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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References:

https://www.epsyhealth.com/seizure-epilepsy-blog/5-tips-for-telling-people-about-your-seizures

https://au.reachout.com/articles/telling-my-friends-i-have-epilepsy

https://www.epilepsy.com/living-epilepsy/epilepsy-and/young-people/talking-about-epilepsy/talking-friends-and-family

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

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

https://www.epilepsy.com/learn/about-epilepsy-basics/what-seizure

https://www.epilepsy.org.uk/info/what-is-epilepsy

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