Milo Ventimiglia: One of the most important things you can do if you live with epilepsy is make sure you are keeping up with your treatment. Your medicines work only when the right amount is in your body. If you miss taking your meds, you risk having a seizure. Here are tips on how to make sure you are doing what you need to do.
Greg Grunberg: So if somebody's out there, and they've got their seizures down to one a month...
Barry Gidal, PharmD: …Which is unacceptable.
Greg: That was my message; which was to say, "That's not acceptable." That's not somewhere you should feel comfortable.
Barry: There's no "OK-seizure-frequency" and you know this from your own experience with your son. But there are a lot of people out there who have been told this, that "Well, this is about the best we can hope for." Well, it may be the reality that it's the best that we can do, but it's not the best we can hope for. And that's what's exciting about these newer drugs that have been developed, because it does offer the possibility. Keep pitching. And keep asking for something new. Because we don't know yet what's going to be the right medicine. There's always hope.
Greg: (My son) Jake - when he started having seizures when he was seven, there was no reason for it. It's not like they looked at this brain and said, "Well, there's the target, we see it." There wasn't… He had brain surgery because we found the source where it was coming from, but that's not because there was this abnormality in the brain or something. And that - just for a parent to hear that – "Your son has a perfect brain. We don't know why it's happening." -- But I think we're getting closer and closer to figuring out, case by case, maybe why that's happening.
Barry: Well, that's what I was getting at. I think, with now being able to map the genome and look at the genetics, that's the next frontier, where we really can begin looking. And we really can do that. In some severe epilepsies, we know about the abnormalities that are not visible on an MRI. We can now know the genetic abnormalities, the problems at the neuron level, and we can begin targeting therapies for that. That's why I'm really optimistic about the next few years. A lot of this is still trial and error, and parents and patients have to accept that we can't do a blood test richt now and say "Ah - this is the one for you." We may have to try multiple different things and different doses. But it's a process. We're working on a process here, it's a long term game, so we're going to keep trying to put things together.
Greg: And certain medications work with others, they're designed to. Other medications are stand-alone, what do they call those where that one could be the only medication that you take.
Barry: That would be "The Right Medicine."
Greg: (laughter) Exactly. I've seen the combination of trying something new. Don't be afraid to try a new medication. There are people who have been using their medication for so long… I talk to them, and they say "I'm fine, I can deal with the weight gain, I can deal with this side effect," and I'm like, "No! because those side effects don't affect everybody. Talk to your doctor more, investigate more."
Barry: I'm glad that you brought up the side effects, because this is something I preach all the time. We always focus on seizure counts, well we should, on seizure frequency; but sometimes we neglect the side effects. Or we say, "Well, all these drugs have baggage, they all have side effects." You asked about how drugs have evolved over the last couple of decades, and one of the biggest areas has been, we've improved tolerability. We've got drugs that have fewer sedating or cognitive side effects, or causing weight gain, as an example. We're now able to figure out those drugs, and we've got newer drugs in testing that don't have those, or the drug interactions.
Greg: I know that Jake tries a new medication and then I gain weight. (chuckles)
Barry: (chuckles) Yes, that is really strange.
Milo: Remember to follow your treatment to help minimize your risk of having a seizure. To learn more, visit epilepsy.com.