The Challenge of Epilepsy
Sally Fletcher
Copyright Sally Fletcher 2011
Published by Aura Publishing at Smashwords
The Challenge of Epilepsy
Take Control of Your Seizures and Your Life through Complementary and Alternative Solutions by Sally Fletcher, MA
Aura Publishing Company
www.epilepsyhealth.com
Notice and Disclaimer
This book is based on personal experience and observations. It is meant to be educational in nature and is not designed to instruct anyone in complete self-treatment, let alone diagnosis. Keep in mind that epilepsy is highly individualistic.
To learn about the latest advances in medication or surgery for epilepsy, seek out the best medical assistance you can find from a neurologist.
Third Edition Copyright 2004, by Sally Fletcher. All rights reserved. No part of this book may be reproduced in any form or by any means without written permission from the publisher, except in the case of brief quotations used in connection with reviews.
Former editions 1985 and 1986
Published by Aura Publishing Company, P.O. Box 6776, San Rafael, CA 94903-6776
Library of Congress Control Number: 2003095885
Publisher‘s Cataloging-in-Publication data Fletcher, Sally The Challenge of epilepsy / Take control of your seizures and your life through complementary and alternative solutions / Sally Fletcher.-3rd ed.
Rev. ed. of: The Challenge of epilepsy / Sally Fletcher. 2nd ed.
Includes bibliographical references
ISBN 0-9615513-6-4
1.Epilepsy. 2. Epilepsy Social aspects. 3. Epilepsy Patients. 4. Epilepsy Family relationships. 5. Epilepsy Popular works. 6. Epilepsy Treatment. 7. Seizures
RC372.2 F53 2003 616.853-dc21 2003095885
This book is for:
The millions of people who have seizures and who are searching for new and better ways to handle the problem; The millions of people who have a loved one with epilepsy and want to know more about the disorder; and for the neurologists, biofeedback and neurofeedback practitioners, receptionists, psychologists, social workers, counselors, teachers and nurses who show concern for their patients, clients or students by continuous learning.
Dedication
To my children, Kim and Michael Ray.
Together we grew to understand the meaning of words such as: disabled, poverty, prejudice, fear, anger, embarrassment, frustration, hope, perseverance, courage, compassion and love.
Acknowledgments
I wish to express special thanks to the following people, whose guidance, support and inspiration made this book possible:
Ron Petersen, Robert Shellenberger, Ph.D., and John Turner, Ph.D., for their unselfish help and guidance as I experimented with and practiced biofeedback training at the Aims Biofeedback Institute in Greeley, Colorado.
Judith Green, Ph.D., Sidney Kurn, M.D., and Merritt Lewis, who gave me unending inspiration and encouragement for the first writing of this book.
Roxanne Preble, M.A., neurofeedback practitioner, and Susan Rosen, for sharing their knowledge and expertise regarding neurofeedback.
Kim Spencer for her meticulous proofreading, support and suggestions (both humorous and serious).
Richard Bagel of Richard Bagel Design Studios, for cover and interior design and layout.
Michael Bremer of UnTechnical Press, for editing and publishing consulting.
Table of Contents
How I Learned About Epilepsy
Some Myths And Facts About Epilepsy
Neurofeedback: Learn to Control Your Brain Waves with EEG Biofeedback
Stress: Enough is Enough!
Nutrition, Exercise For Helpful Energy On Your Journey
Music and Healing
Medication: Some Facts About The Side Effects
Self-Esteem
Ten Steps to Controlling Your Epilepsy
Appendix 1: Things that Lower the Seizure Threshold
Appendix 2: Seizure Emergency Checklist
Appendix 3: Suggested Books for Further Reading
Appendix 4: Finding Out More
Glossary
About the Author
Information and Order Form
Chapter 1
How I Learned About Epilepsy
Many years of my life were spent searching for a simple, miraculous, instantaneous cure for my epilepsy.
I eventually became free of seizures, but it wasn‘t instantaneous. I now believe that many people ‘s seizures can be reduced, or even eliminated, by gradual life-style changes, including proper nutrition and stress management, along with neurofeedback (EEG biofeedback) training and other techniques. It doesn’t usually happen overnight; change can be complex and no one can do it for you. Developing new habits for your mind and body takes persistence, but the rewards affect your entire life.
The methods in this book are considered alternative or complementary to traditional healing (medicine and/or surgery). For information and questions related to medication and/or surgery, check with your physician. These alternative methods are: stress management, nutrition, exercise, self-esteem building, music, meditation, visualization, psychophysiology (biofeedback), and most importantly, accepting and learning to use the power of the mind. They are applicable to any disorder, challenge or disease.
There are many other alternative therapies which you may want to look into as well. The word disease (dis-ease) means the absence of ease, comfort or health. We are souls living in our bodies, and the better we take care of ourselves, the more enjoyment we will experience in our lives.
This knowledge and wisdom wasn‘t something I was told by a physician, heard in a lecture hall, read in a book, or envisioned. My years of searching, much of it by trial and error, were not simply because of my humanitarian urge to wipe out epilepsy for the 2-6% of our population who live with seizures. (Not that I wouldn’t like that!) My motivation was the fact that I was experiencing l0 to l5 seizures per month which were uncontrolled by medication. I am now free of seizures, and I want to share what I have learned with you.
After my first seizure, at the age of 26, I made an appointment with a physician. Many questions were asked as the physician searched for, first of all, a diagnosis, then the cause of my disorder. The question, “Have you ever suffered a concussion or blow to the head?” provided a very important clue in the search.
I replied, “Yes, I suffered a concussion as the result of a fall while ice skating when I was 16.”
The physician suggested that I have an electroencephalogram (EEG) to gather data about my brain wave patterns, as well as a CAT Scan (computerized axial tomography) to see if there were any structural abnormalities in the brain. The CAT Scan did not reveal any abnormalities.
The EEG test, which lasted three hours, showed a sharp spike and wave pattern in the left temporal lobe, which is common for many people with complex partial seizures. The physician ‘s conclusion, after many hours of consultation, examination and probing, was that the sharp spikes in the brain wave pattern were from scar tissue, the scar tissue probably the result of the concussion 10 years earlier. Though my doctor tried prescription after prescription, no medication worked to completely control the seizures without horrible side effects.
I didn’t believe the diagnosis epilepsy for several months. I referred to my seizures as blackout spells and made sure that everyone else use the term spell rather than seizure. Many months of spells later, however, I finally had to face it; I had epilepsy.
The next 10 years were like a scene out of a horror movie. Although I am an accomplished musician and teacher and have scored above the 98th percentile on IQ tests, people treated me as if I were incompetent.
I wouldn‘t admit that it was unsafe to drive until I caused two accidents within five days, totaling six cars (but fortunately harming no one). The same police officer came to the scene both times. When he recognized me the second time, he asked for my driver‘s license and didn’t give it back.
Then I lost my job. The worst day of my life was when I had to register for Supplemental Security Income (SSI), admitting that I could no longer earn a living or support my two children. My children and I lived in poverty. I was taking a lot of medication. I hardly knew what I was doing, and I was still having seizures.
I finally decided to fight back. I realized that rather than living, I was only non-dying. I could not undo the skating accident, and since medication didn‘t work for me, I had to find other options.
For years, I devoted myself to learning everything I could about epilepsy. Much time was spent examining my life from the time when I first started having seizures to the time when I had the last one. I recorded on the calendar with a red X each time I had a seizure. I kept a journal, writing down how I was feeling, what I had been doing, eating and thinking, and when a seizure would occur. After a few years of collecting information I could see a pattern which showed when and why seizures occurred for me.
Stress (my reaction to stressors) was the number one cause. Pressure for time, disagreements, arguments, an excess of worry, indecision, fear and excitement were closely linked to seizures. The seizure often occurred a day or two after the stress. Skipping meals and consuming too much sugar, caffeine or alcohol would often trigger a seizure. Or a seizure would occur after a night of insufficient sleep. I had more seizures the week before and during menstruation than the rest of the month.
I also talked and corresponded with hundreds of people with epilepsy. From this I learned about habits, thoughts, feelings and lifestyles, and received many helpful suggestions from others who have seizures.
I read every book, article and pamphlet about epilepsy that I could find. I discovered that the literature on epilepsy is limited. Much of the information describes the various types of seizures, the medications available, brain surgery, and what to do when you or someone else has a seizure. This information was helpful, but I wanted more. I was searching for information on how to overcome epilepsy how to reduce or eliminate seizures using unconventional (alternative or complementary) methods.
I learned to control my seizures gradually, experimenting with many different methods. When one method didn‘t seem to help, I dropped it, then tried another then another then another. I believe it was a combination of methods that helped me to overcome my seizures. These methods were: neurofeedback (EEG biofeedback), positive thinking, developing more self esteem, yoga (both postures and meditation), correct nutrition, stress management, spirituality, music and regular exercise.
I still don’t know which, if any, of these methods is most important. Each is an aid to the others, and they all work together. Since we human beings are unique, different methods and different combinations work for different people.
Having a seizure is very embarrassing, both to the person having it and to those who witness it. One person who has frequent seizures described this feeling of embarrassment very well. She says, Have you ever slipped on ice and fallen on the street? Remember how you picked yourself up and looked around to see if anyone saw you? It wasn‘t your fault any more than having seizures is my fault, but why did you check to see if anyone saw you if the embarrassment of being seen didn’t exist? Believe me, having a seizure is much more embarrassing than just slipping on ice!
One of my most severe seizures occurred while I was teaching a group of yoga students a rapid deep-breathing exercise. (I now realize that hyper-ventilation can trigger seizures.) I came out of the seizure with blood running down my chin, crying, not knowing where I was or what had happened. The students were shocked and frightened, and I was only half-conscious, so some of them took me home. It took all of my courage to go back and face those students at the next class!
Sometimes during a complex partial (psychomotor) seizure I would pace back and forth, counting my steps aloud, or dance around singing a repetitive phrase. (Now that I ‘m a professional musician full time, I wonder if I should have recorded some of the singing; maybe they would be hit songs! Who knows?!) Seriously, this was very embarrassing, both to those around me and to myself, especially later when witnesses would tell me about these experiences, of which I was unaware.
The following scene is a personal experience. A young man who works at a laundromat near a downtown street corner is standing outside taking a break. Suddenly a woman walking toward him stops, stiffens, lets out a scream. She rolls her eyes, peels off her blouse, then starts singing, skipping and dancing. She twirls the blouse around as her right arm jerks and makes circles. The young man is terrified and fascinated.
”Is she on drugs? Is she psychotic? Is she dangerous? What shall I do?” As she comes out of the seizure he asks her a few questions and finally she answers. She mumbles something about epilepsy after he tells her what happened. She puts on her blouse and walks on home, her thinking fuzzy. She crawls into bed and falls asleep. Embarrassing episodes such as these served as an incentive to find a way to overcome seizures.
Being without a driver‘s license also gave me the desire to find a way to become free of seizures. Since there was no bus system in the city where I lived, I either walked or relied on others for transportation. Thinking of people to call, making phone calls, and arranging and waiting for rides sometimes took more time than the actual trip. I gained a lot of wisdom during those years of being dependent on others for rides, being restricted from most employment opportunities, and sometimes needing to rely on total strangers for help during a seizure.
I have always valued freedom, independence and self-sufficiency. I learned that living goes much more smoothly when I am willing to give and accept help from others when it is needed. For me this meant I had to swallow my pride and ask for rides thousands of times. I learned the meaning of interdependence. I am very grateful for all the help I received. I want to repay some of this consideration by sharing what I have learned with as many people as possible.
The loss of memory which I experienced was another factor in making me determined to find a way to overcome epilepsy. Loss of memory can sometimes be a side effect of medication, and it can also be a result of the epilepsy itself. I noticed loss of memory especially after a seizure, then it would gradually improve until it was back to normal. This gradual change would sometimes take many days. When I had several seizures in one day or within a few days, I would remember very little of what had happened during that time. Even when I was free of seizures for two or three weeks, I would have lapses of memory. Sometimes I could recall the forgotten incident, name, etc., when someone described it. At other times it was completely gone from my memory. Some of the medication would also affect my memory and make my thinking disorganized and slow.
I spent several years of my life coping with the embarrassment from having seizures, the dependence and limitations of being without a driver‘s license, and from loss of memory. All of this made me determined not only to find a way to become seizure-free, but to become seizure-free with the use of little or no medication. I have now been free of seizures with no medication for over 15 years.
Ultimately, I learned that I was the one who needed to do the work in overcoming my problems. Physicians have studied many years so they can give suggestions and prescriptions to try to control the symptoms.
Since I was aware that medication was sometimes helpful, I used these suggestions from the physician when they seemed to fit my needs. If not, I found it wise to talk with the physician, sharing my thoughts and feelings, asking questions, trying to find the best solution for me to become healthier.
The neurologist whom I was seeing didn’t know what I was doing 24 hours a day, didn’t know what I had been eating, when and how often I felt stress, anger, boredom, frustration, or how I would feel on the days when I had seizures. So I learned that communication with the neurologist was very important. The neurologist could get a general idea of my well being by an examination and consultation; still, the person responsible for my well-being was (and still is) myself. Epilepsy is my challenge.
If you develop more self-esteem and understanding of epilepsy from reading this book, I will feel that my efforts have been worthwhile. Idealistically, I would like to see every person who has epilepsy become seizure-free and off medication. Realistically, I would like to see every person attain more self-awareness and self-esteem, adopting a healthy life-style which would make living (whether with or without epilepsy) a better experience.
Footnote
1 The Epilepsy Fact Book, Harry Sands and Frances C. Minters, (NY: Scribner, 1979) pp. 18-19.
Chapter 2
Some Myths And Facts
About Epilepsy
From Myth to Modern Times
There are many ancient myths about epilepsy, and some of those superstitions still remain. Throughout history, individuals have been afflicted with seizures mysterious fits during which they would sometimes fall to the ground and twitch convulsively, or wander about aimlessly, repeating some meaningless motor movement. People who most of the time were perfectly normal, happy and intelligent would suddenly appear to have become bewitched, possessed or seized by demons when a seizure overtook them.
Why else would they foam at the mouth, jerk uncontrollably and be unaware of what had happened until someone later told them about the event.
As people ceased to believe in witchcraft, some other myths grew up to explain the phenomenon of epilepsy. Some thought it was caused by sins of the parents or by masturbation. Some said it led to insanity or feeble-mindedness. Laws were passed in many states forbidding people with epilepsy to marry or have children.
Many of the family members of people with epilepsy still refuse to talk about the disorder with friends and neighbors. Those who have seizures frequently try to hide this from others, feeling shame, as though there were some disgrace attached to epilepsy.
Today, even though there is still much to be learned about epilepsy, there is much information to show the truth. Many individuals are unaware of the facts.
Each year 100,000 new cases of epilepsy are reported in the United States. More than 3,000,000 Americans are believed to have epilepsy. Epilepsy affects more people than cerebral palsy, cancer, tuberculosis, muscular dystrophy and multiple sclerosis combined.
Brain and Body
Often, even those with epilepsy are unaware of just how the disorder wreaks its havoc on the body. Here‘s a brief explanation and additional background for those who want or need to understand more:
The central nervous system (often referred to as the CNS) consists of the brain and spinal cord. The spinal cord is a column of nerve tissue which joins with the lower part of the brain. The cord is enclosed by a bony structure called the spinal column. Nerves enter or leave the spinal cord through openings between the vertebra that compose the spinal column. These nerve fibers transmit impulses between the brain and other regions of the body. Motor impulses are directed from the brain to spinal nerves, then to the proper tissues for action. The body depends on the spinal cord for communication from the brain.
The brain is divided into three basic parts: the cerebrum, the cerebellum, and the brain stem. The cerebrum, the major portion of the brain, is the center of thinking and consciously-controlled activities. The motor area is the origin of purposeful actions. The cerebrum is divided into two physically separate halves, called hemispheres. Each hemisphere relates to the opposite half of the body. For example, the sensation and movement of the right hand are accomplished by certain parts of the left hemisphere of the brain. Each hemisphere is subdivided into four major areas, Somatic Sensory Voluntary Movement called lobes.
Each lobe is responsible for vital functions. The outer half-inch of the brain is known as the cerebral cortex. Beneath the cerebrum is the cerebellum, which monitors and coordinates body movements. Next to the cerebellum is the brain stem, which connects with the spinal cord below and the cerebrum above. The brain stem carries nerve impulses from the cerebrum to the spinal cord and helps body processes such as breathing, circulation and digestion.
The cells that make Right Hemisphere up the brain are known as neurons,
Cerebral Cortex or nerve cells. They are part of the tissue forming the central nervous system. There are millions of neurons in the brain and spinal cord.
Each neuron has three parts: the cell body, the dendrites, and the axon. Dendrites are fibers with many branches. They serve as receivers, picking up electrical impulses that are transmitted from other cells. Axons, which form
Dendrites the tail of the nerve, serve as the transmitters. They pass on information, in the form of electrical impulses to other cells. The electrochemical reactions by which the brain operates take place within the cell body itself.
Neurons are information processors as well as transmitters and receivers. One of their functions is to block useless information. Sometimes a few neurons do not function correctly, setting up a chain reaction of indiscriminate firing. This can be the cause of a seizure.
Seizure Thresholds
Anyone who has some defect within the brain will be more vulnerable to epileptic seizures during times of tension or stress. This is called having a low seizure threshold, which is a term used to describe a level of tension or stress above which a certain person will have a seizure.
The potential to have a seizure exists in all of us; anyone can develop epilepsy, but the person who has a high seizure threshold will likely go through life without ever experiencing a convulsion.
Some things that can lower the threshold level or act as seizure precipitants are:
-Emotional stress, such as: divorce, death of someone close, anxiety, embarrassment or fear, feeling bad about oneself (80 - 90% of seizures are caused by stress.)
-Excitement
-Boredom, lack of activity or interest
-Extreme fatigue
-Lack of adequate, regular sleep
-Poor nutrition (eating junk food or skipping meals)
-Hypoglycemia (low blood sugar)
-Consumption of alcohol
-Heat and/or humidity
-Consumption of large amounts of food or drink at one time
-Allergies
-Menstrual cycle
-Bladder too full (putting off urination)
-Constipation
-Fever, colds, infections
-Drug abuse, especially with uppers such as PCP (phencyclidine hydrochloride) and amphetamines
-Drug withdrawal from downers, barbiturates, Valium or alcohol
-Missed medication dosages
-Drug toxicity (too much medication)
-Sensory stimulation such as: sudden loud noise or sudden flashing lights
-Many more things too numerous to mention, and others that are still unknown
Causes
The causes of epilepsy vary, and for many people the cause is unknown. In epilepsy some brain cells discharge when they aren‘t supposed to, but the important question is why this happens. Some of the things which cause an individual to have a low seizure threshold (be more likely to have seizures than the average person) are: acquired, congenital and hereditary diseases; birth or pre-birth trauma (injuries); abnormal metabolism; chemical imbalance; allergies, and occasionally degenerative diseases affecting the brain.
Other causes can include poisoning (of which lead is the most common); brain tumors (less than 10-15%); CNS (central nervous system) infections, such as meningitis and encephalitis; scar formation in the brain from head injury or operation (in many instances the area of damaged cells which cause seizures may be no bigger than the point of a pin); vascular disorders (stroke); liver disease; alteration in blood sugar; vitamin deficiencies, and dehydration. Anything that causes a sudden decrease in the flow of blood to the head may be a cause for seizures. Cardiac arrest, low blood pressure, hypertension, arteriosclerosis, sinus sensitivity, DPT shots and artificial sweeteners have been identified as contributing factors to the cause of seizures.
The leading cause of epilepsy for adults is automobile accidents. The leading cause for children is birth trauma. The leading cause for those over 65 is strokes.
Classification
Epilepsy may show itself in a number of ways. The World Health Organization lists over 50 variations of seizures in their Dictionary of Epilepsy. The kind of seizure a person has is determined by where the electrical disturbance in the brain begins, where it spreads, and how fast it spreads. Sometimes a person tends to have only one kind of seizure, but often more than one type is experienced. The type of epilepsy one has is usually classified by type of seizure. Most people are familiar with the old terminology of three classifications of epilepsy: grand mal (big illness), petit mal (little illness), and psychomotor (temporal lobe).
A new classification system has been devised, referred to as the International Classification System. Types of epilepsy have been divided into four groups:
I. PARTIAL SEIZURES (affecting only part of the brain
A. Simple Partial Seizures (conscious and aware)
1. Motor symptoms (muscle, Jacksonian)
2. Sensory symptoms (touch, taste, sight, smell, hearing)
3. Autonomic symptoms (internal organs, headache)
4. Compound forms
B. Complex Partial Seizures (some loss of consciousness)
1. Consciousness impairment only
2. Cognitive (thought)
3. Affective (mood, emotions)
4. Psychosensory (illusions, hallucinations)
5. Psychomotor (abnormal behavior)
6. Compound forms
C. Partial Seizures Secondarily Generalized (begins as a partial seizure, then becomes generalized)
II. GENERALIZED SEIZURES (affecting the entire brain; loss of consciousness)
1. Absence (petit mal)
2. Myoclonus (contractions of major muscles)
3. Tonic (muscles rigid)
4. Clonic (jerking movements)
5. Tonic Clonic (grand mal)
6. Atonic (loss of muscle tone person falls down)
7. Akinetic (loss of movement person drops things)
III. UNILATERAL SEIZURES (involving one hemisphere, or half, of the brain, affecting one side of the body)
IV. UNCLASSIFIED SEIZURES (because of incomplete information, these cannot be put into a category)
The most common types of seizures from the International Classification System are:
PARTIAL SEIZURES (affecting part of the brain)
a. Simple Partial (conscious and aware)
b. Complex Partial (some loss of consciousness)
GENERALIZED SEIZURES (affecting the entire brain)
a.Tonic Clonic (loss of consciousness)
b. Absence (loss of consciousness for a few seconds)
Auras
Many people who have partial seizures experience a warning or aura, often described only as a hard-to-explain feeling, before their seizures begin. Hippocrates named the aura, which is a Greek word meaning breeze. The aura may be a funny feeling in the stomach, a sense of fear, an unusual sound, such as ringing in the ears, or a visual sensation. Sometimes the aura is explained as a strange smell or a vague feeling that something is wrong. The aura is actually a simple partial seizure. Many people have the same aura every time before a seizure. Some have the aura only occasionally. A true generalized seizure is not preceded by an aura.
Seizures
There are many other types of seizures. In fact, every person experiences a unique seizure. Here I will describe some of the most common types.
When the seizure affects movement, it may consist of a spasm, the rhythmic jerking of a limb or, as seen in the Jacksonian seizure type, it may begin in a certain area of the body and spread (march) in an orderly manner involving adjacent muscles. It is named after Hughlings Jackson, an English doctor who made a detailed study of seizures that occurred in his wife. An example of this type of seizure might begin with jerking in the thumb, spread to the fingers, then advance to the wrist, up the forearm to the upper arm and finally to the face. This is one of the simple partial seizures. Sometimes the spasms spread throughout the whole body, resulting in a grand mal seizure (a secondarily generalized seizure).
If the simple partial seizure affects sensation, the person may experience tingling in one part of the body or other unfamiliar feelings. Others may smell things, see flashes of light, or hear sounds that are not really there.
Autonomic seizures (a type of simple partial seizure) affect the autonomic nervous system, which controls involuntary body functions such as digestion and heartbeat. These seizures do not involve the whole brain, nor do they produce unconsciousness. Their symptoms are headaches that occur repeatedly without apparent cause, stomach aches, nausea, vomiting, or fever. Since these symptoms occur in many other conditions, only a thorough physical examination can show whether they are caused by epilepsy.
The psychomotor seizure, sometimes called temporal lobe epilepsy, is one of the complex partial seizures. It usually arises from one of the temporal lobe areas of the brain, just above the ears. The temporal lobe plays a crucial role in controlling memory, thought and behavior. During a psychomotor seizure the individual‘s awareness or responsiveness is affected, and she or he is in a sort of dream state. Afterward, the person remembers little or nothing of what happened during the attack.
Commonly this seizure consists of two stages (actually two seizures). There may first be an aura a strange sensation (a small seizure). The person is then immobile for about ten seconds. This is followed by a period during which the individual begins some purposeless, repetitive action or motion called an automatism. An automatism may consist of fidgeting, picking at or removing one’s clothes, stroking the hair, lip-smacking or chewing motions, walking about aimlessly, repeating short, senseless phrases over and over, or any type of repetitive or inappropriate action.
The automatic behavior in an automatism varies from person to person. The person having the psychomotor seizure often vigorously resists any help offered during the attack. Screaming or using force to try to stop a person having a psychomotor seizure will sometimes make the seizure more intense.
A complex partial seizure usually lasts less than five minutes; however, there is often confusion after the seizure. This postictal confusion (ictal meaning seizure) is sometimes referred to as Todd‘s phenomena, an aura after a seizure.
Some complex partial seizures may consist of a dreamy state. During this dreamy state the person may feel like something has happened before (sometimes such a feeling is called by its French name, deja vu); or he or she may feel unfamiliar in a known place (jamais vu), or he or she may experience an attack where music is heard, vivid scenes are recalled, or tastes or smells are perceived. People having complex partial seizures in public are often mistaken for being drunk or on drugs. Sometimes a psychomotor seizure progresses into a tonic clonic (grand mal) seizure. This is called a secondarily generalized convulsion.
Complex partial seizures are the most difficult seizures to control with medicine; medication often is less than 50% effective. Complex partial seizures are experienced mostly by adults.
The absence (petit mal) seizure is a generalized seizure, affecting the entire brain. This type of seizure most often affects children, and is characterized by staring spells or a momentary lapse of consciousness (often mistaken for daydreaming or inattentiveness). The attack is sudden and without warning, lasting only a few seconds. Activity abruptly stops and a momentary trance-like state occurs. Then, as suddenly as it comes, the trance-like state disappears, and the individual recovers immediately.
Not every absence seizure is alike. Some involve a twitching or rhythmic movement of the facial muscles or head or arms, while others involve rapid eye blinking or rolling the eyes upward. Muscles may sharply contract, or muscle control may be reduced. There may be a blank stare or blank look into an observer‘s eyes (some call these hate looks). The person may be inattentive or spacey (especially if it is in the middle of other activities). The person may fail to answer when his or her name is spoken, and may be unresponsive to the surroundings. The individual may be unaware that there has been a lapse of consciousness. As a result, the person usually continues his or her activities following the seizure as if nothing had happened.
Absence seizures often go unnoticed by family, friends and school personnel. If a child is having absence seizures (blanking out for a few seconds) at school, he or she may miss part of what the teacher is saying. Absence seizures may occur as frequently as 200-300 times a day. Absence seizures usually disappear by age 20. Many adults who think they are having absence seizures may be experiencing partial seizures, and may be taking incorrect medication.
In infants there may be massive myoclonic episodes that have been termed infantile spasms. These usually occur many times a day and tend to be associated with brain damage and mental retardation. In this type of seizure there is a sudden muscular contraction by which the head is flexed, the arms extended and the legs drawn up. This syndrome is often confused with colic or other gastro-intestinal disturbances before their convulsive nature is recognized.
A unilateral seizure is an attack which sometimes occurs during infancy. With this type of seizure only one side of the body is affected. Facial muscles, arm muscles, or leg muscles on one side twitch violently, while those on the other side remain under control. The person is usually conscious during a unilateral seizure.
Tonic clonic (grand mal) seizures are the type of seizures most people are familiar with and which they associate with epilepsy. A tonic clonic seizure is a type of generalized seizure.
This is a violent major attack where the person suddenly loses consciousness. The person often falls to the ground and experiences a sudden sharp stiffening of the muscles. He or she may give a sharp cry as air is forced through the voice box. This is the tonic (stiffening) phase. The tonic rigidity soon passes and is replaced by a rapid jerking of all parts of the body. The person thrashes the arms and legs about, the jaw jerks and the tongue may be bitten. This is the clonic phase. The seizure is often accompanied by irregular or interrupted breathing and the individual may turn blue for a short period of time. There may be some drooling or frothing of saliva, as well as involuntary loss of urine or stool.
A tonic clonic seizure may last from less than a minute up to half an hour or more. The seizure may occur many times a day or as infrequently as once in several years. The attacks may be mostly during sleep, but are usually spread throughout the entire 24 hours. Following the seizure, the individual may feel tired, confused, weak, nauseated, restless or irritable for some time. Some individuals require a short nap, while others fall into deep sleep for several hours. Many people need a lot of sleep for several days afterward. Rarely does a person return immediately to normal activity.
Very rarely, a tonic clonic seizure can turn into a dangerous form of attack called status epilepticus. In this form the storm in the brain does not quiet down. One seizure follows another. If this continues for over 10 minutes and no medical assistance is provided, death can occur.
Medication is effective in controlling tonic clonic (grand mal) seizures approximately 80% of the time. Valium is effective for about 40 minutes in stopping an uncontrolled seizure. It is sometimes inserted in the rectum of a child whose life may be in danger because of status epilepticus.
The tonic clonic (generalized) seizure which follows a complex partial or simple partial seizure is a secondarily generalized seizure.
It is rare for a person to have more than one major type of epilepsy. Since most people have only one type of epilepsy, monotherapy (one drug) is most effective for most people. Careful observation of the beginning of each seizure is important. This information helps the physician diagnose and to prescribe the medication which will be most effective. If the seizure begins as a partial, medicine for generalized tonic clonic seizures is probably inappropriate. Talk with your prescribing physician if you have questions about your medication.
Many people believe they have more than one type of epilepsy because a seizure begins as a partial seizure and progresses (spreads) to a generalized seizure. These people are, in fact, experiencing more than one type of seizure. However, they usually have only one type of epilepsy, and this is determined by the focus. The focus is the spot in the brain where there is damage and is where the seizure activity begins.
Seizure Emergency Checklist
While a person is experiencing a seizure, there is actually nothing you can do to stop the seizure, so stay calm and follow this guide.
1. Do not restrain it can make the seizure more severe.
2. Stay nearby.
3. Speak kindly.
4. If the person is moving around, remove dangerous, sharp or hot objects from the area.
5. Stand behind the person and gently guide him or her away from danger.
6. If the person shakes or falls, turn the head or whole body to the side so that saliva can drain from the mouth.
7. Force nothing between the teeth. The outdated practice of putting an object in the mouth to prevent the person from swallowing the tongue is not appropriate. The tongue cannot be swallowed. A hard object can increase the damage to the tongue from biting. A soft object can become lodged in the throat, causing suffocation.
I believe these guidelines should be known by everyone, not just the families and friends of those with epilepsy. More than once, I have had well-meaning people call an ambulance for me, not knowing that it is unnecessary unless the seizure lasts longer than 10 minutes. Coming out of a seizure with paramedics standing over me added to the shock and embarrassment as I gradually regained consciousness, trying to realize where I was and what had happened. The bills (several hundred dollars) were an added shock since my income was at a poverty level.
I have a scar on my tongue because some observers put a hard object across my tongue while I was having a grand mal seizure. They were recalling old advice, and were trying to protect me from biting or swallowing my tongue.
Footnotes
1 Epilepsy, Breaking Down the Walls of Misunderstanding, pamphlet, Abbott Laboratories.
2 Facts and Figures on the Epilepsies, pamphlet, Epilepsy Society of America, p.5.
Chapter 3
Neurofeedback: Learn to Control Your Brain Waves with EEG Biofeedback
”You cannot step into the same river twice. The new water is always rushing in.” Greek philosopher Heraclitus
The atoms in the body and brain are like the new water always rushing into the river. 98% of the atoms in your body were not there a year ago. You can have some control over the new atoms in your body as well as in shaping the old patterns in the brain, by using biofeedback.
Learning to control the electrical activity of your brain is a very promising avenue to explore if you are ready to try a new approach to the treatment of epilepsy. For many people it is possible to reduce or eliminate seizures through EEG (electroencephalograph) biofeedback training. It is a learning strategy that helps you to change your brain wave activity. Think of it as physical therapy for the brain. However, this takes willpower, time and persistence.
We have billions of brain cells, but we only use a small portion of those cells. Many are simply idle. People with epilepsy have brains that continuously misfire (not just during seizures), which shows up in EEG‘s and allows neurologists to make a diagnosis. This continuous misfiring may only involve a few brain cells, the area of misfiring no bigger than the point of a pin. The brain cells surrounding the misfiring or damaged cells are sometimes activated to misfire as well, resulting in a seizure.
Since the 1970’s researchers have demonstrated in over 50 controlled studies that a special form of brain wave biofeedback now called neurofeedback safely and effectively trains the brain to stabilize its activity, allowing medication to be cautiously reduced (with your physician’s supervision) or in some cases eliminated altogether. The treatment has been used successfully with all types of seizure disorder. It works with adults and children alike. Some serious disorders require booster sessions; however, often the effects are permanent.
Neurofeedback treatment involves performing two or more 30-minute sessions per week, after a preliminary evaluation to determine the protocol. The evaluation involves some or all of the following: an EEG brain map or Quantitative EEG, a neuro-detailed history, a TOVA test (Test of Variables of Attention, often used for Attention Deficit Disorder [ADD] or Attention Deficit Hyperactivity Disorder [ADHD] testing), and a baseline EEG.
In training sessions, special computerized biofeedback instrumentation detects and displays the brain waves generated by the seizure disorder on a computer screen. The computer program allows for simultaneous inhibition of slow wave (4-7 Hz) and very fast wave (22-30 Hz) and reinforcement of mid-range frequencies (12-15 Hz or 15-18 Hz). Patients are then taught how to modify their brain waves to prevent seizures, by gradually shaping the EEG to decrease amplitude of slow brain wave activity associated with seizures. Much of the learning takes place simply with practice while receiving positive reinforcement from the computer. After enough training sessions (the number varies between individuals) the aura rate goes down and so does the seizure rate. (EEG biofeedback training is also very effective for children with ADD and ADHD.)
No one knows exactly what occurs as we learn to normalize the brain wave activity (produce EEG patterns which don’t trigger seizures). But it works.
Understanding Biofeedback
Biofeedback, short for biological feedback, is basically the monitoring of internal body states. You learn this by watching and listening to sensitive instruments that mirror psychophysiological processes of which you are not normally aware. An electronic instrument detects, amplifies, then gives you immediate information (feedback) about your own biological or physiological conditions, such as: brain wave activity (EEG), muscle tension (EMG) or skin temperature. This instantaneous feedback guides you as you create appropriate psychological or physical changes, becoming more in touch with your mind and body.
Biofeedback instruments have meters, lights, computer displays and sounds, which relay information to you, telling the mind what the body is doing. The information guides you as you create appropriate psychological and physical change, bringing mind and body under control. The body responds to and can be directed by the mind. The body and mind interact, and are really inseparable. A good example of this is when you decide to wiggle the thumb on your right hand. Your brain sends many signals, the proper nerves and muscles respond, and you wiggle your right thumb within a fraction of a second.
You have actually been using biofeedback all your life without electrical equipment. You do this by looking in a mirror, weighing yourself, taking your temperature, learning to play a musical instrument, learning to ride a bike or to play basketball.
Imagine that you are learning to play basketball. You throw the ball, and receive information back from the basket by seeing whether the ball went through the basket or not. If it did not, you notice where the ball landed. This is the feedback of information you use to improve your second shot. You continually try different techniques for throwing the ball. You move to the left, and then move to the right, throw the ball a little harder, etc., until the ball goes through the basket. As you practice you become more aware and gain control. You finally reach your goal, a basket.
Feedback of information to the learner makes learning possible, whether learning to talk, walk, ride a bicycle, read, play a musical instrument or tell a good joke. Without feedback of information learning is impossible. Imagine trying to learn to get the ball in the basket while blindfolded.
Now imagine trying to learn to control your brain waves. You cannot feel, see, hear or in any way directly detect the electrical activity of your brain. You have a general idea of how your brain is operating; however, you lack awareness of your intricate brain activity and therefore you lack direct control. Imagine, however, that you are connected to an instrument which is designed to detect the electrical activity of the brain, and to convert the activity into meaningful information which you can hear or see brain wave feedback. Using the information from the feedback machine as a guide, you could learn to control your brain waves in the same way that information from the basket guides you while learning to throw the basketball.
Biofeedback training starts out with your brain waves totally uncontrolled. You gradually gain control over functions which you thought were involuntary, and eventually, the control becomes automatic. Some of this learning is by passive volition, which requires that you are aware of your task, but you are not trying too hard. A phrase often used for this is letting it happen.
Biofeedback instruments make it much easier for you to use your mind to control both physical (physiological) and mental (psychological) functions. The instrument tells the mind what the body is doing; then your complex mental processes are directed to create change in your physiological functioning. The conscious mind knows or feels that a certain effect is desired, but needs to practice and experiment until the final result is what you had imagined.
Neurofeedback
There are many types of biofeedback training. The method which is usually used for epilepsy therapy is neurofeedback (brain wave feedback) training, using an instrument called the EEG, short for electroencephalograph. The EEG instrument measures the speed (frequency) and intensity (amplitude) of the brain waves and feeds back the information to the trainee, visually (by watching a computer screen with a meter, graph or lights) and aurally (by listening to a sound). Instruments which measure both the frequency and amplitude of the brain waves are the most helpful for learning to control seizures.
The human brain produces continuous electrical signals. The strength or amplitude of these signals is so small that it is measured in microvolts, or millionths of a volt. The signals are picked up by electrodes or sensors touching the surface of the head and then amplified hundreds of times.
The most common technique involves the therapist parting the trainee‘s hair, and, for accuracy, pasting one or two tiny flat discs (electrodes) onto the scalp and one to an ear. These discs pick up the electrical current from the brain. The electrode wire then carries the current to the biofeedback instrument to be read. The computer-based instrumentation records the raw EEG, all brain wave activity at the site of the sensor. The computer program separates the raw EEG into frequency bands and displays them separately. The patient uses this display to learn to inhibit slow wave activity (4-7 or 2-7 Hz) and excessive fast wave activity (22-30 Hz) while simultaneously reinforcing the midrange frequencies (12-15 or 15-18 Hz). When the EEG is used for diagnostic purposes, a different procedure is used; many electrodes are placed at certain points all over the head.
Brain Waves
The neurons in the brain are constantly firing, producing a mixture of electrical activity, some slow, some moderate, and some fast in frequency. This electrical activity or brain wave activity is divided into frequency bands with a computer-based system to describe how fast or slow the electrical activity is occurring. Even though there will be a mixture of all frequencies happening simultaneously, there will be more of one frequency band at any one time (the dominant frequency).
When looking at an encephalogram (the brain wave activity recorded on paper), frequency is displayed horizontally. The faster frequencies will appear narrower, and the slower frequencies will be wider. Amplitude (strength of the wave) is displayed vertically. High amplitude activity will look taller and lower amplitude activity will look shorter. Slower frequencies tend to have higher peaks (amplitude).
The brain waves are divided into frequency bands, using Greek letters for naming them. The term Hertz, (Hz) means frequency or cycles per second. The higher the numbers, the faster the electrical activity of the brain.
Gamma: 24 Hz and above
Sometimes referred to as high beta.
Produced during intense concentration or anxiety.
If there is also high amplitude, this usually indicates excessive effort.
With neurofeedback, this also reflects excess muscle tension.
Beta: 15-18 Hz
Produced during focused attention. Many people with head trauma or depression don’t produce as much beta as others.
SMR (Sensorimotor Rhythm): 12-15 Hz
Sometimes referred to as low beta. A state of relaxed concentration. Also produced in sleep while dreaming, and called REM, short for Rapid Eye Movement.
Often used for seizure control and hyperactivity.
M.B. Sterman, Ph.D., a pioneer in neurofeedback for the treatment of epilepsy, only trained the sensorimotor cortex in his research. The rhythm is named for its location. All brain waves can be produced in any part of the brain.
Alpha: 8-12 Hz
Associated with general relaxation and meditation.
Theta: 4-7 Hz
Associated with drowsiness, inattention, daydreaming, creativity, and deep meditation. Many people who have experienced head trauma, and have been diagnosed with epilepsy, ADD or ADHD produce an abundance of 4-7 Hz activity.
Delta: .05-3 Hz
Produced in deep dreamless sleep.
No specific frequency band is good or bad, and the brain needs to operate predominantly in different bands at different times for different tasks. However, sometimes the brain seems to be like a train off its track (i.e., there may be an abundance of theta activity and not enough beta activity, resulting in seizures or involuntary body movement, inattention or memory problems). Neurofeedback training can help the brain to get back on track.
Brain wave activity is rather complex, and may exhibit several frequencies simultaneously at any given instant. Many people who have seizures produce a combination of beta and alpha brain waves, with frequent abnormal bursts of theta. During their normal day-to-day activities and during sleep, their EEG‘s will read abnormal. People who have complex partial (psychomotor) seizures usually have occasional spikes, or bursts, of high amplitude waves from one of the temporal lobes. Those who have absence (petit mal) seizures usually have occasional discharges in a pattern called the three-second spike-and-wave. During a seizure, the spike-and-wave discharge is very rhythmical and continuous.
EEG’s of people with epilepsy exhibit certain characteristics:
Spike-and-slow-wave discharge
Three-second spike-and-wave characteristic of Absence (Petit Mal)
Tonic Clonic discharge during seizure is bold and erratic.
Since slower frequencies tend to be accompanied by high amplitude peaks, relaxing, letting go and meditating are not helpful for most people during the aura (the beginning of a seizure). Producing slow brain waves with high amplitude peaks may encourage seizures for some people. Paradoxically, meditating and relaxing (except at the onset of a seizure) once a day for 20 minutes tends to reduce the seizure threshold. Allowing the brain and body to completely relax once a day seems to take the place of having a seizure.
Neurofeedback Research
M. B. Sterman, Ph.D., while chief of neuropsychology research at the Veteran‘s Administration Hospital in Sepulveda, California, was the first researcher to discover that brain wave training could affect epileptic seizures. Dating back to the 1970’s, he and his colleagues had demonstrated that cats could be conditioned to control their brain wave patterns by rewarding them with food each time they would produce a certain type of brain wave pattern.
Some cats were taught to increase the percentage of 12-15 Hz brain wave rhythm. Sterman called this pattern the sensorimotor rhythm (SMR) because the electrodes were over an area of the brain (approximately 1 to 2 inches above the ear at the temple) called the sensorimotor cortex.
About that time, NASA approached Sterman because of a problem they were having; their rocket fuel appeared to be inducing seizures in their personnel on the test range. While testing the hydrocarbon fuel for its convulsive effects on the nervous system, Sterman accidentally discovered that two of the five cats who were trained to produce SMR also gained the ability to delay convulsions.2 He decided to explore the possibility that humans, too, could decrease seizure activity by learning to produce SMR. During many months of training Sterman found that seizure activity indeed decreased in four human subjects as they learned to produce SMR.
In a later study, in order to establish the validity of the EEG training technique, Sterman and MacDonald conducted a controlled study. In this study, yoked controls were used, where the feedback signal to the patient, unbeknownst to him or her, was periodically reversed from another patient. Other controlled studies were done at a later date.
Researchers in other laboratories and clinics have found that through neurofeedback, training subjects may experience reductions and severity of seizures. Some subjects have been able to reduce medication as well, with their physician‘s guidance.
One of these researchers, Judith Green, Ph.D., conducted a study at the Menninger Foundation in Topeka, Kansas. She worked with four people who had epilepsy. Two subjects received alpha feedback (10-13 Hz) and two received beta feedback (15-20 Hz). One trainee receiving beta feedback could produce beta when she created in her mind a strong bright image of the sun. Several months after training, she reported she could block seizures if there was time during the aura. Both beta trainees experienced a reduction in seizures.
Whitsett, Lubar, et al, studied eight severely epileptic patients. Training was done in three phases. All-night recordings were obtained at the end of each conditioning phase. Their findings showed that EEG biofeedback might produce changes in the sleep EEG that are related to seizure evidence.
Wyler, et al, studied 23 patients who had severe epileptic seizures.5 The aim of their study was to reinforce the individual‘s 18 Hz activity over the scalp approximation of abnormal brain wave activity. They reported that many of their patients showed a reduction in seizure activity.
Research by Bruner, Tansey and Chinisci has shown that many people who have epilepsy trained to produce a specific frequency (some produced 12 Hz, others 13 Hz, others 14 Hz) reported a reduction in seizures.6 Electrode placement for their training was the top of the head. Bruner, et al, believe relaxation is a contributing factor in seizure reduction.
The most extensive research in EEG training for epilepsy has shown that training for 12-14 Hz (SMR) or 15-18 Hz (beta) while inhibiting 4 -7 Hz abnormal spike and wave activity is most effective for reducing or preventing seizures. This means the brain will be operating at a moderate tempo, with no sudden breaks or slowing down. This involves concentrating or focusing with the eyes open and the body relaxed. Some individuals practicing this type of biofeedback have described it as: physical therapy with the brain, mental calisthenics, having fun, making a circuit bypass, telling the brain to “do it ,” hard work, and relaxing and feeling positive energy. No matter what feelings or thoughts accompany the training, the common pattern for success is to give a message or cue to oneself, then to relax and let it happen (passive volition).
Putting It into Practice
With practice, producing the desired brain wave activity becomes easier, more natural, and eventually automatic. Some people notice changes in seizure activity after only a few sessions; however, it usually takes many months before there is a significant lessening of the number and severity of seizures.
The length of time usually required to achieve control is the main drawback to this treatment. It can take from 80-100 training sessions, which is much longer than biofeedback training for other problems. Most insurance companies and HMO’s are unaware of the research and benefits, so the training can be expensive. Persistence and motivation are important for the learner. When positive results are seen, they may be dramatic. In addition to reductions in the number and severity of seizures, cognitive skills may improve, there may be a gradual reduction of medication (under the active supervision of the prescribing physician) and/or a normalization of the EEG.
It is extremely important to follow the advice of a physician as training proceeds.
Visualization and direction is a part of the training sessions. Since, in a person with epilepsy, a group of brain cells may be damaged or misfiring, during sessions, you may want to visualize having surrounding brain cells do the work of the damaged cells, or direct new dendrites to send signals between brain cells in a different way.
There are side-benefits of EEG training. The concentration which is necessary to gain control over the brain wave activity tends to inhibit the bursts of undesirable slow spike-and-wave activity. Training promotes relaxation, which in turn also affects the number of seizures related to stress. Keeping records of seizures and circumstances surrounding each seizure increases awareness of situations which trigger seizures, so the person can avoid those situations.
Even though brain cells die each day, we still have plenty to last a lifetime. The average person uses approximately 10% of their brain cells. However, new dendrites, the connections which send signals between brain cells, are continually being born, no matter what our age. As we learn new things (exercise the brain), more and more new dendrites are formed. This is the best prevention for aging and memory loss as well as for healing especially nervous system and brain disorders such as epilepsy.
My Own Healing Path
Learning self-regulation and awareness by controlling the electrical activity of my brain through a combination of SMR (12-15 Hz) training and meditation was helpful for me. The majority of my biofeedback training was aimed at producing SMR. Gaining control over brain wave activity is very subtle and can be lengthy. It took several training sessions before I was able to consciously change my brain wave activity for brief periods of time. I gradually learned by trial and error how to consciously regulate my mind and body. Many months of training were necessary for me to feel control of my brain wave activity for any length of time.
I learned that my brain wave activity would change quickly from a very rapid to a very slow pattern, which is typical of people with epilepsy. This is called hyperpolarized cortical excitability and is characterized by slow (4-7 Hz) brain wave activity which occurs for longer periods of time than in those who don’t have epilepsy. The slow activity is followed by periods of faster (alpha and beta) brain wave activity.