Epilepsy Talk

Explaining Epilepsy to a Friend | May 7, 2020

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.

 

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

 

References:

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

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

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

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

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

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

 


26 Comments »

  1. Thanks, for this, Phylis. A good refresher.

    I notice one of the tags and paragraphs is What to Do if Someone is Having a Seizure. A friend is newly diagnosed so I am helping out with rides. Nowhere can I find information on what to do if your passenger is having a grand mal seizure. Have you seen anything? Thanks.

    Liked by 2 people

    Comment by HoDo — May 7, 2020 @ 1:27 PM

    • This may help, HoDo:

      What to do if a passenger has a seizure in your vehicle

      Click to access KTRFS16-PassengerwithSeizure.pdf

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 7, 2020 @ 2:09 PM

      • Also, HoDo, for Tonic Clonic seizures per se, here is some guidance:

        Seizure First Aid

        https://www.cdc.gov/epilepsy/about/first-aid.htm

        Liked by 1 person

        Comment by Phylis Feiner Johnson — May 7, 2020 @ 2:14 PM

      • I have had to actually jump off my vehicle and help a lady on my main street having a seizure one time. If I had not had any prior life experiences or training and knew myself I may too have been scared or worried like everyone else standing around. I won’t lie that was the first time I got to see how they all reacted to me when I had a seizure!! I never addressed it at the time, but later that week I did go and find those people and had my own time with them and told as well as showed them what to do in the future. I suppose it was different for me because they were all my personal friends, but it still helped me know at least they had an idea as to what to do if it ever happened again and NOT TO PANIC OR SCREAM!!

        Liked by 2 people

        Comment by Kathy S.B — May 7, 2020 @ 10:53 PM

      • Because this article is about public transportation, it doesn’t mention what to do about seat belts. That was my real question – to leave a seat belt buckled or to undo it seem equally dangerous.

        I’m pleased to see someone in the public sector is addressing the topic. Thanks.

        Liked by 2 people

        Comment by HoDo — May 7, 2020 @ 2:21 PM

    • Pull aside, stop & park the car in safe zone, get out of the car, stabilize the passenger from banging his/her head against the car, make sure the seat belts are not chocking the seizing passenger & help the seizing passenger by following the instructions listed on this article.
      In my humble opinion, staying with the seizing passenger throughout the unfortunate predicament & driving the passenger home or the hospital for recovery & rest would make the incident less complicated than it can be.
      Gerrie

      Liked by 3 people

      Comment by BahreNegash Eritrea — May 7, 2020 @ 3:06 PM

      • Andy is alcoholic & autistic middle aged man who constantly suffers from seizures.
        Whenever he ends up having a seizure on public transportation, the bus drivers & most the passengers who does NOT know about his epileptic seizures immediately blame him for getting drunk & passing out in the public bus, stopping the bus for Ambulance & first aid crew to come to the rescue, complicating the bus schedule & passengers timetable.
        In a few times, I had to intervene to explain Andy’s epileptic seizures when I noticed some of the bus drivers, passengers & first aid crew members started turning to be inconsiderate to Andy’s medical hardships.
        Therefore, it’s for our own good interest to get involved in the unfortunate incidents & help our fellow victims of Epilepsy.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — May 7, 2020 @ 3:35 PM

      • In my opinion I ALWAYS THINK FIRST RESPONDERS, EMT, POLICE, DOCTORS AND NURSES should ALWAYS “hear from the HORSES MOUTH (from those of us who have epilepsy), but for some reason it seems as though NOT ALL ARE WILLING TOO or possibly have TOO MUCH PRIDE AND THINK THEY SIMPLY KNOW!! Heck with those that can actually help them perform their jobs better. Some though cite LEGAL REPERCUSSIONS!!

        Like

        Comment by Kathy S.B — May 7, 2020 @ 10:59 PM

      • People on the spectrum seem to have more seizures than those who are not. This is not an unusual situation. Only the kindness is unusual, and hopeful for all of us.

        Liked by 3 people

        Comment by HoDo — May 7, 2020 @ 4:31 PM

      • I COMPLETELY AGREE!! But to be honest with you if I have had seizure (like I did recently) I don’t even attempt to go out especially on stairs or sidewalks and A CAR!!

        Liked by 1 person

        Comment by Kathy S.B — May 7, 2020 @ 10:55 PM

    • Goodevening HoDo 😊. That actually happened to me one time coming home from a “hockey coaching coarse” I had to take in order to become a hockey coach!! My husband said “IT SCARED THE CRAP OUT OF HIM!!!!!!!”. Mostly because I was PHYSICALLY EXHAUSTED AND VERY TIRED!!!!! He pulled over to the side of the road and dropped my seat backwards (I already had my seatbelt on THANK GOD), but it may have played out differently had he not known or witnessed my seizures prior.

      Liked by 1 person

      Comment by Kathy S.B — May 7, 2020 @ 10:48 PM

  2. Alcoholic AND Autistic WITH seizures?

    Gerrie, you’ve got the heart of an angel.

    And you are truly an example of sense and sensitivity.

    Liked by 2 people

    Comment by Phylis Feiner Johnson — May 7, 2020 @ 3:51 PM

    • Thanks Phylis,
      But I hate inconsiderate people who think & feel of themselves invincible to anything & everything that’s making their fellow human beings life very difficult.
      As if adversity is NOT hard enough to bear, I can NOT tolerate people adding insult to the injury.
      Thanks to epilepsy, I learned the hard way that I can end up in Andy’s shoes any day.
      Therefore, it’s only natural reaction for me to defend Andy from the soulless bullies tormenting the poor man for medical hardships he never asked for neither can control.
      Therefore, I’m determined to speak oit against the abuse of the innocent man.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — May 7, 2020 @ 5:51 PM

      • I’LL SPEAK WITH YOU!! 😘

        Liked by 1 person

        Comment by Kathy S.B — May 7, 2020 @ 11:04 PM

    • I agree Phylis! Thank you Gerrie 😊🙏🏼💗. I do though have to admit (after having helped the person I was speaking of earlier on Main Street who was intoxicated) even I was upset with that person especially after I got home and had time to swallow what just had happened prior. Probably because I myself am a non-drinker though.

      Liked by 1 person

      Comment by Kathy S.B — May 7, 2020 @ 11:03 PM

      • Thanks Kathy, We should NEVER be silenced by the seizures we’ve fighting to control for years or by soulless inconsiderate bullies who take our medical hardships for mockery.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — May 7, 2020 @ 11:39 PM

      • I COMPLETELY AGREE WITH YOU!! Your VERY WELCOME GERRIE 😊

        Liked by 1 person

        Comment by Kathy S.B — May 9, 2020 @ 5:08 PM

  3. It seems to me we with epilepsy know who our “genuine” friends are, as the others, as well as certain family members, have seemed to drop out of our existences. Interestingly, I have sometimes felt almost uncomfortable around friends at times though, feeling they might be wondering if I’ll be asking for a ride somewhere!. Anyone else ever feel that? For that reason, I took busses and subways for years, and also paratransit ( another humiliating epilepsy story).

    Liked by 2 people

    Comment by skolly9 — May 8, 2020 @ 5:33 PM

    • Personally, I would rather remain left on my own than having to be a burden to my family & friends.
      While I’m very grateful to ALL the compassionate & caring concern & support I’ve received from my family & friends throughout the years since I’ve been forced to live with epilepsy, I feel this’s my cross & I should carry it on my own.
      Therefore, I would like to keep my family & friends away from my personal struggle against Epilepsy.

      Liked by 2 people

      Comment by BahreNegash Eritrea — May 8, 2020 @ 9:53 PM

      • I’ve always been fiercely independent on my own & NEVER liked the idea of sharing my private life, even with the very close members of my family or friends.
        Therefore, I feel violated whenever friends or family members ask questions about my epilepsy, unless there’s an emergency & immediate need to know.
        I understand & agree that there’s conflict of interest in my quest to keep my epilepsy private affairs when I’m having grand mal seizures for the whole world to see, I still try to keep some space off-limits & private to inquiring minds whose intentions may have been in my wellbeing.
        Therefore, while paranoia may NOT apply to my condition, I suspect that my personal insecurity & luck of control to my seizures is making me more defensive than I needed to be.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — May 8, 2020 @ 11:06 PM

    • I always felt embarrassed about asking for rides. Like after a few trips, I should reciprocate in some way.

      (And I’m not one to make a batch of brownies as a “thank you” gesture. I don’t even cook!)

      Liked by 2 people

      Comment by Phylis Feiner Johnson — May 8, 2020 @ 10:27 PM

  4. That also happened to me, a friend was driving me to and from work, since i lost my license due to a crash after a grand mal. That’s another story i won’t get into now, but getting back that friend and i went to Mc Donald and while we were in the drive thru, i started feeling one coming on. My friend was asking me questions about my order at the window and i couldn’t talk. ugh, i managed to tell him i was having a seizure and asked him to park it. So they handed him the food and he pulled over. Luckily it was a small seizure that i was able to control by not letting my hand flail like mad. If i remember right i took off my seat belt in order to lean forward unto my hand to keep it from flailing. It’s always best to let the person ride out the seizure and not touch him, unless if they are hurting themselves. One time i could of used help was when i fell out of bed and was hitting my elbow against the metal bed rail. Ever since than the feelings in some of my fingers is just not right.

    Liked by 3 people

    Comment by Zolt — May 8, 2020 @ 6:09 PM

  5. Zolt, it hurts me to think of you hurting yourself. 😦

    Like

    Comment by Phylis Feiner Johnson — May 8, 2020 @ 10:34 PM

  6. Hi, Phyllis,
    New Jersey is doing something to increase understanding and awareness in the schools:

    https://nj.gov/governor/news/news/562020/approved/20200109c.shtml?fbclid=IwAR1t73laWgjwDAHH8XQOalA2pZvzJOfDNQRIb5fPwv4fvDHD4Dyuzt3r12Y

    Liked by 1 person

    Comment by Martha — May 26, 2020 @ 9:17 PM

  7. Good for them. I know that our Pennsylvania Epilepsy Foundation chapters are going around to schools, nursing classes and (when they’re welcome) EMTs in an effort to educate and also instruct about First Aid.

    But, it’s a very small group, disjointed at best, without the mandate or the unity of a government action.

    Pennsylvania is trying their best. But, without cooperation, they’ve got a long way to go. 😦

    Like

    Comment by Phylis Feiner Johnson — May 26, 2020 @ 9:23 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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