Introduction - A 12 year old girl named Clara, has seizures nearly every day, often times at night. She has dark rings under her eyes, but not from medications, but from lack of sleep. Clara hasn't been on medications for epilepsy for some time now, although she might go back in the future. She started having seizures from 2 weeks before she was born in the womb, and they have continued until today. Her seizures are known as "tonic-clonic (what used to be referred to as grand mal.) At 6 months of age she went on
phenobarbital, a
barbiturate and sedative medication for epilepsy.
What is Epilepsy?
Epilepsy is a general term that includes various types of seizures. People with diagnosed epilepsy have had more than one seizure, and they may have had more than one kind of seizure. A seizure happens when abnormal electrical activity in the brain causes an involuntary change in body movement or function, sensation, awareness, or behavior.
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Area where a child's brain is affected by seizures.
Photo: Dr Laughlin Dawes.
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Epilepsy affects about 2.5 million Americans, and results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production. People of all ages are affected, but particularly the very young and the elderly. About 10% of Americans will experience a seizure sometime during their lifetime, and about 3% will have had a diagnosis of epilepsy by age 80.
Information Source:
Epilepsy: Center for Disease Control www.cdc.gov/Epilepsy
Some 50 million people are estimated to have epilepsy worldwide. In the US, the number is put at 2.7 million, approximately 1.3 million of these are children.
Epilepsy Treatment and Medication
The Mayo Clinic website on the topic of epilepsy states: More than half the children with medication-controlled epilepsy can eventually stop medications and live a seizure-free life. Many adults also can discontinue medication after two or more years without seizures.
Finding the right medication and dosage can be complex. Your doctor likely will first prescribe a single drug at a relatively low dosage, and may increase the dosage gradually until your seizures are well controlled. If you've tried two or more single-drug regimens without success, your doctor may recommend trying a combination of two drugs.
All anti-seizure medications have some side effects, which may include mild fatigue, dizziness and weight gain. More severe side effects include
depression, skin rashes, loss of coordination, speech problems and extreme fatigue.
Epilepsy: Mayo Clinic
Some medications for epilepsy can be very sedating for children, so that learning, cognitive functions can be next to impossible for some children with epilepsy.
Phenobarbital for Epilepsy Treatment
Phenobarbital is a
barbiturate used to treat and prevent seizures, to treat sleep disorders, to
treat anxiety, and to relieve anxiety before surgery. It may also be used to treat other conditions as determined by your doctor. The reason why Clara is not on medications despite her seizures is the side effects. The side effects of phenobarbital and Depakote, an
anticonvulsant that she used to take regularly can be intense in terms of drowsiness.
The site Epilepsy.com states concerning phenobarbital:
Phenobarbital (fee-no-BAR-bih-tal) is a seizure medicine manufactured by several companies. It is the oldest epilepsy medicine still in use. In 1912, two independent teams of chemists created it under the name of Luminal.
The advantages of phenobarbital are its long history of use, low cost, and effectiveness. It stays in the body for a long time, so the amount of medicine in the blood stays fairly steady even if it is taken only once a day. A disadvantage is that it makes many people sleepy and sometimes causes other changes in behavior.
Epilepsy Medications: Barbiturates, Phenobarbital - (off-site link)
www.epilepsy.com/medications/b_phenobarbital_intro
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Phenobarbital is the oldest drug (1912), a barbiturate, developed for seizures/epilepsy.
Photo: Erowid org. https://www.erowid.org
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Carbamazepine is used in treating both epilepsy and bipolar disorder. The major discomforting side effect of such drugs, marketed as Tegretol, as one example, is causing drowsiness.
Photo:Eflux Media - www.efluxmedia.com
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Epilepsy Experience - Girl with Epilepsy and Medications
At the age of six she began taking two anticonvulsants, Depakote and Topamax every day. The medications made her so sleepy that her mother gradually weaned her off them. Afterwards she started talking and reading for the first time. She hadn't spoken in full sentences until 6 years old.
The sedating
Depakote is also a common medicine used in treating
bipolar disorder, epilepsy and other serious disorders. The little girl went on what is known as the "ketogenic diet," which is that of vast quantities of fats, and almost no carbohydrates. In close to two years she had only two seizures. However, in time, she had a few more seizures and finally started having one or two each month. She almost drowned once when swimming.
She had implanted what is known as a "vagus nerve stimulator", but it only made her have seizures more often, so it was turned off. Since that time she has had daily seizures. The mother commented that "throughout the years, we've had to find things out for ourselves." No one told her about possibilities in speech therapy, other therapies and services available for children with epilepsy.
The little girl takes dance lessons,
piano lessons and goes to school regularly. Her mother works hard for her. She takes swimming and gymnastics. Her decision not to give medications to her daughter at the present time, is a most difficult one for her. The reason is that off the medications, her daughter can live normally, think, learn, play, on the medications, she has less in the way of seizures, but her life is on hold because of its heavily sedating side effects.
Side Effects of Medication Issues - Surgery for Epilepsy - Diet
The side effects of medication are "almost as disabling as seizures themselves." Some have chose brain surgery to control localized seizures. (This is not an option for seizures that effect the entire brain.) But it is the most drastic form of treatment that could be made. The decision to medicate or not is a difficult choice that parents face, one that is recognized empathetically and compassionately by all of us who care. Comprehensive Epilepsy Centers is a hospital system that specialize in treating epilepsy in 50 hospitals in the US.
Some state that the
ketogenic diet has worked well for many children in controlling seizures.
Epilepsy - Television and Photo-sensitive Epilepsy
It is probable that many who have epilepsy, especially children or little girls, could benefit from doing without or greatly
limiting television. Some authorities that have commented on this subject have suggested that one should not deprive oneself or unnecessarily change one’s lifestyle with respects to television. However, it might be stated, that for anyone with neurological problems, it might be one step that can be helpful. At least to try for a trial period doing without
television and
video games,
movies, with a child, for six months, might be a helpful way of seeing if he or she benefits in the area of seizures.
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Photosensitive Epilepsy
Photo: Aaron Escobar
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It is estimated that 5% of epileptics have photosensitive epilepsy, although some estimate the figure at 14%. Photosensitive epilepsy is a true disorder that is most common in children and more common with little girls. However, other authorities seem to indicate that there are combined types of epilepsy that are effected by the stimuli of
TV and
video games, in combination with other types of epilepsy. One authority put the figure at 26% of all epileptics being effected by P.E. And that in combined types the percentage is 76%.
There is a wide statistical span depending on which authority one quotes, as to
television’s role in epilepsy. It might be one area that can help many with epilepsy, especially children and little girls, who might be more sensitive to such stimuli.
Art is recommended as an effective therapy for epilepsy and an expression of individual worth. The website, Expressions of Courage,
Art for People with epilepsy states:
"Expressions of Courage allows people with epilepsy to serve as strong advocates for their condition by sharing their stories through their beautiful and talented artwork," said Epilepsy Foundation President and CEO Eric R. Hargis. "The contest also allows others to learn the truth about people with epilepsy that epilepsy does not define who you are."
Increase in Suicide Risk for those taking Antiseizure or Anticonvulsant Drugs
There is some link between suicidal ideation and actual suicide attempts to anticonvulsant drugs used in treating epilepsy. While that rate is not large, still, the actual rate appears to be double with the use of anticonvulsant drugs used in treating epilepsy, in comparison to that with of a placebo.
One rational for continued use of such drugs in epilepsy treatment despite an increased risk of suicide is that risk of death from accidental fall or other means from discontinuing use of anticonvulsant drugs is greater than the increased risk of suicide.
According to one thorough study which attempts to examine all the available evidence on the subject, is that
"mood disorders represent a frequent comorbidity in epilepsy and suicide is a serious complication more frequently encountered in epilepsy rather than in the general population." The study also concludes that risk of suicide is further increased with use of anticonvulsants used in treating epilepsy.
Actual statistics on increased risk are, "4 suicides and 105 reports of suicidal symptoms among the 27,863 patients who were given the drugs compared to no suicides and 35 reports of suicidal symptoms among the 16,029 patients treated with placebos." That represents a 0.43 risk risk for those on antiseizure or anticonvulsant drugs, compared to a 0.22 risk for those with similar health conditions not on antiseizure drugs.
The use of anticonvulsants first used in treating epilepsy has been expanded for some of these drugs for other uses in serious mental health disorders such as bipolar disorder, as well as for migraine headache treatment for some anticonvulsants.
Sources for Epilepsy Treatment Page
1. Baruchin, A. (2007, Feb 20).
Battling Epilepsy, and Its Stigma.
New York Times.
2. Carey, B. (2008, Feb 1).
F.D.A. Finds Increase in Suicide Symptoms for Patients Using Seizure Medications.
New York Times.
3. Drugs Linked to Suicidal Behavior. (2008, Jan 31).
MSNBC.https://www.cafepharma.com/boards/showthread.php?t=253467
4. Mula1, M., Hesdorffer, D. C.
Suicidal behavior and antiepileptic drugs in epilepsy: analysis of the emerging evidence. (2011, June 16). Drug Health Care and Patient Safety. 2011; 3: 15–20. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132858/
Pages Related to Epilepsy
Surgery for Epilepsy
Barbiturates, Abuse, Intoxication, Overdose, Signs, Prevention
Keywords for this page: epilepsy, epilepsy treatment, treatment for epilepsy, medication for epilepsy, phenobarbital, epilepsy barbiturates, epileptic seizures, seizures, controlling seizures, epilepsy children, epilepsy stories, epilepsy information, epilepsy help, people with epilepsy
