living with epilepsy (1)

My Experience Living with Epilepsy

This is a personal blog about my experience living with Epilepsy, how I’ve come to terms with it, how I manage it and how I’ve used it to empower me to take control of my health and help others to do the same!

I am also going to popping in with little bits of information, both factual and subjective: based on my own experiences.

What is Epilepsy and how does it work?

What is Epilepsy (1)
  • Epilepsy is a neurological condition causing chronic seizures in a person or animal (yes, animals can have it too ☹).
  • There are SO MANY different types of epilepsy that happen for different reasons, at different ages, with different triggers.
  • There are many different types of seizures that an epileptic person can have, ranging from mild twitching (which is usually hardly noticeable) to full grand mal seizures (what you expect when you think of a seizure), to someone seemingly going brain dead for a few minutes (called an absence seizure where the brain sort of blacks-out instead of lighting up).
  • An epileptic person may only suffer from one type of seizure, or all of them.
  • An epileptic person may (but not always) get an “aura” or a feeling that they have a seizure coming on. It can be a different sensation for everyone: some people get nosebleeds; other people experience a sort of brain fog.

My “aura” that lets me know I may have a seizure is my brain feeling swollen in the morning, and my inability to sustain a conversation without forgetting what I am saying every 30 seconds. (I will literally be in the middle of a sentence, completely blank out and if there wasn’t someone in front of me staring at me like “are you going to finish?” I probably wouldn’t even remember that I was saying anything at all.)

So, to start with my opinions: living with epilepsy [email protected] sucks!

Sorry for the lack of positivity but it’s the truth, because to live with epilepsy means that at some point you have to admit that you cannot control your body-and for most people, that’s the ONLY thing you really have control over.

At any point in time, I might have a big or small seizure, or I may just be on the brink of a seizure all day which leaves me too twitchy to even hold a conversation, let alone to physically do anything.

In this state, I have to lay in one spot and avoid doing anything or touching anything that I don’t want to accidentally break-often times I cannot even eat without choking and so I just can’t eat. I am lucky though because I only have 1 day like this maybe every other month.

When I was younger it was even worse-I might have ten seizures in a single day. I was medicated to the point of being brain dead, extremely depressed and suicidal…and my doctor had no clue what was going on, why I was having seizures, what was triggering them and why the medication never seemed to work fully. He honestly didn’t even seem like he cared-he just started doubling up my medications.

What does it feel like to have a seizure?

So, I am sure it feels different for everyone, but for me, having a full grand mal seizure (the flailing ones, for lack of a better description) is…interesting.

I tend to get frustrated by my seizures and try to stop myself from having them by doing breathing exercise or stretching.

Because of this, I often black out AFTER I start seizing, whereas most people will first faint or black out, and THEN start seizing. Because I put so much effort into avoiding having a seizure, I usually feel my body start seizing before I actually pass out and it’s definitely an “out of body” experience for me because it’s a moment when I sincerely feel the separation of my self and my body.

When I wake up from a seizure, I always have skull-splitting headache, I never remember having a seizure at first, and sometimes I may not remember the last 5-10 years of my life for up to 24 hours after a seizure.

It’s incredibly scary because I can wake up naked on the bathroom floor (if I fall out of the shower having a seizure, for instance) with no memory of where I am (even though it’s my own house) and I start wondering if I’ve been kidnapped or something.

Okay back to my process…One day when I was 19, I almost lost my job because my newest dosage of medications (a total of 10 pills a day) left me so numb and brain dead that I stood staring at a white wall for 15 minutes and completely forgot to even go to work.

When I snapped out of it and realized I was missing work, I threw a HUGE fit: I screamed, cried, yelled and punched walls out of frustration, anger, resentment-everything!

I felt like EVERYTHING was working against me: I was a young adult, I was supporting myself through college, dealing with the stress of work, school and my toxic family WHILE my body is involuntarily seizing, my doctor is putting so little care into my treatment, and I have no clue what to do besides rely on my inattentive doctor. And now my medication (which wasn’t stopping my seizures) is compromising my ability to support myself and pay for school. I was so freaking pissed off and frustrated!

How was I supposed to succeed at all?

I had so many ambitions but I didn’t even have the average baseline level of health, let alone the support and resources necessary to accomplish all that I wanted to achieve.

I needed help and literally, no one was helping me.


Well, surprise surprise: no one came to help me or even be there with me in this difficult time. I realized that it was up to me to give myself the optimal level of care and attention I needed to achieve health first, and all of my life goals after.

So once my pity party was over, I washed my face, walked down to the dollar store and bought a stack of college ruled notebooks, took them home, threw away my medication (which I am not recommending because that was a hard come-down) and started journaling EVERYTHING-LITERALLY EVERYTHING!

What I ate and the quality of my nutrition, where I went and what the environment was like, how active I was and what fitness routines I added, how my moods were and how in control of them I felt, how much stress I felt I was under and how much sleep I was getting, what I was dreaming about and how frequently…I literally journaled everything about my life for over two years.

I was determined to find patterns, triggers or explanations as to why I might be having seizures and how I might avoid having them…AND I FOUND THEM!

(Mind you I had A LOT of seizures, hospital bills and concussions in the process so this was definitely the DIFFICULT route, NOT the ideal route-I just didn’t know a better way).

What I ended up finding was that things that affected my gut health (such as alcohol, sugars, and trans fats), and things that affected my hormone balance (such as menstruation) were triggers for my seizures, and once I realized that I started researching different types of epilepsy.

(Please take the time to read my Eating for Gut Health Blog-a brief compilation of what I’ve learned and practiced.)

I quickly discovered Catamenial Epilepsy which PERFECTLY described what I was experiencing: I did not start having seizures until puberty, I tend to have seizures around ovulation and menstruation…if something in my diet, sleep habits or stress levels affects my hormone balance I will have a seizure. As I age and my hormones are less wild, my seizures become less and less.

I took this information to my neurologist and, despite the fact that he specialized in epilepsy, he looked at me and said “I didn’t realize there was a female-specific type of epilepsy” …I was deflated and disappointed-he had been treating my condition since my adolescence and had he known what Catamenial Epilepsy was, he would have identified it immediately when he heard I had no history of seizures until my period started.

My neurologist collaborated with a female colleague at this point, to run the necessary testing before they both concurred with my own diagnosis of myself-this of course made me feel proud of myself because of the work I did, but also scared me…I was almost 22 years old, no college degree yet, definitely no medical training, but I found my own diagnosis in 2.5 years-all the while my well-seasoned, specialty neurologist who had been working with me (and medicating me) for almost 8 years at this point had NO CLUE that what I was suffering from even existed.

It immediately exemplified to me first, the lack of attention to women in the medical industry and the refusal to acknowledge female health differently than men; and second, the need for not only myself but other people to work WITH their doctors, instead of under them. I realized it’s unlikely and probably impossible for your doctors to know and remember everything, and it also feels more empowering when you take responsibility for your own health as well.

Because of this experience, I chose to continue forward without medication and in managing my epilepsy naturally. That’s a decision I made personally for myself (though it was NOT recommended by my neurologist), and frankly it’s one that I am lucky to be able to make because some epileptics cannot survive without medication.

How do I manage my Epilepsy naturally?

How do I manage my Epilepsy naturally (1)

So, because my seizures are largely induced by my gut microbiome or sex hormones being imbalanced, it’s extremely feasible to manage this with diet and exercise.

*This is not possible with every type of epilepsy*

Nutritionally, I avoid sugars and copious amounts of processed carbs. I do not do Keto because I do eat grains and legumes like quinoa and lentils, but my diet is low in things that are high in simple carbs like white flour-based treats, nearly all breads, fruits (which I simply don’t care for), white flour pastas and rices.

Reflecting on my old journals, I realized that I naturally have a distaste for these types foods and am always more likely to eat a carrot instead of an apple, or quinoa instead of white rice, which I interpret as my body’s intuition.

Nutritionally, I also implement a lot of healthy fats and probiotics. 

Polyunsaturated fats are known to be good for the brain, but they are also helpful to the balance of the gut microbiome, and help reduce inflammation (which is something I feel in the brain before a seizure). Probiotics help balance the gut microbiome as well, which not only helps with neurological functions, but also helps maintain hormone balance.

Physically, I stay active. I have to move somehow, every day to get my blood flowing or I am more susceptible to having a seizure the next day. Without my medication, I notice that I have an above-average ability to train hard and heavy than most of my peers. I am not sure if it’s related to my epilepsy but I have energy for days for physical training.

For the type of training, I do mostly weight lifting exercise, just out of preference for what it does to my physique, but I also implement cardio usually in H.I.I.T. workouts. The main thing for me is blood flow and sweat: these are things that help prevent build up of toxins and imbalanced hormones.

*If I feel sensitive to potentially having a seizure or even an aura, I do NOT do exercise that causes heavy breathing because I have noticed hyperventilation inducing seizures in myself.

Also because of this experience, I’ve worked tirelessly to educate myself on female health and hormones (even before becoming a fitness trainer) and as a personal trainer/ nutrition coach I largely work with women who suffer some sort of hormone imbalance or disorder as well.

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The experience of living with Epilepsy has been an exhausting, frustrating and disappointing one, to be truthful. It has exemplified so many issues in the medical industry for me, and has shown me how little care women can get at the hands of male doctors.

There are also so many things I’ve had to give up in life because of having epilepsy: the freedom of owning and driving any vehicles; the experience of pregnancy to term and giving healthy birth; the places I didn’t go and the people I didn’t meet because I was at home trying not to have a seizure instead of going on a trip with friends… even my desire to join the Navy when I was younger was squashed by the information of my having epilepsy.

It’s been such a hard thing to come to terms with: the fact that something that I cannot change, I did not do to myself, I cannot control or get rid of, controls my life in so many ways and I have to just learn how to live with it…

But learning living with Epilepsy has also benefitted my life greatly in so many ways!

The biggest thing it has changed in me is that it has forced me to learn how to do something very unnatural to my personality: admit that there are some things I can’t do, and there are some days when I need to slow down or stop.

If you know me at all then you know how hard I go at everything I do, and how much of a superhero I see myself as. I am definitely a “go-until-you-drop” type person, but you have to change that about yourself when you might drop into a seizure in the middle of the street or fall and break your jaw (Yep. Done it. It hurts.) 

Epilepsy has forced me to learn about my body and how to work with it, instead of fighting it or trying to numb it in some way.

You can’t fight epilepsy because you’re not in control in that way-you have to learn how to work with your body by determining what causes your seizures and how you can work with yourself to prevent or stop them.

For example, a big trigger for my seizures is an imbalanced microbiome of the gut (most easily caused by alcohol, sugars or fried foods) so if I feel an aura of a seizure coming on, I will immediately start consuming probiotic foods like kimchi, Greek yogurt or kombucha-this will usually prevent my seizure from happening.

Living with Epilepsy has also brought me closer to my mission and my clients-it’s allowed me to be a person who understands the difficulty of living with disease and disability; a person who knows from experience how careless doctors can be with women; a person who has lived an extremely demanding lifestyle and has still found a way to implement proper nutrition and exercise.

I always say “I work with the clients who need a little extra attention”, because I was a client who needed a little extra attention!

Everything I’ve learned in my process has turned me into the person who can help the clients that other fitness trainers don’t know how to take care of, or don’t want to spend the necessary time doing so. My journey has allowed me to connect deeply with my clients, understand them and give them a space where they feel respected, cared for and safe. Schedule a virtual coffee with me and let’s have a chat!

Finally, having epilepsy has kept me out of a ton of trouble because I spent a lot of my young adulthood trying to figure out my health-instead of partying constantly like my friends. At 21, when all of my peers were excited about being able to go out and drink finally, I was actively avoiding all substances out of fear of having a seizure in public.

I have also refrained from even trying any drugs (that are not marijuana) because I am not sure how they would affect my body, and I didn’t want to find out while I was out with friends (which is usually when narcotics would come up).

I am the child of generations of addicts on both sides of my family: addicts of alcohol, meth, heroin, cocaine and pain pills. My family is riddled with addiction, right down to nearly every single one of my siblings being a drug or alcohol addict.

Truthfully, who knows what type of person I’d be, or if I would also be an addict if I didn’t have epilepsy to keep in mind.

As much as it’s a pain in the a$$, my epilepsy has afforded me-at a young age-an opportunity most people don’t get until they’re 30 or 40 and feeling chronic pain: a reason to build a healthy relationship with myself and my body.

For that reason, I consider my epilepsy to be a blessing more than a curse. If I was given the option to go back and do life again, all the same but without epilepsy, I wouldn’t do it because I wouldn’t be able to be this same version of me.

This piece was written by Elexis Smolak CPT, CNC, founder of Adapted Fitness and Master Trainer. Learn more or schedule a virtual coffee at