Diane talks with Ari Berman, senior reporter at Mother Jones and author of the book, “Give Us The Ballot: The Modern Struggle For Voting Rights In America.”
Severe, throbbing head pain, sensitivity to light, nausea…these are just some of the symptoms the 36 million migraine sufferers in the U.S. regularly endure. The WHO still ranks migraine among the most debilitating conditions worldwide. And yet it has remained difficult to treat. Patients have long relied on medication meant for other illnesses to manage migraine headaches, sometimes with limited success. But that could be changing: New drugs are being tested that target a chemical involved with the brain’s pain signaling during migraines. And while questions remain, the drugs show promise. Why some experts say it’s a new era for our understanding of migraine and how to treat it.
- Dr. David Dodick Director, migraine program at the Mayo Clinic; chair, American Migraine Foundation
- Dr. Jessica Ailani Director, MedStar Georgetown University Headache Center; associate professor of neurology, Georgetown’s School of Medicine
- Dr. Peter Goadsby Director, NIHR-Wellcome Trust Kings Clinical Research Facility at Kings College London; neurology professor, the University of California, San Francisco; co-author of recent papers on the latest drugs
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Sufferers of migraines know how debilitating they can be and how disruptive to daily life. Patients have long been hoping for better medication. That day may finally be approaching as recent research changes how doctors think about the disabling condition and new drugs show promise. Here to talk about the latest in our understanding of migraines and how to treat them, Dr. Jessica Ailani of the MedStar Georgetown University Headache Center.
MS. DIANE REHMJoining us from Tempe, Arizona, Dr. David Dodick of the migraine program at the Mayo Clinic. And joining us from London, Dr. Peter Goadsby of Kings College London. I do welcome your questions, comments. Join us on 800-433-8850. Send us an email to firstname.lastname@example.org. Follow us on Facebook or send us a tweet. Thank you all for being with us.
DR. JESSICA AILANIThank you very much for having me here today.
DR. DAVID DODICKPleasure to be here, Diane.
DR. PETER GOADSBYThank you for asking.
REHMAnd Dr. Dodick, I'll start with you. Our understanding of the causes of migraine has been evolving over the years. Tell me about the prevailing wisdom that used to be in place about what was happening in the brain and how that has changed over time.
DODICKWell, Diane, the prevailing wisdom used to be that migraine was a vascular headache disorder and what was meant by that was that the neurological symptoms that patients might experience before the pain was due to constriction of blood vessels around the brain and low blood supply to the brain. And then, the pain that patients would develop during a headache was due to the rebound sort of vasodilation or distention of those blood vessels, which would be painful.
DODICKThat was the conventional wisdom. But for the past 20 to 30 years, we now have a new understanding of migraine as a problem within the central nervous system itself, within the brain itself. And the problem is such that there's a problem with modulating sensory information that's coming into the nervous system. That sensory information could be normal pain signaling. It could be light. It could be sound. It could be odors. So the migraine brain processes that pain -- processes that information differently.
REHMDr. Goadsby, I gather you were behind much of this research and it started a long time ago. Why do you think it's taken so long to gain acceptance?
GOADSBYWell, yes, it has taken a little while. It only seems like yesterday. But the story goes back 30 years to a point where, as David Dodick was just saying, that people thought about migraine as a blood vessel problem. And we were emerging to think about the nerves and a colleague -- Lars Edvinsson in Sweden, was thinking about the nerves. Thirty years ago, we met at a meeting where we were both trying to understand how pain nerves, the trigeminal nerves, work in experimental situations and then how they're involved in the human problem.
GOADSBYAnd so we set about doing some experiments to ask what are the kind of chemicals, the transmitters that the brain and the nerves use to communicate pain? And at the time, we've identified -- well, he'd identified two important things in the nerve, the head nerve, the trigeminal nerves, one called substance P and the other one called calcitonin gene related peptide or CGRP. And at the time, people thought substance P was really going to be the bees knees and that would be very important.
GOADSBYWe started doing some experiments to look at these two things. Well, to cut a long story short, it turned out that the CGRP that we showed was important has turned out to be the real business and substance P turned out not to be important. It took a long time for people to get their head around the idea that something they liked wasn't important. And then, it took a long time for companies to work out how to block the effects of CGRP. And underlying all of that, for a condition that affects hundreds of millions of people worldwide, you know what I'm going to say, tens of millions of people in the U.S., barely 25 cents gets spent a year on research.
GOADSBYSo it's not surprising if you've got a good idea, it takes decades to drag it into the clinic.
REHMDr. Peter Goadsby, he's with the NIHR Welcome Trust at Kings Clinical Research Facility at Kings College London. And turning to you, Dr. Ailani, has this new thinking changed your approach to treating patients who do come in complaining of migraine?
AILANIWell, yes. I think I'm lucky in that I was trained in the approach that, as was mentioned, it took eons to get to this point. And, you know, when we approach patients with migraine, we do have to do a lot of explaining about it's not just the blood vessels because many times, they come in with this idea if you change the way my blood vessels work, you will change my migraines. And we have to have long conversations about how all these external things impact the brain and the nerves around the brain and the chemicals that get processed through this and that changing these things will then, hopefully, improve their symptoms, so.
REHMSo what's available to those patients now and what do you see coming down the road?
AILANISo currently, the options that are available are a series of different medications to be on, depending on how frequent the migraines are. Every day or things you take as needed. We talk a lot about lifestyle changes, exercising better, eating properly, sleeping properly, stress management to the best that a person can manage their stress. But medication-wise, we've borrowed from many different classes. We really haven't had anything made specifically for the field of migraine.
AILANIAgain, the idea that this is something that affects millions upon millions of people and yet, we have nothing that was made just for us so we borrow medications from the anti-depressant class or blood pressure agents or anti-seizure medications, often shocking our patients. Why are you putting me on a seizure medicine? I don't have seizures. Or why am I taking a medicine for blood pressure when my blood pressure's so low to begin with?
AILANIWell, these are the medications currently available to us to help modulate pain in the brain and to reduce frequency.
REHMAnd how much do those medications help?
AILANIThey help a portion of patients, about 60 percent of patients are helped from preventive agents. The problem is, they come with a lot of side effects. Some of them pretty disabling, enough where they'll stop taking the medication because they can't tolerate the medication even though they're feeling better. Many of these medications cause fatigue, weight gain, heartrate slowing, difficulty exercising, difficulty functioning day to day.
REHMSo Dr. Goadsby, as this new thinking about migraines has developed, has there been the development of new medications to go along with this new approach?
GOADSBYWell, the first of the big changes in migraine happened with treatment with the so-called triptans. In the very early 1990s, drugs like sumatriptan and rizatriptan and zolmitriptan and eletriptan and almotriptan and frovatriptan and naratriptan, you get the triptan thing.
GOADSBYAnd they were developed on the idea -- when people still thought everything was about blood vessels and it turned out, the research has shown, we've done work on this and I know that David collaborates with Frank (word?) there in Arizona. Others have done work on this to show that these drugs have important effects on nerves. So the baggage that the triptans had, that although they have a small vessel effect, they still do tighten, constrict blood vessels and so for many of our patients, we've got two problems.
GOADSBYWe've got, A, we're saying to them, well, actually, we don't think that's very important, but they constrict blood vessels anyway. And B, if you happen to have a heart problem or a head problem in the blood vessels, like coronary heart problem, that can be a very dangerous problem.
GOADSBYSo we have an effect we didn't need that's dragged us forward. Now, the great thing about this new development with the CGRP treatment is that there's a -- and one other treatment that's coming along, the so-called 1F receptor drug -- is that they don't constrict blood vessels. So we're developing drugs that fit the problem and don't create another problem. I think that's what Jessica was mentioning very importantly. You know, at the moment, we give our patients a choice between putting on weight or losing their mind or having their hair fall out or having some other, you know, we give them a choice of side effects.
GOADSBYWhat we're looking for is a migraine treatment to treat migraine patients.
GOADSBYAnd that might sound really simple, but it's taken a long time to get there.
REHMDr. Dodick, what do you see as coming along that really could be of help to these patients?
DODICKWell, Diane, I don't think there's -- in the 20 plus years I've been in this field, I don't think there's been a more exciting time because we're entering a new era where we have disease-specific medications that are, hopefully, right around the corner that actually, as Dr. Goadsby mentioned, actually treat the disease without having, you know, bystander effects on blood vessels that we don't want. So we have these new CGRP receptor antagonists, they're called, as well as CGRP monoclonal antibodies that target that protein, CGRP, or its receptors specifically.
DODICKSo they're highly precise medications that have an effect on the very thing we are trying to target. And so one wouldn't expect to have a lot of toxicity or a lot of side effects associated. The monoclonal antibodies, for example, are, in themselves, proteins that are broken down into their own amino acids when they get into the body so we're optimistic that we are ushering in a new era of disease-specific preventive therapy that’s...
REHMAll right. We'll take a short break here. Dr. David Dodick is at the Mayo Clinic in Tempe, Arizona. Short break, we'll be right back.
REHMAnd welcome back. We've had so many questions about migraines on Facebook. If you'd like to add one to it, feel free to do that. You can also call us on 800-433-8850, send us an email to email@example.com. Dr. Ailani, before we go any further, explain what we know happens when somebody gets a migraine. I'm not talking about in technical terms.
REHMTell me what -- have you ever experienced one?
AILANIYes. I've been unfortunate enough to experience migraines.
REHMAll right then, explain what happened in your case.
AILANISo, well basically with migraine, what we notice is you have severe pain. You get nauseous.
REHMWhere do you have the pain?
AILANIIt can be anywhere.
AILANIAnywhere. In the temples, the forehead, the back of the head, it can start in the neck in the shoulders and creep its way upwards. It usually will stick to one side but, in some people, it can go both sides of the head. So one temple or the other or just one sided. Many people will say, it's always in the same location, always this right temple, right behind the eye, like I could take a stick and pull my eye out, I would feel so much better. And with the pain comes a series of symptoms, most commonly nausea. The sense of, I don't want to eat anything. I kind of feel queasy. Food is unappetizing, the smell, the odor, this is really bothersome to me.
AILANIVomiting. A portion of patients will throw up if the pain gets bad enough. And that's part of the migraine process. Light and sound sensitivity. So, often, they'll want to shut their lights off and, you know, especially the fluorescent lights in their office, they'll have somebody come and shut that portion off. They want to stay in a dark area. They don't want to talk to anyone.
REHMAnd to what do you attribute that, that need for darkness or shutting out the light?
AILANISo, we know this comes from activations of certain part of the brain that get over-sensitized to sound, to smells, to light. And these different parts of the brain will get activated at different points in the migraine, it can cause these symptoms. There's also an array of different chemicals that are released that can cause various other symptoms -- nausea, yawning, fatigue, concentration problems, difficulty focusing during a migraine itself.
REHMSo what kinds of medications are you now using?
AILANISo currently what is available to us is the triptans that Dr. Goadsby had mentioned...
AILANI...the sumatriptan, rizatriptan, you know, there's a series of them. That's the most commonly used medication prescribed by a neurologist or a headache specialist, and sometimes prescribed by your primary care provider. Honestly, if you ask my patients, they'll tell you the most commonly used medication is Excedrin, BC Powder, Goody's Powder. This is what's really easy to find over-the-counter, a combination aspirin, acetaminophen, caffeine, and they find that it helps reduce the frequency of -- or severity of their headaches when it's coming.
REHMAnd, Dr. Dodick, what's wrong with these -- heavy use of these kinds of medications?
DODICKWell, Diane, for a lot of people, they don't work very well, particularly for those who have moderate or severe attacks. And the second thing is that people get into a pattern of overuse, where they consume a lot of these medications in an effort to try to alleviate the pain effectively. And what happens is that these medications -- especially the over-the-counter medications -- lead to more attacks. And so you get a situation that I see every single...
REHMHold on there. What do you mean they lead to more attacks? Is there sort of a bounce-back situation?
DODICKExactly. Some people used to refer to it as rebound but...
DODICK...when you take these medications in excess, they actually grease the skids for the next attack. And so patients that come into my office every single day have attacks every single day.
DODICKAnd many of them are in continuous pain. And they're using these medications, many doses of these medications every single day. So they're, A, ineffective for many patients and, B, lead to another problem that we call medication overuse headache.
REHMSo, Dr. Goadsby, I'm sure you're optimistic about new drugs that will treat these CGRP headaches in a different way. How soon do you think those new medications might be on the market?
GOADSBYI'm incredibly optimistic, because we're entering an era where we've got -- where we have therapy that's designed for the patients and based on understanding, instead of just pulling something from blood pressure or from epilepsy. That's optimistic. So people listening to this should know that research is delivering them something real. It's going to deliver them medicines and safer medicines. And it's going to deliver them within the next couple of years. It's certainly -- certainly, because at the moment these things are in what's called Phase III studies, so they're large studies where as much information is collected as possible. And then they'll go to the regulators.
GOADSBYAnd, you know, the regulators understand that this is breakthrough therapy. They're, you know, they've got a very positive attitude to it. And it's really great to see patient interest and the doctors' interest and the regulators' interest all lined up. So patients can look forward to something excellent happening.
REHMDr. Dodick, how will these new medications be administered?
DODICKWell, the exciting thing here, Diane, is that for the past several decades all we've talked about is acute therapy -- therapy that patients take when they get an attack. What we're talking about here now is preventive therapy -- therapy that's taken on a monthly or quarterly basis that will actually suppress attacks from ever being -- from ever happening in the first place. So that's one thing that's very exciting.
DODICKThe other thing is that rather than popping a pill or two pills or three pills every single day by mouth, what patients will be doing is, hopefully, when these drugs -- if and when these drugs are approved, they'll be self-administering them subcutaneously, with one injection per month or maybe even less -- maybe one injection per quarter, so up to maybe four injections per year. So that's very exciting, that a patient can self-administer the therapy themselves once a month or once every three months without having to take medication every day by mouth.
REHMDo you have any concerns about these new drugs? Side effects?
DODICKWell, thus far, the nice thing that we've seen in all of these Phase II studies is that they seem to be very well tolerated. The side-effect profile appears to be similar to placebo. Now, what happens when we expose tens or hundreds of thousands of patients to these medications over a long term, over several years, we don't yet know. So there are, of course, always concerns when you have new medicines that haven't been tested in enough patients. If there's a rare side effect or an uncommon side effect, sometimes it takes tens of thousands or hundreds of thousands of patients' exposures to be able to see some of the more less-common side effects that you may see with this class.
DODICKBut, thus far, in the Phase II trials with several thousands of patients having received these medications, they seem to be very well tolerated and, thus far, safe.
REHMDr. Goadsby, where are these Phase II patients? Are they all over the world?
GOADSBYYes. Most of the -- yes, are all pretty much all over the world. Most of the studies have been done in North America, the United States, Canada and in Europe. And, as David earlier just said, it's remarkably well tolerated. It's almost embarrassing when you think about it in a sense that we're so used to telling our migraine patients about side effects. It takes up half of our conversation. But -- well, it's true. It has -- that's what happened.
GOADSBYAnd now we're faced with something where we're almost embarrassingly saying, well, we really can't think of a side effect but we're going to go looking for one. It's a very interesting dynamic that I don't think migraine doctors have had in the past. But, you know, and I'm looking forward to a time when it's like that.
REHMHowever, you know far better than I that sometimes side effects take a long time to show up and be documented. That's the kicker.
GOADSBYI totally agree with you. If there's an unusual side effect, it's going to take a long time to come. I'm -- what I'm really doing is contrasting what we've seen in these studies with the sure knowledge that if I put someone on a prevent -- standard prevented today, it will be exceptional that they won't have at least some side effect that they will report back. And that contrast -- I don't mean to whitewash them. Of course we'll study them. Of course we'll be careful. And of course we're concerned. But, you know, I just smile and think to myself, there's an era coming when we're going to do so much better, that it's almost sort of gingly and scary to think about it.
REHMHmm. And, Dr. Ailani, do you have any patients who are participating in these studies?
AILANIWe have a number of patients that are looking to get into a Phase III trial. There's only a few that are about to get started. They're kind of dispersed through the country. We're hopeful to start some of the Phase III at our center at Georgetown. But it does take a lot to get a clinical trial started. So we have a number about to enter but not many that have been in the Phase III study yet.
REHMI asked you earlier to describe the migraine headache. How long might they last in some people's cases?
AILANIThey can last up to three days. There are other people, they can last a week or two. But there's about 4 percent of people that the migraine never really stops. It's something that happens every single day, all hours of the day and is continuous. And there -- this syndrome called chronic migraine, it's really disabling. It's hard to function when you're having pain all the time and the level can really differentiate from moderate to severe and at random it can get worse.
REHMDr. Dodick, here's a part of a question we received from Loretta on Facebook. She says, I had lupus and fibromyalgia with migraines as a leading symptom. Every time a new come -- medication comes out for migraine, I feel like a guinea pig with disastrous results because of the drug sensitivities that come with these conditions. How would you respond?
DODICKYes. Well, a lot of my patients have similar problems to Loretta. One of the things we've noticed is that migraine, as bad as it is, it also is associated with a number of other diseases, comorbid diseases we call them, fibromyalgia being one of them. So a lot of our patients suffer with other chronic pain syndromes. And, as Dr. Goadsby and Dr. Ailani has mentioned, a lot of these medications come with side effects. And particularly if you have other diseases and you're being managed with other medications for these diseases, there can sometimes be drug interactions between all of the drugs that these patients take.
DODICKSo not only do they have their baggage of side effects, but when they get mixed in with other medicines and when other people have other diseases that make them more sensitive to the effects -- side effects of these drugs, it becomes a real problem. You know, Diane, we did a study last year that showed that if -- with thousands of patients, that 85 percent of the patients who were started on a preventative medication for migraine, the classes that we use today, 85 percent have discontinued them by one year. So less than two in ten patients, if you start them on a medication, they'll actually still be on it at the end of the year. And that's probably because of a lack of effectiveness and, importantly, the side effects that are associated with them.
REHMWhat kinds of side effects, Dr. Ailani?
AILANISo, most commonly, many of these side effects -- many of the medications cause fatigue, drowsiness, sleepiness. And let's take a moment and realize, our migraine patients, most commonly, are in their 20s to 40s and they're women. They're productive, they're working, they're mothers. They've got young children at home. And the minute you tell them that they might not wake up when that child is crying in the middle -- this is just a non-acceptable thing. Weight gain, another very common side effect to many of the medications. Again, young women, and you tell them they're going to gain weight. Hair loss. Disruption in their period. Disruption in birth control because of side effects and potential interactions.
AILANIIt can lower blood pressure, especially if it's a blood pressure medicine. These are usually very active young women who are in the gym and...
REHMBut here's the question I have. How long have these drugs been out there, even knowing that this is what happens? People are going to gain weight, they're not going to sleep well, they're going to lose their hair. And yet we've continued to give them?
AILANIForever. I mean, these have been the treatments. I think that Dr. Goadsby and Dr. Dodick can tell you probably the original migraine preventive FDA-approved drug, propranolol, and -- has been around longer than I know. It's one of the original blood-pressure medicines that has been effective. It's been used in the world of migraine for decades, like I said.
REHM...success. And you're listening to "The Diane Rehm Show." Dr. Goadsby, that gets to the question about funding for migraine research. And that really, you know, has not been going on a great deal until you began your search.
GOADSBYOh, I don't think I've led the way in getting funding. I wish I had. Yeah, you're quite right. I mean, the National Institute of Health just developed a five-year plan for its research. And it's got some very interesting data in it. One of their data points shows that if you look at burden of disease in the United States compared to funding, migraine and headache disorders is the least well-funded in terms of burden compared to anything. Now, I'm not complaining about everyone else's funding. But it can't be right that tens of millions of Americans have this problem and the funding sits down the absolute bottom of the curve. And that's what slows things up.
GOADSBYYou asked why we've been using propranolol from the 1960s. You asked why we've been using a drug like valproate from the 1970s. The drugs, you know, these drugs are 40 years old. And the reason is there's been a real, I think, abrogation of responsibility. People haven't concentrated on the importance of researching a condition that is so common, and also something which is, you know, the sixth-commonest cause of disability in the world, WHO data. It's incredible.
REHMBut you've been talking primarily about NIH and research in the U.S.
GOADSBYWell, you're in Washington. I thought I'd (word?) .
REHMWhat about the research worldwide?
GOADSBYOh, well, no. The world is not doing much better than the NIH. The European Union, to give it it's credit, has funded research in the last decade. And I'm involved in a Euro head pain consortium where they're starting to fund research. And things are happening in a small -- in that small -- evolving in that small way. I guess we're living the change. And it's important that we take the opportunity of these new developments to build on that change. Because we can make a real difference with proper funding.
REHMYou're probably optimistic at this point, Dr. Ailani?
AILANIYes. I'm very optimistic. I tell my patients, I hope to not have a job in the next 10 to 15 years.
AILANIThat we're going to make this easy enough that you don't need somebody like me to sit there and help you out.
REHMHave you been impressed with the results you've gotten with those who are in the study?
AILANIWell, it's -- so it's too early to see those results. They're just entering the Phase III trials, which are these larger studies. You're not -- they're not going to see results, I'm not going to know what they're on, if they're getting real drugs...
REHMI see, or placebo.
AILANI...or not real drugs. Right.
AILANIWhich, in the world of pain, placebo is a very strong effect as well. If you think you're going to get something that's going to change your life, that could positively affect your disease state for a period of time.
REHMNow we have one caller who wants to know about menopausal migraines. Is there a connection there, Dr. Ailani?
AILANIOkay. There is a connection. There's been a recent article that was published just about a month or two back showing what we already know clinically, that as people go through change of life, as they go into menopause, that sometimes during that transition phase you will notice an increased frequency in the number of migraines. And then it can decrease as you fully transition into menopause.
REHMDr. Jessica Ailani, she's director of the MedStar Georgetown University Headache Center. Short break here and more of your calls when we come back.
REHMAnd welcome back as we talk about new research and new treatments coming along for migraines. Many listeners would like to hear how new drugs would have an impact on aura migraines specifically. Dr. Goadsby?
GOADSBYRight, so aura migraines, for those who don't have them, are a migraine with -- at the start, there's some neurological symptomatology, and what people would recognize would be flashing lights or loss of vision. It takes about half an hour to an hour. And then the headache comes along afterwards, and it occurs in about 25 to 30 percent of migraine sufferers. It can be very disturbing the first time it happens if you lose your vision. But it always -- it's important that it always comes back.
GOADSBYSo the preventive medicines that we've been talking about, the CGRP monoclonal antibodies, are effective from the phase two trials, as far as we can see, in both migraine with aura and migraine with aura.
GOADSBYSo the aura patients can look forward to having a preventive that will reduce the number of migraine with aura attacks they have.
REHMAll right, let's open the phones. Let's go to Laura in Silver Spring, Maryland. You're on the air.
LAURAYes, I'd like to ask if there has been more studies about environmental triggers, especially additives in food. I was a migraine sufferer since 1990, on and off, always seemed worse on a Sunday. I never really understood why until I realized that aspartame was a major trigger for me, and I tended to have Diet Coke more on the weekend. So I'd sit and spend my Sunday in a quiet room, hopefully with some medicine to help me out. Once I was able to figure out the aspartame link, I was able to get rid of most of migraines.
LAURAAnd then later in life, migraines started coming back. I was into soup-making, and I looked at my soup base, and I wrote down all the ingredients and all the ingredients in the rest of my cabinet and started eliminating them and adding them back, and it ended up being maltodextrin. So between those two items, I now have 90 percent less migraines. I don't have to pull over to the side of the road to throw up because I can't stop my life.
REHMGood for you, I must say. Dr. Dodick, any comment?
DODICKYeah, it's a very good question. I must say that it's been a difficult thing to study systematically in large populations of patients, triggers. While every patient will have triggers that are unique to them, it's been difficult to study in a population. Certainly dietary triggers appear to be important for some patients, aspartame, monosodium glutamate, caffeine, alcohol, a variety of them, but they're so unique to each individual that, you know, a lot of patients are put on what we call elimination diets. And it's sort of a blanket approach to the problem, which, you know, getting to the unique individual triggers, it sometimes takes a lot of effort, like the caller that just mentioned, to find out what actually in the diet can trigger their attacks.
DODICKAnd then for many patients, of course, you can go on these elimination diets where you're basically eating rice and water, and they still continue to have very frequent attacks. So it's -- patients are on the search for triggers, and we do the best we can to try to help them find those triggers, be they dietary or otherwise.
REHMAnd here's a tweet from Michael, Dr. Ailani, who says, are there lifestyle choices that reduce migraine symptoms?
AILANISo for many people, living a very regular lifestyle can be very helpful, trying to sleep the same time, wake the same time, trying to eat regular meals through the day, not skipping meals. Exercise has a lot of evidence to help the frequency and severity of migraines, of course not when you're actively having a migraine but on a regular basis, five times a week, 20 to 40 minutes of light to moderate walking, biking, swimming.
REHMWhat about meditation?
AILANIMeditation, yoga in particular has had a lot of successful studies showing its benefit in migraine prevention. Guided meditation, biofeedback, which is a form of relaxing with assistance, so you do a relaxation technique, and then you see if you've increased your body temperature, lowered your heart rate, and there are a lot of different tools to help with that, has been well-studied.
REHMAnd Dr. Goadsby, here's an email from Gene, who says, I've heard migraines are related to stroke. Migraine sufferers are at an increased risk for stroke. Have you been able to make this same connection?
GOADSBYThe problem with migraine and stroke relates only to patients who have migraine with aura. So the first thing to say is the big group, 70 percent who don't have aura that we talked about before, have no risk of stroke. They can make a cup of coffee at the point, (unintelligible) The risk is with migraine with aura. It's a small risk. It's about a doubling of risk. And it only occurs in women, and it only occurs until the age of 45. So it's a small -- it's a double, but it's a small, it's a small group to start with. So the risk...
REHMOkay, but how do you figure what's going on that's creating the increased risk of stroke with that aura?
GOADSBYOh, I think the risk really hangs around when the aura lasts too long, so-called prolonged, and goes for hours rather than 30 minutes or 60 minutes, in collaboration, you might say, with something else going on, so dehydration, hypertension, other complications added into the slowing of brain blood flow that happens with migraine aura. And if that all puts together and all happens for a prolonged period, then you can see a risk of stroke happening.
GOADSBYIt's very important that migraine patients, however, understand that that risk is pretty small. They shouldn't get unnecessarily worried about it.
REHMAll right, we'll go to Sodus, Michigan. Elizabeth, you're on the air.
ELIZABETHThank you for taking my call.
ELIZABETHI am a migraine sufferer. I am very fortunate. I have them very rarely, and I have medication that works. Two comments, the medication is ungodly expensive. Even with insurance, six pills cost me over $100. Right now I don't have insurance. It's probably going to be closer to I don't know what. I usually buy two pills without insurance for $100. If I have more than one headache a month, you can see the problem that creates.
ELIZABETHMy second comment is this last winter, I discovered I'm having other trigeminal nerve issues with my teeth. They're hurting, and there's nothing wrong with them. So this conversation is very interesting for me because I really believe there is a connection, like you're saying. Can we do something about the price of the drugs? Yeah, I know.
REHMYeah, exactly. Dr. Dodick, do you want to comment?
DODICKOh, I'd love to comment, Diane. You know, I think it's a larger issue that we face in this country with the price of drugs not just for migraine but for many other diseases that are being treated. It is an issue for many patients, and it's one that has to take on -- it's actually a big topic in this presidential campaign.
REHMOf course, of course.
DODICKOf course. So it is a big issue for all Americans, actually, no matter what disease they're being treated. Migraine is no different.
REHMNow what about her comment regarding her teeth, Dr. Ailani?
AILANISo it's not uncommon for patients with migraine to unfortunately be predisposed to other types of headache disorders. And there's a variety of types of headache disorders that could present with symptoms in the face, in and around the face. We have many patients who have syndromes like trigeminal neuralgia alongside with migraines, and they can have, like, very sharp, stabling pain in the cheek, in the teeth. They get their teeth checked, there's no cavities, there are no problems with the roots or the structure of their teeth, and it's really just the nerve becomes overactive for no particular reason.
REHMInteresting, and back to the insurance companies. Dr. Dodick, what about these new drugs and how extraordinarily expensive they might be?
DODICKWell, that remains to be seen, Diane. I mean, we've actually assembled a group, the American Migraine Foundation has assembled a group, with regulators and with insurance companies to talk about this very issue. Once -- if and when we're lucky enough to see these drugs come to market, how can we break down the barriers to access? These drugs are going to do nobody any good if patients can't access them either because they have to fail all these other medications we were talking about to get to them, or once they do get to them, they're so expensive that they can't afford them. So we have to come to grips with this, and it's going to take a concerted effort on the part of all stakeholders to make sure that when these drugs do come to market that they're accessible to the patients they're intended for.
REHMAnd here's a Facebook comment from Keisha about the new drugs. She says, I take triptan. If I don't take it at the very beginning, it won't work. I'm very nauseous with the migraine. The pill seems to make it worse. It's a struggle to keep the medicine in me for it to work. I've had doctors prescribe cocktails of medication in the past to address the nausea, pain and the underlying headache, but that's too many drugs to take. Will this new medicine address all of those issues in one dose, Dr. Goadsby?
GOADSBYYes would be the straightforward answer. The CGRP -- well, prevention of course will stop all the parts of the attack, and the CGRP and receptor antagonists themselves, the drugs that are also being developed, work on all the aspects of the attack. And as you say, for some patients the pain is awful, but the other things that are happening are awful, as well, and it's very important that we're mindful of treatments that improve all of these things, and these new medicines will.
REHMA question here from Jill. She says, any chance that the CGRP meds can be used for other neuro pain disorders in addition to migraine, for example cluster headaches. Dr. Goadsby?
GOADSBYOh, that's a very, very good question, and thank you for asking it. Yeah, there's a study started now looking at whether these CGRP monoclonal antibodies will work in cluster headaches. Cluster headaches more common in men, it's a rarer problem. The pain is just awful, awful, and there are -- there's a study running right now to answer that question, very exciting.
REHMWhat about things, alternatives like hypnotherapy, acupuncture, Dr. Ailani?
AILANISo I had mentioned earlier biofeedback, which is an alternative. It has been well-studied in migraine. Acupuncture has some evidence for efficacy, but the evidence is a little bit varies. There are some dietary supplements that have modest evidence for efficacy that aren't taking a drug on a daily basis, and like I also mentioned yoga, another alternative.
AILANIAnd then there's other things that are looked at, physical therapy for issues that are related to the neck that might help. If you improve neck and shoulder spasm, do you improve frequency of migraine? And that's not as well-studied, but it's something that can be done if somebody doesn't want to be on a medicine every day.
REHMAnd by the way, we've received so many questions from all of you. So we'll be answering more of them regarding migraines on our blog in the coming days. So watch for that. And you're listening to the Diane Rehm Show. All right, and to Concord, North Carolina, Jesse, you're on the air.
JESSEHi Diane, thank you for taking my call.
JESSEI've been a migraine sufferer since I was 10. I'm 26 now. I've been on pretty much every Triptan derivative you can think of and most recently Frova. They put me on what's preventative for migraine called Topamax. It's an anti-seizure medication that also works for this. My question is the side effects for it are pretty bad. It makes you cloudy-headed, can't taste carbonation. Every drink you ever taste tastes flat. The question is, what side effects are you seeing from these newer medications, if you've gotten that far to start making a list of that?
REHMNow Dr. Ailanni, earlier you and Dr. Goadsby and Dr. Dodick all indicated that the side effects, if they are going to be there, haven't shown up yet.
AILANIRight, well, most of the side effects in the studies are just -- it is an injection, so some site pain from the injectable, but there -- we're not really seeing cognitive effects, slowing, fatigue, altered taste, weight changes, and that's what's so exciting is not having side effects that are significant enough to stop taking the medicine.
REHMAnd then we have an email from Lea. What are your opinions on Botox therapy? My migraines, she says, are particularly caused by skeletal muscles issues. Dr. Dodick?
DODICKWell, as you know, as you may, botulinum toxin, onabotulinum toxin, otherwise known as Botox, is now FDA-approved for the treatment of chronic migraine. Chronic migraine represents a patient group that have more than 15 headache days per month, so more often than not they're experiencing migraine, and it's approved for that indication.
DODICKIt is helpful for quite a number of patients with chronic migraine in reducing the frequency, sometimes the severity and sometimes the duration of attacks. But unlike the callers or the person who emailed, the concept is that it reduces or relaxes skeletal muscle. But we actually know now that botulinum toxin, or Botox, is taken up by pain nerve endings and decreases the signaling along those pain nerve endings.
DODICKSo we used to think it would be helpful for tension headache or muscle contraction headache. It turns out not to be helpful for that at all. It turns out to be helpful for migraine presumably based on the fact that it's taken up by these pain nerve endings, something that we didn't know before.
REHMSo have you ever had a patient request Botox for headache?
AILANIWell sure. We actually do a lot of Botox for chronic migraine. It's very successful with very limited side effects, works very well. About 70 percent of our patients with chronic migraine who are receiving Botox have reduced frequency of migraine and are doing well. And like Dr. Dodick said, it's not because it's reducing muscle tension, but it's changing the way the nerve is communicating back to the brain and settling that whole cycling down. There's even...
REHMAnd how often are they given in order to reduce the impact?
AILANISo the injections are every 12 weeks, so every three months. The medicine stays in the system. The studies and what we see clinically suggest that it takes at least two rounds to start seeing a big effect. So in about six months' time, most patients will see a reduction in frequency and severity of headache.
REHMWell, a fascinating topic and one which an awful lot of people are clearly interested in. Thank you all so much. Dr. Jessica Ailani of MedStar Georgetown University, Dr. David Dodick of the Migraine Program at the Mayo Clinic in Tempe, Arizona, and by phone from London, Dr. Peter Goadsby, he is the co-author of recent papers on the latest drugs. Thank you all so much, and thanks for listening, all. I'm Diane Rehm.
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