Disclaimer: This story contains details of abuse that may be upsetting to some.
“If I were able to go back and ask my younger, teenage self if there was ever a point I thought my brain and its waves were going to run my entire life, I would look at myself like I was crazy. I never once thought I would go from what society considers ‘normal’ and ‘healthy’ to ‘severely disabled’ and ‘abnormal’ in a manner of minutes. I was always that kid who rarely got sick, who would hurt myself being super clumsy and would break a few bones here and there, but nothing was ever that big of a deal health-wise for me. However, I quickly found out epilepsy doesn’t discriminate, no matter your health growing up, and I was now going to be a part of a gigantic family that includes over 65 million people around the world for the rest of my life.
Epilepsy and seizures are so, so, so much more complex than what the average person knows about it and what is portrayed in society and media. For some reason, epilepsy is one of the most stigmatized medical conditions out there, but it’s also one of the most common and has been around since ancient times. Despite what people may think, there are 40 types of seizures out there, not all of them are convulsive and violent, and not all of them are caused by strobe lights (photosensitive epilepsy is actually only around 3% of people with epilepsy). However, before I got diagnosed, I have to admit I was also someone who had no idea there was more to epilepsy than strobe lights and violently shaking, but soon came to find out just how much goes into it.
I remember doing really well in high school, but I absolutely hated going and hated being around people every single day. For some reason, I wanted to crawl up in a ball and stay in my room, finish high school as quickly as I could, and move on to college. But I couldn’t put my finger on what was going on with me mentally and emotionally. I got sent to a few psychologists and therapists and they had varying answers of what mental health issues they wanted to diagnose me with (Borderline Personality Disorder was a favorite), but nothing ever seemed to get treated or be the right answer. I wanted to give up on mental health professionals altogether, and to be honest, I did for quite a few years.
Around the time I decided to do independent study to finish off high school, there had been conversations between my younger brother and mom about ‘this thing I do sometimes right after I wake up.’ My little brother was adamant I was having some sort of seizure, but it didn’t ‘look like a normal one.’ They were super brief, I had no recollection of them happening, so no one was able to figure out what it was for certain for a while.
When they were suggesting I was having seizures out of nowhere, I was stunned they were even thinking this, because I spent all my spare money on concert tickets and NEVER had seizures. I was pretty certain something like a violent seizure would have gotten noticed by now (back to the stereotype). I started to get angry because I felt people were trying to diagnose me and they had no reason to be throwing those words at me — I stayed sober, I didn’t have any brain damage, and I made it through concerts and horror movies with no problem. This couldn’t be true, I’m not epileptic… how?
I tried to fight the actual possibility I had epilepsy for a while because my seizures were so sporadic, and I never, ever, had anything ‘wrong with me’ before, except for when I fell on rollerblades and broke my wrists or something. My seizures didn’t have any rhyme or reason to showing up, I still knew nothing about epilepsy and didn’t know anyone else with it, so I was having a hard time accepting this.
I finally caved and went to get checked out when my cousin stayed the summer with us when I was 17. My cousin, who was going to school to be a nurse at the time, ended up seeing me have an absence seizure (non-convulsive, staring off into the distance) in the middle of a nap I was taking and ran to my mom and said, ‘I’m pretty sure she’s having seizures! You need to take her to the hospital.’ It was a punch to the gut, for sure, to hear another person have the same feelings, but at the same time I knew it was time to suck it up and go see what was going on.
I went into the diagnostic process completely blind, not knowing what to expect, what the results could be, or what kind of treatment I would need. I was given your generic EEG, MRI, CT scan, tests to confirm what my family members had seen and assumed. They turned out to be correct, much to my dismay. I was definitely having seizures. I was extremely heartbroken I walked into my neurologist’s office healthy and walked out with a chronic illness that there is currently no cure in sight for.
My neurologist handed me the label of Right Temporal Lobe Epilepsy (seizures start in your right temporal lobe) with absence seizures, migraines, as well as a prescription of Topamax… alongside a bruised ego and a damaged soul there was no prescription for. No one in my family has seizures or epilepsy and I did absolutely nothing to cause this diagnosis for myself, yet here it was and it wasn’t going away. I blamed myself, I hated myself, and I lost a little bit of myself with that one statement and piece of paper. It was time to reinvent myself, but I didn’t know how to.
Despite my epilepsy being out of control, I decided to do online college, as I had already gotten pretty good at managing my time and being on my own schedule. I took advantage of the fact I was at home with tons of free time and did an accelerated program, getting my Bachelors and my Masters in 4 years total. I graduated with honors and seemed to forget epilepsy was the reason I was actually taking my classes at home. Everything was starting to line up. I was almost able to get my license back (it gets taken away until you’re seizure free for 6-12 months), I had a career goal in mind, and seizures were slowing down. But that soon drastically changed on me.
As I was getting closer to the end of my degrees, my epilepsy took an even rougher turn for the worst. I was already trying a fourth anti-seizure med, and I was defeated. I was convinced I was going to die because of my epilepsy being so out of control. I just wanted to give up. I would have tiny patches where my seizures would disappear (a month to three months) and I would get my freedoms and independence back. Those times would get shattered in an instant and I was right back to feeling like a toddler who needed my mommy to take care of me every moment of my life, even though I was in my 20s. Not only were my seizures increasing in frequency and severity, but they kept changing in symptoms. I was exhausted from the tons of seizures I was having, the meds not necessarily working, and how depressed I was from feeling like a burden on everyone around me.
A lot of people suggested I try dating since I was done with my degrees and focusing on ‘getting better.’ I already had a hard time dating with epilepsy, because for some reason the title of it just scares people away. I’ve lost friends, family members, partners, etc, because ‘the responsibility of epilepsy is too great,’ or ‘it’s scary.’ Yes, epilepsy is scary, but it’s also very common, can happen to everyone, and it’s really painful to find out that’s the reason someone doesn’t want to be around you. Even though I had some pretty disappointing experiences in the past, I decided to see who and what was out there. I thought I had found someone who accepted me for me and didn’t mind my epilepsy.
This guy, let’s call him MP, spent the first few months of getting to know me telling me about his previous struggles in life (addiction, family problems). He knew people who happened to have seizures, was familiar with epilepsy, and knew what to do if I had a seizure around him. I was hesitant, but after some time I wholeheartedly believed my epilepsy was just ‘a thing’ I have to him, just like I have green eyes, and if I didn’t give someone a chance, I was going to let this medical diagnosis take over my entire life.
We became extremely close. I thought this might actually be something serious. He was well aware of the fact my seizures weren’t under control and came with limitations of what I can do and where I can go, yet he still seemed to be fine with it. At first, this wasn’t an issue. We both really enjoyed sports, so we’d spend our days watching NHL games together and laughing when he’d come back from work, but this didn’t last too long.
At this point, I was medically restricted from working by my doctor’s request, as it was too dangerous for me to do so. For some reason, MP was extremely resentful of the fact I couldn’t go to work and he had to. I tried to explain to him how badly I wanted to work to use my degrees I earned and I didn’t want him to feel like he was the only one doing things, but at the same time, it was out of my control and he wasn’t helping me feel any better about the situation.
The resentments about me not working turned into massive arguments about me being ‘useless’ and ‘taking advantage of him’ and around this time, I noticed almost all of his money was going toward alcohol. I don’t drink myself, as I’m on daily medication, and alcohol is a huge seizure trigger, but I was trying to be understanding of him wanting to do so, even though I didn’t really enjoy it or who he would become when he was intoxicated. While he was drunk, I would have seizures constantly and he’d be yelling at me for having them and taking a while to recover from it.
He would also get upset about me not wanting to have sex with him because I wasn’t feeling well, and would tell me not wanting to have sex with him was because ‘I didn’t love him.’ I finally questioned him and told him no, which he didn’t like, and he tried to choke me. Thankfully, I decided to press charges, but my mental state dropped down the toilet after that and I just wanted to end my own life.
New Hope With Brain Surgery
Right after sending MP to jail, I shriveled back up into myself, didn’t open up to anyone, and thought everyone was going to judge me or take advantage of me because of my epilepsy that was STILL getting more severe by the month. I was extremely depressed and suicidal and had no idea where to turn. I felt alone and was in an even darker state of mind than any state I’d been in previously. My neurologist sent me to an epileptologist in Los Angeles (epilepsy specialist) and told me to get ready for a new chapter in my life and my epilepsy.
I had already been to 4 different hospitals with zero results, so I was waiting for frustration, another medication change, and probably more seizures based off of it. However, I was pleasantly surprised and was hearing things like ‘brain surgery,’ ‘neuropsychiatrist,’ and ‘drug resistant’ that I had never heard before, which gave me a lot of hope.
Within 9 months of being at UCLA, my meds that were adding to my negative mental state were switched, I was recommended to a mental health doctor (neuropsychiatrist) who knows about specific mental side effects that come with epilepsy, and I found out meds weren’t solely going to control my seizures. I was on the way to figuring out all the other types of epilepsy and seizures that lived in my brain. I was so sick of having epilepsy run my life, that within .5 seconds of my epileptologist asking me if I was up for brain surgery, I didn’t even blink and told him, ‘YES!!!’ It was the most terrifying decision I’ve ever made in my life, but the best decision I’ve ever made too.
It took about 18 months to finish all the testing and qualifications for brain surgery. The testing process was honestly more emotional and draining than the brain surgery itself was. The most drastic thing I had done at that point in my life was get my braces removed. I went from 0-9000 in medical treatments overnight and I was terrified. I had no idea what was in store for me or anyone else that had undergone brain surgery, no matter whose social media I checked. There were so many options for brain surgery too and there wasn’t any idea of which one I was going to have until I got much closer to the surgery itself.
I had to have multiple EEGs, MRIs, CT scans, cognitive testing, blood work, you name it, just to make sure my brain and body could handle the surgery. During the testing, my epilepsy team was able to determine where my seizures started in my brain, how many types of epilepsy and seizures I have, what triggers the seizures, and the fact they have NO IDEA what started my epilepsy (I have idiopathic epilepsy), how long I’ve had it, and that this all can undergo surgery. It wasn’t a guarantee I would qualify, even if I went through all of the testing, but thankfully, my type of epilepsy(sies) did qualify.
I ended up getting the RNS (Responsive NeuroStimulator by Neuropace), which is essentially a pacemaker, designed for patients with focal seizures (one part of the brain active) inside your brain that detects seizures and sends a pulse out to stop them from spreading. It sounds way scarier than it is, honestly! It’s an outpatient procedure and you usually go home the next day from it. You can’t feel it go off when it needs to stimulate your brain or it is sitting in there. You can’t feel it from the outside of your skull, and once it’s in there, you just have to get the battery swapped out every so often, like a pacemaker.
Finding out this was an option for me, even as scary as it was to do, was such a relief for someone who doesn’t have meds work for their seizure control. Even if it does sound horrifying, if it’s offered to you… please, please accept it! I hated shaving my head for it, but my hair came back and came back prettier, and my seizures have reduced by 80% three years later.
Sharing My Story
One of the best parts of going through brain surgery was meeting my neuropsychiatrist who ended up telling me he meets tons of people with epilepsy who have been in similar, dark mindsets like I was when I first met him. He told me I wasn’t alone in my thoughts and emotions, but a lot of people aren’t up to talk about epilepsy openly. He also told me they don’t know who to go to because they feel alone. After hearing that, knowing that was me who felt like I was the only person on this planet with epilepsy, even though there are over 65 million of us, I knew I needed to do my part.
My mom had been pushing me, for my own mental health, to make a page about epilepsy to help meet people who lived with it, but I had convinced myself no one wanted to hear about it. I was wrong. Going through the diagnostic process and brain surgery process without knowing someone else with epilepsy was lonely and pretty miserable. I’ve made it a personal goal to be open about everything I’ve gone through so no one else has to go through that. I will say having gone through this and opening up about it has really helped me connect with some amazing people in the epilepsy community, friend wise and professional wise. I can’t stress enough how important it is to meet others that go through what you go through, no matter the situation.
I don’t wish epilepsy on anyone, but if you do get diagnosed with it, come find those of us with it. It’s not the easiest thing in the world to live with, but it’s much easier when you find your extended epilepsy family out there I promise.”
This story was submitted to Love What Matters by Bree K of Temecula, CA. You can follow her journey on Instagram. Keep up with the What’s Shakin’?! Podcast here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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