© 2017 Lisë Stern

Epilepsy

Eitan’s Epilepsy

By Lisë Stern, Eitan’s mom

Cambridge, January, 2006. It was a chilly, snowless Monday and Eitan, then 11, was home sick in bed with a migraine-level headache, a first for him. I was working in my office upstairs. Suddenly, “Help!” I heard him call out. “I can’t move!” I ran downstairs – and he was moving, shaking, vibrating, his eyes bulging, looking terrified and at the same time vacant. “Eitan! Stop!” I shouted, but he made no response, just kept shaking.

I had never seen anything like this, but knew it must be a seizure, and knew this was not good. I ran for a phone and back to his room and called 911, for the first time in my life. The EMTs were there within minutes. Eitan’s seizure had stopped by the time they arrived, but he was totally disoriented, and couldn’t talk. (This is when I learned that when you arrive at the hospital emergency room via ambulance, you don’t have to do triage.)

It took Eitan a while to get oriented again, to be able to say his name, to have a conversation. He wrote about the experience a few years later, when he was 15:

After being rushed to the hospital, I had to stay the night. Now that is an experience that I try not to remember. Oh sure they have TVs, but the remote had only two buttons, Power and Channel Up. I could only move the channels in one direction. If I accidentally flipped past a show I liked, I would have to go all the way around the 90-something channels just to get back. Kind of frustrating right after having had a seizure.

I went home the next day. Because all the tests were negative, the doctors didn’t think that I actually had a seizure, they thought it was a “faux” seizure. Whatever that is. My mom’s friend suggested that we film my next seizure and send it to the doctors. Conveniently, I had one that night. The doctors looked at my seizure and called it epilepsy. I later found out that epilepsy is a very general term for seizures. It is usually used when the doctors don’t really know what type of seizure it is, or what causes it. Even after a series of tests, cat scans, MRIs, MRAs, EEGs, and EKGs, I was still diagnosed with epilepsy. Not the best news to hear right after a divorce.

In fact, this news was very hard for me. Having a seizure is like being paralyzed: I couldn’t control my body. It felt like I couldn’t move but I was shaking uncontrollably. I wondered to myself if I would have to deal with seizures for the rest of my life. The doctors said that there was no direct cure but the seizures might disappear over time. I felt alone and confused because not even my family or friends could help me through this. I didn’t know anybody with epilepsy. I had to overcome this obstacle by myself. I needed to find a way out.

**

Seizures are “disturbances in the electrical activity in the brain,” according to epilepsy.com, and often the origin is unknown. If you’re lucky, the seizures can be controlled by medication. There are all kinds of seizures, from a barely discernible flickering of the eyes to a full-body shake-up – what used to be called grand mal and is now called tonic-clonic. This is the kind Eitan had. When he was first diagnosed, Eitan described his seizures as like being in a country where a king controls everything you do, and you have no say, no choice. More recently, he described them as feeling as if he were drowning. An EMT said the stress on your body is akin to running a marathon in three minutes.

**

On Valentine’s Day, 2013, Eitan passed away from SUDEP, Sudden Unexpected Death due to Epilepsy, a condition we had never heard of until he died.

The week before, Eitan let me know that he had had a few seizures since starting college at the University of Miami. I got upset, as moms do – the last seizure I had seen happened the summer before, and he had stopped breathing momentarily. And as teenage sons do, he got annoyed with my worry.

“I’m your mom,”  I said. “You’re not a parent. You don’t know what it’s like to see your child stop breathing. I worry about your seizures!”

“I know I’m not a parent, I don’t know what it’s like,” he replied heatedly. “But you don’t know what it’s like to have a seizure. I don’t like having seizures either! It’s my epilepsy, and I’m going to take care of it!”

**

Eitan was prescribed Trileptal (oxcarbazepine), and the seizures stopped – for about 18 months. Side effects included drowsiness and occasional migraines, but other meds also had side effects, and this one worked, immediately. Since he was 11, every 15 to 18 months or so, he’d have a seizure, always as he was waking up in the morning. He wrote,

Luckily for me, though, the medicine that the doctors prescribed me pretty much completely worked. I didn’t get a seizure for a very long while after I started taking my meds. It is kind of inconvenient to swallow pills two times a day, but it’s not that bad. Even more lucky for me is that even if I do have a seizure, I only get them really early in the morning right around when I’m waking up, and I’m lying down. They are also not life threatening, so even if I do have one, I can’t die. I learned from having seizures that even in tough situations, there is a way out. The way out can be hard to find but if you look hard enough, it’s there. The way out in my case was the medication. I was lucky because meds don’t always work.

I also took pride in my seizures. This was another way out for me. By taking pride in them, I felt special because I was the only one all my friends knew that had seizures. I even posted my seizure video on the internet so people could look at me having it. Accepting my disorder is the thing that made me able to better get through such a hard time.

**

 

For several years, the medication helped control Eitan’s seizures. A year or more would go by, then he’d have one, and he’d increase his meds, which would hold the seizures at bay again. But this past year, Trileptal was proving to be less effective.

In the summer of 2012 Eitan was working at TripAdvisor. He usually woke up around 7:30 a.m. I was up early working in my office. I heard him call, “Help!” I raced down to his room, and he was just starting to shake. “You’re having a seizure,” I told him, his eyes beginning to take on that terrified yet unseeing look. I ran upstairs to get a landline to call 911, so they’d be able to trace the call, just in case. I also raced downstairs to unlock the front door for the EMTs. We now no longer called them every time Eitan had a seizure – the neurologist had said it was unnecessary. But it had been more than a year since his last seizure, and I didn’t want to take chances.

As I spoke with the 911 operator, I noticed Eitan’s head had begun to turn blue. And again, although the neurologist had said it was unnecessary, even undesirable, to try to help epileptics start breathing again in such a situation, that they would on their own, I could not simply stand there and watch my beloved son turn bluer and bluer. While reporting on what I was witnessing to the 911 operator, I alternately yelled, “Breath, Eitan, breath!” I pulled his jaw down – it was so tightly clenched. I attempted to breath into his mouth. And then, as I pulled on his mouth to open it – a welcome gasp of breath. Eitan was still convulsing, but got more air in him, and he breathed again, and again. Sweet, beautiful breaths.

There seemed to be a secondary seizure, but his color shifted to pink, to normal. The EMTs arrived, and began taking Eitan’s vitals. He was very disoriented, couldn’t speak, and kept pushing away the oxygen mask they tried to give him; finally, after about half an hour, he accepted the mask on his face, the extra burst of oxygen to help minimize headaches. And he was able to speak again, and assert that he did not need to go to the hospital. Later, he posted a simple status line on his Facebook page:

looks like i've still got epilepsy

Eitan was 18 when this happened. We called his neurologist, but they couldn’t speak to myself or his father without Eitan’s permission. He later gave it to us. He and his doctor agreed to up his Trileptal dosage, and it seemed to work, or so we thought.

**

The Monday before Eitan passed away, we talked about his epilepsy again. This was a calmer conversation than the one we’d had the week before.

“It’s very frustrating having epilepsy,” he said. “I want it not to matter, not to affect my life. But it does affect my life. The medication makes me feel tired all the time. My right hand gets shaky. I can’t hold my hands up without them shaking, and that’s been true for years.”

I suggested he contact his neurologist in Boston, perhaps they could up his medication until he would be able to get an appointment in Florida. He said he’d consider it. He was trying to own his epilepsy, to come to terms with how best to control it.

I don’t think I had truly comprehended the impact epilepsy had on Eitan’s life, how he had to be aware of it constantly. Yes, much to his annoyance, I’d ask him every morning when he was home if he took his pills. But I didn’t have to take them. As much as witnessing his seizures frightened me, they must have been terrifying for him. And yet he went through life embracing his world, his friends, excelling socially and academically. He refused to let his epilepsy hold him back in any way.

I told him then, “I’m really proud of all you’ve accomplished. You’re in college, where you want to be, doing really well in most of your classes – despite that one anomaly. I’m very proud of how well you’ve done. Plus you’re working every week on top of that, and now you’re a pledge at the fraternity, something I know you’ve always wanted. I just want you know that I’m very proud of you.”

He thanked me, in that way teenagers do – of course I’m going to say such things, I’m his mom, but I will be forever grateful that I did say those things to him then, my last conversation with Eitan on this earth. We ended our phone call as we always did: I love you, I said; “Love you too,” he said.

**

Neurologists often choose not to mention SUDEP to those with epilepsy. Some say that since it’s rare, they don’t want to scare people. I say knowledge is safety, and hope to spread awareness both of epilepsy and of SUDEP. Research around the time Eitan was born showed that simply putting babies to sleep on their backs greatly reduced the incidences of SIDS (Sudden Infant Death Syndrome). My hope is that similar research can help eradicate, or at least minimize, SUDEP, and save other families from experiencing the tragedy we have experienced with our beloved Eitan.

Copyright © 2017 by Lisë Stern

Further Reading on SUDEP and  Epilepsy