Banishing the demons

FROM THE JERUSALEM POST By JUDY SIEGEL-ITZKOVICH
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An illustrative picture of the Neuronal Positional System used for brain mapping. (photo credit:DR. SHLOMO TSURIEL AND DR. ALEX BINSHTOK)

A few thousand years after the ancient Greeks thought epilepsy – taken from a word meaning “possession” – was caused by demons, misconceptions about the neurological condition persist. Today, it is not regarded as being a supernatural phenomenon, but there remain enough myths that employers are reluctant to hire sufferers and some families hide affected relatives because they fear it will harm the chances of siblings to find a suitable mate.

The World Federation of Neurology, the World Health Organization and their partners announced that World Brain Day, July 22, would this year focus on epilepsy, due to the lack of awareness among the public, the enormous psychosocial consequences for most people who have epilepsy, inadequate knowledge among physicians and poor availability of medications in most countries.

Despite worldwide and local efforts to explain epilepsy, which affects one percent of the population and is the world’s most common serious and chronic brain diseases, many myths and misconceptions persist in the minds of the general public. In fact, it is not contagious; it does not affect only children; epileptics are not disabled and unable to work; and it is not 100% curable with medication.

There are some 70,000 Israelis – children and adults – with epilepsy. According to Hagai Shmueli, the new director-general of EYAL, the Israeli Epilepsy Association, which is a support organization and a member of the International Bureau of Epilepsy and is in touch with similar groups around the world.

EYAL runs a hotline, provides updated and accurate information about the disorder, organizes support groups and workshops and holds lectures and conferences for the general public.

It receives advice from Israel League Against Epilepsy, a professional organization of neurologists and others with expertise in the disorder, according to its chairman, Dr. Ilan Blatt, who is deputy head of the neurology department and head of the epilepsy clinic and EEG lab at Sheba Medical Center at Tel Hashomer and a trained epileptologist (a neurologist who specializes in the treatment of epilepsy).

EPILEPSY AFFECTS people of all ages and ethnic backgrounds, and both genders about equally, said Shmueli in an interview with The Jerusalem Post. Its causes are believed to combine genetics and environmental factors.

Some 65 million people around the world have epilepsy, and nearly 80 percent of cases occur in developing countries.

About 70% of people with epilepsy are “balanced,” that is, thanks to medication or other means their epileptic attacks are controlled and may even have stopped. But the remainder, with intractable epilepsy, “struggle daily,” said Shmueli. A number of treatments, including vagus nerve stimulation (VNS), are an adjunctive treatment for certain types of intractable epilepsy and treatment-resistant depression.

The intractable patients generally get a National Insurance Institute disability allotment.

“We have no complaints about the basket of health services provided by the four health funds, but parents of children with intractable epilepsy do have difficultly obtaining aides to accompany them in class. When they don’t get individual help, the children are often told to sit and not to run around so they won’t get hurt. Some patients can have 50 or 60 attacks per day, and they may have other problems as well,” said the EYAL director-general.

“Employment is also a problem. While one is legally bound to tell the license bureau that you suffer from epilepsy, you don’t have to inform your employer. Patients are afraid they will not be hired or, if hired, will be dismissed. I remember a young man who wanted to work as a security guard, but he was told that he wasn’t allowed to apply for a weapon license. It should be like a driver’s license, that if free of attacks for a year, you can get one.”

Yet, some barriers that faced by patients with epilepsy have been eliminated. They used to be rejected automatically by the Israel Defense Forces, but today are allowed to volunteer, said Shmueli. People with epilepsy can also get a driver’s license after being attack free for a year.

Another problem is that there is an unrecognized sub-specialty of epileptology in Israel.

“Those who work here studied abroad. Most patients do not need neurologists with a sub-specialty. A family doctor can prescribe medications when the patient is balanced, but in the 30% of unbalanced patients, some would be better off with an expert in treating the disease,” commented Shmueli. “The number of health fund epileptologists in the periphery of the country is minimal, so the queues are long and some families pay large sums for private experts.”

The Israel Medical Association, which is responsible for recognizing and supervising medical specialties and subspecialties, did not comment by press time.

“We want the Health Ministry to run a national program for treating epilepsy, just as it did for diabetes,” said Shmueli.

BLATT NOTED that there are clearly some cases that are due to specific gene mutations, but added that “epilepsy occurs in all ethic groups. There is no one specific gene but there are many different “epilepsy genes.” When we suspect a genetic cause, we investigate.” As for comorbidies (a combination of conditions involving epilepsy), Blatt said “anxiety or depression may occur more often in those who suffer from epilepsy, and the reverse also may hold true.

There is also a comorbidity with migraine headaches, but it doesn’t mean you have to get it. Epilepsy also doesn’t have to start in children. It can also begin in the elderly, but there is both overdiagnosis and underdiagnosis in this age group.”

There are nearly two dozen different drugs for treating epilepsy, and all are available from the health funds.

“There are newer ones that cause fewer side effects. The main unmet need is the 30% who do not get relief from the drugs,” said Blatt.

Epileptic seizures are episodes varying from brief and nearly undetectable attacks to long periods of vigorous shaking. Seizures result from excessive and abnormal cortical nerve cell activity in the brain. The diagnosis typically involves ruling out other conditions that might cause similar symptoms such as fainting.

Seizures fall into two major groups – primary generalized seizures and partial seizures.

The difference between them is in how and where they begin. Primary generalized seizures start with a widespread electrical discharge that involves both sides of the brain at once. Hereditary factors are important in many of these seizures.

Partial seizures begin with an electrical discharge in one focal area of the brain. Many things can cause partial seizures, such as head injury, brain infection, stroke, tumor or changes in the way an area of the brain was formed before birth (called cortical dysplasias).

Often, no known cause is determined, but genetic factors may be a key element in some partial seizures.

Partial seizures are often preceded by certain experiences, known as an “aura.” These may include sensory (visual, hearing or smell), psychic, autonomic or motor phenomena.

Jerking activity may start in a specific muscle group and spread to surrounding muscle groups; these are non-consciously generated activities and mostly simple repetitive movements like smacking of the lips or more complex activities such as attempts to pick something up.

An improved diagnosis is usually available from video EEG monitoring. The patient – both child and adult – is connected to the monitoring equipment for a period of 24 hours to a week or longer as he or she follows a regular daily routine.

THE SHEBA expert said neurosurgery to eliminate a part of the brain that triggers the electrical firing that causes the seizures is performed on only a few dozen Israeli patients – children and adults – per year.

“Anyone who doesn’t get relief from medications should consider it,” said Blatt, “but only a minority actually decide to have it performed.”

Fortunately, in children, epileptic attacks disappear in over half of cases. This happens less frequently in adults. Our brain has remarkable plasticity; the brain knows how to learn but also how to forget certain things, so this can happen with abnormal electrical activity, Blatt said.

While experimentally exposing the brain to magnets has not yet been proven effective in treating epilepsy, said Blatt, neurostimulation is an important treatment in some patients. “Stimulation of the vagus nerve – neuromodulation – in the neck is recognized as an important aspect of treatment in intractable patients, and it is included in the basket of health services. There is also deep brain stimulation, which is has been used to treat Parkinson’s for several years to treat patients with epilepsy, but it is less advanced the experience is still limited.

A ketogenic diet with high fat, low carbohydrates and adequate proteins appears to decrease the number of seizures or even stop them in drug-resistant children, said Blatt. “Some benefit for years, but for adults, it is probably not as effective.” b It is recommended by some experts for children who are unable to from drugs. “Some benefit for years, but for adults, it is probably not very as effective.”

Fortunately, in children, epileptic attacks disappear in over half of cases. This almost never happens in adults. Children have brain plasticity; the brain knows how to forget certain things, so this can happen with electrical activity, Blatt said.

While experimentally exposing the brain to magnets has not been proven effective in treating epilepsy, said Blatt, neurostimulation is an important treatment in some patients.

“Stimulation of the vagus nerve – neuromodulation – in the neck is recognized as an important aspect of treatment in intractable patients, and it is included in the basket of health services. There is also deep brain stimulation, which is used to treat Parkinson’s, to treat epileptics, but it is less advanced.

A ketogenic diet with high fat, low carbohydrates and adequate proteins appears to decrease the number of seizures by half in about 30% to 40% of children, said Blatt. It is recommended by some experts for children who are unable to benefit from drugs.

“Some benefit for years, but for adults, it is not very effective.”

Blatt agreed with Shmueli that there should be a recognized sub-specialty of epileptology in Israel.

“Not every patient needs one, but an epilepsy center like ours at Sheba can help. There are such centers not only at Sheba but also at Tel Aviv Sourasky, Hadassah-Ein Kerem, Rambam and Assaf Harofe Medical Centers. The aim is to make patients seizure-free. Those who are not satisfied with the treatment they get in their community clinics can and should be referred to a tertiary center,”
The Sheba expert said that there is a very small risk of death to people with epilepsy.

Choking is one of the life-threatening complications, for example. Seizure-related sudden death occurs mostly in patients who have discontinued treatment. “But in most attacks, the patient falls and then gets up.”

The widely publicized use of medical cannabis for a variety of chronic conditions has not evaded the field of epilepsy.

“It has a potential, but it isn’t a panacea. We know of about 150 children and a smaller number of adults with drug-resistant epilepsy who receive it, and many seem to benefit to a certain extent, but this has not been proven in clinical trials. It remains experimental.”

Both Blatt and Shmueli stress that in most cases, patients with epilepsy can enjoy a good quality of life, but they must remain under medical supervision and avoid sleep deprivation and other possible seizure triggers, and future medical developments are likely to provide even more hope.

Both Blatt and Shmueli stress that in most cases, patients with epilepsy can enjoy a good quality of life, but must remain under close medical supervision and maintain a nutritious diet, and that future medical developments are likely to provide even more hope.

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