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 negative side-effects
What most people don’t realize is that a drug prescribed to treat the condition can have 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 an AED (anti-epileptic drug) Many have a bad reputation for causing moments of uncontrolled anger or change in mood, For people to be aware of side affects is showing that you understand and accept the person for how they are. Most AED’s may be great at reducing seizure activity, but for some with epilepsy, it brings on a lousy list of side-effects.
Several epilepsy medications can cause side effects of feeling overwhelmed with anxiety and nervousness. You can have 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 thoughts. I personally also struggle with poor memory. I could go on and on.
Epilepsy is challenging as a whole, but epilepsy medications can cause even more substantially challenging symptoms.
2. The grueling game of trial-and-error
Epilepsy is a highly individualized condition, therefore meaning, there is no one treatment that works for all.. 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 what works for them. It is grueling and tiresome trying to discover what works. It can take years. In my decades-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 seizures.
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 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 , depression can occur. 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 my personal experience , my mental health can sometimes be negatively impacted whenever I experience severe seizure symptoms Depression, anxiety, and stress can overwhelm me. At times like this i try to be positive so having positive people around also helps this.
4. Epilepsy can be invisible to the outside world
Most of the time, epilepsy is an invisible condition. That is, until it appears unexpectadly. 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 point, I experience myoclonic jerks most days, for those that know me become aware of me and my behavioral changes well enough. Sometimes, there may just be a slight jerk in one limb which i can almost hide, other times there will be numerous limb jerks in a row. People that are not aware look at me and probably wonder what is going on. I find my myoclonic jerk seizures challenging and on many occasion upsetting as it stops me from doing things.
Others need to understand this because those who have epilepsy can sometimes look completely fine on the outside. However, we are battling 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 good 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 its gospel. I learned this years later after my 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 notes, showed no emotions, scribbled me a prescription without explaining any side effects, and sent me on my way.. This was followed by a second neurologist who was eager to listen to my feelings, thoughts and suggestions, however wrote a prescription and sent me on my way, until the next appointment. I had to learn myself what worked for me.
This was the case until i met my current neurologist. He has shown a lot of interest, listened to my problems, changed my medication and is still offering suggestions of trying a different drug to treat the myoclonic jerks. I haven’t had a grand mal seizure for years thanks to this neurologist.
The trial and error, finding the right neurologist is a mine field and can be quite frustrating.
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 have side effects and 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.
