Awareness,  Epilepsy,  Personal

5 Things Everyone Should Understand About Epilepsy

Epilepsy is widely misunderstood due to lack of awareness. There are so many aspects to the condition that most are unaware of.

Have a look at 5 things everyone should understand:

1. Epilepsy medications can have significant negative side-effects

What most people tend not to consider is that a majority of medications prescribed to treat the condition can have incredibly significant negative side-effects themselves. Prescription medications can be a double-edged sword. They may work ideally at relieving one symptom, but simultaneously create chaos in other areas of the body. This is especially true with many epilepsy medications.

For example, anyone who lives with epilepsy has most likely been prescribed the AED (anti-epileptic drug) Keppra (levetiracetam). It has a bad rap for causing moments of uncontrolled anger and rage or change in mood, nicknamed “Kepprage” by patients who’ve experienced such symptoms. It may be great at reducing seizure activity, but for some with epilepsy, it brings on a lousy list of side-effects that make you want to be miles away from that medication!

Several epilepsy medications can cause side effects of feeling overwhelmed with anxiety and nervousness, difficulty sleeping, lethargy, weight gain, excessive hunger, or loss of appetite. Often, emotions swirl like a whirlpool inside, hair falls out, joints ache, sex drive can take a nose dive, and sadly, many struggle with suicidal ideation. I could go on and on.

Epilepsy is terribly challenging in-and-of itself, but epilepsy medications can cause even more substantially challenging symptoms.

2. The grueling game of trial-and-error

Epilepsy is a highly individualized condition… Meaning, there is no one treatment that works for all epilepsy patients. The brain and central nervous system are so complex and have so many aspects to them, treating the condition can be extremely complicated.

No two people with epilepsy are alike. One person with epilepsy may have seizures originating in the temporal lobe of the brain whereas others’ seizures may originate in their frontal lobe of the brain. Therapy is designed specifically for each person according to their needs and what works for one may not work for the other.

So always remember that epilepsy is a journey. Each patient has to use trial-and-error to figure out the therapy that works for them. It is grueling and tiresome trying to discover what works, and can take years. In my decade-long journey with epilepsy, I have tried several different medications and adjustments. I am still playing the game of trying to find the right combination of medications to put a stop to my relentless seizures.

  • Other therapies include:
  • Surgery
  • Neurostimulation devices
  • Dietary therapy
3. Mental Health takes a big hit

A big misconception about epilepsy is that it only affects your brain. That is far from the truth! Unfortunately, this condition affects the entire body in unexpected ways. One of the most understated negative effects is mental health.

Depression is a real symptom of epilepsy, as well as stress and anxiety. Serotonin is located in the central nervous system and is the “happy” chemical of your brain. This means that, when there is an imbalance of serotonin, depression becomes prevalent. The creation of serotonin and other essential chemicals for brain function are crippled. So be mindful and understand that anyone living with epilepsy is also enduring mental health challenges.

From a personal standpoint, my mental health can sometimes be negatively impacted whenever I experience severe seizure symptoms or have had a seizure. Depression, anxiety, and stress can overwhelm me. Utilizing positive self-talk and thought are great practices to overcome difficult circumstances.

4. Epilepsy can be invisible to the outside world

Most of the time, epilepsy is an invisible condition.That is, until it appears unexpectedly. There are many types of seizures. Each one causes different physical, emotional, and behavioral changes. Some people experience seizures that go unnoticed and last mere seconds. This can involve the jerking of a limb or staring off.

From a personal standpoint, I experience complex partial seizures almost every day, several times a day. Most people wouldn’t know that the seizure is taking place unless they knew me and my behavioral changes well enough. Sometimes, I will go blind in the right eye and am flooded with the feeling of anxiety that lasts for roughly 5-10 seconds. I still have the ability to hear and speak but am rendered unable to fully see, which requires me to stop what I’m doing until the seizure subsides.

Others need to understand this because those who have epilepsy can sometimes look completely fine on the outside. They don’t resign to dressing in sweats and have messy hair 24/7. However, we are battling back seizures and medication side effects on the inside every day! The condition is real and affects us in unimaginable ways and derails us whenever and wherever it chooses. With epilepsy, you never know how you are going to feel, whether it’s going to be a decent day or a day that you just need to stay in bed.

5. Medical Professionals aren’t always right

Just because a doctor says so, doesn’t mean it is the end all, be all. I learned this right out the gate following my epilepsy diagnosis.

The first neurologist that I was assigned to had no interest in my thoughts or feelings. He was laser focused on what was written on my chart, checked his watch like a jerk-reaction, scribbled me a prescription without filling me on what to expect involving side effects, and sent me on my way. A strong tone of authority radiated from him. Reminding me who was in charge. This was followed by a second neurologist who was eager to listen to my feelings, thoughts and suggestions but was just as eager to shut me down with what he believed would be best. After my diagnosis, I spent years in turmoil because I listened to my doctors defeatedly. I continued taking medications that they prescribed and adjusted them according to the doctors recommendations, all while suffering countless seizures and menacing side effects.

It wasn’t until I saw an epileptologist at the Cleveland Clinic that I was treated with the utmost respect, filled with even more knowledge about epilepsy and encouraged to study my condition (with discretion). He worked with me to try different epilepsy medications and adjustments. He gave me his opinions and asked me for mine. There were countless times that I walked out of the office holding back tears of joy because I finally had a doctor that felt like a friend or sidekick rather than a bully or a boss. It was only then that I felt a confidence that I might just get my seizures under control… If not entirely, at least significantly.

So sometimes doctors can get it wrong with epilepsy, and this can be very frustrating to a patient who is following doctors orders.

Bottom line, it’s important to remember that epilepsy is a complex condition and involves much more than just your brain. Mental health is impacted, medications prescribed are debilitating, all patients have to go through a grueling trial-and-error period to figure out what works treatment-wise, and sometimes medical professionals can miss the mark on the mission to subdue our seizures.

So if you know someone with epilepsy, make sure to be patient, compassionate, and offer a lending hand when possible. They have a lot on their plate served each and every day.

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!


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