SUDEP, or Sudden Unexpected Death in Epilepsy, is a real risk for people living with epilepsy, especially if they have uncontrolled seizures. People living with epilepsy MUST make sure they are getting the best possible care and striving for the best seizure control they can.
Please make sure you are following your doctor’s instructions for your treatment. For example, always take the proper dose of your medication on time.
If you do not follow your treatment plan, you risk having a breakthrough seizure with potentially devastating results.
If you are following your treatment plan and still have seizures, talk with an epilepsy specialist about other options like surgery, devices, dietary therapy, or a clinical trial.
People living with epilepsy, their families, and epilepsy health care providers should never be afraid to talk about SUDEP.
INT. DIMLY LIT SUBWAY STATION PLATFORM NEAR AN ESCALATOR.
Singer-Songwriter JOHN MAYER: Epilepsy. Anyone can be diagnosed at any time of their lives. Young or old. Male or female. And if you or someone you know is told they have epilepsy, here's some of what you should know...The station darkens, moving focus to a TV monitor featuring an expert panel interview.
Greg Grunberg interviews Orrin Devinsky, M.D. (NYU Epilepsy Center).
Greg Grunberg: You're one of the hardest-working advocates for epilepsy that we have.
Orrin Devinsky, M.D.: I appreciate it. It's close to my heart, I've been doing it for 25 years, I know how much epilepsy affects, children, adults, families, and there's a lot more we need to do as medical and lay communities.
Greg: And there's every aspect of epilepsy and new therapies. There's so much that I could pick your brain about… but, I want to talk about SUDEP for a second. Because we're all in the community, and as the parent of a child – who is 19, (now) a grown man who has epilepsy – this is something that is in the back of our minds – if we have even heard about it. First, if you would tell us, what is SUDEP?
Orrin: SUDEP is Sudden Unexpected Death in Epilepsy. And, it unfortunately is a very common disorder. It's one of those things that, if you look at it for a single patient in a short period of time, it's not so likely. But when you look at a young person whose seizures continue, especially if they have some breakthrough tonic-clonic seizures (or, grand mal seizures), over the course of a decade, the risk could be from one to up to five percent.
Greg: Wow. And you still look at that and you say, "That's a really small percentage," but it really isn't, when you think about it.
Orrin: When you look at it over time, it's different. And I should clarify what it is – SUDEP is when somebody with epilepsy dies, and there really is no other cause.
Greg: Now is there anything we have discovered so far, outside of being strict with your regimen, getting sleep, taking a nap, taking your medication on a regular basis… Is there anything else we can do, patients or caregivers, to help prevent this?
Orrin: I think any way to get better seizure control; which could be a referral for epilepsy surgery, consideration of a stimulation device, a new drug…
But in addition to those basic things, the other thing that has emerged from several studies – and it's not absolutely proven, but we think it's probably true – is that some type of monitoring. If someone else is in the home or in the apartment – if you have a thirty-year old brother who lives in the apartment with you and he has occasional nocturnal seizures – then even having a sound alarm, a baby monitor, literally may allow you to know that a seizure has occurred.
What we've found from epilepsy monitoring unit studies and also from studies in England, where people who have developmental disabilities live in a residential setting, and in those settings, they are closely monitored. Counselors go by, there are listening devices… the rate of SUDEP is extremely low. The SUDEP occurs when the person goes home, and is with their adult parents, sleeping in a bedroom down the hall and then has a seizure at night, nobody knows about it, nobody tends to the person.
So in many cases when there is a nocturnal seizure, probably simply stimulating the person, touching the person, rolling them on their sides, and saying "Gregory are you OK?" very gently rouses them, and that arousal after a seizure can instigate breathing again, and prevent the cascade that leads to SUDEP.
Greg: Now that is HUGE what you just said. That's not something I knew about, honestly. If there's even the smallest chance of stopping the percentage of it happening…
The TV monitor darkens, and station brightens again, illuminating John.
John Mayer: Because it can happen to anyone, because you may know someone right now who has epilepsy, please learn more about it... and promise to talk about it ...
John exits to the left, to the sound of a departing subway train.