The 10 Most Common Epilepsy-Related Questions

June 24, 2024

The 10 Most Common Epilepsy-Related Questions

I had two main goals when I started Epilepsy Warrior Moms. The first goal was to help people with epilepsy (and their families), by providing them with information about the condition and how to manage it. And the second was to raise epilepsy awareness among the population of people that don’t have/know someone with epilepsy, and help everyone understand it a bit better.

I feel as though I accomplish the first goal in most of my posts. So I wanted to dedicate this post to the second goal, helping people with no personal connection to epilepsy understand the condition.

And I thought the perfect way to do it was by answering ten of the most common epilepsy-related questions.

#1 - What is epilepsy?

Let’s start off with the most basic question in regards to epilepsy… What is it?

Simply put, epilepsy is a neurological condition that causes people to have seizures. But there are many different “types” of epilepsy out there, and depending on which variation someone has, their symptoms can vary quite a bit.

Epilepsy can affect people of any age, with certain types starting in infancy. And it can also start at any age. Some types are controllable, while others are almost untreatable. But even though epilepsy can be manageable, it’s worth noting that the condition is technically incurable.

#2 - What causes epilepsy?

The most common follow up question to “what is epilepsy” is usually “what causes it”. And the answer is, many things can cause epilepsy! Such as…

Brain tumors
Genetic defects
Brain injury
Infections (which is the most common cause)
Strokes

And in some cases, there's no identifiable reason as to why the person is struggling with epilepsy.

BUT, I want to mention that epilepsy is not contagious. I talk more about why this fact is so important in my article about epilepsy stigmas. For now though, just remember that epilepsy can’t be spread to other people.

#3 - What are seizures?

This might seem like an odd/basic question at first glance, but there’s a lot that goes into answering it. Because many people who don’t fully understand epilepsy and seizures, misunderstand what seizures actually are.

The first misconception about seizures has to do with what they look like. The media would have you believe that all seizures look like violent convulsions, and while certain types of seizures do appear like that… Sometimes they look like nothing at all, sometimes they appear as a simple twitch of an arm or leg, and they can even happen in your sleep.

And the second misconception has to do with the relationship between epilepsy and seizures. Many people wrongly assume that if you have seizures, you must have epilepsy. But actually, there are many reasons a person might have a seizure. Like…

A brain injury
A fever
A brain tumor
Or even PNES

As you can see, some of these causes are the same as the causes for epilepsy. But this just means that a person could sustain an injury that results in seizures without epilepsy, and they could also sustain a brain injury that leaves them with epilepsy and seizures.

So with all that said… seizures are technically defined as bursts of electricity that go unchecked within the brain. And usually these bursts will have some sort of effect on movement, consciousness, etc.

#4 - How do you get diagnosed with epilepsy?

Getting diagnosed with epilepsy can be a complex process for some, and an easy one for others. And it can follow a variety of patterns.

Usually, the person in question would’ve had at least two seizures that don’t correlate to a known cause. They’d obviously report this to their doctor, who would start to suspect epilepsy if there’s nothing else going on with the patient that would be causing the seizures. And once epilepsy is suspected, there are a variety of tests that a doctor can do to confirm the condition.

The most common test that’s used to detect epilepsy is an EEG. This test is performed by attaching small electrodes to a person’s scalp, and then monitoring the brain activity of the person. Ideally, the patient will have a seizure during this process; but even if they don’t, doctors can usually detect specific brain waves that are consistent with epilepsy.

This test can be done while the person is awake or asleep, at home or in a doctor’s office, and with or without certain seizure triggers. For example, my daughter’s old neurologist would always have her come into the office sleep deprived for the EEG. And they would also have her stare at flashing lights while blowing on a small fan, to induce a seizure.

Other tests that can be used to diagnose epilepsy include…

CT scans
MRIs
PET scans
Blood tests
Neurological exams
And genetic testing

#5 - How do you treat epilepsy?

Once again, the answer to this question is a long one. Because depending on the specific case of epilepsy, the treatment can vary quite a bit.

The most common treatment for epilepsy is anticonvulsant medication. But there are many different types of medications out there. Personally, my daughter has been on Depakote, Keppra, clonazepam, and Ativan in the past. But those are just a few examples of the wide variety of medications out there.

Usually the medication that’s chosen will depend on the frequency, severity, and type of seizures that person is having. But it can depend on other factors as well; such as gender, age, and whether or not the person wants to get pregnant.

And sometimes, multiple medications will be used together in order to stop the seizures. Combining the medication does come with a certain set of risks, but sometimes it’s necessary to gain and retain seizure control.

Aside from anticonvulsants, other treatments can include…

Surgery (isn’t always applicable)
VNS (Vagus nerve stimulation)
Diets like the ketogenic diet
Avoidance of seizure triggers
And even certain types of exercise, like yoga

#6 - What kind of doctor treats epilepsy?

Primary care physicians can treat, and sometimes even diagnose, epilepsy. But many people with the condition prefer more specialized care. Specifically if their seizures are hard to control, or the cause of their epilepsy is still unknown, etc.

In this case, the person will either seek out a neurologist or an epileptologist (who is a neurologist who has received specialized training in epilepsy-related care for one or two years). An epilepsy specialist, or epileptologist, is usually ideal. But they can be hard to find and book appointments with, depending on the area where you live.

#7 - Is epilepsy/seizures painful?

Surprisingly, seizures themselves are not usually painful in any way. Therefore epilepsy is not necessarily painful either. However, certain circumstances that surround epilepsy and seizures can be painful.

For instance, if a person is having a tonic clonic seizure then they will likely experience pain and soreness afterwards. Both from potential injury, and from their body being so tense during the convulsion.

And furthermore, many anti seizure medications can come with uncomfortable side effects. Such as headaches, dizziness, abdominal pain, nausea, and more.

#8 - Is epilepsy deadly?

Sadly, epilepsy can be deadly. In fact, it’s estimated to double, or even triple your chance of death in the US. And in countries where it’s harder to get the condition treated, these rates go up even more.

But the good news is, since the average person’s chances for death are relatively low until they reach old age, people with epilepsy still have very good survival rates! And most will live a “normal” length of time.

When epilepsy does turn deadly, it’s usually because of one of a few things…

An injury caused by a seizure; such as if a person hit their head during a convulsion, or if they drowned while seizing.
Status epilepticus (which is when a seizure lasts for longer than thirty minutes)
Severe side effects from anticonvulsants
Suicide
And SUDEP (sudden, unexplained death in epilepsy)

#9 - Can people with epilepsy get pregnant?

Most individuals with epilepsy can have children, but women with epilepsy can have more issues than men when it comes to reproductive matters. Since many anti-seizure medications can actually have negative effects on the baby.

For instance, if the mother is taking valproic acid during pregnancy then there’s an increased risk of the child having lower IQ, verbal impairments, autism spectrum disorder, and MCMs (physical birth defects). But other medications have been linked to these things as well.

So in many cases, the mother in question will work with her care team to switch to a medication with lowered risks. But this can lead to the mother having increased seizures during pregnancy, if her body doesn’t respond well to the medication. And of course, certain types of seizures can pose a risk to both mom and baby.

#10 - How common is epilepsy?

I thought the perfect way to wrap up this post is to talk about how common epilepsy actually is. And the answer might surprise some people…

Epilepsy is actually one of the most prevalent neurological diseases in the world, with around 50 million people suffering from it! In the US alone, almost 1 in every 100 people have it. And it’s even more common in countries with less income.

In fact, because so many people in middle/low income countries have epilepsy, an estimated 70% of all epilepsy patients could be living without seizures if they only had access to treatment. But I go into more detail about the economics of epilepsy in this article, if you’re interested.