Epilepsy In Recovery

I was five years sober and in my early thirties when I started having grand mal seizures out of the blue. I would be sitting at the computer, typing away, and the next thing I knew, I would wake up on the floor—totally disoriented with a bloody tongue and a splitting headache. There was no history of epilepsy in my family nor had I had a recent head injury. What the fuck was going on? Brain tumor? A battery of tests ensued: EEG, CAT scans, MRIs.

“You have hyperactive lesions on your brain,” the neurologist finally told me. “On your frontal lobe.”

“Well, how the hell did I get those?” I asked, horrified.

“Did you do a lot of drugs?” he said.

“Kind of,” l lied.

I’m borderline, bipolar, epileptic and an addict. It would be easy to use any of these secondary illnesses as an excuse to relapse, but what would that help?

Uh oh. I had been a methamphetamine addict for two hard years in my mid-twenties. Not a day or night went by that I wasn’t spun out of my gourd. I smoked it and ate it and snorted it. I once stayed up for 17 days, at which point I was convinced I had the mathematical equation for God and had begun to write a new Bible based on Emerson and Nietzsche. When I landed in rehab at 26, I still looked young for a tweaker and, miraculously, still had all my teeth. I really thought I had escaped meth unscathed. But had I? I began to think back. Once when I was on meth, I had collapsed in a market. I came to in an ambulance.

“Did you do any drugs tonight?” the EMT had asked me.

“Obviously some shitty ones because here I am,” I answered snidely.

Had that been my first seizure? Whatever it was, it had scared me so much that I agreed to go into treatment.

For the next few years after getting the news about the hyperactive lesions on my brain, I continued to have seizures: falling backwards into bathtubs and closets, face-planting onto sidewalks, knocking over expensive lamps and rolling around in shattered glass. I broke teeth. I got stitches. Unlike other epileptics, I had no “aura”—that kind of funny feeling or visual that warns you of an oncoming seizure. I would be walking down the street on the phone one minute and wake up lying on the sidewalk with the paramedics staring down at me the next. It was a nightmare—a frightening nightmare. After a while, though, I began to notice a pattern: I would have a seizure if I didn’t get enough sleep, if I got too emotional or if I had too much caffeine. Having been a coke and meth head, in sobriety I became addicted to Monsters and Rockstars and Red Bulls, quadruple lattes and Diet Cokes. But I had to go cold turkey on all that unless I wanted to live my life wearing a helmet.

I began trying different anti-convulsants. Because I was in recovery, Ativan and Klonopin were out of the question so we tried Lyrica, Tegretol, Topamax, Zonisidamide, Neurontin, Dilantin, Depakote, Lamictal, and Keppra. They either made me fat, slow, stupid, nauseated—or just didn’t work at all. I started to wonder if I was going to need to have a risky brain surgery to freeze the overactive brain cells. One millimeter too far to the right and you’d end up tasting oranges for the rest of your life. What if they cut my funny out? Finally, my neurologist decided to try the oldest anti-convulsant of all: Phenobarbital. Yes, it’s a barbiturate. No, I’ve never abused it. If I took it religiously, I could be seizure free. What a relief! I could drive, I could live my life. Of course, because the paramedics and ER had notified the DMV after one of my more violent seizures and I’d lost my license, I now had to jump through the hoops of getting it back.

I had been seizure free for nine months when I had a grand mal seizure as a result of a new depression medication I was trying. Because anti depressants can lower your seizure threshold, it’s a real balancing act when you’re an epileptic with major depression. You have to find out what works and what doesn’t by trail and error. It’s not, admittedly, the most reassuring system when it’s your life at stake.

When you have epilepsy, you always feel like you’re living on top of a volcano, never sure when it will erupt next. At the ER, the doctors wanted to shoot me full of Ativan—typical seizure protocol. I called my sponsor to get his okay and he said, “Just let the doctors do what they want to do.” So I did. And I’m here to tell you that nothing will wake up your disease like intravenous Ativan. They shot me full of Ativan and I asked for more. They gave it to me and I asked for more. They gave it to me again and I asked for more. This time, they refused. I certainly don’t blame them; by this time, I was singing, putting on make up and calling people from the gurney.

The next week is a blur. I’m guessing I convinced my new gullible psychiatrist to give me a script or two for Ativan and then I gobbled it up with the fervor only a drug addict could have. I’ve heard that I was in meetings, loaded, kicking over chairs, introducing myself as a “fucking princess.” All I remember is that my father finally told me I needed to go somewhere and “cool out”; thinking he meant a spa, I agreed. I awoke in the now defunct psychiatric ward of Cedars Sinai.

A day or two after being released, I was on the phone with my father and woke up in the ER again. Evidently I had had another seizure, falling backwards and cracking my head open on the shiny wood floors. I lost four pints of blood out of my head and came to as they were sewing my head closed. I spent eight days in the hospital with a concussion so severe I was convinced I was going to be retarded. I couldn’t remember anything and repeated myself constantly. The neurologist came in daily to ask me if I could spell “world” backwards or count backwards from 100 by 3’s and I would stutter and stumble and she’d write something in her chart and tell me to rest. An old man who they called the “barber” came to my room and tried to wash and comb all of the dried sticky blood out of my hair. He ended up cutting it out. I also had a small shaved spot on my head where they had stitched my head shut. I was angry and emotional and dizzy for many months. I had what they call a TBI (traumatic brain injury). It took me a full year to recover.

I’ve now been seizure-free for almost four years. My alarm goes off daily at 5:30 p.m. to remind me to take my Phenobarbital. And yet, when I relapsed a few months ago, no rehab would take me because I was on a barbiturate—even though, I calmly explained to them, it was for epilepsy. It is that type of Draconian belief system—the type that does not take neurological disease into account—that’s the scariest thing to me about the world of recovery. Most people have these ideas about certain drugs—a demonization actually—and there is no flexibility. The sponsor I was considering at the time asked me what meds I was on and when I told her, she said, “Well, I used to take pheno to get high.” Was she a neurologist? A psychiatrist? I was asking her to take me through the 12 Steps of Alcoholics Anonymous, not to review my medications and certainly not to make judgments about them.

What I’ve learned over time is that you can stay sober no matter what your outside issues are. I’m borderline, bipolar, epileptic and an addict. It would be easy to use any of these secondary illnesses as an excuse to relapse, but what would that help? I use outside resources for my neurological and psychological illnesses and AA for my alcoholism. And I don’t let anybody fuck with my meds.

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