Epilepsy: What is it and Can I Catch It? (No, You Can’t)

I really enjoyed Jane’s posts about Nicole’s conditions and thought I’d do something similar about epilepsy.  Plus, since Robert is doing his own educating about epilepsy, I was inspired to do a little educating about it too.

First, the facts:

What is it?

Epilepsy is a medical condition that produces seizures (it’s also sometimes called a “seizure disorder”). Seizures are caused by an abnormal surge of electrical activity affecting all or just a part of the brain. If a person has two or more unprovoked seizures they are considered to have epilepsy. Epilepsy does not discriminate and affects all races, both sexes and is found in all countries.

Epilepsy is not a mental illness nor does it cause mental illness and epilepsy is not caused by demons (as was thought 3,000 years ago).

Depending on the source, between 2 and 3 million people in the United States have epilepsy and, approximately, 50 million people worldwide have it (according to the World Health Organization). Epilepsy can be treated in approximately 70% of the cases (which means a person is seizure free for five or more years while on medication). 75% of those cases can eventually be taken off mediation. Ten percent of patients have uncontrolled epilepsy even with medication or other medical means such as surgery (this is the category Robert falls into).

How do you get it?

Don’t worry, you can’t catch it.

For six out of 10 people with epilepsy there is no known cause. For those four out of 10 other people, the cause could be a brain tumor, a blow to the head, loss of oxygen or trauma during birth or a stroke that deprives the brain of oxygen. High fevers in very young children can also cause a seizure.

We don’t know what caused Robert’s epilepsy but, according to our mom, he didn’t have an easy birth. Mom broke her tailbone while in labor with Robert and the doctor had to use those barbaric clamps to pull him out (we’ll never know why they didn’t just do a C-Section since there were obviously some issues with him wanting to come out!). Finding out what caused Robert’s epilepsy is not really important to me. I’d rather concentrate on helping him now than looking backwards.

What do seizures look like?

Seizures can be as simple as what looks like a brief lapse in attention to muscle spasms or convulsions. Robert’s seizures have changed over the years. When he was a child, he started by having Petit Mal seizures (also called Absence Seizures which are the lapses in attention) but then developed Grand Mal seizures (also known as a Generalized Tonic-Clonic Seizure) and involve muscle convulsions and unconsciousness (which usually means falling down if the person is standing). It can also make the person lose control of their bladder during the seizure which happened to Robert several times when he was growing up and in school. Both of these types of seizures involve the entire brain.

Robert now also has Complex Partial Seizures which involve only a portion of the brain and presents itself with fidgeting, lip-smacking, head nodding and other repetitive movements (Robert moves his right hand a lot or tugs on his clothes). He doesn’t have the convulsions any longer but he often times will fall down. He wears a helmet to protect his head when he falls and I tend to walk slightly behind him when we’re together so I can catch him when he’s going down.

There are six different types of the Generalized seizures and three types of the Partial seizures, all with slightly different characteristics of the seizures. A person can be groggy after a seizure or they can completely aware once it is over. Robert tends to be back to himself as soon as the seizure passes although he does not remember having them and can only be convinced he had one if he is lying on the ground when the seizure is over. If Robert tells me he didn’t have a seizure (even though I may have just witnessed it), I (usually) won’t argue with him (sometimes I can’t help myself!). There’s really no point in upsetting him since it’s important to him to believe he doesn’t have very many seizures. I record what I witness and the neurologist gets as much information as we can give her.

Do you know someone with epilepsy?  Have you ever witnessed a person having a seizure?  I’d love to hear your personal experiences with epilepsy.

Avatar of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

3 thoughts on “Epilepsy: What is it and Can I Catch It? (No, You Can’t)

  1. Avatar of LilianaLiliana


    Thanks for sharing. I love that we learn so much on this website not only about each other, but about conditions that surround us.

  2. Avatar of JaneJane


    I am humbled that I was the one that inspired you to do this. I am still going to do one on EDS but just haven’t had the chance to read about it and write.

    Thank you so much I have such a better understand of the illness now. You and Robert are both special people.


  3. Trish

    Thank you Liliana & Jane! I’m happy to know the information about epilepsy helped you have a better understanding about it. I’m going to do a few more “informational” type posts and will put them on my website (www.robertssister.com) and here as well.


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