Epilepsy Talk

Explaining Epilepsy to a Friend…  | November 26, 2021

Explaining epilepsy to a friend is no easy matter. Sometimes they may be scared. Some may be curious. Some may want to help. Some may want to flee.

But, obviously, those who care will want to understand you. For those friends, here are some brief epilepsy facts:

What is epilepsy?

It’s like a storm in the brain. Seizures happen when there is unusual electrical activity. Your brain cells are constantly sending out electrical signals that travel along nerves to the rest of the body.

These signals tell the muscles to move. During a seizure, a person’s muscles tighten and relax rapidly or stop moving completely. Seizures come on suddenly, and people who have them can’t control their muscles while they’re having a seizure.

If too many brain cells are sending signals at the same time, it causes an overload, and a person may pass out and shake all over. People who have epilepsy may have seizures only once in a while or as frequently as every day.

Is epilepsy a disease?

No, epilepsy is a disorder of the central nervous system, specifically the brain.

Is epilepsy contagious?

No, epilepsy is not contagious. You can’t “catch” epilepsy from another person.

Do many people have epilepsy?

In America, Epilepsy is as common as Breast Cancer, and takes as many lives.

Epilepsy affects over 3 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.

One in 10 people will suffer a seizure in their lifetime.

One in 100 people will develop Epilepsy.

What is a seizure like?

Most seizures occur without warning, although some people have a funny feeling, an upset stomach, or a weird smell or taste right before a seizure. This is called an “aura”. Others find that certain things may bring on a seizure, like stress, not getting enough sleep, flashing lights, hormones, food allergies and many other “triggers”.

Seizures can be subtle, causing momentary lapses of consciousness, or conspicuously with a sudden loss of body control. They’re episodic and unpredictable, and may occur as frequently as every day, or over a lifetime.

During a seizure, the person may fall down, shake, stiffen, throw up, drool, urinate (pee), or lose bowel control. Other seizures are less dramatic. Someone might just stare into space or have jerking movements in one part of the body.

While seizures can be frightening, in most instances they stop without intervention. Once the seizure is over, the person gradually regains control and re-orients themselves to their surroundings, generally without any ill effects.

Approximately 70% of people diagnosed with epilepsy have their seizures controlled with medication.

How is epilepsy diagnosed?

There are numerous epilepsy syndromes and each has its own symptoms, seizure types, causes, methods of diagnosis, outcomes and management. In diagnosing epilepsy, the presence of seizures is often the determining factor.

An eyewitness report of the event and the person’s own description of what happened prior to the event and how they felt afterwards can be your doctor’s best diagnostic tools.

All the tests the doctor might order are to gather specific data on the kind of seizures experienced and to confirm what is basically diagnosed through observation.

A neurological examination will be conducted that generally includes a test to measure the electrical activity of the brain [EEG]. This will help determine where in the brain the electrochemical activity that is generating the seizure activity is occurring.

Specialized imaging tests such as computerized tomography [CT] scans and magnetic resonance imaging [MRI] scans may be required, along with blood tests. For some, tests may require hospitalization while the seizures are observed and recordings taken during the event.

This kind of testing is not always called for, nor is it always conclusive. And in nearly two-thirds of the cases of epilepsy, a specific underlying cause is not identified. In these instances, the cause may be labeled “idiopathic” if the cause is unknown, or if the epilepsy is not associated with other neurological disease.

How is epilepsy treated?

Antiepileptic drugs are the mainstay of treatment for most people. There are now many drugs available, and a doctor may recommend one or more of these, based on several individual patient factors such as the type of epilepsy, the frequency and severity of the seizures, age, and related health conditions.

After starting a medication, close monitoring is required for a while to assess the effectiveness of the drug as well as possible side-effects. Early in treatment, adjustments in dosage are often required.

Sometimes, because of continued seizures or significant side-effects, it’s necessary to change to a different drug. For about two-thirds of people with epilepsy receiving optimum treatment, drugs are successful in fully controlling seizures.

For the remainder, although drugs may have a partial benefit, some seizures continue to occur. For some of these people, other treatment options may be considered, such as surgery.

With certain types of partial epilepsy, especially when it can be determined that seizures consistently arise from a single area of the brain, “seizure focus” surgery to remove that focus may be effective in stopping future seizures or making them much easier to control with medication.

Epilepsy surgery is most commonly performed when a seizure focus is located within the temporal lobe of the brain.

Other supplemental treatments are sometimes beneficial when medications alone are inadequate (intractable epilepsy) and surgery is not possible.

These include Vagus Nerve Stimulation, (like a pacemaker), where an electrical device is implanted to intermittently stimulate a large nerve in the neck. Among other options are the Ketogenic Diet — a high fat, low carbohydrate diet with restricted calories.

What do I do if I see someone having a seizure?

1. Stay calm

2. Ease the person onto the floor

3. Check for a Medic Alert bracelet

4. Remove anything from the area that might cause injury

5. Keep the airway clear by turning the person onto one side. If sitting, turn the head to the side – don’t try to move the person

6. Don’t put anything into the person’s mouth — they may bite their tongue, but will not swallow it

7. Loosen clothing around the neck, remove glasses

8. Place something soft under the person’s head

9. Don’t try to restrain, as you may cause a muscle tear or break a bone

10. Reassure the person and let them rest afterwards

11. Offer assistance in getting home

Is epilepsy genetically inherited?

If a parent has seizures, the likelihood of passing epilepsy on to their child is estimated to be about 6%, compared to a 1% or 2% risk of epilepsy in the general population.

Basically, unless both parents have a strong family history of epilepsy, the chances that any of their children will inherit the tendency to have seizures are quite low.

Can epilepsy be fatal?

People with some types of epilepsy who continue to have major seizures can experience injuries during a seizure from falling or hurting their head that may occasionally be life-threatening.

Very prolonged seizures or seizures in rapid succession, a condition called “status epilepticus”, can also be life-threatening. Status epilepticus can sometimes occur when seizure medication use is suddenly stopped .

Rarely, people with epilepsy can experience sudden death (SUDEP). These events aren’t well understood, although they are suspected sometimes to be due to heart rhythm, disturbances during a seizure.

The risk of sudden death is not increased for all types of epilepsy, but occurs more among people with major seizures — especially generalized tonic-clonic seizures (grand mal seizures) that aren’t well controlled.

Where can I find out more about epilepsy?

For children, one of the recommended books is: “My Mommy Has Epilepsy” — By Stacey Chillemi

For personal accounts, you might try: “Epilepsy in the Family” — By Suzanne Yanko

General accounts include: “Brainstorms: Epilepsy in Our View — Stories from Friends and Families of People Living with Epilepsy” — By Steven C. Schachter, MD

“Epilepsy: “Patient and Family Guide, 3rd Edition” —  By Orrin Devinsky, MD

And for a more complete list, go to: “Expanded Guide to Epilepsy Books for People of All Ages” https://epilepsytalk.com/2014/08/31/expanded-guide-to-epilepsy-books-for-people-of-all-ages/

For further information, contact the Epilepsy Foundation: http://www.epilepsy.com/ or call their Toll Free Helpline: 1-800-332-1000 where you can speak with a trained information specialist. (en Español 1-866-748-8008)

Calls are answered 24 hours a day, 7 days a week.

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  1. It’s not that friends do not care what happens to you WHEN THEY SEE YOU IN A SEIZURE,, but it is WHEN THEY FEEL THEY CAN INCLUDE YOU between the times they see you in a seizure, that they can only show concern if you are going to die while they watch you seeing what is happening when you’re in a seizure, not hearing nothing, or knowing what the hell is going on. I guess that is why 1 of my favorite hymns is WHAT A FRIEND WE HAVE IN JESUS. After 61 years I KNOW I can trust in him & his word. NO SEIZURE TO CELEBRATE THAT EITHER, Last year after 60 years on Thanksgiving Day I had a seizure. Only have had 5 since and 1 was in the hospital.

    Liked by 1 person

    Comment by James D — November 26, 2021 @ 9:26 AM

  2. Thank you. That is very good guidance. My family are in denial about my epilepsy and never discuss it. I find it rather irritating myself, that they have that attitude. I may send them this as it may help them to get a grip of their mother’s tonic-clonic epilepsy. I sometimes think they see it as me creating a drama!

    Liked by 1 person

    Comment by jorja111 — November 26, 2021 @ 9:43 AM

    • Having epileptic seizures is traumatizing experience many people would be shocked to accept, just like I resisted to believe until I saw myself seizing on video in the process of EEG/MRI diagnostic tests requested & required by my employer.
      Therefore, I can understand why my family would have hard time to understand the unexpected medical nightmare they had to encounter out of no where.
      Adding the social stigma associated with Epilepsy, it is NOT surprising to see why families & friends would have hard time coping with the neurological disorder.
      Therefore educating ourselves, families & friends is the best way to create conducive atmosphere around our seizures.

      Liked by 1 person

      Comment by Gerrie — November 26, 2021 @ 2:14 PM

  3. My family was in denial about my epilepsy from the get-go. (I was 10.) They never would say the “E” word and made me feel like a pariah.


    Comment by Phylis Feiner Johnson — November 26, 2021 @ 10:20 AM

  4. Reblogged this on Ken's Devotions.


    Comment by Kenneth — November 26, 2021 @ 12:23 PM

  5. The only time my mom ever saw me having a seizure, as I was waking up, she was there holding my hand and crying. I asked her what was wrong and she said, “I feel like I didn’t put you together right.” I ended up comforting her instead of the other way around. Great, Mom. Way to make it all about you.

    Liked by 1 person

    Comment by paleobird — November 26, 2021 @ 1:28 PM

    • I don’t think her tears were for her but for u, a mom seeing her love child in the grips of a seizure for the first time can be devastating. So i dont’ think it was about her, but about u.


      Liked by 1 person

      Comment by Zolt — November 27, 2021 @ 9:29 AM

  6. Actually, if my family acknowledged my epilepsy, they would have had to take “ownership” of it.


    Comment by Phylis Feiner Johnson — November 26, 2021 @ 2:08 PM

  7. Thank you Phylis!….. I hope yer having a wonderful holiday!

    Liked by 1 person

    Comment by Aaron Holmes — November 26, 2021 @ 3:33 PM

  8. Hi Phylis, I don’t agree with some of the the stuff u mentioned about what to do when someone is in a seizure.
    Some of what u mentioned should only be done after the seizure. I recommend not coming in close contact with someone seizing because when i have a seizure and my arms are flailing u may get hit, unintentionally of coarse, but to try and move them to the floor or put a pillow under their head or loosen clothes is a no no in my book. Afterwards it’s no problem to do that.

    Liked by 1 person

    Comment by Zolt — November 27, 2021 @ 9:22 AM

  9. Zolt, I understand what you’re saying, but what if they come crashing to the floor and have a concussion as a result? That’s adding insult to injury. (Or the other way around.)


    Comment by Phylis Feiner Johnson — November 27, 2021 @ 10:02 AM

    • Zolt… as a person with epilepsy and CPR/First Aid experience, Phylis is correct. You never want anyone who is seizing to hurt their head and risk concussion. It’s fairly easy to avoid flailing arms if you are mainly concerned about the head. Gentle strokes, nothing in the mouth and turning in the side is all it takes. If it lasts more than 5 minutes the 911 call should be made. I usually call before because it takes them time to get there. I also disperse a crowd because of flailing limbs so others do not get hurt but I have not gotten hurt. I use soothing whispers and gentle strokes and it seems to work. Imagine😊

      Liked by 2 people

      Comment by Janet R. — November 27, 2021 @ 3:50 PM

  10. Phylis you are amazing. Thank you for being dedicated to everyone and to let people know how to inform others. You are wonderful.

    Liked by 1 person

    Comment by deb7007epilepsy — August 21, 2022 @ 2:53 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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