Tag Archives: epilepsy

Epilepsy, Seizures and Twitter

Twitter can be a great platform for disseminating reliable medical advice and information. Unfortunately, it can also spread misinformation and downright offensive commentary about medical conditions and the people who live with them. That sad fact was illustrated in a study conducted by neurology researchers at Dalhousie University, who sought to investigate stigma regarding epilepsy on Twitter. A preliminary 2-day analysis showed that the word “epilepsy” mainly brought up informational content, so for 7 days they searched only for tweets containing the words “seizure,” “seizures,” “seize,” and “seizing.”

 Among 1,504 such tweets analyzed, nearly a third (32%) were categorized as “metaphorical,” such as “My blackberry just had a seizure.” Another 31% were personal accounts, such as “I feel so helpless when my dog has a seizure.” Just 12% contained informative, factual information about seizures, while 9% were ridicule/jokes, including “What do you do when someone’s having a seizure in the bathtub? … Throw in a load of laundry.” Others were categorized as miscellaneous, opinion, and advice seeking, accounting for 8%, 6%, and 2% of tweets, respectively.

A majority of the metaphorical comments were derogatory in nature. Taken together with the ridicule/joke tweets, these negative comments accounted for 41% of the sample. “This is a big problem…Even though we may think we’re doing a good job of reducing stigma, we’re not,” Dr. Paula M. Brna said in an interview during the American Epilepsy Society (AES) Meeting, where she presented the study findings in a poster.

Indeed, the “laundry” joke was re-tweeted an “astonishing” 77 times in a 24-hour period, Dr. Brna and her associates wrote in their paper, which was posted online the week of the AES meeting.

There were a few tweets that spoke out against the offensive tweets. One tweet said “Why do people joke about epilepsy and seizures? Do they joke about cancer? Attach your brain 2 a car battery & see how funny it is!”

The authors wrote, “The online voice of those speaking out against such negative stereotypes and disparaging remarks needs to be stronger. This emphasizes a need for improved epilepsy education and motivation for people with epilepsy as the foundation to improve public knowledge and behavior.”

-Miriam E. Tucker (@MiriamETucker on Twitter)

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Can Pill Color Prompt a “Nocebo” Response?

What’s the opposite of a placebo? An active drug, of course. But what’s the opposite of a placebo response? That would be a “nocebo” response, in which placebos produce adverse side effects.
 
“It’s somewhat hypothetical, but you can imagine that if somebody feels they will get better, they will get better, and if they feel that they’re taking something that’s not good for them, they might get worse,” according to Dr. Allan Krumholz, professor of neurology and director of the Maryland Epilepsy Center, Baltimore.

Image courtesy of Dr. Tricia Y. Ting

Pill color and appearance have been identified as a potential source of “nocebo” response, and differences in appearance between brand-name and generic drugs have been postulated to explain why some patients experience increased adverse events when they switch from brand-name to generics.

In response to this growing concern, in August 2010 the Food and Drug Administration solicited proposals for bioequivalence studies of the impact of switching from brand-name antiepileptic drug lamotrigine (Lamictal) to generic among patients with epilepsy in the outpatient setting.

This is a new way of conducting such trials. “Pharmacokinetics trials across all areas of medicine have traditionally been highly controlled single-dose studies in healthy volunteers dosed in the laboratory setting,” said lead investigator Dr. Tricia Y. Ting, a neurologist who works with Dr. Krumholz at the UMD epilepsy center.

Because the brand-name Lamictal and its generic counterparts look very different, the investigators decided to over-encapsulate the pills with identical coverings in order to “blind” the patients to which formulation they were taking.

But in order to do that, they first needed to determine whether the color of the pill would impact the patients’ perception of safety and efficacy. A group of 80 adult epilepsy patients were shown standard AA size capsules in five “global colors” (white, yellow, gray, caramel, maroon) and asked to select any color(s) considered “unacceptable” and to rank their preferences.

More patients deemed gray, caramel and maroon colors “unacceptable” (21%, 19%, and 20%, respectively) compared with the white and yellow (5% and 4%, respectively). There was a clear preference for white and yellow pills over the other, darker colors, without much difference between white and yellow.

But, there were patients who selected maroon as their “preferred” color. “Some people didn’t have any preference. Some had a very strong preference. One patient, an artist, liked the darker colors. It was different for different people,” noted Dr. Karen M. Aquino, a neurology fellow who worked on the nocebo study.

So what pill color will the bioequivalence study use? “To optimize drug adherence, white colored capsules will be used for over-encapsulation,” Dr. Ting wrote in her poster, which was presented at the American Epilepsy Society’s annual meeting in Baltimore. Dr. Krumholz and Dr. Aquino presented the pill color preference data in a separate poster at the meeting. The bioequivalence results are expected in 2013.

-Miriam E. Tucker (@MiriamETucker on Twitter)

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Epilepsy Patients Take Control

Epilepsy, like other chronic medical conditions, leaves affected individuals feeling out of control and isolated, says Shelly Stoll, MPH, of the University of Michigan.

Ms. Stoll, along with colleagues at the university and the Epilepsy Foundation of Michigan, developed a program for individuals with epilepsy (IWE) to improve their self-care.

The researchers conducted a pilot study of their intervention and presented the results at the annual meeting of the American Epilepsy Society in Baltimore, Md.

The 21 study participants were epilepsy patients aged 21 years and older. They completed telephone interviews at baseline and four months after completing the 6-week intervention.

The FOCUS intervention includes five elements:

-Figure out the problem or issue.

-Observe your routine.

-Choose a change goal.

-Undertake a change strategy.

-Study the results and select a reward.

The intervention included a day-long workshop followed by weekly telephone calls with a coach, some of which were conference calls with other patients.

Although this intervention didn’t reduce the frequency of seizures, the patients showed significant improvement from baseline in terms of quality of life and positive well-being.

The researchers admitted that the study is small and the findings preliminary, but the results merit a larger study with a longer time frame. Ideally, patients who participated in this study will continue to benefit. The researchers quoted one satisfied patient, who said, “I plan to keep moving forward, empowering and taking my life into my hands regardless of how epilepsy has tried to conquer me.”

The study was supported by the Centers for Disease Control and Prevention and the Managing Epilepsy Well network.

(Photo courtesy of Lidingo via wikimedia commons (creative commons attribution share-alike license)

–Heidi Splete (On Twitter @hsplete)

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Video of the Week: Perampanel Reduces Seizure Frequency

Daily adjunctive therapy with the investigational oral drug perampanel significantly reduced the frequency of seizures by 5%-14%, compared with placebo. The data come  from a multinational phase III clinical trial of 388 patients with hard-to-control epilepsy that was presented at the annual meeting of the American Academy of Neurology.

Patients in the study had uncontrolled epilepsy despite being on one to three other antiseizure drugs, and they continued their usual medications during the trial, according to study investigator Dr. Jacqueline A. French.

Our reporter Sherry Boschert talked with Dr. Marc Nuwer, professor of neurology at the University of California, Los Angeles, who said that the most exciting thing about perampanel is that it establishes a new category of drugs.

You can read more about the study by visiting Clinical Psychiatry News online.

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When Silence Turns Deadly

Epilepsy killed Christopher Donalty, and as sure as his mother Jeanne Donalty is that the 21-year-old student athlete from Utica, N.Y., died too young, she is even more certain that the failure of his physicians to be frank with the family about the potential risk—albeit rare—of fatality linked to the disease contributed to his death.

“Patients need to know that they can die from epilepsy,” Mrs. Donalty stressed in a press conference about Sudden Unexplained Death in Epilepsy (SUDEP) at the annual meeting of the American Epilepsy Society held this week in San Antonio. “If we had known, if Chris had known, he might be alive today to tell his own story.” Instead, his mother travels the country on behalf of Citizens United for Research in Epilepsy (CURE) delivering the message that her son cannot.

Christopher Donalty died on February 21, 2002 of Sudden Unexplained Death in Epilepsy (SUDEP). Photo courtesey of http://www.cureepilepsy.org.

Christopher died in his bed, surrounded by his textbooks, in 2002, just months before he was set to graduate with honors from Florida’s Stetson University. Diagnosed with epilepsy before his senior year in high school – eight years after suffering his first seizure of unknown etiology in fourth grade and four years after a similar second seizure in eighth grade – Christopher was able to manage his seizures successfully with phenytoin (Dilantin) until his sophomore year in college. A breakthrough seizure early in his sophomore year led to the short-lived addition of valproic acid (Depakote) to his therapy regimen, which was discontinued after a few months because of intolerable side effects.

Even without the Depakote, Christopher was seizure free—or so his family and physician believed—until his death. In fact, Christopher had experienced seizures during that period, “but he didn’t tell us about them and he didn’t tell his doctor,” Mrs. Donalty explained. She hypothesized that her son’s desire to live a “normal” life not defined by epilepsy and its restrictions led to his silence. “We will never know for sure why Chris didn’t tell us about the seizures, but I do know for sure that he loved life, and if he knew that uncontrolled seizures could kill him, he would have made different choices,” she said. “The possibility of death was never once mentioned to us after his diagnosis or in the years of treatment [that followed.] We believed epilepsy was a benign, manageable disease.”

In the years since her son’s death, Mrs. Donalty has learned that many physicians never tell their patients about the possibility of SUDEP, despite the fact that it is estimated to account for 8%-17% of deaths in people with the disorder and occurs at a rate of approximately 1 in 1,000 person-years, when combining all epilepsy types and severities, and increases to 1 in 150 person-years for those with refractory epilepsy (Lancet Neurol. 2008 [7]:1021–1031; Epilepsia 2009 [50]:917–922).  “I don’t know why this is. Maybe it’s because there is no cure, or because it’s a difficult conversation,” Mrs. Donalty said. The failure to communicate the risk, however, is “unethical,” she stressed. “Doctors have no right to deny patients and their families the full story. There’s nothing worse than losing a child. But I think it’s particularly cruel when you don’t have the information that you should have had to make informed decisions.”

Neurologists Dr. Dag Aurlien of Stavanger University Hospital, Stavanger, Norway, who reported a study at the meeting about the incidence of SUDEP associated with lamotrigine therapy, and Dr. Jakob Christensen of Aarhus University Hospital in Aarhus, Denmark, who presented new data on mortality in epilepsy agreed with Mrs. Donalty’s position. “It might not be a discussion to have at the time of the initial diagnosis, but it is a discussion that has to happen,” Dr. Aurlien said in an interview. The fear of overdramatizing the risk may be behind physicians’ hesitancy to bring it up, he hypothesized.

Dr. Christensen agreed that no information, including the possibility of death, should be withheld from patients and their families. “In our [clinic] it is part of the checklist of information that should be communicated,” he said in an interview, noting that patients’ individual situations and risk factors should help guide when and how the information is offered. —Diana Mahoney

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There’s More Than One Answer to These Questions

JimLinwood

Image courtesy of Flickr user Jim Linwood

from the Kennedy Krieger Institute’s annual autism conference

That’s a line from an Indigo Girls’ songs.  While I think their questions were probably aimed at Life, the Universe, and Everything, they could just as easily have been talking about autism.  I’ve covered this meeting twice now and both times I’ve been struck by  how many possible autism factors are under investigation.  There seems to be evidence of a role for genetics, brain abnormalities, and autoimmunity as causes of autism.  Today I listened to research on epilepsy and autism spectrum disorders (ASD) and GI symptoms and ASD.  This wide range of research made clear to me what a tragic mistake it would be to pin all of our hopes for identifying the cause of autism on just one factor.

The evidence is clear that vaccines do not cause autism but even if there were evidence–and I repeat, there is none–it would be exceptionally harmful to those with autism and their loved ones to limit research to just vaccines.  If the true object is to identify the causes of autism in order to develop effective treatments, the most productive strategy is to look at as many possible factors.  Everyone affected by or working with those affected by autism should be relieved to know that a great deal of this research is getting done–albeit out of the limelight.

—Kerri Wachter, @knwachter on Twitter

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