A Mind Unraveled: surviving seizures, meds, and inexcusable neurological care

eichenwald book coverIf you’ve ever experienced discrimination due to your health, or encountered dismissive or unhelpful clinicians, it may be difficult to maintain your composure while reading portions of Kurt Eichenwald’s riveting new memoir, A Mind Unraveled. Eichenwald, an accomplished author and journalist now at Newsweek and Vanity Fair, uses his reporting skills to chronicle the struggles of living with poorly controlled epilepsy. The book is an excellent read, particularly for anyone who’s lived with or cared for someone with epilepsy.

In addition to the disruption and anxiety caused by the seizures themselves, Eichenwald contended with inept medical care, employment and health insurance hurdles, and efforts to expel him from college because of his seizures. He describes the frightening physical and emotional experience of grand mal seizures as well as the problems that result from either disclosing his condition or hiding it. But Eichenwald details all this in the larger context of his strong resolve to live as normal and satisfying a life as possible. He mentions seizures due to flash just once (for more on this, see the last section of this post).

Spoiler alert: The author did eventually find knowledgeable and caring neurologists, and Eichenwald is a very determined guy who makes sure he succeeds despite everything. By candidly sharing his experiences in a compelling and well-documented story, Eichenwald has done a huge service to those with epilepsy and their families and friends. He shares his confusion, fears, anger, gratitude, and grit as well as his regrets for burdens the seizures placed on others. Reducing the number of seizures was possible, finally, but only after undoing damage to his health that could have been avoided with better prior care.

Inadequate care 

Finding doctors willing to engage with him and treat him as a partner in care was a challenge, especially at the onset of his epilepsy in college. When Eichenwald’s first neurologist diagnosed his epilepsy, he offered virtually no information about epilepsy or anticonvulsants, nor did he answer Eichenwald’s questions. A conversation with an epilepsy counselor at the Dallas Epilepsy Association shortly after the initial diagnosis illustrates the impact of this neurologist’s poor communication skills:

The counselor mentioned grand mal seizures, and I interrupted him. “I don’t need to worry about those. My neurologist said I won’t have them anymore.”

“That’s good,” he replied, hesitation in his voice. “How did he determine that?”

“Because I’m going on the medication.”

What Eichenwald didn’t yet know, because he hadn’t been told, is that there are no guarantees for a given individual that a given anticonvulsant will be effective or that its side effects will be tolerable.

At a later point, in the care of a different neurologist, Eichenwald was hospitalized for several days for diagnostic tests. During his stay he had a grand mal seizure that nobody witnessed or asked him about, but Eichenwald was sent home with this assessment:

“You don’t have epilepsy. Your seizures are psychological. You’ve been here for days. You haven’t had a seizure the entire time. The most important part is your EEG. It showed no seizure activity.”

Citing normal EEGs to rule out epilepsy is a subject I’ve written about a number of times. Although EEGs do not always capture seizure activity, some doctors may point to a patient’s normal or inconclusive EEG to rule it out. While this episode clearly occurred before the introduction of video EEG allowed seizures to be captured on video, video EEG scalp electrodes are the same those used for EEG without video. With video EEG a grand mal seizure would be filmed–but subtle seizures with no outward signs could still be missed if the electrodes don’t pick up all seizure activity.

After the hospitalization, Eichenwald learned that circumstantial evidence about his behavior was used by hospital staff to justify the diagnosis of psychological seizures. A brief conversation with Eichenwald would have cleared up misinterpretations of what they had observed, but the staff did not consult him.

A photosensitive seizure not covered in the book

Eichenwald seizure GIF2

This image was sent to Eichenwald in a flashing GIF via Twitter with the intent to trigger a seizure. Upon opening the tweet, he had a grand mal seizure.

In 2016 Eichenwald had a photosensitive seizure when he opened a tweet containing a flashing GIF and the message “You deserve a seizure for your posts.” The sender was tracked down by the FBI and was charged with aggravated assault with a deadly weapon (the GIF).

The incident is still pending in court; that’s probably why it isn’t mentioned in the memoir. According to Eichenwald’s lawyer, the seizure left him incapacitated for several days and with no sensation in his left hand. In addition, Eichenwald had trouble speaking for several weeks afterward.

 

 

 



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