‘Living Well with Epilepsy’

Isa picked up a book (same name as this post’s title, by Carl Bazil) from the local library that I just quickly read through… and felt the need to jot out a few quotes for myself if not others.


In any case, epileptic neurons (or more likely pathways) tend to spurt a lot more transmitter, and far more frequently than they should. As a result, millions of other, normal neurons, caught up in the commotion, begin to fire. If nothing stops it (there are, remember inhibitory pathways), soon large parts of the brain are triggered and aroused: a single spark, then a flame, and finally a forest fire. In a tonic-clonic (grand mal) seizure, every single neuron is firing simultaneously, a massive lightning storm thundering through the head, so the person cannot think or feel, and all of his muscles are commanded to violently contract out of control.

One of the most common misperceptions about epilepsy is that it is a single disease. In fact, epilepsy actually includes a wide variety of conditions that have one thing in common: the brain malfunctions spontaneously, then returns to normal. Usually this means entirely normal…

TONIC-CLONIC SEIZURES (this is what I have been diagnosed with)

These classic “grand mal” seizures are what most people think of when they hear seizure and are also how epileptic seizures are most commonly depicted by the media. First muscle tone increases tremendously throughout the body (the “tonic” component). The person will fall, and his back may arch with the force of the muscle contraction. The forceful contraction also involves the chest and diaphragm, such that a loud outcry usually occurs as air is forced from the lungs. This usually lasts a few seconds, then the limbs begin to twitch rhythmically and together (the “clonic” component). The twitching may become faster and faster before suddenly stopping, usually within a minute. There may be foaming at the mouth as secretions are forced out by the sheer force of the contracting abdominal and chest muscles. Similarly, urine or feces may be forced out. The seizure is followed by extreme exhaustion, as the overworked brain shuts off and the person lies still, but unresponsive to the world.

Stress, sleep deprivation, and other potential influences on seizures are a part of life. As with all people, there must be a balance between avoidance of factors that could worsen seizures and living a full life.

WHAT TO DO IF I HAVE A SEIZURE (for anyone that wants to know what to do if I have a seizure when I’m with them!)

The most important thing to do if someone is having a seizure is to prevent him from harm. If he is falling, gently get him to a bed, sofa or floor. Prevent injury from objects around him. Do not attempt to place objects in the person’s mouth in a misguided attempt to keep the person from swallowing his tongue. It is actually impossible to swallow the tongue. This practice has unfortunately become commonplace, but actually places both the person having the seizure and the witness at increased risk of injury. The person’s teeth may be broken by biting the object, or the object could become lodged in the throat, interfering with breathing. Contractions of the jaw are extremely forceful during a seizure, so the well-meaning onlooker may also find himself with a severe bite to his hand. The tongue is, however, often bitten during a seizure; this cannot be prevented and will, in any case, heal relatively quickly.

If the person remains unconscious after the seizure stops, the safest position for the person is on his side. As secretions (saliva, vomit, blood) are frequently present during seizures, and the person will be unable to protect the airway, this position will allow secretions to drain and prevent the possibility of aspiration of fluids into the lungs. The person may be confused or even violent after a seizure. An onlooker should speak calmly and reassuringly and not try to restrain the person in any way (no holding or pushing), as this can increase agitation.

Most people with a known seizure disorder do not need to be taken to an emergency room after a typical, uncomplicated seizure. If injury occurs requiring treatment or if the seizure is prolonged, immediate attention may be required. In other cases, it is sufficient to simply allow the person to recover, review things that may have caused the seizure (did he forget to take medication?), and consider whether the treating physician needs to be called.

I may not have been too clear in any electronic communications with anyone (or over the phone for that matter… I just haven’t been too interested in being very sociable at all this month), but I was diagnosed with epilepsy, tonic-clonic (grand mal) to be specific. Most all of the description of grand mal seizure fits the bill for the three seizures that Isa was there for; we think there was a fourth at the neurologist’s office when I was having an EEG test the morning after they had me stay up all night (sleep deprivation)… but they didn’t tell us what I did and Isa wasn’t allowed to be in the room during the test.

The first two seizures happened within around 15 minutes of each other; the first when we had our pastor Steve and his wife Sharon over for dinner (Monday night several weeks ago) and the second in the ambulance on the way to the hospital. I don’t recall any of it but Isa said I made a moan/outcry, fell to the ground and balled up in a fetal position and changed from blue to ash white in facial color. I stayed in the hospital until I believe Thursday afternoon … but don’t recall anything up to Wednesday as I was intubated (not to mention restrained because apparently I was quite a violent and challenging one). I should point out that even though I don’t remember anything, I have been informed that I was quite the comedian and really was a different person in personality, which is interesting. I somewhat recall things I did and said between getting out of the hospital and the 3rd seizure but apparently my memory of this time is very spotty. The third seizure happened the following Sunday but I don’t recall much of anything either; apparently similar behavior as the first two seizures as well.

Only after this 3rd seizure (the doctors considered it #2 since the first two happened so close to each other) did I get prescribed medicine (Keppra), which seems to have done its job since I haven’t had another seizure (except for #4 due to totally no sleep for a scheduled sleep deprivation EEG test). Unfortunately, it seems it has given me restless leg syndrome which has kept me up at night (obviously… I’m writing this at 12:30 AM!) barely letting me get 5-6 hours of sleep. Hopefully this will be resolved soon.

I’m not even willing to go there about some other struggles since this has happened, but a week or so ago I really cried out to God something close to Psalm 143 … and have since then felt God’s answer through Isa, friends, and the Bible (Psalm 144):

Praise the Lord, who is my rock. He trains my hands for war and gives my fingers skill for battle.
He is my loving ally and my fortress, my tower of safety, my rescuer. He is my shield, and I take refuge in him. He makes the nations submit to me.

O Lord, what are human beings that you should notice them, mere mortals that you should think about them? For they are like a breath of air; their days are like a passing shadow.

I will sing a new song to you, O God! I will sing your praises with a ten-stringed harp.
For you grant victory to kings! You rescued your servant David from the fatal sword.
Save me! Rescue me from the power of my enemies. Their mouths are full of lies; they swear to tell the truth, but they lie instead.

May our sons flourish in their youth like well-nurtured plants. May our daughters be like graceful pillars, carved to beautify a palace.
May our barns be filled with crops of every kind. May the flocks in our fields multiply by the thousands, even tens of thousands,
and may our oxen be loaded down with produce. May there be no enemy breaking through our walls, no going into captivity, no cries of alarm in our town squares.
Yes, joyful are those who live like this! Joyful indeed are those whose God is the Lord.


3 responses to “‘Living Well with Epilepsy’

  1. I’m a friend & collegue of one of your online blogger friends, Jim Lehmer, who gave me the link to your post. I’m sorry to hear about your diagnosis. We went through a very challenging time when our son was diagnosed with epilepsy. I just want you to know that you have folks you’ve never even met praying for you and your family. One thing that helped me was the eCommunities on the Epilepsy Foundation website – http://www.epilepsyfoundation.org. They acted as an online support group for me. You might check it out if you get the chance. Take care, and remember that we walk by faith, not by sight…

  2. Wow! The immediate violence of the seizure descriptions is incredible. I’m just blown away by how the body reacts to such stimulus. I pray … – td

  3. Thank you Jennifer… I’ll have to check out the eCommunities on the website, and probably also for my wife.

    I’m finding strength in new ways, and some of it challenging to say the least. Especially in the concept on not by sight – or not by my own control. Thanks for the prayers.

    Tim-saying thank you will never be enough… but still – thank you.

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