Peter L. Salgo, MD: Again, another definitional issue here. What’s the difference between an episodic and chronic migraine? How do we parse that out?
Jill Dehlin, RN: The difference is pretty arbitrary, I believe. The dividing line is whether or not a person has more or less than 15 headache days per month. Not migraine days, headache days. Someone who has chronic migraine is experiencing 15 or more headache days per month and 8 migraine days per month.
Malaika Stoll, MD, MPA: That’s a lot.
Peter L. Salgo, MD: I want to stop and drill into those numbers. Fifteen headache days per month. That’s approximately half of your life.
Jill Dehlin, RN: Yes.
Peter L. Salgo, MD: That’s a lot, and then it goes up from there. This is a disabling, horrible problem.
Jill Dehlin, RN: Yes.
Peter L. Salgo, MD: I’m not sure that a lot of clinicians get that. They see a patient who comes in, who says, “I’ve got a migraine.” Yes, but they’ve got it for half of their life and it’s disabling.
How many of these patients are undiagnosed? It would strike me that if it’s that bad, for that often, you can’t have a lot of undiagnosed folks out there?
Malaika Stoll, MD, MPA: The studies that I’ve seen have said that about half of patients are undiagnosed. Half are going around with this pain, with this suffering, with no name to put to it. There is no understanding of it.
Peter L. Salgo, MD: You’ve got half of the people who are sick for half of the days of the month with pain that is disabling, but they’re not diagnosed? They’re not seeing doctors? Why don’t they come to our attention?
Malaika Stoll, MD, MPA: I think there’s stigma around pain. There’s stigma around chronic pain. I think there’s confusion—a lack of education in terms of what this is. I think it can be mistaken for other situations. You mentioned sinusitis. There are a lot of reasons why people don’t come in, get diagnosed, and get treated, unfortunately.
Peter L. Salgo, MD: All I know is if I had a bad sinus headache for 15 days a month, every month, I’d probably come in to see you.
Peter Goadsby, MD, PhD: It might seem odd, but people who have something all the time begin to think it’s normal. Many patients I see will talk about their bad days. If you drill down on it, they regard the not-so-bad days as normal days. Imagine that you live in a family where mom and dad have headaches and you’ve got headaches. Your brothers and sisters have got headaches. Actually, everyone around you has headaches. You might get the idea that this is pretty normal. While that might sound crazy, I think there’s an element of this living with normality. Migraine patients do an incredible job of doing the best that they can, given all of the disability. They kind of learn to get on with it. It just surprises me, sometimes, how much they can get done, given how much they’re disabled by it.
Peter L. Salgo, MD: There’s a tremendous economic burden.
Malaika Stoll, MD, MPA: Not everybody is able to function at that level.
Peter Goadsby, MD, PhD: No, I wouldn’t suggest everybody, but I think it explains some part of the very large proportion of people who don’t get diagnosed or don’t get managed. They just get used to it. They operate at a lower level, and their life is never what it could be.
Peter L. Salgo, MD: From an economic standpoint, there’s got to be a loss of productivity? Employers have got to see this as a tremendous burden?
Malaika Stoll, MD, MPA: I think it’s one of the main reasons why people miss work. They say it affects absenteeism and presenteeism. People are actually at work but are not functioning where they could be. So, this is a huge issue for employers and, obviously, for migraine sufferers themselves. They can’t participate.
Peter L. Salgo, MD: It brings us to you, the patient advocate.
Jill Dehlin, RN: Right. I have a friend who has to work. She has a bed in the back of her car that she goes to at lunchtime. She takes a break. She takes a nap. She tries to recover from her morning, and then she goes back in and goes to work.
Peter L. Salgo, MD: What about the folks who come in complaining of headaches and get misdiagnosed? How often does that happen?
Jill Dehlin, RN: I’m not certain how often that happens, but I do know from anecdotal experience that there are people who go to their physicians and get a hand pat. They say, “Oh dear, it’s just stress.” Or “Gosh, your breasts are so large. I think you need a breast reduction.” Or “Have you tried meditation and chamomile tea?” But that’s not always the case.
Peter L. Salgo, MD: What about comorbidities? We’re not just talking about pain, right? What else do patients have to deal with?
Peter Goadsby, MD, PhD: Typically, they deal with sleep disorders, anxiety problems, or depression problems. Obesity is a comorbidity. Asthma is a comorbidity. It’s quite extraordinary, the burden. There’s the burden on the patient and, as you were saying, on the economics. The burden on the United States economy is estimated at north of $20 billion a year.
Peter L. Salgo, MD: That’s with a letter B. Those are federal numbers.
Peter Goadsby, MD, PhD: Yes.
Peter L. Salgo, MD: That’s big. That’s a tremendous, tremendous expense.
Peter Goadsby, MD, PhD: It’s very expensive.
Peter L. Salgo, MD: I’m curious as to why we don’t recognize what a tremendous expense this is and why we’re not mobilizing more resources. Does anybody know?
Jill Dehlin, RN: As you mentioned, there’s a big stigma surrounding many headache disorders. And, as Dr Goadsby said, people push through. In the migraine community, we refer to our pain in levels of 1 to 10, as most physicians do. If you have level 4 pain, you can pretty much push through your day. But, other than that, it’s a problem.
Peter Goadsby, MD, PhD: There was a time when people with epilepsy were considered as possessed and burned at the stake. Electroencephalography brain testing probably rehabilitated epilepsy. I don’t mean to trivialize epilepsy in any way. Diseases come of their age. Migraine has been a bit of the Cinderella. It’s been underrecognized. It’s been difficult to plug. The diagnosis is tricky. It’s evolving and we’re living the dream. We’re living the dream of understanding. We’re getting some idea about the genetics. We’ve got brain functional imaging to show us that things are actually happening. We’re developing new therapies that are specific for the condition. I don’t want to be too critical of doctors, because it’s been difficult. I think it’s getting better. Now there is an opportunity to grasp these improvements.