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Op-Ed: Surviving Wonderland: raising epilepsy awareness

By John David Powell     Nov 11, 2010 in Health
When my wife was diagnosed with temporal lobe epilepsy in 2005, the word “epilepsy” was all she heard. “My ears began to buzz and I felt as if I was going to black out,” she says. “It was as if someone had just told me that I was possessed."
Since that diagnosis, Sharon describes her daily struggles as plunging into a medieval world of demonic possession, of medical professionals who did not believe in the diagnosis, and into an arena of social stigmas that she never knew existed.
Medical experts agree epilepsy affects between one and two percent of the world’s population, with temporal lobe epilepsy accounting for about half of that number. With nearly 7 billion people on earth, and about 310 million in the United States, the number of TLE sufferers becomes staggering: nearly 35 million worldwide and more than 1.5 million in the US, or somewhere around the population of Philadelphia.
The actual number may be much higher, however, because TLE shares many of the symptoms of migraines, anxiety disorders, post traumatic stress disorder, bi-polar disorder, and schizophrenia.
TLE is a neurological condition characterized by recurring seizures in one or both temporal lobes of the brain. The medical field commonly uses the term “complex partial seizures” to include seizures that originate in the frontal foci.
“The psychiatrist who diagnosed me said I was the clearest example of TLE he had ever seen,” Sharon says. “And yet, each day I struggle with the condition and what it means to me and to my family. Doubt is my daily companion, my constant shadow.”
Sharon worked in health information management, hospital patient finance, and medical publications before TLE forced her early retirement. At the time, she was a national expert in ICD-10 coding and gave presentations at conferences around the country.
She points out that until recently, epilepsy was a social curse. “People thought we were insane and locked us away. They prevented us from marrying and having children. They inflicted upon us the most outrageous medical treatments. And they subjected us to religious persecution based upon the false belief that people with epilepsy were possessed by demons.”
Other people believed to have had TLE include Lewis Carroll, Emily Dickenson, Fyodor Dostoevsky, the Apostle Paul, Vincent Van Gogh, and Joan of Arc. It is believed Carroll, author of Alice’s Adventures in Wonderland and Through the Looking Glass, was describing the things he saw during TLE seizures. His condition is also known as Alice in Wonderland Syndrome.
The social stigmas and her difficulties finding useful information online led my wife to the idea of setting up a Web site for her TLE diary, links to epilepsy-related sites, and a forum section where people with TLE and family members can exchange information and concerns. The result was Surviving Wonderland: My Life with Temporal Lobe Epilepsy.
“My site is my attempt to share my experiences and research with others who struggle with this condition. I am not a physician; my information is not professional medical advice. I am offering the living face and human experience behind the diagnosis.”
Sharon is frank in detailing her struggles living with TLE, finding the right diagnosis, managing the trial-by-error treatment from physicians that increased the number and severity of her seizures, and spending the last two years eliminating prescription painkillers from her regimen.
“I went for more than 45 years after my symptoms began to appear before I received the correct diagnosis. But getting it required looking at my complete medical history. Even after this definitive diagnosis and after seeing a specialist, potentially harmful mistakes were made with my medication, because I did not understand how my particular brand of TLE portrayed itself.”
Not everyone with epilepsy has the same reactions, symptoms or triggers. TV shows, fluorescent lights, and the board game Parcheesi can trigger her seizures. Even those whose condition is in a similar area of the brain, such as the temporal lobe, react differently within a large group of symptoms. Sharon believes, and I agree, that doctors misdiagnose TLE because it is shows up in different places and manifests itself in different ways with each person.
As awareness of TLE grows, patients, doctors, and researchers around the world work to minimize the strangeness of the condition and to tap into its gift of perception. Along with awareness is an increase in information available about TLE. “We don’t have to depend totally on doctors to research and understand its potential options and dangers. We need only use the tools available to us,” Sharon says.
In one diary entry, Sharon wrote: “All information on the Internet will replicate itself over time. Replication results when people copy, without verifying, information to use on their Web sites, blogs, columns, forums, etc. If the information is incorrect, it still multiplies. This is why, when developing a picture of your illness, you need to compare sources and determine what you believe applies directly to you. From that point, use those sources to form a foundation and a means of comparison. In essence, you are building a “straw man” of your condition, one you can observe from a rational point of view to decide what benefits you as a person and you as a patient.”
Sharon hopes visitors to her site will take away an understanding that you must have an open, complete, and honest relationship with healthcare providers. “Write down what’s happening to you, detailing when they occur, the frequency, the severity, how long they last, and what was going on with you at the time. Make a list of all medication and supplements you’re now taking or have taken. And have someone close to you, who observes you on a daily basis, keep notes and share them with you and your healthcare provider.”
She emphasizes that a family physician probably is not the key provider, but the doctor can direct the patient to a neurologist and a psychiatrist. “These three providers, along with a pharmacist, clinical psychologist or social worker, and a support group of other TLE patients, make up your team and will give you the best chance to survive your life in Wonderland.”
November is National Epilepsy Awareness Month. You can learn more about epilepsy at
This opinion article was written by an independent writer. The opinions and views expressed herein are those of the author and are not necessarily intended to reflect those of
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