Despite afflicting over 1% of the population — that is, 3,000,000 Americans and 50,000,000 people worldwide — epilepsy is still relatively unknown to the average person. When most people think of epilepsy, they think of a person flailing around on the ground involuntarily. This type of seizure, known as a “tonic clonic” or “grand mal” seizure, is one form that epilepsy can take, however it does not represent the majority of what epileptics go through.
The truth is, epilepsy is not a single disorder; it is a category of seizure disorders which can take many different forms. It is very common for people with epilepsy to have seizures which are not noticeable to other people. Absence seizures, simple partial seizures, and complex partial seizures may all go unnoticed. A seizure may be as simple as smelling something that isn’t there or having some strange emotions. Partial seizures may cause hallucinatory experiences, loss of the ability to speak, inability to walk, complete loss of awareness, or simple loss of awareness of the world around the patient while a single, intense, and terrible emotion dominates the entire perception of this person. Imagine losing all of your senses and only perceiving intense fear for what feels like an eternity.
Although there are medications to treat epilepsy, 30% of epileptics will be unable to achieve seizure control with any form of treatment. Those who do manage to achieve control of their seizures are in for a lifetime of terrible medication side effects, including hair loss, sedation, inability to sleep, emotional outbursts, or any number of other things — depending of course on the medication or (unfortunately, very frequently required) combination thereof.
This is not to say that everyone who has epilepsy will have their life completely ruined. Indeed, many people with epilepsy are able to live normal lives. On the other end of the spectrum however, are others who are completely disabled and will need help with daily living. Even those who live relatively normal lives have things to worry about. For many, their medication eventually stops working and they must switch to a different one (or three). This is frustrating due to the length of time it takes both to find a medication (or combination thereof) which works, the time taken for one’s body to get used to the presence of these new chemicals, and side effects which may be more severe on the newer medications. If no medication works, many have to consider brain surgery or other treatments.
In addition to difficulty with treatments is the frustration of obtaining a diagnosis of epilepsy. Multiple seizures must occur before some doctors will even evaluate a patient. The patient is typically given an MRI (to look at brain structure) and an EEG (to look at electrical activity of the brain) in order to diagnose seizures. For an EEG to indicate epilepsy, a patient must have a seizure at the time of the test. This often means the doctors must try to give the patient a seizure, which is frightening and very uncomfortable. Even if a seizure occurs during the test, the EEG may not pick it up, as it is a surface technology and cannot detect seizures that occur deeper in the brain. Up to 30% of patients diagnosed with epilepsy will have completely normal EEG readings, even after several tests have been administered.
Epilepsy kills as many people each year as do breast cancer and car accidents. Patients can have seizures without warning, leading to injury if they fall, walk into a street while unaware, go into status epilepticus (where a seizure doesn’t stop) and nobody finds them in time, or experience sudden unexpected death in epilepsy (SUDEP). Suicide rates are also higher in patients with epilepsy, perhaps understandably.
Additional injury often occurs when people attempt to administer unnecessary first aid to a person who is having a seizure. If you witness someone having a seizure, do not try to put anything in their mouth. Contrary to urban legend, a person cannot swallow their tongue in any case. Do not try to restrain somebody having a seizure. If they are ambulatory, try to keep them away from dangerous locations such as busy streets or staircases. If they are convulsing on the ground, put something soft under their head to prevent injury. Most seizures will stop on their own, within a couple minutes. If a seizure lasts longer than 5 minutes, calling an ambulance could save the person’s life.
Finally, not everyone with epilepsy has a seizure when exposed to flashing lights. For many, seizures are completely random. Others have triggers such as not getting enough sleep, not eating properly, and so forth. Photosensitive epilepsy only occurs in 3-5% of sufferers. In addition to flashing lights, certain kinds of patterns, fluorescent lighting, CRT (non-flatscreen) computer and television monitors, and other kinds of visual stimuli may trigger a seizure.
Simple partial temporal lobe seizures might look something like this, when I’m having a seizure:
http://www.flickr.com/photos/8105303@N03/sets/72157622622860689/with/4080800558/
The series of pictures depicts what I might see over the course of a few minutes. It is not 100% accurate, but it is close enough that it makes me nervous to look at them. First I will see translucent blue outlines around people. I might taste salt, wine, or plastic in my mouth. I will lose my balance and have problems speaking. Bright or dark blindspots will appear in my vision, and faint rainbow streaks will appear. Distortions in the size of things may occur, and I will become dizzy and have blurred vision.
Epilepsy is a serious condition, and in spite of it being the second most common neurological condition (migraine is the first), very few people know anything about it. If you would like to help spread the word and make a difference by bringing epilepsy out of the darkness, share this information with your friends. People with epilepsy are just as intelligent, funny, or creative as anyone else, but due to lack of information, many people misunderstand them, leading to fear or laughter, and thus to isolation for the sufferer.
Below is an epilepsy awareness flyer/fact sheet I’ve found. If you can, print it out and post it on college campuses, town bulletin boards, and other places where it will be seen. Feel free to link to this article as well.
Epilepsy Awareness Fact Sheet [PDF]
This was all written from memory. If anyone sees information which appears inaccurate, please let me know.
Really helpful information & brilliantly written, thanks very much. I am 35 & ‘think’ I may be having seizures. Apart from one lasting a minute about 6 months ago, I’m now having what I think may be repeated ‘abscence’ type seizures lasting only seconds but nevertheless, quite scary & the info you’ve provided has been very helpful to me in trying to understand exactly what I’m experiencing.