Posted by: newmoon2005 | October 29, 2009

Difficult diagnosis & the human factor – epilepsy

I’m new to the blogging world but would like to start an online conversation forum for some difficult medical diagnoses. This is not a medical site but I will provide links and would appreciate hearing from others who have struggled with these diagnoses.

Derek*, a young man of 19, was diagnosed with epilepsy at 18 years of age when he was a freshman in college living in the dorm. Living away from home for the first time is not a very convenient time in a young person’s life for the time-consuming scheduling and testing involved, especially when there are conflicting and inconclusive results, nor is it the ideal time for experimentation with potent psychotropic drugs with potentially serious side-effects.

Epilepsy, the third most common neurological disorder in the U.S. following Alzheimer’s and stroke, affects almost three million Americans. Epilepsy refers to a variety of disorders marked by abnormal electrical discharges in the brain and typically manifested by sudden brief episodes of altered or diminished consciousness, involuntary movements, or convulsions. It is typically diagnosed by the presence of seizures, blood tests and normal brain scan (to rule out other causes), and an abnormal electroencephalography (EEG). Epilepsy syndromes are reported at and also

Derek’s initial diagnosis was “seizure disorder” of the absence seizure or petit mal variety (more information available on the Mayo Clinic website at . He remembers that sometime between the ages of 10 and 12 he began occasionally feeling light-headed or faint. The symptoms can occur anywhere from once a month to several times a day, but he only has these symptoms when going from a lying or seated to a standing position. He has learned the habit of waiting for a brief amount of time until the feeling passes when he can then stand up without passing out or falling. He reports one time after oversleeping that he did not take the necessary pause before arising and it resulted in a brief loss of consciousness and a minor head injury. Derek also has a sibling with the same symptoms.

Due in part to the fact that this seemed “normal” and the fact that Derek’s parent had experience with postural hypotension (, which seemed to fully explain this phenomenon, no medical attention was sought other than passing mention during regular physical checkups and sports physicals. However, away from home and familiar faces, the symptoms seemed much less average and he was advised to visit the campus health center where he was sent him to the local hospital emergency room and so began the complicated and still unresolved diagnosis.

That was over a year ago. Derek was sent for a full work up with a cardiologist as well as a neurologist during holiday break time from his school. All cardiology exams were normal, although the cardiologist felt sure that the tilt table test ( should have been positive. The EEG was done during Thanksgiving break and it was presumed normal since the neurologist had to reschedule and delay follow-up until Derek was back at school, however that was not the case. A mildly abnormal EEG resulted in the diagnosis of “seizure disorder” a.k.a. epilepsy, and a prescription was written for Keppra.

Derek refused the treatment.
Along with epilepsy goes the fact of being epileptic, and involves far more than the risk of recurrent seizures. It includes prejudice, psychosocial, and stigmatization that might be manageable for a child in middle childhood at home with a supportive parent to help guide them through the minefields, as well as observe their behavior for potentially life-threatening side effects to the psychotropic treatments. The fragility of the ego and the lack of independent resourcefulness of young adults just learning to make it on their own would probably make that the most un-ideal time for this type of diagnosis.

There is also widely-available pharmaceutical information, including the fact that warnings & precautions for Keppra include doubling the risk of suicidal thoughts or behavior. Even more trivial side-effects could have a negative effect on his currently successful college grade point and extra-curricular sports and activities. Placing pharmaceutical requirements on a successful young man with a questionable diagnosis seems debatable. Absence seizures are not listed as one of the indications for Keppra use, which “has been shown to decrease the number of seizures in adults and children with a certain type of seizure (partial onset).” (

Medicine is not a fool-proof science and current health care systems do allow for second opinions, so Derek is currently in that process. Tests need to be repeated and specialists have waiting lists. Fortunately for Derek, the second opinion initial impression was to not recommend treatment at the current time, until further testing is done since there are inconclusive results.

Meanwhile, there are issues and depending on the state and interpretation, Derek’s driving privileges may be in jeopardy. How long a person has to be free of seizures in order to drive varies by state but is usually between three months to a year. There are stipulations for “sleep seizures” since they only happen when sleeping so presumably cannot affect driving so in theory there could be hope for a waiver for “standing seizures” as one would also never go from seated to standing while driving. With the current recommendation not to treat, Derek continues to comply with follow-up testing in hopes of a complete diagnosis and safe treatment.

Information on the worldwide web reveals one interesting alternative treatment if, in fact, the diagnosis is epilepsy. The ketogenic diet was developed in the 1920s and used long before the boom of the pharmaceutical industry ( Other characteristics of the current generation, the Millennial Generation or Generation Y, may be having an effect on diagnosis of neurological syndromes such as epilepsy. With an abundance of digital technology, electronics, and Red Bull, there may be more to consider for correct diagnosis of the get-it-now generation.

*(Name has been changed for confidentiality purposes)

Posted by: newmoon2005 | October 24, 2009

Hello world!

I’m new to blogging and looking forward to this new way of sharing information with the world.