out of darkness

After decades of trying just about every Eastern and Western medicinal treatment available in an effort to control my seizure disorder, a year and a half ago I underwent surgery to have a device implanted in my brain and now I’m living seizure free for the first time in my life.

I live with an invisible chronic illness, a form of Epilepsy called Idiopathic Generalized Seizure Disorder, and I was one of 30% of the Epileptic population for which medication wasn’t working.

If you know anything at all about Epilepsy then you probably know what a Tonic Clonic is. Formerly classified as “Grand Mal”, they cause the person to go rigid, eyes roll back in their head, involuntary muscle spasms, and sometimes a loss of bowel control. The worst part (for me), is that I have no warning one is coming on, and for 15 minutes to a half an hour afterwards I have no short term memory. A half an hour can feel like a lifetime when I don’t know how I’ve ended up on the ground, why I don’t recognize anyone or anything, and since my body’s fight or flight response has kicked in, I’m in a state of pure, primal, fear. They aren’t the only type of seizures I have, but they were by far the worst. In short, it’s the stuff of literal nightmares.

The majority of my twenties were spent in and out of hospitals, getting CAT Scans, EEG’s (both Ambulatory and in-patient monitoring). I went through approximately 10 different seizure meds in an attempt to find something that would successfully control most of my seizures. And when we did finally end up finding that cocktail of meds, it controlled the Tonic Clonics and even the majority of the other small seizures I was having, but not all, and it came at a high price.

Anti-seizure medications are powerful central nervous system depressants and are frequently accompanied by such side effects as heavy sedation, weight gain, light sensitivity, and dizziness to name a few. Some of the side effects had even gotten bad enough that it became necessary for me to take ancillary medication in order to treat the side effects of the primary drugs. Life was a constant internal calculation and monitoring of everything I did and felt, how much sleep I got (lack of sleep will generally lead to seizures), the amount of stress I was under, my level of hydration, how much sunlight I was exposed to, flashing lights, and the list goes on. . .

When I made plans, it always had to be accompanied by the caveat that I might need to bow out at the last minute if I didn’t feel well, and since I was still having small seizures (absence, partial complex, and myoclonic twitches), I wasn’t able to drive. Overall though, I had figured out how to manage the worst of my condition and learned to live with the rest. People frequently remarked that I was so strong, that they could never “do what I’ve done”, but is it really strength when there’s no other choice?

Then, just when I had thoroughly forgotten what a nightmare the seizures were and I thought I was safe, the Tonic Clonics started recurring.

At first it was just one, so I tried to tell myself that maybe it was an anomaly. I mean of course I knew having them again was always a possibility, but it had been 14 years! The possibility seemed so remote that I hadn’t even prepared my husband for what to do in the event I had one. We didn’t meet until after the Tonic Clonics were under control so he had no idea what to do and he was terrified.

I let my neurologist know, but I knew that his response would be (and was), that the only option I had was to just increase the current medication I was on and/or add an additional medication. No thanks.

At this point I had been around the block and I knew the drill; if I increased my meds to the level my doctor was suggesting, my cognitive functioning would become almost non-existent. I might not have seizures, but I also probably wouldn’t be able to hold a conversation for any length of time. So instead I asked him to let me try a lifestyle change. Let me try to cut back on work (not an easy task because I’m a graphic artist and have my own business) but fine, I did it anyway. I also meditated every morning and took some quiet time for an hour, got more sleep, and reduced the stress in my life as much as possible, but still there were more seizures. And while previously I had Auras (a feeling or smell that warned me 15 seconds or so before a seizure), the Tonic Clonics were coming on suddenly and with absolutely no warning. The period of time between events was also becoming shorter and shorter until the Tonic Clonics were occuring just a week apart, and when I wasn’t having those, I was suffering debilitating migraines. Unable to work and increasingly unable to function, I had to admit that we had passed the point of no return. More serious medical intervention was necessary.

Then my brother went for a physical. You’d think that my brother getting a physical wouldn’t have any bearing on my health crisis, but if there’s one thing I’ve learned about living with a hard to treat chronic illness it’s that you find helpful bits of helpful information in the unlikeliest of places. So when Ben relayed that he had discussed my condition with his doctor during the course of answering a routine health questionnaire, she had asked if I knew about the incredible new research and implants that were beginning to be used to treat seizures? This new tech was providing non medicinal, therapeutic treatments with success, and even being referred to as the pacemaker for seizures.

It struck a faint chord. I remembered that I had looked into a device called a Vagal Nerve Stimulator (VNS), a device that gets implanted along the vagus nerve in your neck, about 17 years ago. I had actually had been really interested in it, but after doing some research I discovered that they weren’t approved to treat my type of seizure disorder so it wasn’t an option. But apparently things were different now. There were a couple of different devices, one of which was called a Responsive Neurostimulator (RNS) that gets implanted directly into the brain. What I didn’t know then but I do know now is that the RNS works by reeducating the neural pathways in the brain, retraining the brain and teaching it how to have fewer seizures.

To be honest I was not thrilled about the idea of putting something directly in my brain, but the research was showing real success, and let’s be honest I was desperate. I’d try anything at this point, even brain surgery.

When I brought it up to my Neurologist he informed me that he wasn’t able help in that arena. However he could refer me out to the Director of Neurosurgery Dr. Richardson and his team at the hospital, Mass General (MGH), and perhaps Richardson would deem me a good candidate. A Zoom appointment with Dr. Richardson and his team later, it was determined that I was indeed a good candidate for surgery. He felt confident that they could help me, but before I could undergo the surgery they outlined a plan that included a battery of tests, both in patient and out, at MGH. EEG monitoring (a three day EEG in the hospital), an MRI, and Neuropsych testing. All of which I have undergone many times before but not in years, not at MGH, and of course never during a Pandemic.

Two months later all of those were completed and the last step was for Dr. Richardson to bring my case in front of a panel of 30 other Neurologists, surgeons, etc. to discuss my brain and the results of the tests for them to decide to recommend the RNS implant, Neuropace. After multiple delays, and a lot of trying to pretend to be patient, they got me into the OR on May 25th of 2021. The silver lining to all of that waiting: it wasn’t such a bad thing because regardless of how desperate my situation felt, it turns out that getting used to the idea of having brain surgery takes a minute.

At this point you’re probably thinking ,“Okay, so it took a couple of weeks after the surgery, but then the device started working and you started feeling better, right?”

That’s what I thought but nope, this isn’t that story.

It turns out that the fine print was that because I was the 7th person at MGH with my type of seizure disorder to get the RNS, no one really knew if, when, or how well the device would work. Obviously they were reasonably sure that it would help or all of the Docs wouldn’t have approved it, but to what extent no one could tell me with any kind of certainty. They couldn’t even turn it on until a couple of months after the surgery because the brain needs time to adjust to the implant. And as it is with all Epilepsy treatment, anything that can help prevent seizures can also cause them if not implemented slowly and incrementally. So when the device was turned on two months later it was just that, on. No therapeutic treatment administered yet. I think of it as akin to plugging in an amp and getting that loud buzzing sound. The RNS was on but the therapy wouldn’t begin to be administered for another two or three months, and in order for my docs to properly program the device to treat my seizures I would need to keep having them. Yup, you read that correctly. I needed to have seizures in order for my doctors to target that precise activity and program the device to prevent it.

If you’ve ever spent much time either in or out of hospitals as a patient dealing with a chronic illness, then you know how time can feel warped and the days vast and endless. It was getting hard to remember why I had gone through with the brain surgery. I had been out of work for basically a year, and not only was I unable to run my business, but I couldn’t even paint. Painting isn’t just my work, it’s my therapy, it’s how I process my world. Being able to create was sometimes the only thing that made me feel mildly sane, like I was still contributing in some way to life and not to be terribly dramatic, but many times it felt like I was poised on the edge of oblivion with only the void staring back at me.

Then 10 months ago I started experiencing sensations of what felt like an aura, or even the beginnings of a seizure, while brushing my teeth and absently staring at myself in the mirror. My features looked sort of familiar but I didn’t quite recognize myself and then I felt something new . . . something kind of strange. The only way I can think of to describe it is that it felt like a train was switching from one set of tracks to another, enabling the same train to go to a different destination. Instead of going to the dangerous, yet familiar location of seizure-ville, the device sent me down an uncharted, unfamiliar, but very welcome path. I went on with my day and that aura never escalated into a full blown seizure.

A couple of weeks later it happened again but this time more pronounced. I was in the kitchen making lunch, holding a bag of veggies I was in the process of putting back into the fridge, when involuntarily I dropped the bag and it fell to the floor. I leaned against the fridge and felt a very familiar and terrible disorientation. I had the sharp awareness that what I was experiencing was the moment at which I’d typically lose consciousness and start convulsing . . . but I didn’t.

I stood there in my kitchen for a few minutes in disbelief until I realized I should go sit down, just as a precautionary measure in case I did have a seizure. I knew I didn’t need to though because it was really happening.

THE DEVICE WAS WORKING.

At my next appointment with my Neurologist, Nurse, and Neuropace technician, my suspicions were corroborated. They showed me the neural activity data from my device on their screen, comparing it to the instances I had flagged from the notes I kept, and I could see that that was exactly what happened. My doctors had programed the device to not only respond to the seizure activity and stop it, but teach it to change directions to go somewhere, well, different.

It’s been about 10 months since then and within that time we slowly dialed up the device to a therapeutic level and have been able to, equally as slowly, reduce my primary seizure medication so that I am not even taking it anymore. And because of that, I’ve gotten off another medication that I was only on to treat some of the side effects of that seizure med.

I feel like I’m emerging from over two decades of fog and am embarking on an entirely new phase of my life. 8 out of the past 10 months have been completely seizure free for the first time in my life, and this is just the beginning.