The paramedics hauled me off to the hospital, the doctors and nurses tried to figure out why, out of the blue, I'd had a seizure. The only thing I could offer was that I had chronic insomnia, and had been up for two days straight. I was also under a lot of stress; earlier in the year, our lower level had been trashed in a flood - for the second time - and I simply didn't want to deal with it. At all. I wanted to pretend it had never happened. Since nothing in my history, except the seizure 16 years before, indicated a predisposition towards seizures, the doctor wanted to keep me overnight. I absolutely did not want to stay in the hospital. After 12 surgeries, hospitals become your least favorite place to visit, let alone stay. Besides, they wouldn't let me smoke there.
I insisted that they let me go outside to have a cigarette, and told Eddie I would call my mother and get her advice on whether I should stay or not. They put me in a wheelchair and Eddie wheeled me out to the van, where I called Mom. Bad move; of course she wanted me to be admitted. I gave in.
It was all taken out of my hands anyway, since as Eddie was wheeling me back into the ER, I had another seizure. A couple of nurses saw it happening, and between the three of them, they made sure I didn't crack my head on the floor. I woke up the next morning on the telemetry ward, with wires coming out of everywhere. (Well, not everywhere, just everywhere above the waist. Apparently they weren't too interested in what was going on below my waist.)
This all set off a quest between my doctor(s) and I; finding the right medicine, finding a medicine I would be compliant with, straddling that fine line between controlling the seizures and turning me into a drug-crazed zombie. Most of all, though, I was looking for any diagnosis other than epilepsy - and whichever doctor would give it to me. Well, almost; I wasn't real happy with the psychiatrist who told me after talking at me for 20 minutes that I was bipolar. Not so much because of the diagnosis, but because he did all the talking. How can you diagnose someone when you don't let them talk?
There was one mildly humorous incident...By December, I was staggering around like a drunk and couldn't talk without slurring my words, thanks to the Depakote and Klonopin that the psychiatrist had put me on. I got a referral to another neurologist (because I was still mad that the first neuro said I had epilepsy). We got into his office, and Eddie did most of the talking (probably because I was incoherent). The neuro peered at me briefly, then ordered me to open my mouth. (I think they must give neuro's flashlights instead of stethoscopes.) He shined his little flashlight in my mouth, sat back and announced, "You talk that way because you had a cleft palate."
I was 38 years old. I'd had years of extensive speech therapy. If I knew anything at all at that moment (which was iffy at that point), I knew that I did not sound that way because of the cleft palate. I tried to kick him, but my coordination was so bad, I missed him. Eddie pulled me back in my chair and politely said thanks, we'll take that under consideration, and hustled me out of there.
Later, after some of the meds had left my system, he joked that we should have jumped up and said "That's it! It's a miracle!" I told him I would have kicked him too.
As you can guess,I resisted the diagnosis for several months. I was not epileptic. At most I had a seizure disorder. I would get tired of taking my meds and go off them, only to have a seizure. When I was on phenobarbital, I took more than the prescribed amount. Why? Well, for one thing, I have chronic insomnia and the pheno would help me sleep. Then again, getting to sleep was not my problem on the Depakote and Klonopin - staying awake was.
December, 1999 passed in a drug induced haze. I finally quit taking all medications (not realizing how dangerous that was) and slowly sobered up. January was okay. February was okay...until the end of the month when I was getting ready to leave for Indianapolis. I had an anxiety attack as Eddie and I packed up the car. That evening I had a seizure. The following week, I went back to my original neurologist who put me back on phenobarbital.
Somewhat chastened, I stopped glaring at my neuro everytime he said "epilepsy" or "epileptic". I still didn't like the diagnosis - and I certainly didn't want to tell anyone. I wasn't about to get one of those damn medic-alert things, I felt I may as well just tattoo a giant "E" on my forehead.
I had two seizures - back to back - in March. The first one was at home, the second was at the hospital. The one in the hospital really pissed me off, because the ER doc wouldn't call my neuro's service and see who was on call, he just wanted to send me home with a prescription for Depakote. I had visions of turning into another stumbling drunkard again, and pitched a fit. (I'm very good at pitching fits, I have all the charm of a 5 year old denied candy in the check-out lane at the grocery store.) He gave my husband the prescription and told me I could go home. The nurse gave me my clothes back and told me where the bathroom was (it's amazing how much you have to pee after they've dumped a liter or so of saline into your veins). She left. Eddie went out to get the car. The next thing I knew, I had a brand new IV, a huge knot on my head and a really painful tongue. This time, the ER doc called my neuro's service My neuro advised him to load me up with 800 mgs of Phenobarbital via IV so my brain would stop misfiring, and to tear up the prescription for Depakote and replace it with one for Phenobarbital. My tongue hurt for nearly a week. As if that weren't bad enough, a dippy nurse tried to start an IV while I was still seizing, and stuck herself. I had to get tested for HIV. I knew it'd be negative, but it was still a pain having to go back to the hospital and get tested.
For some reason, I remember more seizures in 2000 than we have written on the calendar. And each seizure meant that my "safe to drive" date was being pushed farther and farther back.
In June, I asked my neuro to take me off the Phenobarbital. I didn't tell him it was because I was abusing it, I told him it was because some days I reacted to it badly. (Yeah, those days when I took too many.) He prescribed Tegretol, and started weaning me off the phenobarbital. It's a slow, delicate process; I had to keep enough pheno in me to make sure I wouldn't seize, until I had enough Tegretol in me to make sure I wouldn't seize.
I pretty much took care of that in July, though. My sister called me on July 10 to tell me that my soon-to-be-born nephew would be born with a cleft lip, and possibly a cleft palate. I was stunned. My brother had had three sons with no problems, and Kristi's first child had been fine as well. I was stunned at how hard this hit me. Kristi said she wasn't going to tell Mom that night, so I had no one to talk to about my feelings. I tried talking to one of my sisters-in-law, but Barb just focused on how much surgical procedures and techniques have improved in the 39 years since I was born. Dammit, I didn't want to be placated or comforted, I just wanted someone to get it. I finally told Barb, "Yes, surgery has changed, but children haven't, have they?" (Barb's an elementary school teacher.) She was silent for a moment, before saying "No. No, children are still cruel."
When Eddie woke up, I tried talking to him. All that did was make me frustrated and angry. He didn't get it either. He thought I felt guilty, as if I had caused William's clefting. He thought I was too focused on how much teasing William would go through. I gave up.
July 11 was our 13th anniversary. Personally, I didn't think there was too much to celebrate; I'd been unemployed for a year, Eddie's health wasn't improving, I had epilepsy and my nephew would have a cleft.
July 12/13...I don't even know what started it (I was probably too stoned), but Eddie woke me up at 2:30 in the morning trying to track down my phenobarbital. He'd found an empty pill bottle on the table next to "my side" of the love seat, looked at the date and realized it shouldn't have been empty. At first he was more concerned that I'd flushed them - I'd done that before, when I wanted to pretend that I didn't have epilepsy - but then he realized I'd actually taken them. I repeated "I don't know" to all the questions he asked me, mainly because I didn't know shit at that point. He called Walgreens, who told him that I'd just gotten a refill on them a few days before, and was demanding to know where they were. "I don't know," I repeated, although that one I did know. After he slammed the bedroom door shut, I lay there staring at the ceiling. This was it. This was my life. I was 39 years old, I didn't have a job, my husband was handicapped and very dependent on me...it wasn't going to change, except perhaps for the worse.
I opened my journal to a blank page, and wrote - scrawled was more like it - "I don't want to live this life." Then I took my fairly new prescription of phenobarbital - probably 60 mg tablets, roughly 40 of them, and swallowed them. I still don't remember what I did with the bottle. I laid down, crying and just waiting to go to sleep...for good. Then I realized I'd left something off my note, and added, "And I don't want to live with you. I laid down again. I started worrying; what if this wasn't enough to kill me? I didn't want to end up a vegetable. I had what I thought was a stroke of genius; I called Walgreens and asked the pharmcist if the amount of phenobarbital I'd taken was enough to kill me. The pharmacist asked me who I was, where I was calling from - anything that could identify me so she'd know where to send the paramedics. I refused to answer, repeating my question - had I taken enough phenobarbital to kill me?
Eddie heard me on the phone and snatched the it away from me. The pharmacist told him what I'd said, he saw the note, and hung up on her so he could call 911. I think by this time, the paramedics recognized his voice and knew where to come.
I was losing consciousness when the paramedics got there. I came to long enough to try to insist that they take me to Good Shepherd Hospital, convinced that my HMO wouldn't pay if they didn't. After a few minutes arguing, they took me to Sherman Hospital instead. I didn't care, I was unconscious again.
Eddie's convinced I made medical history - or at least became an ER legend at Sherman. I was pretty sure they were going to pump my stomach, and vaguely remembered from past "ER" episodes that this involved snaking a tube down my nose into my stomach. What I didn't expect was that the ER doc wouldn't look up my nose to see if he had a clear path, or if one nostril would be more receptive to the tubing. He just rammed it up my left nostril, the one that is almost completely closed off because of the cleft. I was trying to tell him to use the other nostril, that this hurt like hell - at least I thought I was saying that. I was probably incoherent. As soon as he turned his back on me, I yanked the tube out, yanked the IV out - and yanked out my inflated catheter. The doctors and nurses at Sherman had seen uncontrollable patients yank out NG tubes and IVs before, but none of them had ever seen anyone yank out a catheter. I didn't think it was that big of a deal, all I cared about was getting the hell out of there and going to a different hospital where the doctor would at least take the time to look up my nose before putting tubes down it. Eddie came in as they were trying to re-insert the NG tube, and convinced them that the right nostril was a much better bet. I lost consciousness again.
I came to either Wednesday or Thursday...I think it was Thursday. I was back on telemetry at Good Shepherd, wired up again. I was vaguely aware that someone was always with me, but didn't think too much about it at first. I was mainly thinking how to sneak a cigarette. However, since not only did my companions stay in the room with me, they also hovered outside the bathroom, I didn't get one. And I don't care what anyone tells you, those nicotine patches don't work.
But this story is about epilepsy, not suicide. I can sum it up by saying I'm under a psychiatrist's care (who doesn't think I'm bipolar), and - obviously - completely off the phenobarbital.
Shortly after I got out of the hospital, I went to South Carolina for three weeks to stay with my mom. Kristi was due anytime, and I had decided I really wanted to see William when he was born. 39 years, and I'd never seen a real cleft-baby in person.
I missed his birth, though, I had a seizure instead. It was the second one I'd had down there. Mom and I drove to Charleston the next day to see him, but Mom jumped with every sudden move I made.
Two weeks after I got home from South Carolina, I had another seizure. Now we were into some serious shit; my Tegretol levels were within "therapeutic range" (just as they had been in South Carolina), I was finally being compliant with my meds...and I was having seizures more frequently than ever. I begged some Ativan from my Primary Care doctor, hoping to head off anymore. (I was starting to see a pattern; if I got twitchy or jumpy, I was probably going to have a seizure within a few days.) My neuro didn't want to throw more medicine into my system without knowing more about my seizures; where they were happening in my brain, what kind of seizures, stuff like that. (Meantime I'm thinking No, no, throw more medicine at me. Just make it stop.)
To be continued
©2000 Lisa Stalnaker Hellwig