There is a stigma about epilepsy that prevents people from seeking help and education.
That shouldn't be.
No, it's not contagious and you can't catch it from someone else. It's no more contagious than freckles. Epilepsy is not a mental illness or mental retardation. Epilepsy is a neurological disorder that affects nearly 3 million Americans with over 200,000 new cases each year. Epilepsy doesn't discriminate. It affects children and adults, men and women, and people of all races, religions, ethnic backgrounds, and social classes. The Epilepsy Society of Southern New York has been providing volunteer programs and consumer education for over 30 years. We're here to protect your civil rights and make sure you get the very best care and support.
WHAT IS EPILEPSY?
- Epilepsy is a neurological disorder that causes people to have recurrent seizures.
- A seizure is an abnormal disturbance of the electrical activity in the brain.
- Epilepsy is not contagious... It is not possible to catch epilepsy from someone else. It is no more contagious than freckles or left-handedness!
- Epilepsy is not a mental illness ... Epilepsy is an involuntary discharge of some or all of the neurons in the brain in a random, uncontrolled fashion.
- Epilepsy is not mental retardation. In fact (as a group) people with epilepsy have roughly the same range of IQ, talents and abilities as other populations. There have in fact been some notable people with epilepsy, who have become some of the most important people in history despite having epilepsy, such as Julius Caesar and Fyodor Dostoyevsky, to name but two.
WHAT CAUSES EPILEPSY?
More than half the time, the cause of epilepsy is unknown. Where a cause can be determined, it is most often one of these:
- Infections that affect the brain
- Traumatic Brain Injury
- Errors in brain development
- Genetic factors
WHO HAS EPILEPSY?
- Approximately 2.7 million Americans have epilepsy, and 181,000 new cases are diagnosed in the United States each year.
- One in 10 people will have a seizure at some point in their lives.
- Three in 100 people will develop epilepsy by the age of 75.
- Epilepsy doesn’t discriminate. It affects children and adults, men and women, and people of all races, religions, ethnic backgrounds, and social classes.
- While epilepsy is most often diagnosed in children under two or adults after the age of 65, it can occur at any age.
ARE THERE DIFFERENT KINDS OF EPILEPSY?
It has been said previously that seizures originate with a disruption of the electrical activity in the brain, and it is well known that the brain is a complex organ with control over many different functions. So it should come as no great surprise that, depending on the extent of the disruption and the location where it starts, a seizure can manifest itself in many different ways. Seizures can have a variety of effects, from mild to severe—and occasionally even life-threatening. These types of seizures have been classified and given names by epileptologists, and some of the more common types are listed below:
Generalized Tonic Clonic (Grand Mal)—The type having the symptoms most commonly associated with epilepsy which include convulsions, muscle rigidity, jerking, and loss of consciousness. Tonic-clonic seizures typically last from a few seconds to a few minutes, during which time the person has no knowledge of their surroundings. After the seizure, it is normal for the sufferer to feel very tired and lethargic as the seizure wears off. As the word generalized suggests, these seizures effect all areas of the brain simultaneously in a chaotic pattern of disrupted electrical activity, which affect consciousness, conscious muscle control and autonomic activities, such as breathing, etc.
Absence (Petit Mal)—Blank stare lasting only a few seconds, usually from 2-10 or sometimes as long as 20 seconds at a time. Sometimes accompanied by some form of repetitive movement, such as blinking or chewing motions. The person is unaware of their surrioundings during this type of seizure, which commonly are very brief, but may occur with great frequency, sometimes many tens of times a day. Often, they are so brief and the person transitions in and out of the seizure so rapidly that they themselves are unaware of them.
Complex Partial (Psycho-motor / Temporal Lobe)— Purposeless activity where the person is out of touch with his/her surroundings. Sometimes confused with absence seizures, but generally they happen less often, last longer and are more severe than the above. Unlike Absence seizures, the person is often tired and out of touch for a while after the seizure, and there is a much higher incidence of automatisms-those purposeless movements, and occasionally sleep-walking like behaviors. If the person is interrupted, they are impossible to rouse, and may become combatitive. Since the person can often move around purposelessly, care should be taken to keep them from injury.
Simple Partial—Jerking in one or more parts of the body or sensory distortions that may or may not be obvious to onlookers. No loss of awareness.
Atonic (Drop Attacks)—Sudden collapse with rapid recovery within a minute.
Myoclonic—Sudden, brief jerks involving all or part of the body while fully awake.
Tonic—Sudden brief body stiffness without shaking.
WHAT ARE COMMON TREATMENTS?
Medication—Most people achieve good seizure control on one or more of the variety of medications currently approved for the treatment of epilepsy. Taking medications according to schedule assures the best results.
Surgery—Several types of surgery may be used for patients whose seizures do not respond to medication. The most common are temporal lobectomy and cortical resection. These may be used when a seizure focus can be determined and removal of all or part of the affected lobe of the brain can be performed without damage to vital functions.
Vagus Nerve Stimulation—A small pacemaker-like device is implanted in the left chest wall with a lead attached to the vagus nerve. The device is then programmed to deliver electrical stimulation to the brain at regular intervals. Many patients whose seizures do not respond adequately to medication see improvement with this method. For more in depth information regarding this and other related devices, click here view the article.
Ketogenic Diet—Used primarily in children, this medically supervised high fat, low carbohydrate, low protein diet has been shown to benefit many of the children who can maintain it.
For more information, please email Kim Egan, or call her on (845)627-0627 extension 113.
Resources, Information, and materials for People with epilepsy
Here are some resources and other materials for people with epilepsy and their caregivers.
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Generic vs Brand name drugs - NEWS!
After a recent survey by the Epilepsy Foundation, they have released a statement saying that although they support reducing medication costs by the use of generic medications where advisible, in some cases the medications may not have the same formulation, strength or efficacy across different generic brands and between brand name and generic formulations of the same medications. Therefore, the possible risks and benefits must be weighed carefully, and the patient and doctor must be informed, and the patient monitored carefully to ensure that no harmful effects are evidenced by such a change.
Members of our Professional Advisory Board, who are also epilepsy specialists have contributed informative articles on diverse subjects for us. Please click on a link below to read these fascinating articles.
The Stimulating Future of Epilepsy Treatment.
By Lawrence J. Hirsch, MD.
This article seeks to explore some of the current research and possible novel treatments for people with seizures that do not respond to the usual medications.
Sudden Unexpected Death In Epilepsy (SUDEP).
By W. Allen Hauser, MD.
Herbal Medicine Chart
Many people take herbal medicines or vitamin suppliments, and while many may indeed find these beneficial, some of these substances can interact with your seizure medications. Click here to download a pdflist of herbal medicines and other things that may cause an interaction.
Basic first aid measures for all seizures are:
DO keep calm.
DO protect the person from injury.
DO remain in attendance. Stay nearby until the person is fully alert.
DO NOT restrain movement. You cannot stop the seizure.
DO NOT force anything into the mouth.
DO NOT offer any food or drink until the person is fully awake.
Additional measures for the most common seizure types are:
Generalized Tonic-Clonic Seizure
- Check the time, call 911 if seizure lasts more than 5 minutes.
- Help the person lie down and put something soft under the head.
- Remove glasses and loosen tight clothing.
- Clear the area of hard or sharp objects.
- Gently turn the person to one side to allow saliva to drain from the mouth.
- If the person is known to have epilepsy or is wearing or carrying epilepsy medical identification, it is unlikely that further medical assistance would be needed. However, a convulsive seizure is usually not a medical emergency unless it lasts longer than five minutes, or a second seizure occurs soon after the first, or the person is pregnant, injured, diabetic, or not breathing easily. In these situations, call for medical help so that the person can be taken to an emergency medical facility.
COMPLEX PARTIAL SEIZURE
- Do not try to stop or restrain the person unless absolutely necessary for his or her safety.
- Be watchful with stairways, street traffic, hot stoves, knives and bathtubs.
- Remove harmful objects from the person’s path and gently guide away from danger.
Other Useful Information
Seizures are very subtle, may last no more than 5-15 seconds and may occur hundreds of times per day. Give personal explanations as to what the person may have missed.