Erin McNabb tried drug after drug to control her epilepsy. Finally, one kept her seizure-free — but doctors prescribed a dose so high that she suffered memory loss, depression and other serious side effects.
The number of drugs approved to treat epilepsy has doubled in the past decade, offering patients like McNabb long-needed alternatives. But specialists say too few doctors know the best ways to use the new therapies.
New guidelines from the American Academy of Neurology aim to change that, offering doctors the first detailed look at which of the new drugs works in which subtype of epilepsy.
And epilepsy specialists are trying to spread the word to patients, too, so both the newly diagnosed and those whose seizures aren’t well controlled know to ask about their options.
“The main message of the guidelines is about choice,” stresses Dr. Jacqueline French of the University of Pennsylvania.
“The important thing is for patients to know there are more new treatments and to not give up,” adds Dr. Andres Kanner of Rush University Medical Center, who co-wrote the guidelines with French.
Quest to be seizure-free
More than 2 million Americans have epilepsy, essentially periodic electrical storms inside the brain. When neurological electrical circuits misfire fast enough, a seizure results. It can range from a short glassy-eyed stare to jerking movements or the classic convulsions and loss of consciousness.
About two-thirds of epilepsy patients become seizure-free with the first or second drug they try. But others, like McNabb, try numerous drugs and even surgery in the quest to be seizure-free.
“Some physicians feel a seizure a month may be good control,” laments French. Not so. “Good control is no seizures,” and while every patient may not achieve that, “the effort certainly needs to be made.”
But it’s a balancing act because even when an epilepsy drug works well, side effects are a concern.
Old standbys like phenobarbital, phenytoin, carbamazepine and valproic acid can control many people’s seizures, and they’ve been around for decades so they’re fairly cheap. Many people have used them for 20 or 30 years with no problems, and have no reason to consider switching.
But some of the older drugs cause serious side effects — phenobarbital, for instance, is hardly ever recommended by epilepsy specialists anymore because of sedation and other problems — and almost all affect the liver in ways that make them risky for certain people.
The newer drugs are gabapentin, sold as the brand Neurontin; lamotrigine, or Lamictal; topiramate, or Topamax; tiagabine, or Gabitril; oxcarbazepine, or Trileptal; levetiracetam, or Keppra; and zonisamide, or Zonegran.
New set of side effects
Few have been directly compared to their older counterparts in strict scientific studies. Also, the newer ones all cause their own sets of side effects — from weight loss in some drugs to rare cases of glaucoma with another. Still, overall they are considered safer for many groups of patients than many of the older drugs, the guidelines say.
How so? French advises women using birth control pills to consider a newer drug, because metabolism of the older drugs can decrease contraceptive effectiveness. Several older drugs also increase the risk of bone-thinning osteoporosis.
And the older therapies cause more drug interactions, a particular risk for the elderly, who usually take multiple medicines. Just last week French had to tell a dermatologist to increase the dose of antifungal medicine he’d prescribed an epilepsy patient — because the woman’s older seizure drug was diluting the infection fighter.
The guidelines detail which of the newer drugs treats which of the different subtypes of epilepsy, and how to use them. Versions written for doctors and for patients are available at the American Academy of Neurology Web site.
Don’t give up, McNabb advises other patients. A combination of surgery and a mild dose of one of the newer drugs has left the 29-year-old seizure-free for two years.
“It takes a long time, and it’s different for everybody,” the Western Springs, Ill., woman says of the treatment hunt.