topiramate diaries

sort of a blog of postictal experiences and cogitations

 




 

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The Attack of the Killer Brain

The next morning it happened. I had been traveling with the cat, so there was still the synchronicity between feeding him and taking my meds. I gave him his food, and then took my 25 mg. tablet of Topamax. I poured myself a mug of coffee, and then, just after I put the pot back into the coffee maker, I felt the weirdest thing.

It was like the whole right side of my body was collapsing. But just for the smallest fraction of a second, because I caught myself. In fact, I didnít even drop the coffee. My mother was standing beside me and didnít react at all. But I really felt as though my body was about to fall away into a void.

I sat down at the dining room table and sipped some coffee, pretending to read the newspaper for a few minutes. I thought about what I had just experienced. It seemed as if it might have been an atonic seizure, or the beginning of one. A micro-atonic seizure, if there is such a thing.

I had gone from 100 mg. doses of Topamax to 25 mg. doses, and going down in dosage did increase the risk of seizures. I knew this from reading about Topamax on the web. See how useful the web is? I didnít want to ignore this situation; it might be very serious. I couldnít afford the risk.

So I got up and went into the kitchen. My parents were having some sort of earnest discussion with one another, but I interrupted it. ďI think I might have had another seizure,Ē I said intensely. ďI think I need to call my neurologist.Ē

This was going to be a long day.

Die, Steve, die!

I called the neurology clinic and left a message with a receptionist. Something to the effect that I thought I had had a seizure and needed to talk to the doctor. I was told to expect a call back from the doctorís nurse. All plans for a trip to Target were on hold as I anxiously awaited the return call. I didnít even want to take a shower for fear that I might miss it.

I knew about these atonic seizures. They are the types in which the victims go completely limp and turn into blobs of jello. They are actually the most dangerous kinds of seizures; frequent sufferers have to wear helmets or risk concussion. I was afraid I might have one at any second.

It seemed my motherís town home was designed to severely injure or kill someone having an attack. It has hardwood floors, and a flight of wooden stairs with a nice bend to them. Every room has a table made of glass, metal or marble. Ample shelving is covered with beautiful art objects made of ceramic. Even if I didnít hurt myself having a seizure, I would do thousands of dollars in property damage.

Do what?!

I finally received my call back. The nurse wanted me to increase my Topamax to 150 mg. a dose for two weeks, then up to 200 mg. a dose thereafter. I was reeling. This meant a sextupling of my dosage. I knew what this would mean for me in terms of side effects. I needed to actually talk to the doctor. I hadnít explained myself. He probably thought I had had a full-blown tonic-clonic seizure, like the one that brought me into this whole sorry mess in the first place.

I called back. I wanted to talk to the doctor, but was told he was busy with patients. So I had to leave a message with the nurse. I explained that I thought I had had an atonic seizure. Then more waiting. By then everyone else in the family had figured out what they were going to do that day. It was obvious we werenít making it to the Target.

The nurse called again. It didnít matter what kind of seizure I had had. I needed to take 150 mg. of Topamax at each dosing, for two weeks, then go up to 200 mg. thereafter. I asked if I could talk to the doctor and she said it would have to wait until Monday. The clinic would be closed for the Thanksgiving break. That was all the consultation I was going to get.

I was extremely upset. I talked it over with my mother and older sister. It didnít make the slightest sense to go from 25 mg. to 150 mg. doses of Topamax based on my self-diagnosis after having felt weird for a fraction of second. I should never have called the clinic in the first place. But I didnít want to ignore a strange sensation. I hated that I was trying to make sense of all of this by telephone, on the day before a four-day holiday break.

My sister suggested I go up to 50 mg. I would have done that soon anyway. I would just be doing it a little sooner. So I resolved to do that. Then I went up the stairs of death to take a shower.

Don't cry, Steve

Once in the shower, I broke down and had a good cry. That was what I really needed, not more Topamax. I sobbed and sobbed, ďI just want a normal brain,Ē or something equally pathetic. ďI donít want this stupid brain; I want to send it back,Ē and so forth, until I got it all out of my system.

And I felt much better after that. I think what had happened to me was a near collapse from exhaustion and fatigue. I had been on an unusual sleep schedule because of spending time with my younger sisterís family. I was overwrought with anxiety over the whole recent experience of the seizure and Jeep wreck and its aftermath.

I must have been heard in the shower, because once I got dressed and joined the family my niece had some reassuring words for me. ďDonít cry, Steve,Ē she said. Sheís such a trooper.

Thanks

That night we had enchiladas. My mother makes the best damn enchiladas, and itís a good thing that food was tasting normal again, so I could enjoy the hell out of them. Beer still tasted like ass, but I drank a couple of bottles anyway, because thereís nothing else you drink with enchiladas. Then we had a game of Scrabble, the traditional Barrera gathering activity.

The next day, Thanksgiving, I didnít have any atonic seizures or anything. The dinner was hosted by the older of my sisters. She had just added an extension to her home, where she had installed a beautiful tile floor, and set up the dinner table. She prepared a marvelous feast, with all the traditional fare, including two kinds of bread stuffing, my favorite part of the traditional meal.

Before we ate, we had to say what we were thankful for. I already knew what I was going to say, but I didnít want to be first, so of course I was asked to go first. When I protested, the person to my left went instead, and the thanks proceeded around the table to the left, which ended up making me go last.

Everyone was thankful for friends, and family, and the chance to be together. Some people were thankful for support during tough times or difficult decisions. Then it was on me. ďIím thankful for my seizure,Ē I said. ďFor reminding me of how many people love me, and for giving me the opportunity to learn new things.Ē

Back to normal

The dinner was wonderful. I ate two full plates, plus pie and ice cream. Then there was Scrabble again. My brother and I played some game called Sticks and Stones with my sisterís boyfriendís eight-year old son. We watched the Cowboys game. It was a perfect day.

Friday we talked again about the Target, but it never happened. I figured Iíd just end up wearing the seizure shoes. I was already wearing the sweatshirt I had worn that day. It was one of my favorites, just too nice to give up.

I resolved to start these diaries. I had already started my list of past incidents that might relate to my seizure Ė the fainting spells, and some other near-faints, and when I had had convulsions during a childhood fever. I wrote down the first few paragraphs of this very web site in the same notebook that day.

One of my older sisterís high school friendís, who lived in California, joined us that night. She was visiting her mother for the holiday. She knew the whole family, in fact, and we had a great reunion with her. This was the same person I had the climbing tree discussion with by phone. We had a long talk around my sisterís dinner table.

Saturday my brother left in the morning. I told him to be sure to check on the web to read my saga. ďSob story is more like it,Ē he said. My younger sister and I also left, later in the day. We drove down to her place, to pick up some things I had left there, and then down to mine.

We thought about her staying the night with the baby, but the kid was restless, so she decided to turn back around and return home. That was a lot of driving for her, but with the help of some coffee, she was on her way. In a final frenzy of travel, the family holiday was over. I was alone again.

That night I remembered my second dream since the seizure. A serial killer was on the loose, and a TV station had video footage of his latest murders. He put lampshades on his two victimsí heads, then stood them in a kitchen, leaning against each other.

Suddenly a bullet hole sprouted in one lampshade, blood spreading from all around it, and then the same from the other lampshade. The unfortunates collapsed backwards, and crashed into dishes that were stacked on the counter behind them, as they slumped downwards. I awoke, thinking about how easy it was for my mind to conjure up such sickening imagery. A sure sign of our degraded culture.

Listen to me; I sound like a red zoner.

Full circle, sort of

The Saturday we drove back from the family holiday was actually the day I began these diaries. In the next couple days I bookmarked information on epilepsy and Topamax. I interviewed my mother and sister on what had happened to me in the hospital. I phoned the Raleigh police department trying to contact the officer whose name appeared on the accident report stub in my Jeep.

I knew I should get a second opinion on my treatment. A friend of mine in Florida had a suggestion. Why not research the doctor I was seeing online, and see if there were any reports from other patients of his? Maybe others had told of similar experiences, and that could indicate where to go from here. I still havenít done this yet.

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