What does Epilepsy look like anyway?

As a Caregiver of two boys with epilepsy, I have done tons of research. I have read about different seizure types, symptoms, the brain and lobes involved, genetics, syndromes and the list goes on.

First, let’s go over the basics. There are over 40 different types of seizures. They are all either Partial/Focal or Generalized seizures. We will do a quick review of the basics!

Partial/Focal Seizures start in one area of the brain often called a focal point. The symptoms of this type of seizure depend on what area of the brain is having activity.
Breaking this down further, there are two main types of Partial seizures:

Simple Partial Seizure: Just on small area is involved. The person is aware that something is happening and will remember the seizure.   Depending on where it is occurring it can include strange smells/taste, weird feelings, hallucinations, visual flashing/colored lights, stiffness, numbness, tingling or jerking of a body part, intense fear, euphoria, abdominal pain, increased heart rate and others. Sometimes a simple partial seizure is called an aura, when it happens as a warning of a bigger seizure that follows.

Complex Partial Seizure: A larger part of the brain is involved. The person is not aware of what is happening and will not remember the seizure. Depending on where it is occurring the person may wander, pick up things or pick at clothing, smack lips, cry, scream, repeat words that don’t make sense, mumble, make repetitive movements without purpose (called automatisms) as well as having same type symptoms as the simple partial.

Generalized Seizures start in the whole brain at the same time. The person will not be aware of what’s happening and will not remember, with exception to the myoclonic.

Absences: The person may stare blankly, chew or have lip smacking eye lid fluttering usually for a few seconds and go back to what they are doing. This seizure is often thought to be daydreaming and is easily missed.

Tonic: The person experiences sudden body stiffness without warning if they are standing they will fall (usually backward) and can injure the back of the head. They may bite their tongue or cheek. the seizure is generally very brief and recovery is quick.

Clonic: The person experiences muscles will contract and relax rhythmically. The breathing is likely affected and they may sound noisy while breathing or stop breathing. The skin may become pale or even turn bluish in color and they may lose bladder/bowel control.

Tonic Clonic: The person experiences both the Tonic and the Clonic described above. This seizure is generally the most recognized seizure in epilepsy.

Myoclonic: The person experiences quick muscle jerks, often shortly after waking up. This seizure type is classified as generalized, although the person is conscious and aware that it is happening.

Atonic: The person experiences a sudden relaxation of the muscles and often will fall (usually forward) and this seizure is also known as a “Drop Attack.” The seizure is generally very brief and recovery is quick.

Now that we have that covered let’s talk about how it feels. I have seen many types of seizures but I have never had one. I can only imagine what it must feel like, research the subject, ask the boys and others what they feel. So I did just that.

Simply put, if a seizure is a Simple Partial or Myoclonic the person knows it’s happening and can respond. They will remember what happened. If it is another type of seizure the person will likely not remember much if anything that happened. They may seem confused, angry or even just want to sleep. Most people with epilepsy report that after a seizure they are tired and don’t want to be asked a bunch of questions. They may have pain in the body due to injury or muscle spasms. They may also know that they are missing time and that can be very frustrating. So, none of us that have not experienced seizures have the right to judge how they should feel, and the best thing we can do is let the person just relax.

I cannot imagine what it must feel like to experience refractory seizures, but I do know what it looks like.

 

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