New treatments specific for the prevention of episodic and chronic migraines continue to make the news. While that’s exciting for the field, it’s important that providers are given a thorough understanding of when to use a [preventive] agent and what [preventive] agents are available. We want to make sure that we’re advocating for our patients, so they get the optimal treatment that works for them.

I am Dr Peter Salgo. I’m a professor of medicine and anesthesiology at Columbia University College of Physicians and Surgeons and [an] associate director of surgical intensive care at NewYork-Presbyterian Hospital.

Participating today on our distinguished panel are: Dr Wayne Burton, [the] former global corporate medical director at American Express, here from Chicago, Illinois; Dr Maria Lopes, medical director at AMC Health in New York, New York; Dr Stephen Silberstein, a professor of neurology at Thomas Jefferson University and the director of the Jefferson Headache Center in Philadelphia, Pennsylvania; and Shoshana Lipson, [a] patient advocate and [the] founder of CGRP and Migraine Community and Migraine Meanderings. That’s a great name.

Shoshana Lipson: Thank you.

Peter Salgo, MD: I want to thank all of you for being here today, and before we get going on some of the technical details, why don’t we get some of the definitions straight. How about what’s a migraine, Stephen?

Stephen Silberstein, MD: A migraine is more than a headache. The headache itself can be 1 or both sided, throbbing, and it keeps you from moving. In addition to which there can be sensitivity to light, sound, and odors and nausea. But it’s more than that. Many people before the migraine attack begins have premonitory symptoms, like their neck hurts. And then right before the headache, they have the aura. It could be flashing lights, it could be shimmering lights, or it can even be the illusions that Lewis Carroll described in Alice in Wonderland.

Peter Salgo, MD: Oh, whoa, stop, because I remember Alice in Wonderland. But tell me what those illusions are, because I didn’t catch that.

Stephen Silberstein, MD: Remember the things being bigger or smaller than [they really were]? Those things can happen during a migraine attack.

Peter Salgo, MD: That was the eat-me moment with the little mushroom and the cookies.

Stephen Silberstein, MD: That’s right, but it wasn’t the mushroom that was psychedelic. It was the migraine attack, because Lewis Carroll had [a] migraine.

Peter Salgo, MD: Spoken like a migraine doctor. There’s 1 other thing that people talk about, which is visual migraines. Now, those don‘t hurt. What are they?

Stephen Silberstein, MD: If you have the aura, just the flashing lights or these illusions without a headache, that’s called a visual migraine. Today we call it a migraine aura without a headache.

Peter Salgo, MD: OK. So you can have a migraine without the headache, but that’s not really what we’re discussing today.

Stephen Silberstein, MD: Correct.

Peter Salgo, MD: We’re discussing disabling migraines if you will. Are there migraines that aren’t disabling? [Is there] pain that isn’t disabling?

Stephen Silberstein, MD: There are many people with migraine who have milder headaches that they call tension headache, but in fact they are mild migraine.

Peter Salgo, MD: That may have been what I had when I was much younger. And if that’s all it was and that wasn’t a real migraine, I never want a real migraine. That was awful. What is the difference, then, between episodic migraines and chronic migraines?

Stephen Silberstein, MD: If you have headache days, more than 15 a month, the majority of which are migraine, that’s called chronic migraine. If you have less than 15 headache days per month, by definition it’s called episodic migraine.

Peter Salgo, MD: Like all definitions, some of this is kind of arbitrary, right? Fifteen, 16, 14. Why 15?

Stephen Silberstein, MD: It’s more than arbitrary in the real world because the criteria for some of the medicines depend on the trials, and they use that arbitrary definition to decide it. For example, with some of the medicines, they won’t approve it for episodic migraine, but they will approve it for chronic migraine.

Peter Salgo, MD: Again, it’s an arbitrary number in a sense that that’s what was set up by the trial, but then that arbitrary number is adopted by payers to make you qualified or not qualified for various medications.

Stephen Silberstein, MD: That is correct.

Peter Salgo, MD: Is that fair? Let’s talk about this now from a payers’ perspective if you will. How many patients out there with migraines are presumed to be undiagnosed?

Wayne N. Burton, MD: Well, 1 study showed at least 44% of patients [who] have migraine are undiagnosed, and the other research study has shown that from the onset of symptoms to the diagnosis can be 5 years in about a majority of migraineurs.

Peter Salgo, MD: Now, he just told us that these symptoms can be disabling. They’re horrendous— nausea, photosensitivity, sensitive to sound, disabling. How can—it boggles the mind that half of people with this are undiagnosed. Where have they been for 4 years, 5 years?

Wayne N. Burton, MD: Well, some of them are misdiagnosed and some of them are undiagnosed. People think that they have tension headaches, [that] they have sinus headaches, when in fact those are migraine headaches.

Peter Salgo, MD: Now, you run a blog.

Shoshana Lipson: Yeah.

Peter Salgo, MD: And you’re a patient advocate.

Shoshana Lipson: Right.

Peter Salgo, MD: Tell me about this misdiagnosis. What does that mean to a patient who has disabling headaches, goes to somebody and gets told, Nah, your headaches are sinus or something else?

Shoshana Lipson: Well, the impact of that is huge obviously. The few people [who] actually get diagnosed quickly are the fortunate ones. As you said, it could take 5 years or even more. It took much longer for me to get diagnosed, just because that was a very long time ago when I was a child and first started getting migraine headaches.

Peter Salgo, MD: It wasn’t that long ago, come on.

Shoshana Lipson: Well, thank you, I appreciate that. But the ramifications of that are huge because if you are misdiagnosed or if you are not diagnosed at all, then patients tend to self-medicate. And then when you self-medicate, it’s often inappropriately. Or you overuse that medication, which can magnify the problems.

Peter Salgo, MD: So let’s talk, then, about controlling migraines. What is uncontrolled versus controlled migraine? Is it simple? Is it intuitive? Is there a technical difference?

Stephen Silberstein, MD: It depends on what the patient believes.

Peter Salgo, MD: What does that mean?

Stephen Silberstein, MD: [A] patient [walks] into your office, and they say, “I have uncontrollable migraines.” Then you ask, “What do you mean by that?” “Well, I have a horrible headache once a week, there’s nothing I can do, and it’s horribly disabling.” Or another patient might say to you, “I have headache all the time, I have no life, [and] it’s uncontrollable.” Or they can tell you, “I’ve tried everything, and nothing works.” So it’s really what the patient means by it.

Peter Salgo, MD: What proportion of all-comers—let’s say [they] get the right diagnosis [and] come to a doctor—what percentage of those patients are uncontrolled?

Stephen Silberstein, MD: It depends on where you are in the food chain. I would suspect with adequate treatment, [fewer] than 1 in 10 patients today are uncontrolled.

Peter Salgo, MD: So the good news is, if I understand what everybody said, we can control 90% of all-comers to 1 in 10 uncontrolled. The bad news is 40%, [or] somewhere thereabouts, don’t get the right diagnosis and ergo don’t get treated [or get the right treatment]. Is that fair?

Stephen Silberstein, MD: That is correct.

Peter Salgo, MD: Wow.

Maria Lopes, MD, MS: If I can jump in as a payer as well, the diagnostic odyssey sometimes is an interesting one. We’ll see patients [who] are presenting to the emergency [department] multiple times. They’ll end up on opioids. They will have MRIs [magnetic resonance imaging] or diagnostic imaging [exams]. And so many times it really does help to have a member, if you will, referred to a treating specialist who can confirm the diagnosis and establish the right treatment pattern.