ANTIEPILEPTIC DRUGS (AEDs)

Most doctors require individuals with HH to start their treatment plan with antiepileptic drugs (AEDs) as it is the least invasive option. While some AEDs can control some types of seizures, seizure freedom or even good seizure control can be difficult to achieve for HH patients despite the use of higher doses and several combinations of antiepileptic drugs.

Gelastic seizures associated with hypothalamic hamartomas are generally resistant to medication. At this time, there does not appear to be one specific AED that is able to stop or even reduce gelastic seizures for the long term. However, the AEDs can be helpful in controlling the secondary seizures (absence, complex partial, and generalized) that often occur with HH. The decision regarding which drugs to try first and whether to try one drug at a time, or more than one at a time, is a difficult one. Some AEDs commonly reported by HH patients include valproic acid (Depakote), levetiracetam (Keppra), lamotrigine (Lamictal), carbamazepine (Tegretol, Carbatrol), topiramate (Topamax), and oxcarbazepine (Trileptal). Also, it can take a few weeks or even months to get to an appropriate dosage of the AED to determine its efficacy. However, there are other AEDs in use today that may be prescribed.

Many individuals experience side effects from the drugs including cognitive impairment, fatigue, depression, drug interaction, mood swings, and loss of concentration and focus. Some individuals may experience a “honeymoon effect” where the drugs seem to be working and then lose their effectiveness for no apparent reason. Some parents have reported that their kids seem to cycle with their seizure frequency, with days or weeks of high frequency followed by days or weeks of very few seizures, regardless of medication dosage. This can lead to the belief that frequent dosage changes must be made, further complicating the treatment plan. Doctors will typically recommend adjusting dosages or stopping drugs slowly over time to minimize potential side effects.