I have never talked about this with anyone other than my family, my wife, and of course the doctors who treated me. Since I am now “fully” recovered (no seizures in over 4 years — but you never know) I considered this episode of my life “over”.
But maybe talking about it helps raise awareness or maybe someone with severe epilepsy finds this and can find some comfort in this and feel invited to talk about their own (in many cases much more severe) epilepsy too. Please, be my guest.
Since I was 13, I had weird spasms. Only in the early morning, right after waking up. And I started smoking around the same time, which got my bodyweight down to about 55 kilograms (about 121 lbs). At a height of 181 cm (5'11″), that was underweight.
So when I had these short spasms in the morning, I thought it’s just my blood pressure being too low, my head being deprived of oxygen for a nanosecond or so. I’d lose control over my arms and legs. Only for a split second. That’s short enough for me to notice but long enough to lose my balance and grip.
If I had something like a glass of water in my hand, this would result in me either dropping the glass or spilling its content over myself or my surroundings. It was like a short electro-shock of some sort.
Of course, my parents noticed it, but I always played it down like it is nothing, as I felt ashamed at my inability to control my own body.
Once I made my way down our stairs (which directly faced our front door, a double glass door with a bronze decoration frame in the middle) and on one of the last two steps, I had another shock going through my body, leading to me missing the step. As it was short, I tried to grab the handle to my right, but I was already in motion and would fly right into the glass door, breaking it. I didn’t get injured, but my parents heard the glass shatter and came looking what happened.
My dad asked me if I had one of “my moments” again, and since lying here would only get me into worse excuses, I said yes.
Now they took me to a local children’s hospital to get me checked. The nurses there ran a few tests on me but we were told that nothing is out of the ordinary, I’m a healthy teenager.
These spasms in the morning, however, persisted. In hindsight, the hospital should have kept me there overnight to monitor my brainwaves in the morning and during sleep.
Since the hospital told us that everything is good, my belief in smoking causing oxygen deprivation in the early mornings grew stronger. For the next 11 years, these occasional spasms in the morning would continue. But again, only in the early morning, right after waking up, for about 15 minutes or so. At the same time, I would feel tired, exhausted, like a truck ran me over. But I did not have any epileptic seizures. Or at least, neither I nor close relatives are aware of those.
My true epilepsy started to shine through when I was 24. I was a truck driver (which might sound super bad now, a guy, driving a 40 ton truck in the middle of the city, being at risk of an epileptic seizure) and at the age of 24 my life steered me into a totally different direction. I met a girl in Japan over the internet. We started chatting and Skyping for months on end. I went to meet her for 2 weeks. When I came back to Germany, I made the decision that I want to spend the rest of my life with her. I proposed to her and she said yes. So I prepared to plan my final departure. At the time, I was working night shifts as a truck driver. So I’d wake up at around 11 pm, get ready and go to work. I’d come home at around 9 am. Then, instead of going to bed, I’d Skype with my Japanese girlfriend for hours (time zone difference Germany — Japan around 7 hours). I moved back in with my parents to get out of my own apartment rental contract. I’d sleep on their couch in the living room, having a Laptop setup with Skype to run nearly 24/7.
One day, I think I had a day off that day, my dad looked at me as I opened my eyes.
“What the hell was that?” he asked me, with a serious look on his face. I felt tired and exhausted and my whole body felt like a wet sack of rice. I just told him to please let me get up in peace. I’m barely awake.
I noticed a taste of iron in my mouth. Upon inspecting it, I noticed that I bit my tongue. “Stupid me,” I thought. It hurt like hell for days and made eating a chore.
A few days or maybe weeks later, I awoke to a nightmarish experience. Usually, I’d wake up to look at the laptop in front of me, where my Japanese girlfriend would either be still at work or waiting for me to wake up. Well, she was there. But she didn’t look happy. Behind the laptop, from the other side of the room, my dad was looking at me like he saw a ghost. He just stood there, staring at me.
Some people to my left were talking. I made out two strangers in orange jackets and pants, one had his back turned to me, going through a suitcase. The other sat down next to me, grabbed my arm, and injected something into it. I looked at him in shock. I was afraid. What the hell is happening? I wake up to strangers rummaging through our living room?!
The guy looked at me. “Do you know where you are? Can you tell me what day it is?”
“Of course I do. I’m at home. What the hell are you guys doing here?”
“Your parents called us. They said you had a seizure.”
“We don’t know, we’ll take you to the hospital and run some checks, if that’s okay.”
My fiancee was equally disturbed. She must have witnessed my seizure too. The guy tried to tell her in English what’s going on and that they’ll take me to the hospital for some checks.
I just felt angry. I know they are here to help. But I’m in the middle of preparing to leave for Japan. I don’t want some stupid illness to keep me here!
I ended up in the hospital for about 4 days. They made several checks, having me run through an EEG, Intermittent photic stimulation (IPS) like constantly flashing you with high power LEDs, checking if your epilepsy is triggered with flashing light and such. The IPS didn’t trigger anything. But they got a diagnosis through the EEG results.
Diagnosis: Grand-Mal epilepsy
In short, this means my whole brain goes haywire for no damn reason. And when I tell you about how it happens, you’ll share my gratitude for being unconscious while it happens. It sounds horrible.
The seizure starts with the patient tensing his muscles rigidly, either pulling his arms and legs close or stretching them out. Some roll their eyes upwards. They lock the jaw open and release a loud cry or moan as they force all air out of their lungs.
Then they come into a clonic phase, in which the muscles relax. After that, they start convulsing rapidly, as if being electrified. That goes on for several minutes. It should usually last no longer than 5 minutes, else one has to assume a status epilepticus.
Lastly, the seizure stops and the patient falls into a deep sleep, often called terminal sleep. They often snore and appear to just sleep like normal.
For me, these seizures only ever happened in the morning, before I’d wake up normally. So I don’t know how much time passed between the seizure and my waking up. All I knew was that my whole body felt exhausted, as if after a heavy workout. Sometimes I’d have blood on my pillow, which I must have drooled during the seizure.
This also means that I likely have bitten the side of my tongue. It hurts, it looks bloody and again, eating would be painful for the next several days.
As I mentioned earlier, I was kept in the hospital for 4 days. After most of the testing was done and they told me about the grand mal diagnosis, I felt increasingly uncomfortable. The treating doctor hasn’t once come to me during that time. I only ever saw nurses. Not that I don’t appreciate nurses, but I felt left alone in terms of what was really going on. So after those 4 days, I decided to leave on my own. I took my stuff, went to the reception, waited for my documents and left after I got the diagnosis papers.
I then went to a local specialist for epilepsy and got prescribed Keppra. If you click on the Link, you’ll learn that Keppra is a trading name for a medication called Levetiracetam. I did not know that at the time. You’ll shortly know why that is important.
It continued in Japan
I managed to get to Japan, taking my Keppra every morning. I think it was a dosage of either 600 or 800 mg. But I couldn’t honestly tell anymore.
Here, I still had seizures. After the initial one back in Germany, it got quite regular. Despite the medication. It was severe enough for my fiancee to call an ambulance one night.
I only remember that night in surreal bursts or episodes. I open my eyes, paramedics in our room. I fall asleep again. I open my eyes again. They are pushing me in a wheelchair towards the ambulance. I faint again. Next time, I hear sirens. We’re inside the ambulance. My fiancee sits next to me, looking at me. I faint again. Next, I remember sitting in a wheelchair in an elevator, doctors, nurses and my fiancee are with me. I don’t remember getting out of the elevator. Next, I think I awoke in a bed. But I had no sense of time.
I again ran through checks. This time, I couldn’t leave. My fiancee wouldn’t let me. But she was with me, so it was okay. What got me infuriated in Germany was that I couldn’t see her. That was no issue now.
After they had me checked top to bottom, they verified the diagnosis I got in Germany. It’s grand mal epilepsy. They adjusted my dosage and let me go after I think a week or two.
I still had occasional seizures. Always in the early morning or night. My wife would wake up due to me making that weird horror movie moan or scream. Then she’d monitor me closely, watch the horror as it happened and wait for it to stop. When I wake up, she’d tell me “it happened again”.
I know it’s not my fault. I know it’s out of my control. But it just felt so devastating. Again. Again. Again. She’d give me that sad and shocked look. Asking me if I was okay. Yes. Maybe I bit my tongue. Maybe it’ll hurt for a few days. But other than that, I’m fine. She’s the one having to watch that nightmarish craziness again and again.
I felt sorry for her and for myself. I just wished it would stop.
We went to the hospital so many times. Each month. Checking blood. Talking to the doc. Checking my hormones and whatnot. Getting new pills for me. Making sure I won’t forget to take them.
Meanwhile, I developed anxiety. Sometimes my fiancee was invited to go to dinner with her coworkers. Long story short, I developed jealousy, fearing she would cheat on me and stuff. At first, I thought it was me. We even had some serious fights over it. Then I wondered whether it may be Keppra, as it says anxiety and depression are common side effects.
I went to the doc and told him about it. He gave me a disbelieving look, but I insisted that the Keppra is giving me anxiety and that I’d like to change the meds. He gave me something different this time. It was written in Japanese Katakana. レベチラセタム (Levetiracetam).
See? He tricked me. It’s the exact same med with another name. But it worked. My anxiety disappeared. Placebo, eh?
I’d continue to take the medication and come in for regular check-ups. After about 2 years, it got better. My doctor increased the pause between visits. I’d get 3 months worth of meds. And at some point, I had no more seizures, not even these weird spasms in the morning. Gone.
I should have checked with him. But I just ran out of meds slowly and decided that since I got no more seizures for months, I may be able to just live on. (I know it’s stupid)
Luckily for me, it worked. Up to this day. No seizures. But I learned also that Keppra is usually sneaked out of the system. Going cold turkey like I did usually results in getting even more seizures, maybe having to take meds for the rest of my life. I did not know that back then.
So I consider myself really really lucky. And to be honest, on really rare occasions, in the morning, I get a single spasm. Like taking a deep breath, when you jump-scare someone. That reaction. I’m a bit worried about it. But currently, I have unhealthy sleep, supported by caffeine and staring at my screen for hours. So I’m at fault here.
And the first time I’ll get a seizure again, I’ll be back at the hospital.
I just hope this day will never come.
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