Epilepsy 101 - Part FAQ, Part tips and advice

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Are you newly diagnosed with epilepsy? Here are some things which you should know:
  • Types of seizures - there are many different types of seizures. Most people only know about grand mal (tonic clonic) seizures, but there are actually many types from absences (staring spells with brief loss of consciousness - missing time), drop attacks (atonic seizures), myoclonic "jerks", auras and a whole spectrum of complex partial seizures where strange and mysterious experiences may be encountered. The more you know about the types of known seizures, the better you can communicate with your neurologist/epileptologist what is happening in your case.
  • Your memory may not be as good as you think it is - Seizures can affect your critical thinking capacity and memory recall. If you are having uncontrolled seizures, it is a good idea to take someone who knows you very well with you when you see your doctor. They will be able to communicate details about your seizures that you simply don't know about (because they involve loss of consciousness). They can also help remember whatever the doctor says to you in the meeting if you don't have it all written down (and few doctors take the time to write everything down in a legible handwriting).
  • The two most common seizure triggers are stress and lack of uninterrupted sleep. Most people do not get enough sleep. Many people with epilepsy don't get as much sleep as they think they do - they have sleep apnea.
  • EEG tests - Can show epileptiform activity in the brain (confirming abnormal/seizure activity), but a negative result showing normal activity does not rule out the possibility of seizure activity. It just means it didn't happen in the short window of time that the EEG was recording.
  • CT scans/MRIs - These are used to try and identify lesions/scar tissue in the brain that might be a focal point for seizure activity. If found, you might be a candidate for brain surgery.
  • AEDs don't work like aspirins - they have to be metabolized in the liver and released into the blood stream. The body needs to maintain a steady blood syrum level of the drug to maintain therapuetic benefits. When starting or stopping an AED, you need to ramp up/down the drug slowly as the drug titrates into the blood stream. The level of drug in the blood stream is not necessarily a 1 to 1 correspondence with the amount of drug you ingest (ie. double the dose from 100mg to 200mg and your blood syrum could potentially increase 10 times).
  • Get a pill box - If you have a prescription for an anti-epileptic drug (AED), you need to remember to take it every day. Missing a single dose could disturb the blood syrum level of the drug and put you in danger of having seizures. A weekly pill box (with dividers) can help you remember to take your pills (or if you have taken it if your memory can't always be trusted).
That's all I can think of for now. I'll add more as they come to me.
› Lab Work-Up: The Doctor will order this - which can range from urine to blood samples. They also look for other possibilities such as low-sugar levels, diabetics, or other medical conditions that may cause seizures.
› Patient History: The Doctor will need to know about your background if your family member, relatives on either side of your family have a history of having seizure disorder or epilepsy or any other medical condition. If adopted - if any medical background is known, if so, what?
  • Postictal - You should know that following many types of seizures is a state called postictal. During this post-seizure phase, the subject is *not* conscious. They may laugh, be confused or angry, talk gibberish and/or have a spaced out look in the eyes and seem somewhat conscious - but unresponsive to those around them.
  • Memory - Seizures can affect your memory recall. If you have trouble remembering things, it is likely related to your seizure activity. The good news is that your memories are still there in your head. The longer you go without seizures, the better chance your recall system has a chance to reorganize/heal/normalize and your ability to remember will return.
EPI Basics from NYU

I came across this desription of epilepsy on the NYU site. It was interesting to see the current conventional view and that the disorder is not now viewed as being lifelong and that children often outgrow it. No copyright on it so assume it is safe to share it here with a link to their site:

Modern Facts About Epilepsy

Epilepsy has afflicted human beings since the dawn of our species and has been recognized since the earliest medical writings. We now understand that epilepsy is a common disorder resulting from seizures that cause temporary impairment of brain function. Few medical conditions have attracted so much attention and generated so much controversy. Throughout history, people with epilepsy, as well as their families, have suffered unfairly because of the ignorance of others. Fortunately, the stigma and fear generated by the words "seizures" and "epilepsy" have progressively diminished during the past century, and the majority of people with epilepsy now lead normal lives.

The Greek physician Hippocrates wrote the first book on epilepsy, titled On the Sacred Disease, around 400. Hippocrates recognized that epilepsy was a brain disorder, and he refuted the ideas that seizures were a curse from the gods and that people with epilepsy held prophetic powers. False ideas die slowly, though, and for centuries epilepsy was considered a curse of the gods, or worse. For example, in a handbook on witch-hunting, Malleus Maleficarum, written by two Dominican friars under papal authority in 1494, witches were identified by the presence of certain characteristics, including seizures. The Malleus brought about a wave of persecution and torture and led to more than 200,000 women being put to death. In the early 19th century, people who had severe epilepsy and people with psychiatric disorders were cared for in asylums, but the two groups were separated because seizures were thought to be "contagious.''

The modern medical era of epilepsy began in the mid-19th century, under the leadership of three English neurologists: Russell Reynolds, John Hughlings Jackson, and Sir William Richard Gowers. Still standing today is Hughlings Jackson's definition of a seizure as "an occasional, an excessive, and a disorderly discharge of nerve tissue on muscles.'' Hughlings Jackson also recognized that seizures could alter consciousness, sensation, and behavior.

The past century has brought an explosion of knowledge about the functions of the brain and about epilepsy. Research in epilepsy continues at a vigorous pace, with investigations ranging from how microscopic particles in the cell trigger seizures, to the development of new antiepileptic drugs, and to a better understanding of how epilepsy affects social and intellectual development.

People with Epilepsy Are Not "Epileptics''

The word "epileptic'' should not be used to describe someone who has epilepsy, as it defines a person by one trait. A label is powerful and can create a limiting and negative stereotype. It is better to refer to someone as "a person with epilepsy'' or to a group of people as "people with epilepsy.''

People with Epilepsy Are Not Necessarily Brain Damaged

Epilepsy is a disorder of brain function that may or may not be associated with damage to brain structures. Temporarily disturbed brain function can also occur with extreme fatigue; with the use of sleeping pills, sedatives, or general anesthesia; or with high fever or serious illness. "Brain damage'' implies that something is permanently wrong with the brain's structure. It may occur with head trauma, cerebral palsy, or stroke. Injuries to the brain are the cause of seizures in some, but by no means all, persons with epilepsy. Brain injuries range from undetectable to disabling. Although brain cells cannot regenerate, most people make substantial recoveries after brain injuries. Brain damage, like epilepsy, carries a stigma, and some people may unjustly consider brain-injured patients "incompetent.''

People with Epilepsy Usually Are Not Retarded

Many people mistakenly believe that people with epilepsy are also mentally retarded. In the large majority of cases, this is not true. Like any other group of people, people with epilepsy have different intellectual abilities. Some are brilliant and some score below average on intelligence tests, but most are somewhere in the middle. The majority of people with epilepsy have normal intelligence and lead productive lives. In some people, however, epilepsy is associated with brain injuries that cause neurological impairments, including mental retardation. With only very rare exceptions, seizures do not cause mental retardation.

People with Epilepsy Are Not Violent or Crazy

The belief that people with epilepsy are violent is an unfortunate image that is both wrong and destructive. The vast majority of people with epilepsy have no greater tendency toward irritability and aggressive behaviors than do other people in the general population. Many features of seizures and their immediate aftereffects can be easily misunderstood as "crazy'' or "violent'' behavior. Unfortunately, police officers and even medical personnel may confuse seizure-related behaviors with other problems. However, these behaviors merely represent semiconscious or confused actions resulting from the seizure. During seizures, some persons may not respond to questions, may speak gibberish, repeat a word or phrase, crumple important papers, or may appear frightened and scream. Some persons are confused immediately after a seizure, and if they are restrained or prevented from moving about, they can become agitated. Some persons may be able to respond to questions and carry on a conversation fairly well, but several hours later they will have no recollection of the conversation.

Anxiety and depression may be slightly more common among people with epilepsy than in the general population. In some people, problems associated with epilepsy, such as injury to specific brain areas or sensitivity to certain medications, can contribute to aggressive or confused behavior.

Seizures Do Not Cause Brain Damage

Single seizures do not cause permanent brain damage. Although tonic-clonic grand mal seizures lasting longer than 30 to 60 minutes may injure the brain, there is no evidence that shorter seizures, lasting less than 30 minutes, cause permanent injury to the brain. Prolonged episodes of other types of seizures also are unlikely to injure the brain.

Some persons have difficulty with memory and other intellectual functions after a seizure. These problems may be caused by the aftereffects of the seizure on the brain, by the effects of antiepileptic drugs, or both. Usually, however, these problems do not mean that the brain has been damaged by the seizure.

Epilepsy Is Not Necessarily Inherited

Most cases of epilepsy are not inherited. However, some types of epilepsy, most of them easily controlled with medications, are genetically transmitted, that is, passed on through the family.

Epilepsy Is Not a Life-Long Disorder

Most persons with epilepsy do not have seizures or require medication all their lives. The majority of childhood forms of epilepsy are outgrown by adulthood. For most forms of epilepsy in children and adults, when the person has been free of seizures for 2 to 4 years, medications can often be slowly withdrawn and discontinued under a doctor's supervision.

Epilepsy Is Not a Curse

Epilepsy has nothing to do with curses, possession, or other supernatural processes. Like asthma, diabetes, and high blood pressure, epilepsy is a medical problem.

Epilepsy Should Not Be a Barrier to Success

Epilepsy is perfectly compatible with a normal, happy, and full life. The person's quality of life, however, may be affected by the frequency and severity of the seizures, the effects of medications, and associated neurological disorders. Some types of epilepsy are harder to control than others. Successfully living with epilepsy requires a positive outlook, a supportive environment, and good medical care.

Acquiring a positive outlook may be easier said than done, especially for those who have grown up with insecurity and fear. This difficulty highlights the importance of instilling in children with epilepsy a sense of self-esteem. Many children with epilepsy have low self-esteem, perhaps caused in part by the reactions of others and in part by parental concern that fosters dependence and insecurity. Children develop strong self-esteem and independence through praise for their accomplishments and emphasis on their potential abilities.

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Good article Zoe !!!!!!!!
Dr Devinsky and his staff always tried to make you feel like the epilepsy was not the end of the world.

I was taught that from the day I was first diagnosed with epilepsy. Epilpesy was not an
excuse!!!!!!!!!!! I had to go to school , work ,pay taxes just like everyone else.

Attitude was everything
Right Riva,
And you have ATTITUDE all in caps!
Great article Zoe!
I am going to place it in the nurse's office at Rebecca's school, so that the parents that volunteer there can read it, and then perhaps teach their children.
The word "epileptic'' should not be used to describe someone who has epilepsy, as it defines a person by one trait. A label is powerful and can create a limiting and negative stereotype. It is better to refer to someone as "a person with epilepsy'' or to a group of people as "people with epilepsy.''

In my mind, I would think of the person (or people) as "a person with an epilepsy" or "people with epilepsies". For example, how can a person with epilepsy suffered from a traumatic head injury or from a growing brain tumor be similar to a person whose endocrine system has been injured due to an infection or fever? Epilepsy seems somewhat similar to fever in that both a fever and epilepsy have a variety of different causes.

I agree that attitude is everything. I don't drive because of my epilepsy (I have complex partial seizures and the Dr. is trying to find the right combo to make them stop happening.) I can walk almost everywhere though and as long as my legs work I can get around. Life is too short to think about what you don't have instead of being greatful for what you do have. And on a side note......seizures must not affect everyone's memory my brother swears from stories I tell from our childhood and such that I can remember the day I was born! haha

THIS is where I need to be. So many questions. Exactly what is the difference between "epilepsy" and a "seizure disorder"? What I got from the neurologist was that it's the same thing. That "Epilepsy" is not a specific disorder that causes seizures, that it is seizures caused by a variety of things.

Does that mean my husband's mystery brain-disease-which-causes-seizures = epilepsy? The root cause is still a major health issue, and a complication of it all is epilepsy?

Conversely, I have been led to believe that his seizures aren't "epilepsy".

I have had a rough time reporting his seizures to the neurologist, no one has educated me about types of seizures. All I know about types was from listening to residents discuss with neurologists.

Tonight he had a really different seizure. He saw white (normal), but he was aware, could hear, but was paralyzed. He has never been aware or responsive to my knowledge. My I was totally surprised to read that someone here (Buckeyefan?) woke up and realized he was HAVING a seizure...was able to try to take his own pulse!

I really feel like a tool when I report Cord's seizures at our three month follow-up, I can't label the types seizures for the neurologist. There are always more questions than I can answer. Mostly, I worry about timing the seizure. Also hard because there is no starters pistol or obvious finish line. Because of the history of status epilepticus, and us being 20 minutes drive to the nearest hospital, he has a five minute deadline before I need to call 911.

The demands of it all become impossible to meet. I'm irritated about the lack of education for me and the demand for information from me. And yet, what I have to say is more helpful than what notes the hospital sends. Nice system.

Maybe I should be in the padded room?!
Keep reading and soon you'll be speaking the neuro's lingo. :)

Oh, and epilepsy is an umbrella term kinda like vegetarian refers to a whole spectrum of diets.

Either way, I wouldn't worry about the label too much. The important thing is understanding your DH's specific case and getting the seizures under control.
The first seizure and its management in adults and children


This review presents a comprehensive approach to children and adults with a first seizure, an event that may have profound emotional, social, and vocational consequences.

A first "grand mal" convulsion is frightening, yet prospective, population-based studies indicate that we all face an 8-10% lifetime risk of one seizure1 and a 3% chance of epilepsy.2 It seems likely that everyone could have a seizure if a particular set of circumstances occur—but some people have a lower seizure threshold than others. A first seizure caused by an acute disturbance of brain function (acute symptomatic or provoked) is unlikely to recur (3-10%). If a first seizure is unprovoked, however, meta-analyses suggest that 30-50% will recur; and after a second unprovoked seizure, 70-80% will recur, justifying the diagnosis of epilepsy (a tendency for recurrent seizures).3-5

When a person presents to the healthcare system with a first seizure, it is almost always a convulsive seizure, either generalised or focal. Other seizure types such as absence or complex partial seizures typically occur several times before the person or family become concerned.


We reviewed all literature listed in PubMed under the headings "first seizure" and "initial seizure." Two of us have helped to develop a practice parameter on treatment of a first seizure in children, and all of us have conducted prospective studies of first seizures. We are unaware of any systematic (Cochrane) review of this topic. All references cited were judged to give strong evidence.

Is it a seizure?

The differential diagnosis for a first seizure is wide. Most important in our experience are syncope (including breath holding and pallid syncope), transient ischaemic attacks, metabolic encephalopathy (including hypoglycaemia or electrolyte disturbance), sleep walking, night terrors, complex migraines, cardiac arrhythmias, and pseudoseizures. "Convulsive syncope" presents a particular challenge when syncope provokes a post-anoxic convulsion. A detailed history from both patient and witness is paramount, but no single feature is diagnostic. Tongue biting is not common but is fairly specific for a convulsive seizure, while postictal confusion suggests a seizure. If the first event is ambiguous, we advocate waiting for a recurrence for clarification. In our experience, and as outlined in a thoughtful review, misdiagnosis of an "epileptic" seizure may be more stigmatising than a delayed diagnosis of epilepsy.6

The first seizure and its management in adults and children

The full article (click link above) is worth reading.
You are always welcome to post links to research about epilepsy (and how it relates to DID or other conditions) in the Library. :)
About Anti-Epileptic Drugs / Side Effects & Emergencies - The When What and How's?


  • Some individuals may not experience any side effects
  • Some individuals may experience a minimal side effects at first but will go away after a period of time (which they call it a 'honeymoon phase') during the titration of the medication.
  • Some individuals may experience a mild side effects that are tolerable but can stay with the medication(s). (It's either take the medication(s) or risk the seizure(s) which in turn 'may' endanger you and put you at a risk for brain damage)
  • Some individuals may not experience any side effects at all for a period of time, then develop a tolerance (or resistance) - then side effects begins to manifest; and if ever this becomes the case, then one must consult with their Epileptologist or Neurologist; for it may be that the dosage may need to be decreased or it may be that seizures are 'changing' and you need to be re-evaluated again. It may also mean it might be a time to change your AED or AEDS or adjust them accordingly or even having to have a full Neurological Work-Up.
  • Some individuals develop side effects not long after beginning the medication and it must be discontinued and monitored by the Epileptologist or Neurologist. DO NOT EVER STOP THE MEDICATION YOURSELF!
  • IMPORTANT NOTICE: Some medications needs frequent or sporadic blood level work up. There are some Epileptologists and Neurologists that do not follow through on this, so it pays to do your homework on the drugs you are taking and to ask questions about the drug(s) you are on.
  • EMERGENCY NOTIFICATION: If at any time you experience: shortness of breath, chest pains, numbness that radiates especially to your left side of your body, drooping of your face, sudden unexplained rashes that just came up, or experience anything that is unusual to you, thoughts of suicide - Call your Epileptologist or Neurologist or 911 or Go to the Hospital Immediately. Do not consult with CWE - We are not Medical Doctors here! The Doctors / Hospital will take care of you and evaluate you and take care of you.
  • This is NOT an exhaustive list - only a BASIC LIST.
The reason I found this site was because I had 'a brilliant neuro" who discounted my 'claims' of rx toxisity. He actually tried to trick question me as to my side effects to see if they were 'real' according to him. Topamax was ereasing my brain and he was challenging my complaints. Basically, the rep said that doesn't happen so I must be wrong or a complainer. I now have a new doc and when I tell him the new meds are not working for me he says ok. I even dropped the dosage on the phenabarbitol to half (he whined a little ) but said he would moniter the effectiveness. So far it is only is only so-so but I am able to function in the day...that is well worth it. This site gave me the courage to say no and to realize I am not alone, many others have had the same issues. I am not crazy, I do have sensitivities to medications. Doctors have a diploma but I am the one haveing the seizures!:soap:
Hi Paradise - I'm fond of saying...Doctor's can't know how you feel in your head. My psychiatrist deciided to increase dosage of Clonopin without informing me. After a day of stumbling around like a drunk, I looked at the bottle and realized what he had done. I had to monitor my dozage on my own and I'm OK now. Boy, will he hear it from me! Laurie
I am learning SSSOOO much in here just from last night to this morning! It is like someone just turned on the light in a pitch black hallway! (Mouth agape) (Amazement) thank you everyone for posting so much info on here! Hippocrates???? Wow! At least I feel smarter now,lol. MY Neurologist had me feeling like a complainer/ idiot. But every question he asked me, and dismissed my answer is here! HE was wrong! Not me! (whew!) Thanks again!
Hey Kristina, this is the best place I have found for information and validation. I take both with me to my neuro's office. Sometimes it is still a fight. I do not do well on the meds for two reasons, not controlled and no visible life. So I fight to stay off and he fights to put me on something. We compromised by doing phenabarbitol at night. This helps me sleep better, which helps the seizures overall. I still have good days and bad days but I enjoy the good ones and sleep thru the bad ones if I can. I just try to stay upright as much as possible - but trust me, I took a long hard road to get to this place in my life, some of those bumps were pretty rough but I gotta say, I couldn't, wouldn't have made it without my family! Hang in there and don't be afraid to take a hand, or to say no when it is not working for you. (actually I am not sure which is harder to do):bigsmile:
Hi Kristina, Fellow blue butterfly...You will continue to learn so much here. You will be armed with neurological information so you can communicate better with your doctor. This has been my experience! I've been diagnosed with TLE and was sure I had never experienced an aura until I read here about Neocortical symptoms. My kind of auras. See, through this site I have something yet to explore! And you build healthy relationships here. A very nice and important perk!
Well, I feel that I have just read a book. This is a real community. I want to say thank-you to all of you for your knowledge and compassion. Learning about LGS and how it may affect my son and I is going to be a real challange. I'm glad I have a circle of friends such as you . Teresa and Alex
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