Tuesday, July 26, 2011

Epilepsy: What is it and Can I Catch It?

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 3000 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 5 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 6 out of 10 people with epilepsy there is no known cause. For those 4 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.

There’s a lot to learn about epilepsy (I’m still learning myself) so come back for future posts on treatment, what to do when a person has a seizure, living with epilepsy as well as some of the social and economic aspects of epilepsy.

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.

4 comments:

Anonymous said...

I am 21, and I am an epileptic. The cause of my epilepsy is also unknown, but my flatmate has been a wonderful caregiver. Thank you so much for spreading the word about epilepsy, and for being such an amazing caregiver yourself.

robert's sister said...

Thank you for visiting! People don't know much about epilepsy so sometimes it can feel like a lonely condition. My brother has been through a lot through his life and I hope others with epilepsy can relate. I'm happy you have a wonderful caregiver. I'm curious if you were diagnosed as a child and if you have you found medication that works for your seizures? I'd love to hear more of your story if you'd like to share. Take care.

Rebecca Winton said...

Hi & thank you for your webpage & great information. Appreciate the research but also your simple honesty about yours & Robert's journey. Please tell him I said hello & he is now my new hero. I have epilepsy & I can't imagine it uncontrolled. I mean they are a little now but I will probably be able to see fewer with meds. Actually I hadn't had one in about 8 years & then all the sudden I had 12 in about 40 minutes. I have seizure storms, grand mal's (which are the worst). Seizing & mentally gone for 30 minutes then very slowly beginning to become aware of who & what I am. Where I am. The storms suck. Little convulsive seizures for 30 seconds to 2 minutes. They wear me out. Feels like I've run a marathon cuz of the muscle contractions. I have broken the ball in my shoulder socket, popped out 2 teeth & given myself soft tissue damage on my brain. The love of my life just found out her 21 year old son has it & then mine reemerge after so long. She is so very scared after witnessing them for us to even go into the bathroom. But meds help with both mine & my stepson's. So it seems a matter of taking responsibility taking meds & acceptance that this is the hand that has been dealt. If you are able & can reach out to my partner because you both are affected by a loved one wit it. You know better than anyone what she is going through. My email is bekwinton@gmail.com. Best wishes...

Trish Hughes Kreis said...

Hi, Rebecca,

Thank you for your kind comments about my website. I am so sorry about your seizure storms and your stepson's epilepsy. Robert has been having seizure clusters and they are terribly frightening! Please let your partner know that she will be okay but will be scared every single time. I have witnessed hundreds of Robert's seizures and they still get to me! Please take care and keep reading. I did recently publish a new book about caregiving which might be helpful to your partner. It doesn't specifically address epilepsy but she might find some of the information helpful. I don't mean this to be a self-serving plug but I believe in this book and it was written by 5 caregivers in all different situations.

Please keep in touch. Take care.

Trish