What Seizures look like and How to Respond

This weekend as we celebrate our country's independence, we are thankful for our freedoms and those who help make them possible. But we also think of the millions of Americans, like Adrian, whose personal independence is hindered by a health issue that is hard to control.

Adrian is still in recovery mode from his recent seizure but has been able to stay fairly active. Each one is so taxing physically and emotionally for him. It's been a long time since we have had to deal with this, and it is very frustrating. But we are not alone. More than 2 million people in the U.S. alone live with epilepsy - a neurological condition that affects the nervous system resulting in multiple seizures. It's complicated living when you can lose consciousness without warning at any time.

Here are some facts from Epilepsy.com:

• Epilepsy is the fourth most common neurological disorder and affects people of all ages
• Epilepsy means the same thing as "seizure disorders" 
• 1 in 26 people in the United States will develop epilepsy at some point in their lifetime.
• 150,000: Number of new cases of epilepsy in the United States each year
• Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
• 65 MILLION: Number of people around the world who have epilepsy
• ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
• 6 OUT OF 10: Number of people with epilepsy where the cause is unknown

Treating Epilepsy

It’s now been more than five years since Adrian had his first seizure. We know a little more about them now, such as they originate from the right frontal lobe of his brain, and his medications usually work, but…not always.

We have hoped and prayed and many times believed they were gone, yet we will never have 100% confidence that they won't return. 

We decided that our family and friends should be better prepared in the event that Adrian has another seizure or you happen to be around someone with epilepsy who has an incident.

Seizures present themselves in many different ways, and there are many different types. Sometimes the person just stares blankly for a minute or appears to pass out. The type of seizures Adrian has are more severe and include the convulsions that most people associate with seizures.

He has what are called TONIC-CLONIC SEIZURES, formerly known as “grand mal” seizures. They can be frightening to witness, but if you know what to expect, it may help keep you calm.

We put together this information explaining what can happen during a Tonic-Clonic seizure and how best to respond. Who knows, you may find yourself in a Starbucks or Panera Bread someday and be the one to help calm the situation when someone has a seizure...

What Tonic-Clonic Seizures can look like:

Based on the seizures I have seen, this is generally what happens:

• He turns his face to the left and typically falls to the left if standing, when the seizure begins.
• His eyes close as his body will stiffen, clench up and convulse for 1-3 minutes.
• There is often blood coming out of the mouth from clenching jaws that bite the tongue. Interestingly, Adrian's tongue doesn't bleed much anymore because there is a lot of scar tissue from previous seizures.
• Once convulsions stop, he may stop breathing for a minute and turn purple…yes, frightening!
• When breathing stops it is because his chest muscles have tightened during the “tonic” phase. So far, Adrian always begins to breathe again without CPR as this phase of the seizure ends.
• Seizures can cause loss of bladder or bowel control, but not often. 
• The "postictal state" is the brain's recovery period after a seizure that can last for minutes or days. For many, this is a time a confusion with headaches and exhaustion. 
• In Adrian's case, this is when it gets most difficult as he begins to yell, moan and wander around. He will resist anyone who tries to restrain him or hold him down and will show incredible strength. He has no awareness of who you are or that this is even happening.
• This postictal phase typically lasts more than 30 minutes for him, which can feel like forever.
• Most people with epilepsy do NOT have this extreme activity after the seizure, it is very uncommon.

How to Respond to a Tonic-Clonic Seizure:

Here are a few suggestions of things you can do to help if Adrian or someone else has a seizure when you are nearby.

• Most importantly – REMAIN CALM. This has happened before. 
• If you are close by when he begins to fall, try to catch him before he hits the ground or at least prevent him from hitting any sharp/hard objects.
• Look at a clock and note the time - try to time the active seizure but don't let that distract you.
• Remove any harmful or fragile objects from the vicinity around him and place a pillow or shirt under his head.
• CALL 911 –  Look for a Medical Alert card or I.D. bracelet 
• Take any children away from the room or area. Do not crowd around him.  
• Do NOT put anything in his mouth or try to give him water, food, etc.
• Turn his body to the side with his face pointing down to help him breathe better.
• Once the seizure is over, he may get up and walk around during the postictal phase. It's best NOT to restrain him before help has arrived. 
• Again, try to stay calm and speak to him reassuringly, but he will not remember any of this.  

This is a lot of information, but we hope you find it helpful. We are still learning so much about Epilepsy and how to live with it. The cruelness of this disorder lies in the total unpredictability of it. Yet, we have felt God's hand of protection each time a seizure occurred and pray that will continue. And we are thankful that even though these seizures have limited some of Adrian's freedom, he still gets up every time he falls down.