Epilepsy Talk

Explaining Epilepsy to a Friend | November 29, 2014

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.

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.

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.

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. Don’t give fluids until the person is fully conscious

12. 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.

How do I find an epilepsy specialist?

There are a number of resources that can provide guidance in seeking specialty care. Primary care doctors can usually provide a referral to neurologists in the area and may be able to identify those who specialize in epilepsy.

The Epilepsy Foundation can make a recommendation. And there are other specialists that you can contact, like hospitals and universities.

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.

 

To subscribe to Epilepsytalk.com and get the latest articles by email, simply go to the bottom box on the right, enter your email address and click on “Follow”.

 

References:

http://www.cdc.gov/epilepsy/basics/faqs.htm

http://www.epilepsymatters.com/english/faqexplaining.html

http://epilepsysandiego.org.s163008.gridserver.com/advocacy/

http://www.epilepsyaustralia.net/Epilepsy_Information/Epilepsy_explained/Epilepsy_explained.aspx#what

http://www.epilepsy.cc/index.php?option=com_content&view=article&id=60&Itemid=72

http://www.nlm.nih.gov/medlineplus/ency/article/000694.htm

http://www.epilepsy.com/node/986825

 

 

 


12 Comments »

  1. Reblogged this on Totally Inspired Mind….

    Like

    Comment by paulettemotzko — November 30, 2014 @ 5:03 AM

  2. My name is Paulette Le Pore Motzko and I am disability advocate and former director of The Epilepsy Foundation, then the Founder & CEO of The Epilepsy Connection. I will read more of your site and see what you are all about.
    Are you a doctor?
    You did a fantastic job on this piece and as someone who was diagnosed at 9 years of age and is 53 years young now; we need more people like you.
    I have a newsletter I created called “Your Epilepsy Resource Guide” I would love to email to you.

    Paulette L Motzko

    Like

    Comment by paulettemotzko — November 30, 2014 @ 5:09 AM

  3. Reblogged this on CareWare.

    Like

    Comment by careware — November 30, 2014 @ 8:39 AM

  4. I took a look at your site which I thought was really impressive.

    Nope, I’m not a doctor, just a writer who’s been writing (in advertising) about Health and Wellness for 12 years. First I did it for money, now I do it for love.

    Epilepsy is my cause and raison d’etre. I’ve had epilepsy for decades. (Now completely controlled.)

    After all those decades in advertising, I reached a point where I felt it was time to give back.

    So, that’s why I started “Epilepsy Talk”– to educate, inform, support and share. As you’ll see our “family” is quite supportive and caring.

    You’re welcome to be part of it and share any of my articles as long as it’s attributed. The more people who know the facts, the better. Don’t you agree?

    Welcome!

    Like

    Comment by Phylis Feiner Johnson — November 30, 2014 @ 10:47 AM

  5. The surgical staff had a very interesting way to explain the electrical activity for how a seizure happens. I may not say this correctly, so please forgive me if I error.

    Think of a dance line gone bad. The dancers are all in sync in the dance pattern movement side to side. All of a sudden one gets off sync. That effects the dancers neighboring. This then spreads to the dancers around those effected until all of them are out of sync in the dance pattern…and the seizure hits!

    Like

    Comment by Travis — December 3, 2014 @ 11:32 AM

  6. Great analogy Travis!

    I’ve always known it as “a storm in the brain”. But I like your description better!!!

    I can literally envision it. 🙂

    Like

    Comment by Phylis Feiner Johnson — December 3, 2014 @ 12:57 PM

  7. My dad was an electrician so you can only imagine how he explained it. He called it a ‘short circuit’ in the main breaker. All of the lights in the house may go out or perhaps the lights in one or two rooms only.

    Like

    Comment by Michelle Watts — January 13, 2015 @ 2:47 AM

  8. Well, Dad was ahead of his time. Newsweek referred to seizures as “A Storm in the Brain” quite recently! 🙂

    Like

    Comment by Phylis Feiner Johnson — January 13, 2015 @ 9:40 AM

  9. I would like to receive your email. What I just read on your website will help me to better describe my seizures, and also take better care of my health. I will be happy to tell others about epilepsytalk.com

    Like

    Comment by Judy Long — September 19, 2015 @ 3:10 PM

  10. THANK YOU Judy!

    That’s the best compliment I’ve heard in a long time.

    Welcome to the family!

    Like

    Comment by Phylis Feiner Johnson — September 19, 2015 @ 5:00 PM

  11. I have had Epilepsy for 40 years and I know the best thing to do is move things away from me and leave me alone.

    Like

    Comment by Tammy Wescott — January 10, 2017 @ 2:11 PM

  12. You might find this article interesting, Tammy.

    Is Your Home Seizure-Proof?

    https://epilepsytalk.com/2012/08/07/is-your-home-seizure-proof/

    Like

    Comment by Phylis Feiner Johnson — January 10, 2017 @ 2:45 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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