Understand Epilepsy

What is epilepsy? 

Epilepsy is a condition that causes people to have repeated seizures. Seizures are caused by abnormal electrical activity in the brain. Seizures can make you pass out, or move or behave strangely. Epilepsy can start at any age.The good news is that epilepsy is treatable. For most people with epilepsy, seizures will be completely controlled on medication. It is important to learn about epilepsy, your medication, and lifestyle issues. 

What are the symptoms of a seizure?

There are different kinds of seizures. Each causes a different set of symptoms. Most seizures last only a few seconds or minutes.

People who have "tonic clonic" or "grand mal" seizures often pass out, get stiff, and then have jerking movements. Other types of seizures cause less dramatic symptoms. For instance, some people have shaking movements in just one arm or in a part of their face. Other people suddenly stop responding and stare for a few seconds. 

Sometimes, people can tell that they are about to have a seizure. They have a certain feeling or smell a certain smell. This feeling or smell is called an "aura."

Will I need tests?

Yes. You will probably have one or both of the following:

EEG – An EEG measures electrical activity in the brain.

CT or MRI scan – These tests create pictures of the brain.

How is epilepsy treated?

Epilepsy is treated with anti-seizure medicines. These medicines can't cure epilepsy, but they can help prevent seizures. There are different anti-seizure medicines. The right one for you depends on your seizures and other factors.

What should I know about anti-seizure medicines?

You should know that:

These medicines can cause side effects. They can make you feel tired or dizzy, or cause other problems. Let your doctor know about any side effects you have. That way, together you can find the best medicine and dose for you.

There are 2 rare side effects that can be very serious. Let your doctor know right away if you get a new rash or feel like hurting yourself or become depressed.

Anti-seizure medicines can affect other medicines you take. Plus, other medicines can keep your anti-seizure medicine from working well. Let your doctor know if you start any new prescription or non-prescription medicines, including birth control pills. Anti-seizure medicines can keep birth control pills from working well. This can lead to an unplanned pregnancy.

You might need regular blood tests to check the amount of anti-seizure medicine in your body.

Will I need anti-seizure medicine for the rest of my life?

It depends on your seizures. If you don't have any seizures for at least 2-3 years, your doctor might talk with you about stopping your medicine. But don't ever stop your medicine on your own.

How can I lower my chances of having more seizures?

To lower your chances of having more seizures, you can:

Take your medicine exactly as directed

Get enough sleep – Not getting enough sleep raises your chances of having a seizure.

Eat a healthy diet

Avoid drinking excessive alcohol or caffeine or using drugs

Can I drive if I have epilepsy?

Each state has its own rules. Before you can drive again, you will probably need to be seizure-free for a certain amount of time. You might also need to get your doctor's permission.

Other precautions:

* Caution with using heat/fire: examples: cooking (use the back burners and turn in the handles of pots and pans so they don't stick out over the edge of the cooktop), microwave (burns are possible from the steam), irons, curling irons

* Avoid climbing ladders, working at heights

* Caution with sports - discuss specific sports questions with your doctor

* Avoid using heavy automated machinery

* Water - drowning is a risk for people with epilepsy. Showers are safer than baths. Swim only with someone else who is aware of your seizures and is a strong enough swimmer to help you out of the water if you were to have a seizure.

* Generally unsafe sports: scuba diving, sky diving

What if I want to get pregnant?

Talk with your doctor before you get pregnant. He or she might change your medicine or prescribe a vitamin called folate. But don't ever stop your medicine on your own. All young women of child-bearing age should take a multivitamin with at least 800 micrograms of folic acid.

When should I call my doctor or nurse?

Your doctor will make a plan with you that tells you when to call him or her. In general, call your doctor or nurse if you have more seizures than usual or your seizures last longer than usual.

Some seizures are a medical emergency. If your seizure lasts longer than 5 minutes or if you have repeated seizures over a few minutes, the person with you should call for an ambulance (dial 911).

What else should I do if I have epilepsy?

Consider wearing a medical bracelet to let others know about your epilepsy.

Keep track of any seizures (may consider using an app such as the one available from SeizureTracker.com)

Bone health:

People with epilepsy may be at higher risk for developing premature bone loss (osteopenia or osteoporosis), which could increase the person's risk of fracture. In general, you should target a calcium intake of 1000 mg/day (via your diet or supplemented by dietary supplements with no more than 500 mg taken at one time). Also you should take at least 400 - 800 I.U. of vitamin D per day (again, in your diet or with supplements).

What are risks of seizures/epilepsy?

Most people can live normal, productive lives with epilepsy. However, seizures can cause injuries (due to falls, burns, shoulder dislocation, and other problems) and rarely can cause death (due to severe injury/accidents, drowning, or sudden unexpected death in epilepsy - also known as SUDEP). Some people may develop memory or mood problems related to epilepsy. 

THIS IS WHY TAKING SEIZURE MEDICATION IS SO IMPORTANT.

Seizure first aid:

1) Always Stay With the Person Until the Seizure Is Over 

2) Time the seizure

3) Stay Calm, Most Seizures Only Last a Few Minutes

4) Prevent Injury by Moving Nearby Objects Out of the Way 

5) Make the Person as Comfortable as Possible

6) Ask someone to stay nearby in case further help is needed.

7) Do Not Forcibly Hold the Person Down

8) Do Not Put Anything in the Person's Mouth!

9) Make Sure Their Breathing is Okay

If the person is lying down, turn them on their side, with their mouth pointing to the ground. This prevents saliva from blocking their airway and helps the person breathe more easily.

If a person appears to be choking, turn them on their side and call for help. If they are not able to cough and clear their air passages on their own or are having breathing difficulties, call 911 immediately.

Call for Emergency Medical Help When:

A seizure lasts 5 minutes or longer.

One seizure occurs right after another without the person regaining consciousness or coming to between seizures.

Seizures occur closer together than usual for that person.

Breathing becomes difficult or the person appears to be choking.

The seizure occurs in water.

Injury may have occurred - such as falling and hitting the head.

The person asks for medical help.

For more information go to: epilepsy.com

Another good website, with education resources and toolkit/app is:

http://www.webease.org/