When do we say seizures are refractory to medicines?
Nitin.K.Sethi, MD
Assistant Professor of Neurology
New York-Presbyterian Hospital
Weill Cornell Medical Center
New York, NY 10065
Yesterday I saw a patient with medically refractory epilepsy in my office. As I took pains to explain to the family about refractory seizures, I realised that understanding the same can be difficult for a lay person. So in this post I shall talk about refractory seizures.
So what do I mean if I say a patient has medically refractory epilepsy or medically refractory seizure disorder? In simple words all I am saying is that the patient has a seizure disorder which has not shown an adequate response to anti-seizure medicines.
In most patients with epilepsy/ seizure disorder, adequate seizure control can be obtained by just one seizure medicine. By adequate control I mean no more seizures. No more seizures, the side-effects of the anti-seizure medication used are tolerable (if none that is the best): the patient is happy and I am happy. While good control of seizures can be obtained in the majority of patients, there are a few in whom the seizures are harder to control. You use one seizure medicine but the seizures still persist, you stop the first and use a second-still seizures, you try a third-same story. You start using 2 or more drugs together (at the same time) to try control the seizures. This is referred to as polytherapy or polypharmacy. You can imagine what happens next. The patient is on 3 and at times more drugs, more side-effects, more drug-drug interaction and at times still poor seizure control. The patient feels miserable and I am not happy too. Such a patient has medically intractable epilepsy, seizures are refractory to medications.
So what can be done for a patient who has medically refractory epilepsy? Can we offer them something to control their seizures. I am happy to say yes. Patients with medically refractory epilepsy should be ideally seen in specialized epilepsy centers (comprehensive epilepsy centers). These centers offer expertise: patients can be enrolled in trials of experimental drugs, other options like neurostimulation (vagus nerve stimulator) and finally epilepsy surgery can be explored (see my post on epilepsy surgery at http://braindiseases.info) .
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My son’s Neurologist who specializes in seizure disorders, causally used the word “refractory” seizure the other day. So this is the first posting I have read about ‘refractory’ seizures and I’m happy to know that there is hope. My son tried Tegratol and became dilusional and paranoid. He’s on Lamotrigen and Dilantin after trying Dilantin alone and with Clozapam. He is still seizuring, 15 tonic-clonic seizures in 16 months, 5 required life support. If you have any thoughts or advice, it would be appreciated. His Dilantin blood levels don’t seem to be able to stabalize. Thank you!!
I have just been told that my son has “refractory” seizures. 18 months ago he never had seizures, then he was taken off Clonazepam over 3 weeks instead of 1 year, after taking this drug for 4 years for myoclonic jerks. About 17 tonic-clonic seizures now, in the past 17 months. He’s on 2 meds now after eliminating 2 others. This is so sad. We live with chronic sorrow and chronic alertness, just waiting for the next seizure. His gums are inflamed because of Dilantin, more trauma likely will have to be endured to care for his gums.
My partner has complex partial seizures that have also been described as refractory. She takes phenobarbital and Dilantin which control all but 3 or 4 seizures per month. She seems to be bothered by the refractory description which I don’t understand. Any thoughts on this?