Migraine: Disease or Condition [Interview][Transcript]

Prof_Joanna_Kempner_migraine_disease_condition
Guest: Professor Joanna Kempner
Presenter: Neal Howard
Guest Bio: Professor Joanna Kempner works at the intersection of medicine, science, gender, and the body. Her research focuses both on the formation of social problems and on the ways in which some issues are consistently ignored, dismissed, or de-legitimated. Her book, Not Tonight: Migraine and the Politics of Gender and Health (Chicago 2014) examines the social values embedded in the way we talk about, understand, and make policies for people in pain. She has also written extensively on the formation of “forbidden knowledge,” i.e. the boundaries that form around what we think is too dangerous, sensitive or taboo to research. She is currently working on several projects related to the politics of disease.

Segment overview: In this segment Professor Joanna Kempner talks about the diagnostic definition of migraine and the consensus about what migraine really is.

Transcript

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio. So glad that you could join us today. Our guest in studio today is returning to speak with us about Migraines and the Sociology of Migraine Headaches, Professor Joanna Kempner who received her PhD from the University of Pennsylvania. Prior to joining Rutgers, she was a fellow in the Robert Wood Johnson Scholars in Health Policy Research Program at the University of Michigan. She’s also a research associate at the Center for Health and Wellbeing at Princeton University. Her research appears in peer-review sociology and medical journals including Science, Social Science and Medicine, Gender and Society and others. How are you doing today Professor?

Joanne Kempner: I’m great, thanks for having me.

N: Thank you, thank you so much for returning. As the author of a book entitled “Not Tonight: Migraine and the Politics of Gender and Health,” Chicago Press, University of Chicago has that for sale, as does Amazon and all other major literary outlets. As the author of that book, are you a sufferer of migraine yourself?

J: Yes, I am. Unfortunately I have chronic migraine, which means that I get migraines most days of the month, well not more than half days of the month at the moment.

N: And I’ve heard that migraines could be genetic. Is that something that you have been able to dispel or substantiate so far in your research?

J: Well I myself I’m not a geneticist. But it does seem like migraine does have very strong genetic component, although it’s not always genetic. In my own family my grandmother has a very very strong inherited… it’s very clear that migraine runs in my family.

N: Is it fair or even safe to say that a person can develop migraine headaches from an injury? Where an injury has occurred, the injury’s healed, they’ve gone through physical therapy if that was necessary, they’ve gone through rehab if that was necessary. And then four months into recovery from this injury, they get these headaches and it’s said “Well is because of the injury, you’re still healing and what not.” Two years after this injury their experience in this horrendous headache on three or four days of the month or even more frequently, is that a possibility that you’ve touched upon?

J: Well migraine is the signature disorder that is coming back from veterans, who were returning from Iraq and Afghanistan. It’s a signature symptom of traumatic brain injury and we’re also seeing a lot of migraine coming out from football players and other athletes who are experiencing a number or a lot of concussions.

N: So if in fact migraine headache is a symptom, a signature symptom of returning veterans and also of contact sports in athletics, why is it that migraines are still treated as a personality disorder or something of the mind, when there is evidences that physiological factors play a part?

J: It’s a great question. I do, a lot of my research was historical and I trace this idea that migraine affects a certain kind of person through time. And one of the things that really surprised me was that at least until through the 18th century, physicians thought that migraine was physiological and that’s consistent but they also thought migraines affected a particular kind of person. Those two things are not mutually exclusive and this idea that migraine affects a particular type of person is so deeply entrenched in our culture, it’s going to be or have to change. Migraine has what I call a “legitimacy deficit.” There is a huge gap between the seriousness of migraine in terms of the personal devastation that people with migraine experience and the public health … of migraine and the amount of attention and resources of migraine gets, that I refer to as legitimacy gap, I’m sorry the legitimacy deficit.

N: Yes.

J: And I think that a lot of legitimacy deficit can be traced back to this idea that migraine is not a serious disorder. That it’s really just something that people who are a little bit whiny, who can’t handle the normal stresses of life complain about.

N: Okay. So basically what we’re saying is migraine, it’s a consensus that needs to be changed, is that migraine sufferers who people can’t handle stress the normal everyday stresses that maybe the rest or the other 90% that don’t suffer from migraine seem to be handling effectively. Is that what we’re saying here?

J: Yeah or I think people think that migraine is like any other kind of headache. And you can just, you should keep up with it and work through it just like anybody else with a headache. The lifetime prevalence rate for headache is 99%, almost everybody gets a headache. But there’s a big gap between getting a headache and having a migraine and I think people really just don’t understand that.

N: Now during your research, you’ve attended many professional headache conferences, talked with many many doctors who specialize in headaches, not just migraine. What kinds of attitudes about headache disorders have you run into? What’s the talk out there when it comes to headache among headache professionals?

J: So funny enough, when I first started going to these conferences I thought I was going to find doctors who really kind a laughing at their patients. I mean, I really didn’t know what to expect but actually what I found was that headache specialists felt just stigmatized and delegitimized as their patients.

N: Ah that’s extremely interesting. I mean I’ve been interviewing healthcare professionals for a while now, and this I do believe is the first time that I’ve heard of a specialist, in traditional medicine feeling stigmatized or delegitimized based on their specialty. Normally it’s the patient who is trying to get the physicians to give them some legitimacy about their condition, you know “Hey, fibromyalgia it doesn’t exist go over here. You don’t have fibromyalgia it doesn’t exist or you don’t have migraine.” Or some type of other chronic pain that seems to have no physiological indicator.

J: Well that’s why I was surprised. But this book about what we in sociology would call a courtesy stigma which meant that they didn’t think their colleagues respected that the work that they did. So in fact this quest for legitimacy and the kind of work that they did was so important to them, that when the American Headache Society held their 50th anniversary celebration, they did legitimacy the theme of that celebration. Doctors were working really hard to make migraine a more serious disorder and in part that was a survival tactic for them, they wanted to be taken more seriously in neurology.

N: Have you found that maybe one factor in the legitimacy deficit, is that sufferers possibly rely on for lack of a better term on lobbyists and their physicians as opposed to banding together to raise awareness like so many other groups of people have done in the last 15-20 years that just band together themselves and get the word out there on a grass roots type level.

J: Most of advocacy efforts that are directed towards Capital Hill and NIH are led by physicians. They have really done a wonderful job of engaging patient groups in getting patient groups involved as well. So that partnership exists and that’s how patients are getting involved in this kind of work. I think that those efforts got to get stronger and I do believe they are getting stronger. But it’s taken a long time for the migraine community to get there.

N: You know there are several disorders, diseases, conditions, what have you, whatever you want to call them, where a person feels ashamed to even seek help for sometimes until it’s almost too late. I don’t think I’ve ever heard of someone dying as a result of a migraine headache but my wife suffers from migraine and I know that she can be down for anywhere from 3 to 9 days in the most severe of attacks. In the early days, it was like she didn’t want to tell anybody.

J: Migraine is very, very stigmatized and I think that is one of the things that really hinders advocacy efforts. And I think that people had taken on this idea that migraine isn’t worth advocacy efforts. I’ve seen people with very severe migraine really work hard for diseases that they don’t have, but not make an effort for their own disorder that’s keeping them in bed for 3 to 9 days, that’s awful, right? But they don’t see that people with migraine have a hard time seeing how that’s something worthy of their own advocacy efforts. And that to me is really embracing and sort of embodying the stigma of having a migraine. The other problem with migraine advocacy is that people with migraine often don’t feel well enough to be advocates for themselves.

N: Yeah, it does. It causes nausea, and loss of sight, all sorts of things that one would associate with other diseases, but you know it’s not, it’s actually migraine. You know as we wrap up this segment, you spoke of migraine not responding to opioids. We’ve talked about physical injury, we’ve talked about not specifically PTSD, but returning veterans who have been through traumatic experiences in combat and other functions in the military. When it comes to a chemical imbalance, there are so many conditions mental conditions and physical conditions that are caused by a chemical imbalance. Where does that chemical imbalance come in to play when we’re talking about migraine based on the fact that there is a medicine that will help migraine as opposed to opioids?

J: I think when you’re referring to chemical imbalance, you’re talking about the role of neurotransmitters and that is certainly a target for migraine drug intervention. And so what the current biomedical theory for what causes migraine and how migraine works, has to do with an inherited dysfunction in somewhere probably in the brain stems, somewhere kind of deep in your brain. And that causes problems that can be mediated through via your neurotransmitter. So the drugs that work on migraine tend to work through Serotonin, some of the same drugs that work for depression. And like the Trycyclic anti-depressants can have an effects on migraine. The best … drugs for migraine work on Serotonin and the drugs now that are showing those promise in development right now are CGRP agonists which is another kind of drug that it works on our neurotransmitter.

N: Okay. Now I did try to give our listeners some information as to where they could get a copy of your book but I’m gonna let you go ahead and do that since you know better than I. Where can they get a copy of “Not Tonight: Migraine and the Politics of Gender and Health?”

J: Thanks for that. It’s available on my publisher’s website University of Chicago Press, you can also get it on Amazon or any other major retailer.

N: And do you have a website with information as well?

N: Yes. www.joannakempner.com I also have some articles available … on my website.

N: Great thank you so much. You’ve been listening to Health Professional Radio, I’m your host Neal Howard. We’ve been talking in studio today with returning guest Professor Joanna Kempner, doing research into migraine headaches. And we’ve been here talking about the diagnostic definition of migraine and the consensus about what migraine really is and what it is not. We’ve also been touching on some of the ways that migraine sufferers are stigmatized. And I think that we might get into that a little bit more in future segments. It’s been great having you here with us today Joanna.

J: Thank you.

N: Thank you so much. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to our podcast on iTunes.