The One Where I Find Out I Have Epilepsy

March 16, 2024March 16, 2024 ~ Megan

Epilepsy in Hiding

Did you know you can have epilepsy for decades and not know it? Turns out that’s true. I am Exhibit A.

It started with a twitch. I have a neck twitch. Weirdly, my twitches are unrelated to my epilepsy and they have now been diagnosed as something else–despite that being the family joke for years. But the twitches put me on the path to the epilepsy diagnosis. And in true ✨️Megan Fashion✨️ I did it backwards from most patients. Sigh. Haha.

I’ve been in a specialized type of physical therapy (PT) for my dizziness (at least that’s what it started for), and extreme fatigue, and I’ve found out there are other issues through this PT. It’s been so incredibly helpful.

I LOVE my physical therapist. She is one of the most helpful and open-minded providers I’ve ever had. She’s listened (and listened and listened, lol) to my various complaints and has helped me find the right avenues to figure out what is wrong whenever something new pops up. And I like to think we’ve bonded over our neurodivergent brains. hahaha

This story is a prime example. 🙂

I Get Twitchy Sometimes

Photo by Carolina Heza on Unsplash

In an appointment in the Spring of 2023, I mentioned that one of my exercises was particularly triggering to my twitch and my PT doctor was confused. “What twitch?” she asked. I was confused. How did she not know about my twitch? I’d been coming for almost two years. How had she not noticed it? I twitch many times a day. And I ask most doctors about it…or at least mention it to them. So she asked about my twitch at that appointment.

No, I don’t lose consciousness. It’s usually in my neck, but sometimes in my face and/or arms, or legs. Usually on the left, but occasionally on the right. The twitches happen more often when I’m tired. And talking about it makes it worse. Just talking about it made it happen a bunch in that few minutes. I get quite embarrassed when it happens a bunch of times in a row and I know someone sees it. It’s usually a quick motion of my head, so it’s not always seen, but sometimes it’s repeated several times in a row, which can be annoying. Fortunately, it doesn’t hurt.

My PT asked if anyone had ever identified it, or if I’d seen anyone about it. Yes, I’ve asked multiple doctors (I’ve lost count, I usually mention it when I think it might be relevant) and no, no one has ever had an answer. She asked a few more clarifying questions and smiled slowly.

My Twitch has a First Name…

“I think I know what it is.” She went on to describe the condition, which mirrored my experience. She said it’s essentially a software issue with my brain, rather than a hardware issue (like a brain tumor or MS would be). It’s a legitimate neurological condition. I’m not crazy. And it’s real. But what was the name?! I was dying to know there was a name for what it was. She finally said, “Functional Neurological Disorder.” (FND)

Well, that’s the lamest and most unidentifying name ever,” I laughed. But I also felt the cool relief run through me that there was a legitimate name for what the twitch was.

A Series of Fortunate Doctor Appointments

My PT suggested that I see a specific neurologist at my hospital, who is an expert in the condition and could be the one to diagnose me. Perfect! I sent a message to my Primary Care doctor (she’s also wonderful) and asked her to make the referral.

A few weeks later, I had the ovarian cyst issue. Fortunately, I had a follow-up appointment with my Primary Care doctor a week later that July, so I reminded her about the referral request, which she sent in during my appointment. When I followed up with the Movement Disorder clinic where this doctor is, they said it would be nine months if I was lucky. Sigh. But then a few months later, I was lucky enough to get a cancellation and my appointment was scheduled for November.

I included all this about the timing to just show how long it is to be in limbo. How long it takes to go from appointment to appointment. It’s mentally exhausting, for sure. And I have it easy. I have excellent insurance that is generally willing to approve visits and tests, and (if I pay for the premium plan) a wider range of doctors on my insurance’s authorized list. I’m jumping ahead a little, but it’ll be just over a full year from that first conversation about my twitch with my PT to when I’ll get the week-long EEG done for epilepsy testing. A YEAR. What in the SAM HILL is happening here–that it takes a year to confirm epilepsy from the first conversation with a provider. Anyway, I digress. [clumsily climbs off soap box]

The FND Doctor Appointment

In November 2023, I met with this new neurologist, who was as great as my PT said she would be. 🙂 She confirmed the FND diagnosis, so that was nice to finally have an answer for my twitches.

In questioning me about my twitches, she asked me if I ever had audio hallucinations. I said no. But I thought of times when I had smelled things that hadn’t actually existed. So I told her about that. “Olfactory Hallucinations” turns out are a thing. So that’s fun. Guess I’ve been having them since probably high school? Maybe longer? I smell raw chicken, or raw pumpkin (both smells I hate and make me nauseous), or smoke–like electrical smoke or wood smoke. None of the smells happen at the same time. She asked me about the last time this happened.

The last time this had happened had been about 6-8 weeks before. My roommate and I were both home and I thought I smelled electrical smoke. I felt very anxious and compelled to find the source. I wandered around the house smelling for it but found nothing. My roommate and I both checked around the house and neither of us could find anything. I kept smelling it, but couldn’t source it. My roommate smelled nothing at all. It was stressful for me! What if there was a fire in the walls and we couldn’t find it!! Deep breaths. I remembered the whole thing, still do, and there was no blacking out.

These instances don’t happen very often. But I remembered this was not the first time I’ve thought I smelled smoke in my house when nothing was burning and been super anxious there was a fire in the walls–and there wasn’t. It’s happened multiple times in my life.

Another Referral

After I explained this instance, the doctor said she wanted to refer me to the seizure clinic just to make sure I was not having seizures. She said it’s possible that these instances are part of migraines, but they might also be seizures, so we need to make sure they weren’t. She made the referrals to the Seizure Clinic, a brain MRI, and an EEG to test for seizures.

I was flabbergasted. Was it possible I was having a seizure and didn’t know it? Was that a thing in epilepsy? I knew of only two kinds of epilepsy: petit mal and grand mal seizures. And I wasn’t losing time, so I didn’t think I was having those. I wrote it off as an overly cautious doctor and agreed to go. BUT I would rather have an overly cautious doctor who ordered tests and made referrals than a doctor who ignored things I was concerned about. I’ve been wrong about so many things about my body that turned out to be symptoms. Clearly, I don’t know anything about my body. Haha!

More Testing

In January 2024, I had the MRI (which was a whole thing), and the EEG. The neurologist messaged me after both and noted that they both came back clear with no abnormalities noted. Wonderful! I wasn’t having seizures! Or at least the tests didn’t catch any… I felt confident that the one thing I didn’t have to worry about now was seizures. We can move on. Yay!

I came so close to canceling my appointment with the Chief of the Seizure Clinic. I was absolutely convinced he was going to say I’m not having seizures. Why put myself through another appointment where another doctor was going to shrug their shoulders, at best, and say, “That’s weird, not sure why that’s happening,” and send me on my way. At worst, I’d get the “you’re wasting my time” brush off almost immediately and the doctor wouldn’t even spend any time on me if they didn’t believe me, or try to gaslight me into convincing me I’m wrong. I’ve seen all of these kinds of doctors through the years. Sigh. My chronic illness patient friends will know all about these kinds of doctors. They know doctors like my PT doctor, my primary doctor, and my FND neurologist are rare unicorns. 💜

The Seizure Clinic Appointment

So I walked into the appointment fully, 100% expecting to hear, “Congrats! No epilepsy! and Goodbye!” Instead what happened was interesting and better, and kinda worse.

The doctor did a full neuro workup (awesome!), asked me my history, and asked me about the symptoms that had me referred there. I was very grateful he took this seriously despite my clear tests. I wasn’t getting the brush off! With a bit of relief, I went through them again. I remembered, that I occasionally had auditory hallucinations–where I’ll hear music I almost recognize or remember, or can sing/hum the lyrics but can’t quite remember. I let him know about that too.

After we went through all this, the doctor sat back, “Well, I do think you’re having seizures.”

I’m sorry, “WHAT?!”

I’m not sure I’ve ever had a more clear jaw-dropping moment in my life than that one to this point. Like comically so. It would have been hilarious to watch from the outside.

“Yes, your symptoms are consistent with epilepsy.”

I was reeling. “But my tests were clear…”

“That happens sometimes. That just means you didn’t have a seizure while the tests were happening.”

“I’m sorry, can you clarify? Are you diagnosing me with epilepsy?”

“Yes.”

I blinked and blinked and blinked. What was I supposed to do with this information? I still don’t really know what to do with this diagnosis, even now weeks later.

The Plan Moving Forward

Part of the reason my headaches have been getting worse over the years was because of the seizures (very helpful to know, lol!). He said that one of my meds is also conveniently an anti-seizure medication, so he upped my dose. He said that the reason I’ve had fewer seizures in the past few years is likely because I started the medication and we had been slowly increasing the dose.

The doctor also said that he wants me monitored for a week in the hospital on an EEG to confirm the epilepsy diagnosis. A week in the hospital! I could still work from the hospital, so that’s good. It would be another 3-4 months out. sigh. (Spoiler–it ended up being a 5-month wait–and over my birthday, so that’ll be…fun. lol) I’m not looking forward to this and I’ll be bored. But as my mom said, I’ll get to stay at a 5-star “hotel” with all my meals catered and room service for my birthday! I’ll be waited on by my own personal wait staff (love you nurses and CNAs!!). And I like the hospital’s creme brûlée, so it’ll work out. 🙂

Still shocked, I couldn’t think of any questions except: could I keep my license? I had been worried about this. Fortunately, the doctor said I could, since I don’t lose consciousness. WHEW. Such a relief.

I was sure there was a ton of information I needed, but it was subtly clear the doctor was anxious to get out of there, so I didn’t ask any more questions. After the nurse came in and handed me my check-out paperwork (“Don’t call us, we’ll call you to schedule a follow-up”, uh, okay?) I realized I didn’t even know what kind of seizures I was having. I was so overwhelmed and confused.

What Now?

It would have been nice if the doctor or nurse had provided me with resources or even pointed me in the direction to get more information. Fortunately, I’ve been diagnosed with enough conditions that I know how to do medical research and how to find reliable resources. But in that moment, it would have been nice to have something in my hand and someone knowledgeable to talk to. Anyway. So I did the next best thing: I called my resident on-call nurse.

I called my mom. I think she was more shocked than I was. Can’t imagine why. How do you miss that your kid is having seizures?? lol. To be fair, I never told her about the very weird olfactory and auditory hallucinations. When I was a kid I wasn’t quite sure they actually were happening so I usually just brushed it off, in my defense. They were short and did not happen together or super often. I just always thought they were a weird “Megan Quirk”™ and I had so many “quirks” (which were, surprise, symptoms of all my different conditions) so why bring up another one for a doctor to shrug or roll their eyes at.

Turns out that hallucinations were one that I should have mentioned. OH WELL. hahahaha. And in researching epilepsy since then, I’ve had some other symptoms since childhood too, like a lot of deja-vus, near-constant and worsening headaches, and apparently seizures that have auras with my other senses.

Congratulations on Making it to the End

I found out from my doctor’s chart note that I have focal aware and focal absence seizures (probably because they are probably happening in my sleep too–sometimes a smell or a loud noise has woken me up). These are the most common types of epilepsy–I’ve learned this from researching epilepsy on my own.

So remember days ago at the beginning of this post when I said that I go about things backwards? Usually, people go in for seizures and walk out with an FND diagnosis. Well, I walked in for an FND diagnosis and walked out with an FND AND an epilepsy diagnosis. #onbrand

There you have it. I have epilepsy. Fortunately, it seems fairly well controlled (I think??) and doesn’t seem to really impact me much. If you see me panicking over the smell of raw pumpkin and it’s March–just tell me to chill out and it’ll pass in a minute or two. It’s just a little seizure. 😀

If it’s October–well that’s just (probably) because I hate the smell!

Disclaimer: I’m not a doctor and this is not a way to be diagnosed. 🙂 If you think you are having symptoms that sound similar, please find a doctor who will listen to you and take you seriously. You are your own best advocate. 💜

Life on the Edge

Person standing on the edge of a mountain cliff. The sun is sitting on the horizon just below the mountain

November 5, 2019February 26, 2020 ~ Megan

Photo taken in Yosemite National Park ♥ Photo by Leio McLaren (leiomclaren) on Unsplash

I live life on the edge.

The edge of an allergic reaction.

The edge of medical science.

The edge of an unknown, looming, black abyss.

The edge of fear.

The edge of faith.

I’m not an “edge” type of girl. I am terrified of falling. Heights have always scared me. I have always clung to the known, the safe, the solid.

I don’t have that luxury anymore.

I have been aggressively attacking my rare diseases since I was diagnosed in 2015. Each day, each doctor’s appointment, I’ve been inching closer to the edge, knowing at some point we were going to max out my options. At a recent appointment with one of my specialists, we were discussing next steps.

Reality Check

“We don’t have a lot left we can do, Megan. There’s so much we don’t know about how your condition works or how to get it to stop reacting to everything. It’s just so complicated,” my wonderful GI doctor said. “You live on the cutting edge of medicine and science.”

I sighed. I know.

During my entire childhood through college, I knew, KNEW, I was going to be a scientist. I knew that I wanted to live on the exciting, cutting edge of medicine and science–as a researcher. Working on cures for devastating conditions like Alzheimer’s disease.

Not as a patient. It never even once crossed my mind. And it’s definitely not exciting on this end of the equation.

But then God had other plans. He knew. Knew that I was going to need that basic understanding of biology because I was going to be the one with a devastating, ill-understood condition. It was heartbreaking when I didn’t get jobs in research and ended up working as a paralegal. As much as I have come to enjoy law (which surprised me), I still miss molecular biology. Until three years ago, all I used my degree for was to successfully keep my office plants alive. Now the reason I studied it for so long are obvious and I have been so grateful for that basic knowledge.

A week after the conversation with my GI doctor, I met with my immunologist, also a wonderful doctor (I’ve been so blessed). “I think we’re pretty much capped out on you, Megan. You’re already on all max doses of all the medications. I don’t have any more treatment options unless we decide to do chemotherapy. And I don’t think the side effects are worth it at this point,” he said. “I know you’ve still got symptoms, but you’re stable now. We’re going to have to wait until more treatment options are available, or your condition changes.”

I sighed again. I know. And I agreed.

Stable doesn’t mean cured, fixed, or better. It means I’m not getting catastrophically worse at the moment. I am certainly better than I was three years ago. But it means I still am sick. Still have severe allergic reactions. Still have the risk of anaphylaxis at any moment. Still might end up in the hospital. Still might get worse. Still might need chemo. Still might die from this.

I’m at the point where I’m tired of fighting my body and need a break anyway. It’s been a hard year so far. Adding in weekly immunoglobulin therapy has been more difficult than I expected. I’m exhausted–physically and emotionally.

I told both of the doctors this at the appointments. They both nodded in support and encouraged me to take a break from pushing my body and my spirit. “It’s okay to take a break. You’ve worked really hard at this for a long time. Take some time to just live. Let’s see you in six months and we’ll see where you’re at,” they both said.

I sighed. Okay.

I was afraid this day was going to come. I’ve spent three years fighting so hard to improve. Once I knew what was wrong, I had something to fight against. And I’m a good fighter. I was absolutely sure I could get better (even when my doctor wasn’t sure). And I have gotten better. I’ve improved significantly. My doctors remind me of this at every appointment. But, improvement does not equal “fixed.” They remind me of that too.

This time I hear Reality slapping and screaming at me, “There is no cure for this. You’ll be like this for the rest of your life.”

It is crushing.

I already knew it, of course, intellectually anyway. I knew it the day I got my diagnosis three years ago, but it was still devastating to hear it now, again. To feel it. To feel the thick, black emptiness below me slowly reaching for my dangling feet, ready to suck me in at any moment.

I take a deep breath. I can do this. I can keep going. I can make it six more months.

I mark time by doctor’s appointments now. Every six months. Monthly shots. Weekly infusions. Daily pills. Living in six-month windows. I’m not able to see beyond that. And some days, barely able to see tomorrow. I worry this is how the rest of my life will be like.

Reactions

Every moment I live with a fear that I’m going to have an allergic reaction. I recently walked into a lovely shop and before I even got to the entrance, I could smell a sweet perfume emanating from the store. It was too strong for me. I wore my mask, hoping it would be enough. I quickly went in and made my purchase and left the store, practically holding my breath the whole time. Praying I would not have a reaction. I’ve learned not all prayers are answered the way we want. (Also, online shopping is my favorite. No smelly stores!)

By the time I went to my next stop, one block away, I could tell I was having a reaction. A headache exploded in my skull. My GI tract was suddenly very angry at me. I was nauseous, congested, dizzy, achy, exhausted, and anxious. The bright sunlight triggered hives and diffuse itchiness. I scrambled to find my nausea medication which helps, but it’s not a cure-all. I needed benadryl. And sleep. Lots of it. But I still had a play to go to that afternoon, and a five-hour infusion to do after that. I didn’t want a reaction to stop me from living my life. I repeated my mantra to myself, “Just breathe. Slow, deep breath. Just breathe. You’ll be okay.”

I made it to the play and took some Tylenol, and hoped no one sitting near me would be wearing something scented. The play was enjoyable and I wore my mask the whole time. Naturally, I got weird looks from most people around me. I smiled and winked at the kids who stared. Hopefully communicating that I wasn’t a scary monster. Most smiled back.

I slept for the rest of the weekend. Just two stores and a play were too much for my broken body that day. Some days I can do more, some days I’m only able to do the bare minimum to survive.

Life on the Edge of the Cliff

I cling desperately to edge of my cliff, feet dangling precariously above a vast, inky black sea of nothing. Fingers curled tightly into any crevasse that may give me hold so I don’t slip. The rest of my life spread out in front of me. A giant black void of nothing. It’s all I’ve seen the past few years. Not even the glimmer of a faint star in the sky. My wonderful, brilliant doctors don’t know how to help me anymore. I don’t know how to help me anymore. I don’t know what my future holds. Staring at the empty black is terrifying. I squeeze my eyes tightly against the black so it doesn’t sink into my soul.

But sometimes I bravely open my eyes wide and stare, searching, reaching for a light in the mist. And sometimes I glimpse it, one step forward. One step enough for me.

I am not hopeless.

Attitude is Everything

A friend recently told me she can’t believe I have such a good attitude with all of this going on. I shrugged my shoulders, not sure how to respond. I don’t know that I have a great attitude about it, but complaining doesn’t help anyone. Just makes everyone around me miserable too. (Though I still do complain sometimes!) Laughing at myself is much more entertaining anyway.

What else can I do? I might sit on a cliff, dangling above an unknown future…but doesn’t everyone? No one knows their future. Everyone has struggles of some kind. Everyone is fighting unseen battles. Mine are of the weird, expensive, medical variety. Some might have family or financial struggles. Others may have difficulties at work. You might have something completely different. But my “rare” struggles don’t make me more special, or more admirable, just because they are unique.

We are all here on Earth to help and lift each other up during our struggles. Heaven knows it’s difficult, maybe even seemingly impossible some days. But I can, at least, smile at someone today. Even if that someone is just myself staring back in the mirror.

I have hope in better days yet to come.

I have hope in seeing through the black fog to the sun rising above the beautiful valley below.

I have hope that from my perspective on the edge that I’ll be able to see how far how I’ve come and the wonderful, beautiful future I have going forward.

I have hope in a bright, happy future when all pain and suffering no longer exist.

I have faith I’ll be there to enjoy that feeling.

I’ll close my eyes and bask in the happy, warm sunlight of that moment.

_____

[A version of this article was published on The Mighty, a website for people with chronic illnesses, in February 2019. It was originally written in July 2018.]