Can epilepsy be a friend?

Looking beyond pharmaceuticals to what our seizure disorders can teach us

I meet the most fascinating people in virtual meetings with the support group started by my friend Marc. When I met Chris a couple months ago, her story immediately grabbed me. She suffered complex partial seizures for decades before getting a correct diagnosis. It took a bad case of professional burnout for her episodes to get bad enough that they were finally caught and classified as epileptic seizures.

In a September email, Chris wrote something that I’ve been chewing on ever since:

“I have exaggerated in terms of work in the past. And today, when I do not respect my limits, I usually have a seizure. So, I see my epilepsy today more as a friend than an enemy.”

I am not so enlightened, I thought as I read those words for the first time. I still see my epilepsy as an enemy. I had also burned out in the past, both personally and professionally. My epilepsy diagnosis started me down the path towards learning to respect my limits. I say “started” because there’s still a long way to go. While COVID likely played a role in my breakthrough seizures, myocarditis, and sudden cardiac arrest eight months ago, I had been overwhelmed and stressed for several months before my demise. A lot of people get COVID and do just fine. Perhaps the virus hit my physically-healthy, fully-vaccinated self so hard because it was the last straw of many. I’d been living too close to my edge.

After I published Dancing with Seizures (Part II), Chris wrote me again. With her permission, I’m sharing the following excerpt from her note:

This Wednesday, I had a consultation with my epileptologist. As I do still have my focal seizures (average of 2 per month), my cognitive reserve is being undermined by them. I have been feeling that in my brain. He then suggested two possibilities: VNS [vagus nerve stimulation] or trying X-Copri. He mentioned X-Copri was quite successful with some of his drug-resistant patients. When he mentioned X-Copri, memories of my experiences with the 5 AEDs [antiepileptic drugs] I have tried came back into my mind, giving me goosebumps. That life with AEDs was certainly very distant from the one I want to live. I definitely prefer to have my seizures every month rather than have far less seizures and the life I had with all those terrible side-effects of AEDs…At Marc’s meeting, one member is trying X-Copri and he feels like a drunk person with this medication. I am very resistant in trying another AED after all I have experienced. As a gentle neurologist has said to you, we are our own boss. I prefer to continue on my path of CBD, gluten-free diet and yoga, and have a life, even knowing that this path will harm my cognition little by little. I prefer to have still good years of life to live.…

I see that in the traditional Western medicine, the solutions to my epilepsy will be mostly medication, devices and surgery, [so I am] now determined to find a doctor of integrative medicine that also sees me as whole and not just in parts.

Chris also shared in her email that she reduced her seizures by 60% after she cut gluten from her diet. This is not something her epileptologist suggested, but an idea sparked by Dr. Cynthia Li’s book Brave New Medicine. Li, a doctor trained in traditional medicine, turned to integrative medicine out of personal necessity to treat her own health problems.

Chris also told me about attending the World’s Alzheimer Summit recently. Dr. David Perlmutter, a neurologist and researcher with a more holistic approach, mentioned this Desmond Tutu quote: “There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they’re falling in.”

Oh Shenandoah! If only the river inside me was this clear.

In the case of chronic illnesses like epilepsy, pharmaceuticals treat symptoms but not the underlying disorder. Western medicine does little to promote systemic health. In part, this is because it’s hard to isolate factors and break down complex systems by analysis. It’s the interrelationships between parts that define system health, not how each part is working on its own. But those interrelationships are tricky to map and understand. Also, companies can’t market healing the way they can market drugs. And doctors don’t have time to heal people because healing requires stepping back to see the full constellation of symptoms a person is experiencing. Healing is personal, individual, and complex.

So a lot of us only start stepping back like this when the drugs fail. From mold and heavy metals to ancient Ayurveda wellness practices, Chris has started looking beyond pharmaceuticals to heal herself. I can relate. This isn’t to say that traditional experts don’t have their place. Chris and I both have an epileptologist. We’ve both worked with a neuropsychologist. It’s just that we also travel upstream, as Dr. Perlmutter put it, to understand why we fell in the river and to make a sensible plan to keep from falling back in over and over again.

I doubt I’ll ever know precisely what caused my seizure disorder. I’ll never know why a seizure turned so bad that I suffered sudden cardiac arrest (or was it the other way around…?) After completing epilepsy monitoring unit testing at NIH last month, I’ve had to accept that analysis of brain waves also can’t answer any of my questions. So I read about things like fluoride in the water supply (I only had to read a few journal articles before I bought a water filter capable of removing flouride…just in case.) I research oil pulling, and am surprised by the wealth of research backing this ancient practice. I successfully swish coconut oil one morning without gagging; spit it out; brush my teeth; and feel like I’ve had my teeth and gums scrubbed by the most thorough and gentlest dentist in the world. Frankly, even if it doesn’t do all the systemic good that some studies (and individual anecdotes) promise, it’s worth doing just because it feels so much less gross than rolling out of bed to wash the night’s bacteria and toxins down into my gut with my morning cup of coffee.

Like Chris, I practice yoga. I turned to Ashtanga right after my epilepsy diagnosis and have practiced it off and on ever since. In search of something gentler, I recently started adding yin yoga to my routine. I really never went in for fast-paced vinyasa or “fitness” yoga classes. I’m all about the mindfulness and restorative stuff—the stuff that is much harder for me. I used to be the person who couldn’t lie still through a shavasana, but with practice it’s becoming my favorite part. I linger on my mat to soak up those extra few minutes of peace.

The only cure for burnout I’ve yet found is mindful movement. I often think how grateful I am that the medical-industrial complex hasn’t yet created pharmaceuticals for burnout. If it had, I’d probably be popping pills for that along with my heart meds. Instead, I had to navigate burnout personally, systemically, and holistically. Luckily, I found a few books along the way, such as the Nagoski sisters’ bestseller, Burnout: The secret to unlocking the stress cycle.

My burnout story, like Chris’s, is intricately linked with my epilepsy story. No wonder antiepileptic meds are not the [only] answer. As the seizure drugs fade from my system and I take management of my chronic illnesses back from specialists and into my own two hands, I’ve come that little bit closer to seeing epilepsy as a friend. My epilepsy is the type of friend who tells me what I need to hear—not what I want to hear. The type of friend who reminds me who and what I am. The only friend, actually, who was willing to yell and scream and punch me in the face to get my attention when I was living in the wrong direction and failing to care for my body and soul.

Of course, it’s a lot easier to wax poetically about epilepsy’s friendship when I’m not actively suffering grand mals for a few months. When my heart seems to be on the mend. I wonder if I’ll feel differently the next time I’ve face-planted on the floor.

Either way, the lesson here is to heed our body’s many warnings before they get louder. It shouldn’t take a friend like epilepsy to pause and listen to ourselves. But in today’s world, it sometimes does.