Saturday, November 24, 2007

Switching seizures medication is not always a good thing!

Laura Peck of Janesville can’t say for sure, but she’s almost positive that medication switching led to her daughter’s death from an epileptic seizure.

“Her seizures were never controlled,” she said. “I think she was on every medication they made.”
Tina Smazal, 24, was on a 23-pill-a-day regimen before her death Aug. 3, 2006.


Because epilepsy requires different treatment plans for each person, switching forms of medication that prevent seizures is, in some cases, actually causing seizures and side effects, said Dr. George Morris III, director of the Regional Epilepsy Center at St. Luke’s Medical Center in Milwaukee.

A 1996 study of people with epilepsy found 250 had medication switched of the 1,333 respondents, he said. Of those, 74 people reported side effects or seizures as a result of the switch.

It’s easy for Morris to provide examples of how medication substituting became a big problem. He recalls the police officer who had a seizure on the job and the woman who had a seizure in her sixth month of pregnancy.

Doctors and patients are pushing state lawmakers to pass a pending bill that would require a pharmacist to obtain and document consent from the doctor and patient before substituting any drug product for treating epilepsy or seizure disorders, Morris said.

The notification would happen any time a drug is switched in any direction—whether it’s from a generic to a brand name and vice versa, brand to brand or generic to generic, he said.

“That gives the doctor opportunity to make a new plan with the patient about what additional monitoring (is needed),” he said. “You as a patient may … get home to find pills a different color or shape. That’s a pretty substantial thing for someone because we want people to be employed. We do not want an illness to rule their life.”

Why is it a problem?

The response to anti-epileptic medications is highly individualized for the more than 2 million Americans with epilepsy. No single treatment works for all individuals with epilepsy, according to the Epilepsy Foundation.

The problem comes in when a generic drug isn’t exactly the same as another generic form or brand name. To gain federal approval, a generic drug’s bioequivalence needs to be 80 percent to 125 percent of the brand name with 90 percent assurance.

So a patient switching from one generic to another could go from a bioequivalence of 80 percent to 125 percent, Morris said. That can result in unnecessary side effects or break-through seizures because some people have a narrow therapeutic range.

Loss of independence

Annette Baker of Janesville recently attended a conference in Cincinnati where she learned more about medication substituting concerns. Baker is a board member of the Epilepsy Foundation of Southern Wisconsin.

She wants people to be aware of the problem because the break-through seizures that can result from medication switching can cause people to lose their independence. Such situations can result in the loss of a driver’s license, preventing people from continuing to work, she said.
Money plays a role

Substituting can come down to money—both for the patient and the insurance company. Some plans will pay only for generic drugs, leaving the patient to foot the difference to get the brand name.

Morris recently priced a generic form of seizure medicine online at $9.99 for a standard monthly supply while the brand name would be $34.99.

“My concern is we do have a lot of people … who don’t have the luxury of being able to afford the drug that is going to be beneficial for them,” Baker said.

With the nation spending $141 billion on medications annually, studies show substantial savings—nearly $9 billion in one study—if all potentially generic mediations were used in their generic forms, Morris said.

The result is a balancing act, he said, of prescribing cheaper generic medications that could have a different result on a person with epilepsy.

“At the end of the day we have to make the whole thing make sense and have to make it safe for people,” he said.

Peck knows now she won’t take any chances with medication for her 6-year-old granddaughter Nicole—Tina’s daughter—who was just diagnosed with epilepsy.

“I will always pay the extra money that it costs,” Peck said.

What should you do?

Dr. George Morris III, director of the Regional Epilepsy Center at St. Luke’s Medical Center in Milwaukee, recommends:

-- If you are requesting a brand name prescription, make sure the pharmacist knows that is what you want.

-- When you receive your prescription, look at it to make sure it is exactly what you were told it would be.

-- If a substitution is made, make sure to talk to your doctor to let him or her know there is a generic being used. Ask if you should do anything differently. Your doctor might choose to do additional monitoring or other precautions.

Keeping count of your seizures is not always an easy task!

In patients with focal epilepsy, simply asking how often they have seizures doesn't provide a true count of their seizure frequency, German research suggests.

Reminding patients to keep written records of their seizures may not help, either, because they may be unaware of some seizures, said the University of Bonn Medical Center researchers.
"In conclusion, patient seizure counts are not valid, and reports of complete seizure freedom may need objective evaluation (e.g., regarding a driver's license)," the study authors concluded.

The study, published in the November issue of the journal Archives of Neurology, included 91 adults with focal epilepsy -- also known as partial seizures -- which involves one specific area of the brain.

The patients were outfitted with electrodes and monitored by video for an average of 4.5 days. They were asked to keep a seizure diary and to push a warning button to summon a nurse when they detected the onset of a seizure.

About half (42) of the patients received daily reminders about documenting all their seizures.
During the study, the patients experienced a total of 582 partial seizures but did not report 323 of them. The researchers found that 85.8 percent of all seizures that occurred during sleep were unreported, compared with 32 percent of seizures that occurred while patients were awake.

"Patients activated the push-button alarm ahead of 51 seizures (8.8 percent) but failed to document 17 (33.3 percent) of these seizures," wrote the study authors, who also found that patient self-reporting varied by seizure type.

Patients failed to report 73.2 percent of complex partial seizures (which impair consciousness) and 26.2 percent of simple partial seizures (which don't affect consciousness).

More information

The Epilepsy Foundation has more about
partial seizures.

Saturday, November 17, 2007

Service dog for seizure stricken patient is now missing!

With a voice still hoarse from hours spent calling for Blossom, Melanie Stripp described the days since her lifeline ran away.

The borough woman, who has epilepsy, lost her medical alert dog Nov. 2. Blossom somehow got out of a fenced yard behind Stripp's home in the 700 block of South Broadway. The golden retriever was spotted as recently as Thursday but has yet to come home.

Stripp has spent most of the last week looking for her. "This isn't just a regular dog," Stripp said, holding back tears. "She is my lifeline. I can't do it without her."

The HAWK radio station is offering a $700 reward for whoever finds Blossom, a white and brown dog trained to warn the 32-year-old if she is nearing another seizure.

Stripp said she suffers from grand mal seizures, which include convulsions, and petit mal seizures, which she said are more like short dazes. Stripp said if she's about to have a seizure, Blossom licks her face or paws at her.

Debbie Schaser, the founder of Canine Hearing Companions, a Vineland, N.J., nonprofit organization that trained Blossom, drove through the borough Friday afternoon. "We're going to get her today," she said. "I know we are."

Medical alert dogs are "really tuned into people" and can sense medical complications before they happen, Schaser said. Schaser said the dogs grant independence since their owners can rely on the dog for safety, rather than other people.

Eric Nelson of Phillipsburg, a 46-year-old with epilepsy, has been accused in recent days of taking Blossom. He wants people to know he didn't. He just owns a similar dog. Homer, Nelson said, has "saved my life over 300 times He gives me a lot of self-esteem, a lot of confidence to go out independently."

That's what Stripp is missing right now. Despite a few dazes, she wasn't sure she's had a seizure since Blossom left. Still, she said, "At this point, I'm so scared that when I'm home by myself I'm going to have one. And she's not there."

Reporter Douglas B. Brill can be reached at 610-759-0508 or by e-mail at dbrill@express-times.com.

Can a Ketogenic diet keep boy seizure-free?

Doctors are increasingly turning to the foods we eat to help cure some childhood illnesses.

See how the family is adjusting

It's a story told through a five-year old Boise boy who follows a strict diet to help treat epilepsy, one of the most common neurological disorders afflicting children.

Miles Hoene-Langdon tried conventional medicine to stop his epileptic seizures but nothing worked.

So his family turned to something unconventional: an eating plan known as the ketogenic diet.
His doctor says it can help young patients overcome epilepsy.

Miles eats 100 grams of fat daily - that's equal to one stick of butter.

Most people are taking in about 33 grams of fat per day.

It’s a time consuming diet to follow but Miles' family was willing to do anything to bring their little boy back.

About two years ago Miles' parents noticed some days he would begin to stare then suddenly drop to the ground.

"We felt like we were losing him because he wasn't the same kid he had been," said Monica Hoene-Langdon.

Kim and Monica Hoene-Langdon knew something was not right - and were devastated when doctors delivered the diagnosis: Miles had epilepsy.

“It is devastating because all of sudden, he's very normal and you think everything is going fine and it got to the point where he couldn't play or have a conversation with us,” Kim said.

"He had some stretches that were pretty bad. Multiple seizures per day as I remember," said Dr. David Bettis with Pediatric Neurology of Idaho.

At first Bettis prescribed medication to stop the seizures. But after four different pills failed, he decided to turn away from modern medicine and try a diet that has been around for decades - The Ketogenic Diet.

“The ketogenic diet is about 80 to 90 percent fat which is Atkins gone wild really,” St. Luke’s Regional Medical Center dietician Stacy Beeson said.

The high in fat diet mimics the effects of starvation. Bettis says researchers have found fasting helps seizures.

"Obviously something had to be done to control the seizures and the ketogenic diet stepped into that and was really a homerun," Bettis said.

A home run Dr. Bettis says takes a team to achieve.

That team includes a doctor, dietician, a willing patient, a supportive twin sister and of course parents ready to learn some new, creative recipes.

"I can make waffles. I can't use grain but I have discovered that macadamia nuts make a good flower," said Kim Hoene-Langdon, Miles’ mom.

Kim always tries to make Miles' meal similar to the family's.

One evening, she made a special pizza for Miles with a crust made out of egg whites and Macadamia nut flour and a special kind of tomato sauce.

His typical beverage: whipping cream that's not whipped. Miles has not had milk for a year and a half.

For a side dish - a little bit of fruit.

"Kim and Monica have to weigh each item that Miles gets and they have to scrape all remaining contents," Stacy said.

"Sometimes a snack for him is one olive and a few leaves of lettuce and that gets him through the afternoon," said Monica said.

"I think one of the toughest things is when you have been at an activity and your coming home and your kids are both tired and hungry you can't just stop somewhere and get him a drink or a burger," Kim said.

The family acknowledges this is an odd eating plan, one that Miles follows well.

So far, this 5-year old is 14 months into the diet and seizure free - something his family is thankful for.

"He's going to have a much better, healthy normal life afterwards," Monica said.

"In well over 10 years of experience and close to 40 cases of the diet I have never had a patient who responded to the diet as well as he did," Bettis said.

"It gave us Miles back," Monica said.

Over the next few years miles will taper off the ketogenic diet.

Bettis says Miles has an excellent outlook for overcoming epilepsy.

A third of Bettis' patients at St. Luke's who try this diet have had a good response.
The program must be monitored by a doctor and a dietician.

Experts at St. Luke's Children's Hospital say diet therapy can positively affect a wide variety of health issues.

Nutritional supplements can help kids with cystic fibrosis and other gastrointestinal diseases.
Children with certain metabolic diseases such as phenylketonuria follow rigid eating plans to avoid progression of symptoms.

But doctors at St Luke's warn diets are not a blanket cure, and the outcomes vary from patient to patient.

18 months old toddler suffers from seizures due to parental negligence

The woman accused of negligently allowing her 18-month-old girl to ingest cocaine used the drug, the defendant's mother testified Thursday in Superior Court.

Laura Beck also testified on the second day of the trial that her daughter, Amber Baxley, 19, tested positive for cocaine when she gave birth to another child in March.

The Columbus woman and her boyfriend, Jeremiah Linder, 26, are charged with second-degree cruelty to children, charges that stem from the night of April 21 at the couple's residence, Lot 431, 3150 Plateau Drive.

Beck collected the girl the next morning, though she became worried when the toddler hadn't moved for hours.

"I put her in the (bath) water and tried to wake her up," Beck said. "She had her hand laying on my hand. She was being unresponsive. That's when I called my daughter and said we were going to the hospital."

"They said she tested positive for crack cocaine."

Beck also testified that Baxley's sister and her sister's boyfriend, who lived with Baxley and Linder, also used cocaine.

Latonya Kelly, with the Muscogee County Division of Family and Children Services, testified the girl is now in a therapeutic foster home in Atlanta. Looking at a picture of the girl, she said a mark over her right eye was a scar she got after she fell during a seizure.

"The child had a stroke and now she has seizures daily," Kelly said. "She did have 10 to 20 seizures daily but now has one to five."

Vernicia Jones, a former DFCS worker, testified that Baxley wasn't allowed to be alone with her newborn child or allowed to have any drugs or paraphernalia around the children.

When Assistant District Attorney David Helmick asked her why she was no longer with DFCS, Jones hesitated before answering.

"It was more than I was able to functionally deal with," she said of Baxley and Linder's situation.
During her closing arguments, Baxley's attorney, Susan Henderson, said jurors shouldn't let emotion decide the case. Instead, she told jurors to examine the evidence and not use theory.
"What happened to (the child) should break all of our hearts, but we don't rule on emotion," Henderson said.

Bob Wadkins, who represents Linder, also told jurors to follow the law and not their emotions. He told jurors that the state didn't prove every element of the case, including that the 18-month-old had excessive physical pain.

"They put eight witnesses up there," Wadkins said. "The word 'pain' was not mentioned one single time."

Helmick asked jurors to use their common sense.

"Do you think she enjoyed having seizures?" he asked. "Do you think that felt good? Did you like having 10 to 20 seizures a day?"
Deliberations are expected today.

Thursday, November 08, 2007

Toy beads set cause seizures in children

Irish toy stores have been urged to stop selling Bindeez bead sets and craft products amid fears that they pose a danger to children.

The National Consumer Association today warned the stores about the need to temporarily remove the items from sale following a number of incidents in Australia in which two children were hospitalised.

Earlier today hundreds of the art and craft kits were removed from Smyths Toy Superstores in Ireland.

The craft kits were previously banned in Australia after two children in Sydney were brought to hospital, suffering seizures after swallowing beads from the pack.

Scientists later found that the plastic beads contain a chemical that breaks down into a potentially fatal drug when swallowed.

It is not known if the kits in Ireland or in the UK have been contaminated and the decision to remove them is a precautionary measure.

Toxicologly tests are to be carried out on the products sold in Ireland and in the UK immediately but the toys distributor, Character Options Ltd, says it is confident the batches are safe.

Results of these tests will be known within the next four days.

Until then, a safety alert will remain in place and all Bindeez products should be removed from shop shelves.

Consumers who have bought Bindeez products have been urged by the NCA to stop using them and put them in a safe place until further information is available.

Consumers are also urged to check the National Consumer Agency website www.consumerconnect.ie or 01 4025563 for updates on the latest position.

Service dog detecting seizures in patient is now missing!

Man's- or in this case woman's- best friend has gone missing in Northampton County. But this pooch isn't the typical pet. And her absence is putting both pet and owner in peril. WFMZ's Bo Koltnow has the story.

>> MelanieIf I'm laying on the floor lick me, nudge me, know how long it's going to happen. Melanie Stripp is speaking about Blossom, her Golden Retriever. But Blossom is no ordinary pooch.

>> Melanie She makes sure I'm ok and there is somebody around after it happens. She's good at it let me tell you.What Blossom is good at is detecting seizures, she's a specially trained seizure response dog. Stripp raised 5-thousand dollars a little more than a year ago for Blossom. She not only found a best friend but a friend who also gives her independence. Stripps been epileptic since she was 6 months old.

>> Melanie When you finally find a dog with those qualities to help you, you don't see that anywhere. Since Friday Stripp hasn't seen Blossom anywhere. The crafty canine managed to escape from her South Broadway yard.

>> Melanie I've been to parks, fields, woods, gas stations.

>> Reporter She's also posted these signs all over town pleading for Blossom's return.

>> Melanie I'm afraid somebody's taken her in and loved her to death and not give her back. The danger is not only to Stripp, who has seizures without warning but also to Blossom. The dog has Rocky Mountain Fever and needs to take medication 3 times per day.

>> Melanie All I want is to have her back and home with me that is all I want. Blossoms breeder is offering a reward. Stripp says the dog answers to "Blossom come." Something Stripp is still holding out hope for. In Wind Gap.. Northampton County.. Bo Koltnow 69 News.

Combination of two genes linked to Epilepsy may stop seizures!

Carrying two genes linked to epilepsy may actually make you less likely to have a seizure, say US researchers.

People who have more than one gene defect might be expected to be more prone to illness - but experts found the reverse.

The Baylor College of Medicine team, which carried out its research on mice, reported its findings in the Nature Neuroscience journal.

More than 450,000 people in the UK suffer from some form of epilepsy.

In the genetics of the brain, two wrongs can make a right.

Dr Jeffrey NoebelsBaylor College of Medicine

There are many different types of epilepsy and the degrees of severity vary widely from patient to patient.

Scientists have long suspected that some cases are partly due to a genetic problem and are searching for the particular genes involved so that new treatments can be devised.

The two defects highlighted by this research involve the Kcna1 gene, which is involved in the transport of the chemical potassium in and out of the body's cells, and the Cacna1a gene, which plays a role in calcium levels.

The first of these has been linked to severe seizures in "temporal lobe" epilepsy, which affects the part of the brain involved in speech, sight, sound and memory.

Mice with defective Kcna1 genes can die suddenly as a result.

The second gene is linked to so-called "absence" epilepsy, in which patients do not jerk or move in the way most people associate with an epileptic fit but stare into space instead.

'Circuit breaker'

When mice were bred with both gene defects, far from worsening their symptoms, they suffered dramatically reduced seizures and did not die suddenly.

The researchers, led by Dr Jeffrey Noebels, said that this could help point towards new ways of treating certain types of epilepsy.

He suggested that one defect could be acting as a "circuit breaker", halting the chain reaction of misplaced electrical signals which can cause a seizure.

"In the genetics of the brain, two wrongs can make a right," he said. "If you have a potassium channel defect, then a drug blocking certain calcium channels might also benefit you."

Professor Sanjay Sisodiya, from the National Hospital for Neurology and Neurosurgery, said that this was the first instance he could think of in which two gene defects in epilepsy combined to reduce symptoms.

He said: "It's quite exciting research - although it demonstrates just how complex the genetics of epilepsy are.

"Hopefully it will all start to come together at some point soon."

A spokesman for the charity Epilepsy Action said: "Any research which could possibly eventually lead to new treatments is exciting and we welcome it."

Supposed to be in court regarding false rape accusation, a woman lends in hospital with seizures instead of court

The woman who police say made up a story about being raped by a man pretending to be a police officer wasn't in court Friday as scheduled.

Tiffany O'Conner, 28, is charged with filing a false report. She was supposed to be in court Friday, but the judge says he got a fax saying O'Conner was being treated at Blount County Memorial Hospital for a seizure.

O'Conner's arraignment had to be re-scheduled for next Friday.

Maryville police say O'Conner confessed that she made a false claim about being raped because she wanted attention.

According to police, she injured herself with cuts and a broken nose in an attempt to authenticate the claim.

Saturday, November 03, 2007

Violonist continues to play despite Epilepsy

For more than three decades, the rhythm in violinist Martha Curtis' life was cut with staccatos of auras and terrors.Every week, the seizures came, always preceded by the panic that sank deep into her gut.

"Like something was coming to kill me," said the Eastman School of Music graduate, who returns Saturday to Rochester to speak at the Epilepsy Foundation's annual community education conference.

A Michigan native now living in Pittsburgh, Curtis was diagnosed with epilepsy at age 3, began playing the piano at 5 and the violin at 10. She pushed her way into Michigan's Interlochen Arts Academy boarding high school, then the Eastman School of Music, despite warnings that neither campus was equipped to handle her seizures.

For many years, she hid her epilepsy from friends — walking out of classrooms to swallow the "icky feelings" from partial seizures, playing through recitals with paralyzed fingers, begging whoever was around not to take her to the hospital, even when grand mal seizures blacked her out for minutes at a time.

After she had a seizure on stage during her senior year at Eastman, Curtis put down the violin, convinced that her secret was out and she could never play professionally. Two years later, she brushed off discouragement and got part-time work with four orchestras. When seizures returned, she didn't hide them.

"I just decided that epilepsy is in the world, and the world should have to cope with epilepsy," she said. "I should walk exactly where I want to be. If I seize, people can deal with that."

In the early 1990s, Curtis underwent three surgeries to remove parts of her right brain. She was terrified the operations would affect her music, but without the operations, she was sure she could never play the way she wanted to.

Now 50, Curtis has two children, hosts of honors from Eastman and elsewhere, no seizures and no secrets. She has spent the last year home-schooling her 7-year-old but plans to return to the stage soon, without any interruptions in her rhythm.

"I can actually hear myself play now," she said."I try to talk to people about living a life they want to live. ... I want people to know they can do anything despite something as stupid as epilepsy."

Following Brain surgery, a toddler becomes charity's main focus

Bright-eyed, two-year-old Madeline Thomas inspired charity foundation Caring Hearts Outreach to host a benefit ball this Saturday night after she underwent brain surgery in September.Thomas, the only child of Southlake Police Officer Randy Thomas and local beautician Bethany, was diagnosed with epilepsy when she was 10 months old.

She was given anti-seizure medication until the seizures became too frequent for comfort.“On Aug. 11 she had seven seizures in one day,” Bethany said.Doctors were able to monitor the seizures and conduct an EEG, which determined the seizures were located on the right side of her brain.Madeline underwent a 10-hour brain surgery in September to remove areas on the right side of her brain. The surgery has affected her vision on the left side, vision memory and short term memory.“You can show her a picture of a horse, and she’ll know it’s a horse.

But, if you ask her five minutes later, she won’t remember that it’s a horse,” Bethany said. The doctors hope to evaluate the affects of the surgery over the next six months. During this recovery period, Bethany and Randy are sharing the full-time responsibility of caring for their daughter.Despite the difficulties Madeline has been through in her first two years, Bethany says her daughter has shown strength and resilience that is inspiring.

“You can just see the hope in her eyes,” she said. “She’s been a real trooper throughout.”The Caring Hearts Outreach Foundation was formed by realty company Century 21 and the groups fundraiser benefits a person in need from the community once a year.“This foundation has been set up to bankroll money so that next time something comes up in the community, we are better prepared to offer help,” said Benefit Coordinator Hazel King.

Foundation members heard about Madeline through her grandmother, a former Century 21 real estate agent, and dedicated this benefit to helping her family. Money raised will help pay for Madeline’s medical expenses and the family’s living expenses, since Bethany’s full-time job has been reduced to part-time in order to care for Madeline.“It would be nice to get them $10,000 to help them through this, but even if we could get them $5,000, it would be great,” King said.When Bethany heard about the charity, she was shocked.

“I was amazed. Here my husband and I are, two normal people living in Keller, and it’s amazing to see how much people care,” she said.The Ball, at the Southlake Hilton, features a “Moulin Rouge” theme with several different sponsorship levels named after Parisian monuments. Costume or cocktail attire is encouraged.

Approximately 100 tickets had been sold at press time.At the ball, family, friends, co-workers and members of the community can enjoy a heavy hor-d’oerves buffet, silent and live auctions, live music from Diva G, dancing and a cash bar.Tickets are $100 and on sale through Century 21 Real Estate, and will also be sold at the door. For information or to purchase tickets in advance, call 817-424-3808.Contact Shelley Doggett at 972-628-4076 or sdoggett@acnpapers.com

More than 1/3 of adults suffering from Epilepsy are untreated!

More than a third of adults living with epilepsy reported being too physically disabled to hold a job in a new survey, and one in four said they did not take medication even though they had active seizures.

Based on the results, researchers with the CDC and the UCLA School of Public Health estimated that about 1% of Californians, or 300,000 residents, have a history of epilepsy and 0.7%, or 182,000, have active seizures or take medicine to control seizures.People with epilepsy had more physical and mental health problems than people without the disorder.The study, published in the October issue of the journal Epilepsia, was conducted to better understand the burdens of adults living with epilepsy in the community, CDC public health advisor and study co-author Rosemarie Kobau, MPH, tells WebMD.

"We confirmed that the burden of impaired quality of life is substantial, as is the burden of unemployment and poverty," Kobau says. "It is clear that adults with epilepsy need better access to specialized medical care to control seizures and the effects of living with seizures."Living With Epilepsy The findings were derived from data collected in the 2003 California Health Interview Survey (CHIS), the nation's largest state health surveys and one of the most comprehensive.

Among the adults with epilepsy, 36% of those with active epilepsy reported being physically disabled or unable to work, compared with 5% of the population at large. Twenty-two percent of people who were ever told they had epilepsy rated their overall health as poor, compared with 4.5% of the general population.

And 45% of those ever told they had epilepsy reported having annual household incomes of less than $25,000, compared with 29% of the general population.The researchers also found a greater percentage of people with a history of epilepsy or who were having active seizures to be active smokers and to never walk for transportation or exercise.

Adults with recent seizures reported between nine and 12 days during the previous month of impaired physical or mental health, or days when their daily activities were limited, compared with only two to four days among people without the disorder.Many Patients Aren't Treated Among people who reported still having seizures, 26% also said they took no medications to control them.CDC epidemiologist David J. Thurman, MD, says it is clear from the finding that a substantial minority of adults with epilepsy are not getting optimal or even minimal care.

"We think that two-thirds of patients can be completely controlled, meaning no seizures at all, with appropriate medications and that the remaining one-third could have the frequency of their seizures greatly reduced," he tells WebMD.While most adults with active epilepsy reported having health insurance and having access to regular care, Thurman says the responses may not reflect the true picture of what is going on.

"Our concern is that access issues may keep many people from getting optimal care with appropriate medications," he says. "People who receive care only from hospital emergency departments are likely to run out of medication from time to time. This is not optimal care."