What’s in a name?

I have Epilepsy, and I feel a little weird about it.

You will remember that I had a rough autumn of bad health: headaches and insomnia and tongue-biting in my sleep. I felt like I couldn’t control my stress, and I was on the verge of tears all the time. My doctor thought I might be having nocturnal seizures, but he didn’t know for sure. My EEG was inconclusive, even though I bit my tongue in the middle of it. He gave me a long list of things to do to improve my health, and that was overwhelming and hard. Many of those things were for the migraines, and a few were for the seizures: cut out all caffeine, make sleep your new religion, cut the stress. Plus the old medical standard: wait and see.

I started taking Topamax to treat both problems: the chronic migraines I’ve had since my twenties, and the [maybe] seizures. If I stopped biting my tongue, that would tell us something. Well, I stopped biting my tongue. I started feeling way better. It’s amazing how groovy you can feel when you’re not biting your tongue all the time. About three months into the meds, I had another appointment with my neurologist, and he said that we could assume it was seizures, and I should stay with the meds.

Then as is always the case in the spring, I started having discussions at work about next year’s teaching schedule. Immediately, my stress level was through the roof. My health was better, but barely. Worrying about it getting bad again was going to make it bad. I tried to be honest about my health issues and take things off my own plate, but I struggled to say no because I’m a wimp. I felt like I should have a doctor’s note on file so it would be clear that I wasn’t making this stress/seizure stuff up. It’s hard to explain something that you can’t see. It felt like dumb excuses. I asked my neurologist for a letter that explained my condition. I didn’t know how to convey what it was, anyway. Did it have a name? Was there something more specific than nocturnal seizures? Could he put it down on paper in a way that would make sense so people wouldn’t have to Google what was wrong with me?

He did. It took about a month, but he finally sent me a letter, which said, “Heather has nocturnal seizures caused by Epilepsy.”

What.

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The funny thing is that I wanted the letter so nobody else would have to Google anything about me. But the letter sent me Googling. What the Google Machine told me is that Epilepsy is what they call repeated seizures without a known cause. So: me. I think my neurologist didn’t use the word at first because we didn’t know, and then he was just being more specific, referring to the specific type of seizures.

This is what I tell myself, anyway. Because he just hadn’t used that word at any time before.

But I feel better than I’ve felt in a long time. For at least the last 15-20 years, I had a terrible daily headache, and I woke up every night in the middle of the night with anxiety and insomnia. That’s not happening, anymore. I still get headaches, but they’re rare, and they usually have a specific cause. I’m still sad I’ve had to cut so many things out of my life–don’t get me wrong. I’m pretty much off caffeine, soda is gone, and I haven’t had a drink since October. I don’t take OTC pain meds more than twice a week. But I’m at a point where decaf tastes like real coffee, and the amount of uninterrupted sleep I get has made a notable difference in my energy, anxiety and migraines. The meds help, but I think that all the lifestyle changes were huge. Damn it.

And I’m not having seizures. To my knowledge, I’ve only had two since October. One, about a week after I started on the meds, and another a few weeks ago. Both times, I was up way too late, and I was unusually stressed. That tells me that what I’ve been doing is working. Sure, it stinks to leave our friends’ houses early, or to go upstairs when my whole family is still hanging out, but I’m better.

Not having seizures all the time is great. I can recommend it.

What we call things doesn’t give them any more power than they have on their own. I know this. As Eric says, nothing is different in my body now that I have that letter. And yet: feelings.

My 60 Day Caffeine and OTC Pain-Med “Wash-Out”

I hate my neurologist.

Of course, this isn’t a static emotion. What was first a panicky hate for his long list of changes has grown into an affectionate grumpiness for the smart man I wish hadn’t been right. Damn him.

In September and October of last year, I kept waking up to bite marks in my tongue. Bad ones, ever-worsening. Besides being confusing, they made teaching difficult. One day I woke up from a nap with my face covered in blood from a deep wound in the right side of my tongue. I didn’t wake up when I bit it. I felt like shit: heavy, weird, and confused. Every muscle ached. Fearing I’d had a seizure, I made some doctor’s appointments.

I was worried because there is something in my head. This isn’t a figure of speech. Midway through getting my MFA a few years ago, when my migraines increased, I had what seemed like a cursory MRI before I could be put on Topamax, a daily migraine medicine. During that MRI, the technician slid me out of the tube and asked me a bunch of questions that were too pointed to seem normal. Have you ever had an MRI before? No. Have you ever had any head trauma? No. Are you sure? Yes. Has anyone ever told you that you had any abnormalities in the left side of your head? No. And at that point, the technician told me she needed to push me back in and do the MRI all over again because she couldn’t be sure of what she saw. My Ativan had worn off. I couldn’t reach my ears through the head cage to get the earplugs back in. I lay there and I cried through the booms and clangs, in full panic attack. What was in my head? An arachnoid cyst, just behind my left ear. My general practitioner wasn’t great about helping me understand it. She sent me an email. She said they’d keep an eye out, wait to see if I had any neurological symptoms. And that was that, for a few years. So when I bit my tongue, when I suspected this might be a seizure, I was terrified.

I promise you, this is about coffee, too. I’m getting there.

My tongue-biting episode led me to the neurologist, which is where I should have gone after that first MRI. He asked me if I wanted to see the last few MRIs of my head. He showed me the surrounding, healthy, brain tissue. He told me I was probably born with the cyst because my brain had grown around it. He said that it couldn’t be causing either my migraines, or the episodes I was having now because of both where it’s located and how it hasn’t changed in several years.

See? I told you he’s smart. He’s kind and comforting, too. That made it hard to ignore him when he told me that I needed to give up caffeine and all OTC pain meds for two to three months if I wanted to make my headaches better.

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“How often do you take over-the-counter pain medication?” he asked.

“Oh, I don’t know. Probably four days a week?”

“How much?”

That answer was too high.

“And how many cups of coffee a day?” he gestured to the cup in my hand.

“Oh, this? This is green tea.”

“Green tea has caffeine in it, too.”

“I know. But, uh. Just one cup of coffee a day.” His fingers fluttered across his keyboard.

Diagnosis: rebound headaches. People like me who have chronic migraines can get them from being too used to caffeine and over the counter pain meds.

Prescription: cut out all over the counter pain meds, any use of Imitrex (a migraine medicine I take when I get one), and all caffeine for two to three months. A “wash-out.” After the “wash-out,” I could return to these things, but in an irregular pattern. Caffeine was okay, as long as it wasn’t every day, and I had to do one week a month with zero caffeine. Pain meds no more than twice a week. The hope was that it would lessen my headache frequency.

“It’s going to be hard,” he said. “Your headaches are going to get worse before they get better.” No Tylenol, or Motrin, or Excedrin. Nothing. No coffee, or green tea, or black tea.

Cool.

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He wasn’t wrong. The two weeks I cut caffeine were awful. I weaned myself with decaf (first three quarters caffeinated, then half, then one quarter, etc), then decaf for a few days, then nothing. Water and herbal tea only. It sucked. When I say “it sucked,” I mean that I had headaches and I was tired and I hated everyone and my body ached. And I wanted to murder my neurologist a little bit.

He also cautioned me that in order to stop the seizures, I needed to get at least eight hours of sleep, and I needed to “reduce my stress.”

Sure, Buddy.

This is my sixteenth year of teaching high school, but it feels like my first. We have all new curriculum–entirely new anthologies–as well as new novels at each grade. I teach two grade levels, which means I am teaching something new to me four times a day, every day. Not to mention learning one hundred and fifty personalities and trying to accommodate each soul as it needs to be taught. We also have an entirely new, entirely confounding computer database this year (and in the fall, I was a trainer for our staff), and the combination of new computer system and 180 days of new literature–times two grades–proved to be more than I could fit into my brain. By the second month of school, I wasn’t sleeping. I would wake up at 3:00 AM, worrying, and I’d think, well, that’s an extra hour of work I can get done. I’ll just get up and create a user guide for the computer system. I was borrowing sleep from both ends of the day, falling asleep late and getting up early. Usually I would wake sometime in the middle of the night to go to the bathroom and I’d lay awake trying to make lists of all the things I needed to do.

Sometime last fall, my friend Lizi sent me this podcast from NPR, with scientist Matthew Walker. It inspired me to start harassing my children by telling them that “sleep is the Swiss Army Knife of health.” I believe it, though. The podcast is wonderful, and I can also recommend his book. Cliff Notes version: if you ain’t sleeping, you gonna die, friend. I was putting myself at risk every day. The real science behind how much we need a real chunk of sleep is pretty scary, and my recent brush with nocturnal seizures is proof that I need to stop messing around.

Robbing my sleep was the worst thing I could do. I just didn’t know. I’m a morning person because I like the peace of a quiet house. I like the sunrise and the sound of the coffeemaker. But that means I need to be an early-to-bed person. I like knowing that I’ve given time to the most important task on my list so I won’t have to worry about it for the rest of the day. But I was taking so much time from sleep that my body was shutting down. My neurologist diagnosed me with nocturnal seizures. (Biggest contributing factors: sleep deprivation and stress). Since I left his office in November, I’ve been religious about sleep. I’ve set an alarm to get in bed (not to sleep, but getting in bed about an hour before I want to be asleep makes a huge difference). I try for eight hours, but I usually get about seven and a half. You know what’s happened since I started getting all that sleep? I haven’t been sick once.

Giving up coffee was emotional, in a surprising way. I didn’t realize how it was linked to writing and reading, entirely a part of my routine. I got past the caffeine withdrawal after a few weeks, but I never made it to a point where I didn’t miss the emotional pull. I gave up soda, too, but I couldn’t care less. But at 8.5 half weeks, when a bad day finally sent me over the edge and I gave up on this “wash-out,” it was because I needed a cup of coffee. For my feelings. This process has taught me both that I have a serious lack of vices, and that I am tied more to a daily cup of Joe that I thought. More than once as I tried to muscle through, I thought, maybe it’s just worth it to have headaches, because I really, really love coffee so much.

But of course my doctor was right. After the initial miserable pain, my headaches lessened. I still have them, but more more infrequently. Not being able to take even a Tylenol made me pay attention to headaches before I got them. Before, I’ll admit that I’d just get a headache, and then worry about it later. Now, I’m more likely to try to prevent one before it starts. I’ve found that a lot of my headaches are from bad posture: specifically, sitting badly in bad chairs. I sit to read or type for long periods of time. I need better neck pillows and desk chairs. My tension headaches often turn into migraines (I had three migraines during my “wash-out,” and I couldn’t take anything for them. That was fun.) An added side effect of cutting caffeine was that I slept better.

I found that without coffee, I ate more. I had less of a reason to get out of bed. (Who gets up for tea? Not me.) I realized I drink coffee when I’m bored, rather than eating. I also found that I had to be more honest with myself about how much caffeine I’d been consuming before. Sure, I only drank one cup of coffee when I was home, but if I was out, one “cup” meant a Venti black coffee, and usually a large iced tea somewhere else in the afternoon. Oh, and when I was stressed last fall? I’m sure I was also pounding down the Coke Zeroes. So if I really think about that answer I gave the doc? It wasn’t honest because I wasn’t telling myself the truth. No wonder I had headaches, and no wonder I couldn’t sleep. The other thing this taught me is that most people are completely stupid when it comes to how much caffeine they’re consuming. Decaf is not caffeine-free, dummies. Now I know that herbal tea is just gross water (I never really got on the herbal tea train, although I will say mint tea and chamomile are the least offensive of the herbal teas), and it’s not good, but most people are just downright ignorant about what they consume.

I made it 60 days without coffee or pain meds. I couldn’t do the full three months, but I’m still glad I did it, and I do feel like it had a positive effect on the number of headaches I’m having. For now I’m sticking to decaf for as long as I can, and I’m still not drinking coffee every single day. More importantly, I’m still trying to sleep close to eight hours, and I’m practicing saying no to the constant demands on my time. That’s the hardest part of all of this. It feels like my health is under control, but barely. I need practice.