motherfucking SUDEP?!

You know, if I had never learned how to use Google to search on the word “epilepsy,” I would probably be a much happier man. But there’s no turning back; I found and saved the pages: Wikipedia’s entries on seizures and epilepsy, the inevitable Epilepsy Foundation, the National Institutes of Health site. And let’s not forget Mike’s Epilepsy Home Page.

The problem with these sites is that when you read things like “60% of first-time seizure sufferers have another seizure within six months” or “30% of the time anti-seizure medications do not prevent another seizure,” your anxiety levels go through the roof. When you read the sections on epilepsy and safety in the home, every knife, stovetop burner, and porcelain fixture you see turns into a booby trap.

Then you start wondering why the hell no one told you any of this shit when they discharged you from the hospital. They didn’t even give you a brochure titled “So Now You Have Epilepsy” with such helpful tips as “Don’t loiter on the tops of stairs” and “Plastic dishware is your friend.” You begin to feel like you didn’t get much out of those healthcare providers, who you know will be sending you a very large bill.

You read about these scary things like status epilepticus, where you have non-stop seizures. This is a life threatening condition, and if you have it, you’d better get to a hospital pronto. But the real doozy is Sudden Unexplained Death in Epilepsy, or SUDEP if you’d prefer to die horribly from what sounds like some sort of international developmental agency.

Already the knowledge I was gaining was taking its toll on me. My sister’s home has a long flight of stairs, and it was looking very intimidating.

Not another one!

I was continuing to contact friends with my news, introducing my story the way I’ve started this diary, with the phrase “I was driving home, when I woke up in the hospital…” I phoned an old roommate in Georgia and began my spiel, and he said “So you had another seizure, huh?” I assumed he had already heard the news, so I said “Oh, you must have heard already. No, not another one, just the one, a couple weeks ago,” and he said, “no, remember, that time, when you were living with us, you had a seizure, and I called for an ambulance.”

Oh, dear. I did remember. I had assumed I had merely fainted, and had had him cancel the ambulance. As I recalled the event, I had felt light headed and then keeled over, but quickly recovered myself afterwards. There was none of this postictal nonsense. But my old roommate said I was unresponsive, and swore he saw me convulsing a little, which is why he had called for an ambulance.

There were other times when I had fainted under similar circumstances. What circumstances, you may wonder? Well, what causes me to faint, as silly as it may sound, is contemplating terminal disease. When I had fainted (or seized) at my old roommate’s house in Georgia in 1997, I had been reading an online report on someone who was dying of cancer.

I had had another fainting spell in the early 1980s when listening to an NPR report on AIDS, and very recently when watching The Green Mile at my friend’s place, during the scene when the warden tells boss Paul about his wife’s brain tumor. So I had a trigger for fainting spells, and had had three spells, one of which kind of looked like a seizure. I decided to create a record of all the incidents in my life that might in any way relate to my tonic-clonic blowout.

Steering clear of disaster

The Tuesday before Thanksgiving we drove up to my mother’s. That same day my brother flew in from California, so the whole family was together for the holiday. It was the first time since 2002, and I was quite happy about it. There was a new apartness in my family, too, though: that very day, my parents were divorced.

I kid you not; my mother went to court with the older of my sisters that day, as my other sister and I were driving up and my brother was flying in. That evening at my mother’s, as we sat at the dining room table, my father set the divorce papers down in front of me. There, in plain English, the form indicated that two specific people, my mother and my father, were no longer married. The date on the form was November 23, 2004.

We had to come up with a plan for the next day, and I thought we might visit the Super Target that had opened up nearby. I wanted to but a new pair of shoes to replace my seizure shoes. My father seconded the idea, since the store was crammed with toys for the Christmas season, and it would be fun to take the kid toy shopping.

That night I finally remembered a dream, for the first time since my seizure. In the dream, I was in a VW Thing with a married couple I know (not my gaming buddy and his wife.) He was driving, I was riding shotgun, and she was in the back seat. For some reason, we were all standing. This was a couple from Raleigh, but we were cruising around in Blacksburg, Virginia, where I went to college.

We were shooting down Progress Street, towards the intersection with Main Street, going downhill very fast. He wasn’t paying attention, though, instead turning and talking to his wife. I tried to stop the vehicle, but the brakes were unresponsive. So instead I grabbed the steering wheel and turned into the right lane of Main Street. Luckily there was no traffic. Then I woke up.

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