Epilepsy Books

This is an excellent book and helps you deal with the brain disease of a loved one. I read this book because my wife of 21 years suffers from epilepsy.

She was first diagnosed with it about 20 years ago, while I was an Army officer assigned to Germany. She only had one seizure then and the doctors said it was probably stress-induced, so she reduced her stress levels. She did not go on any medication then. The book talks about this type of seizure and how many people in this scenario will only experience one seizure in their lifetime.

She remained seizure free until about two years later when we moved back to the states. The stress of the move, coupled with two new babies (they are 14 months apart) triggered her to have another one. And then another one 3 days after that. She started having seizures every few days. One seizure even occurred while she was driving down the interstate with our two kids in the backseat in their car seats. She luckily could feel it coming on, pulled the car over, put the car in "Park", then had the seizure. The book discusses this phenomenon and I understand it better now.

The book also talks a lot about medications available. In my wife's case, the doctors were able to successfully stop the seizures by putting her on the anti-seizure drug called Tegretol. She still takes it religiously 3 times a day.

The book also talks about the history of epilepsy. How the churches have been telling everyone for 2000 years that it is caused by "demon possession". And about how in many parts of the world the churches are still doing this practice. I can understand this mistake. I mean, if you can't explain a phenomenon truthfully, why not just make something up, like "demon possession"? And then tell all your constituents that you better get in here so you don't get it, too! After all, it just makes good business sense. And their offerings went way up, after this little fib.

And it's really no big deal except that the "aura" of it still lives on today here in the US. That's why we haven't been able to tell our 18 year old daughter's boyfriend that her mommy suffers from epilepsy.

My wife has been seizure free for the last 4 years. But over this past weekend she was staying in a rental house with the family to celebrate her brother's wedding. With the stress from our daughter going off to college in a few weeks, along with my wife being in that wedding, she had another stress-induced seizure Saturday night. She woke up in the middle of the night in that rental house, and ran to what she thought was the bathroom. But she was confused and mistakenly ran into the room where our daughter's boyfriend was sleeping alone. She proceeded to have a seizure attack and fell and broke her ankle. This one was a little different from the other seizures she has had. With this one, she not only urinated herself like all the others, but she also defecated herself this time. All in front of our daughters' just awoken, startled and freaked-out boyfriend. Needless to say, she missed the wedding.

To some, this all might seem funny. But it's not all that funny if you are actually living it. And to the churches, I want to especially thank you all for the added "stigma stress" that she must also endure. Caused by your naked lies. And don't get me wrong, for I am a Christian, and a member of the Methodist church for which I have great respect. But you all have a reckless disregard for all of us who suffer from brain diseases, and you increase our suffering.

This book discusses this stigma. Caused by our churches. I just discussed it a little bit, too.

I believe a unified public apology from all our churches is needed. I hope and pray for this everyday.

Out of the blue my completely healthy 12 year old son went unconscious, fell to the floor and started having what I now know is called a tonic-clonic (or grand mal) seizure. After a week of extensive testing and several doctor visits he was diagnosed with Primary Generalized Epilepsy. Like most parents I HAD to know more---how does this happen, what exactly goes on in the brain leading up to a seizure, what do the antiepileptic drugs do to his body, etc. This was the first book I found on the disease and it has really helped me gain a better understanding of what's happening with my son. It does get a little technical, which I liked & with my modest "medical" type background I had no problem following it. (I took several anatomy & physiology classes which probably helped me with that!) I'm now in search of a book that will explain it in terms my SON will understand...

I have a child with Epilepsy. This book has taught her and her friends a lot. I understood it also helped the Epilepsy Foundation raise money. It is a shame it is out of print or only limited numbers are available. The publisher must be a fool. This book did only good and was well written and illustrated. I loved it and so did my daughter. Her entire class read it and one of my dearest friends who lives in Canada said their child's class read and loved My Friend Emily too. Can it be made available again?
S. Snow

This is an excellent tool for parents, teachers and children who wish to educate others about epilepsy, its causes, symptoms and ways to help individuals suffering from a seizure. The story focuses on entertaining the reader while educating the reader at the same time. The illustrations are charming as are the characters. Please pick up a copy and enjoy while you learn about epilepsy in simple terms.

I read this book a year or so ago and it was quite
useful in describing Photosensitive Epilepsy ( although the more traditional TV / VDT / Strobe and not the new, obscure LCD display / LED ( light emitting diodes ) induced Photosensitive Epilepsy.

Flickering and flashing and blinking, strobing and even motion ( as with a scrolling banner ad on an LCD display ) can all cause epileptic seizures. Technically, they are called "Reflex Seizures" as they have a specific trigger. All possible forms of seizures from Grand Mal, Petit Mal and Myoclonic can be caused as well as innumerable, extremely idiosyncratic, seizures, often very difficult to recognize or to diagnose ( unfortunately, they are almost never recognized ).

There are also obscure interference effects that occur, for example, when walking in a store with some sort of lattice shelving between your eyes and the fluorescent lights. ( some shelves are constructed similar to a picket fence with spaces between the bars ). This can downconvert the normal 120 hertz pulse repetition rate of the fluorescent lights to a lower, more epileptogenic, rate ). No only can televisions ( particularly the older CRT type ) causes seizures due to the 60Hz/15,750hz frame/line rates and the time constants of the phosphor ) but also just abrupt changes in context from one scene to another can cause problems for more sensitive individuals. IF you avoid the television section in your local electronics superstore ( where there are dozens of televisions displaying the same programs at the same time ), you probably have some form of photosensitive epilepsy.

It is truly depressing how little most doctors know about this. Most epilepsy clinics have fluorescent lighting ( just what Dr. Death ordered to make the building accessible to Epileptics ). You can be hanging from the ceiling or bouncing off the walls and, duh, "put a towel over your head". Then, of course, no one can sit in the waiting room without the ubiquitous televsion, on. I have even seen websites for epilepsy treatment with blinking icons or scrolling banners. Real, real intelligent.

Buy this book and read it and then look around and start correlating the external environment ( even low pressure sodium street lights are a major problem and now blinking road speed displays ( they blink and causes seizures in drivers ) and blinking crosswalks ( they blink when a pedestrian is using it ) ) with the information presented in this book.

If you have photosenstive epilepsy, or if you suspect that you may have, or IF YOU DO BETTER OUT IN THE SUN AND WORSE INDOORS ( particularly office buildings and commercial buildings ) ( obviously you could have Environmental Illness or Claustrophobia ) start observing where and when you are better and where and when you are worse. Additionally, notice if certain webpages ( those with animations, tickers or flashing graphics ) cause you more problems than those that do not have these abominations. ( I saw a report in a UK accessibility paper that the vast majority of people are very negatively affected by these "features" )

If you do better away from fluorescent lit areas, such as where the area is illuminated by incandescent lights or near windows with the sun streaming in, you are almost certainly affected by the fluorescent lights. Now, of course, the fun starts when you tell your doctor this. First, he will not believe you unless you have extremely obvious seizures. This probably ( certainly ? ) will not show up on an EEG. AEDs ( anti-epilepsy drugs ) have a lot of adverse side effects so starting a course of treatment should not be taken without some thought.

I did a lot of experiments using an LCD computer display and the results were truly depressing:

Lights ( including displays, marquees, strobe lights, fluorescent lights, LED, etc. etc. etc. )
1) Flash ( blinking ) rate
2) Duty cycle
3) Rise time
4) Contrast
5) Central or peripheral in field of view
6) Color
7) Percentage of field of vision

This is nothing more than visual pollution and should be restricted as it makes it impossible for many people to even live in the world. It is only going to get worse, far worse. ( Additionally, these effects are not necessarily obvious. As I was first studying this, I talked with many people and in the Lake Tahoe Region, talking with outdoor type of people, roughly ( very roughly ), maybe 30% of the people were "annoyed" by artificial lighting.

People did not evolve in an environment with such blinking lights and therefore some individuals are extremely vulnerable. The closest, more natural, causes, are tree trunks and various standing wave phenomena. Also leaves fluttered in the wind ( particular Quaking Aspen ( Populus Tremuloides, as I recall ) with the flattened petiole.

The entire field of vision does not have to be illuminated, even illuminating a few rods/cones can cause people major problems.

Computer animations, scrolling scripts ( messages ), animated icons are another major problem and should be disablable congruent with the American's With Disabilities Act ( good luck )

There should be no blinking rates between 0.1 hz and 1000 hz ( including some safety factor )

Google the term "Flicker Illness" and you will find an article in an Emergency Medicine journal describing how non-epileptic, otherwise healthy people can be seriously effected by the strobing of sunlight pass through the rotor of a rescue helicopter. If you extrapolate to other repetitive signals, it is easy to very strongly suspect that photosensitive/pattern sensitive epilepsy is much more common than commonly accepted.

Accessibility is the LAW. Accessibility is the LAW. And people should not be forced to work with unsafe products. There is absolutely no excuse for the current state of affairs other than indifference and lack of accountability.

Roy Miller

Edited 2008/04/05. I am having seizures from the blinking cursor on the LCD monitor, btw.

I recommend you read this book which afflicts one percent of the people with epilepsy should you have a friend, family member or even yourself be diagnosed with this rare condition. It sure has made a world of difference in understanding & accepting my own personal diagnosis of being "Photosensitive."

This is a great book! it deals with a girl that that has epilepsy. She doesn't want anyone to find out.a girl named Carrie finds one of her pills and finds out about it. And she threatens to tell everyone.

I was introduced to this book when I was eleven years old and my sixth-grade teacher read it to the class. It told of a young girl who was trying to hide her epilepsy (something I had never heard of before) from all of her friends, and how when they did find out, they didn't mind it because they still recognized her for who she was, not the condition that was only a small part of her life.

Two and a half years later, I was attending school with mainly the same classmates when I had two major tonic-clonic seizures in the school library during lunch hour, and was diagnosed with epilepsy. It was strange to realize I had had this all of my life, just unrecognized. In my case, of course, everyone "knew," but because of some positive input from teachers and friends, the others realized that I was still the same person as before and that this was nothing to joke about. I was always grateful for Miss Manning having shared this book with me and my friends, and have read it again many times.

i want research plasticity, so, reading this book...
this articles powerful useing the research epilepsy and plasticity

this book is a fine introduction to all those dealing with childerns with seizures. it tackles the problem from all different aspects even the emotional and economic side. It addresses the reader in a friendly and intamate way.I read it from cover to cover in one session; a light and enriching meal:)

This is an extraordinary book. The title should be taken literally: "Concepts" of Alzheimer's disease, and from a broad range of fields, including historical, genetic, scientific, sociologic, and philosophic viewpoints on the illness. The book is particularly timely, covering new discoveries about the origins of AD (very recently, scientists have reviewed Alzheimer's now-rediscovered microscope slides and even performed DNA tests on them), the history of genetics and psychiatry relative to AD, and the current politico-economic climate, such as the "current history" (1975-2000)of the growing Alzhiemer Association and the National Institute of Aging at NIH. The book is in collected-essay format and the authors are world experts in their fields. It is likely that, while most interested readers will have a background in one niche (such as psychology of AD), they will also be exposed to broad perspectives on AD which are intriguing and new(such as the difference between AD and normal "aging" or "senescence", or the "philosophy" of lab research developed by Fleck and Latour, or the way different kinds of focused and broad interest groups now shape Congressional policy). Alzheimer's is intrinsically complex, so the book is not a light read, but it I found it generally quite well written throughout. A sophisticated general reader can enjoy the book, because it is well written, but the main audience is probably those with some biomedical affiliation (from public health to medical sociologists to Alzheimer researchers). Many of the authors are European and most of the perspective is international; however, several of the chapters focus on US policy and US medical history.

This book is a fantastic overview of the field. Note that it is aimed more at MDs than engineers and therefore lacks a lot of important details. Otherwise, the only downside is that it reflects the field as it was at the turn of the millenium. Brain stimulation in epilepsy is a relatively new and very fast moving field. I would recommend reading more recent reviews in the literature to supplement this excellent book.

This book clearly and succintly covers a complex and controversial subject in neonatal neurology. The authors are authorities on the subject. They offer much credibility on theme at hand. The book is well written and contemporary. Management strategies for neonatal seizures are useful and well presented. The illustrative examples are clear to the subject being presented. I recommend this book without reservation to anyone involved in the diagnosis and management of neonates with seizures.

Until recently, this book was out of print and totally unavailable. ( I had to purchase it three times from used booksellers. One copy was destroyed in shipping, one was lost and the third one I had to purchase from one of those rip-off book dealers in Great Britain. )

BTW, this book is HARDBACK and not paperpack so you are getting what you paid for.

Other books to consider would be:
1) Handbook of Epilepsy Treatment 2nd ed. by Simon Shorvon
2) Status Epilepticus by Simon Shorvon
3) Photosensitive Epilepsy ( New Edition ) by F. A. Graham ( dated but interesting )
4) Partial Seizures and Interictal Disorders by David P. Moore

This book, The Epilepsies: Seizures, Syndromes and Management, has one of the best sections on photosensitive epilepsy in print( from pages 452-472 ). This section, alone, justifies the price and the entire book is of similar value and quality

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Note that the following are general comments about epilepsy and do NOT refer to this book.

In general, there is not much particularly interesting and useful regarding photosensitive epilepsy. To me, testing for photosensitive epilepsy by exposing the patient to a strobe pulsing at various frequencies is marginally diagnostic. ( Outside of discotheques, how often you you encounter pulse trains produced by strobes ? )

Fluorescent lights, computer video display terminals, the dotted lines on a road, fences, trees planted along a roadway, even the oscillations of quaking aspen leaves; NONE of these produce waveforms similar to a strobe. ( Strobes have very, very low duty cycles whereas more natural sources of repetitive flashing / blinking have much higher duty cycles - say from 1% for trees to 50% for fencing or blinking produced by various poorly designed pieces of electronic equipment.

There is an extremely interesting form of epilepsy called non-convulsive status epilepticus. There is a similar form of epilepsy accompanied by complete paralysis ( NOT Todd's Paralysis ) lasting hours or even a day with no postictal confusion. ( There is a reference to this in Moore but I cannot find the page )

It is my thesis that many, many people have a sub-clinical form of epilepsy, better described as cortical irritability, in which they have problems, specifically, with fluorescent lights and computer displays. ( The previous paragraph suggests that some individuals affected with Chronic Fatigue Syndrome or Multiple Chemical Sensitivities may actually have epilepsy ) There are also an enormous variety of reflex epilepsies.

Anyways, I'm warn out so enough is enough.