topiramate diaries

sort of a blog of postictal experiences and cogitations



latest post

A is for ass-clown

A couple of days after I left the message, the witness called me back! He was glad to hear from me, and told me what had happened.

He saw me cross into the oncoming lanes and hit the wall, and pulled over to assist. He actually saw me foaming at the mouth and shaking, and knew exactly what was going on because his father had suffered seizures. He called for medics, and by the time they arrived I was conscious again (but obviously in that postictal state because I remember nothing, I tell you, nothing!)

The entire accident report is based on this manís account, bless him. He asked both the cops and medics to let him know what happened to me, but didnít hear from either one. He was very grateful for my call.

The doctorís report that no one had seen me have a seizure and that I had hit a pillar was obviously way off. Unless I completely fabricated that memory, the doctor must have had the wrong patient, which is what my cynical friend in Florida agrees is the likely case. Whatís ironic is that his bill came the same day as the witnessís phone call Ė and it was for $750.00! What an ass-clown!


That was the same day I got a call from the billing office of the ambulance company, asking me about insurance information. I thought it was ironic that the first people to respond to my situation were the last to ask for money. By then, I had already been billed by the hospital, labs and physicians, to the tune of over $10,000 Ė basically just to be warehoused and told I had had a seizure, information the witness to my crash provided for free!

Anyway, since I had the nice lady on the phone, I asked her about how I could find out what the ambulance folks could tell me about what they remembered. She told me I could call a certain number to get my report. So I called that number, and another nice lady said I had to sign a release form she would send me in the mail. That form arrived a couple of days later, and I signed it and sent it on its way.

Steve 1, Death 0

I sent the form out on a Friday, and it was returned to me on the following Wednesday, along with a bill stapled to the front and the medicsí report stapled to the back. From the report I learned that I was found restrained in my Jeep. I was diaphoretic (sweaty) and disoriented, and unaware of my surrounding, person or place. I was pale/ashen in color. I appeared to have had a seizure (hey!)

I became more alert as time went on, and was able to answer questions, but never could tell what day or date it was. I guess thatís a question they keep asking you while they drive you to the hospital in an ambulance. Nothing else was noted. All of my vitals are indicated as normal or regular or clear, which means I must be a basically healthy guy. Well hooray for me!

As I see it, I did good. I went tonic-clonic behind the wheel, crossed three lanes of oncoming traffic, hit a wall, and lived to tell the tale. So far Iíve cheated death once, and itís all recorded for posterity. Now if I can just figure out how to pay the billÖ

That Topamax feeling

I must admit the doctor was right: I pretty much donít notice Iím on the Topamax any more. I certainly donít feel worn out. I can stay up late, and get my full dayís work done. I maybe get just a little bit of that taste in my throat, a little bit of a knot in the back of my head, or tongue-numbness, or a trippy or speedy feeling. But itís all good.

Full circle

Well, here it is, December 21, 2004. Iím writing the same day Iím posting, so these diaries have finally come full circle. Iím feeling fine, though itís still too early to say what my prognosis is. I definitely donít have any phobias Ė I can wear my seizure shoes, and every time I look at my Jeep Iím reminded of how much I love driving the thing Ė though, of course, I havenít yet.

I even wrote that piece on the red and the blue zones I mentioned before. I may not have the perfect purple alchemical admixture, but itís an analysis, anyway.


I saw Dr. C_____ again in June and got a prognosis. I'm allowed to drive, though I am still considered at risk for having a seizure, so I should consider that and limit myself with that in mind. I will need to stay on the Topiramate for another year and a half, and then can come off the stuff, which will be sweet!


Well, it's been over a year now and no second seizure. What a huge relief! I'm taking the Topamax religously, and driving regularly as I now have a nine-to-five job. I've even moved since this diary was begun. Another Thanksgiving has gone by, this time spent in the new house with roommates, instead of with the family. I still haven't fixed the damage to the Jeep (shame on me!) but hey, I'm also still paying off the debts from the hospital stay. I've discovered that debt collectors can be arbitrarily persistent at times and negligent at others - they'll bug you repeatedly like you know is just their job to do, and then suddenly you never hear from them again even though you still owe. Works for me. And, of course, because of the "previous conditions" restrictions my new insurance won't pay for my meds. Argh!


I might have mentioned that my cat died, the one with the persistent mewl. He was very old so it was not untimely. He died on April 1, the day before Pope John Paul II. They're up in Heaven now, doing nothing.

I don't like those odds

It's the second anniversary of the seizure event, and I'm writing the day after a visit to Dr. C____'s office. It turns out, from reviewing his notes, that EMT's did witness me having a seizure when I was in the emergency room, and since the gentleman who pulled over to help me after my crash witnessed a seizure - I definitely had two of them. Which means I owe Dr. A_____ an apology for calling him an ass-clown in my earlier post, and also means I have epilepsy - since I had more than one seizure.

Dr. C____ and I discussed my medication, and he told there was a 33% chance of having another seizure if I come off the Topamax now, after only two years. Since I don't like those odds, I decided to keep taking the stuff - for another three years. Yuck.

At least I finally got my Jeep patched up.

That's it

Last June I suffered a kidney stone. That was a new dimension in pain to experience; it kept me up all night and sent me to the hospital since I had no idea what was wrong with me. The urologist I eventually saw determined that I had low citrate levels in my blood and has me drinking lemon juice to compensate.

But when I went to see Dr. C____ for my annual follow-up and told him about the kidney stone, he said it was probably caused by the Topamax. He even consulted with the urologist, who said that the type of stone I had could indeed have been formed by the type of compound that Topamax is.

So I'm going off the Topamax and switching to a new anti-convulsant called Keppra. Which I suppose means the end of these diaries, unless something crazy happens to me on my new meds, in which case I'll be sure to post about it here.

That's really it

I had my five year follow-up with Dr. C____ in November of 2009. My chance of having another seizure is now down to 25%. I decided I would take those odds if I could go off the meds entirely. I haven't had any kidney stones since, either.

No, really

It's not over 'til it's over, I suppose. On the 14th of this month I was hanging out with friends, was very high, and the topic of shingles came up. Since I had chicken pox as a child, I am highly likely to develop shingles, and as I thought about this a familiar feeling of anxiety and light-headedness came over me. Next thing I knew I was on the floor, regaining consciousness as my worried friends hovered over me.

My immediate thought was that I had had another seizure, and I wanted to contact my neurologist to let him know. But we couldn't find the card I thought I had with the number for the neurotlogist, which is just as well. My friends had called for EMS and when they arrived, between the observations of my friends and the repsonders, it was apparent that I had only fainted. I went to the ER and my diagnosis was syncope - a fainting spell - along with substance abuse.

So it appears I really do have a trigger for panic attacks which lead to a faint. One of the paramedics suggested that I practice meditation to help cope with onsets of anxiety. She also thought that I must have had "some really good pot". And I'm wondering if my particular trigger might be connected to how I died in a previous life.

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