In Good Health: Why Headaches Are Misunderstood

0:08Headaches are one of the most common neurological conditions in the world. According to the World Health Organization, three billion people worldwide suffer from headache disorders. They're also one of the most debilitating, mysterious, and misunderstood. One in six Americans suffers from headaches that are so severe, they limit their ability to work, sleep, or otherwise function. That includes some of you. Here's Hannah. I suffer from chronic headaches and chronic facial pain. It's constant. I never get a break. There's no normal. It has become my new normal after five years. I wake up with pain in my face and at the top of my head.

0:48And then I have flare-ups where things get to a point where I can't even see a TV. Can't move. It's miserable. I've seen so many physicians, different specialties. And I get temporary relief, but nothing permanent. It's very exhausting. It's very isolating. You feel like nobody understands you. and it's sometimes just very defeating. But then you have to keep going with your day. I still have to be a mom and a wife. So just try to remember that I'm stronger than I think. Hannah, thanks for that call. Today, we discuss headaches as part of our series, In Good Health. That's when we talk about the health issues that most affect us and put your questions to the experts.

1:28I'm Jen White. You're listening to the 1A Podcast. Back with more in just a moment. Stay with us.

1:38Let's meet our panel. With us from Missoula, Montana is Tom Zeller, Jr. He's the author of The Headache, The Science of a Most Confounding Affliction and a Search for Relief. He's also the editor-in-chief of the digital science magazine, Undark. Tom, welcome to the program. Hi, Jen. Thanks for having me. And joining us from Scottsdale, Arizona is Dr. Amal Starling, a headache neurologist at Mayo Clinic. Dr. Starling, welcome. Thank you so much for having me. I'm really excited to have this great conversation about something that's not often talked about, but definitely relevant. Well, we want to hear from you too.

2:12If you suffer from severe headaches, tell us about it. How do you find relief? Email us at 1a at wamu.org. And a quick note, our experts are not a replacement for seeing your own doctor, and they cannot give personal medical advice. So make sure that you still consult with your doctor. Now, Tom, you've dealt with cluster headaches for decades. Describe what that's like for you. uh sure yeah cluster headaches is probably less familiar to to listeners than uh other disorders like migraine uh although the physiology behind the two probably have some similarities uh the pain of a cluster headache is hard to describe uh it's incredibly intense i tend to describe it as akin at least in intensity to having your hand on a hot burner but not being able to take it off for about two hours.

3:02And that's barring any sort of intervention that might stop the headache. So I get these periodically throughout the year. They come in clusters, hence the name. So you might get attacked with these for, you know, three or four times a day for two, one or two months out of the year, and then they go away. But they're always certain to come back. No one knows why, which is part of the mystery of the book and why it was so interesting to explore. In terms of its impact on my life, well, it's hard to say because this is the life that I live. Things have been different. A lot of things that I heard from a lot of patients that I interviewed during the research for the book was just their own questioning of what life might be like had they not had this drag on it.

3:50I hope that answers your question. Yeah, yeah. Yeah. I mean, as someone who suffered from migraines as a child and it was a struggle because there were a lot of limits on what we could actually use to treat it, it is difficult to explain the sensation and also how you function with it, how it impacts your life because it's just your reality. Dr. Starling, when we talk about cluster headaches or migraine, They're part of a broader category of primary headache disorders. What are the different types of chronic head pain people suffer from, and how do they differ from just a common headache? Yeah, that's a great question.

4:32And I think one of the reasons that both you and Tom have mentioned it's hard to describe it to others is because, like you said, having a headache is a very, very common symptom that many people say, oh, yeah, I have a headache as well. But I think in those situations, my patients with cluster are like, no, no, no. This is a very different headache than what most people experience. And even my patients with migraine, which is more common, will say, no, no, no. This is not just a regular headache. There are so many other symptoms that are associated with it. There are many different types of headache disorders.

5:09And headache is only one symptom of all the different symptoms that are associated with a headache disorder. So I like to compare the word headache to fever, right? There are many different causes of fever. Just coming in and saying I have a fever isn't a diagnosis. That's a symptom. And that's the same thing with headache disorders. The head pain is just one symptom. Now, the most common headache disorder is actually tension-type headache, which is mild to moderate in intensity and typically doesn't really impair function for the majority of individuals. But the most common disabling headache disorder is migraine.

5:48And head pain is only one symptom that's associated with migraine. In fact, I have patients who have migraine who have very minimal headache or maybe even no headache. But there's other symptoms that are associated with that. Migraine is what we call a sensory processing disorder. And pain is only one of the sensations that's abnormally processed. The other things are light, sound, smell, motion. There's nausea. There's vomiting. and it really results in a lot of impairment and function even beyond the pain itself. We got this email from Amber who says, My husband suffers with cluster headaches.

6:25It's quite frightening as his face usually droops and it looks like he's having a stroke. To ward them off, he takes daily supplements of taurine and melatonin. I learned this from an online support group called Cluster Busters. If he feels one coming on, he immediately chugs a Red Bull. The combo of caffeine and taurine is usually enough to knock the headache back down. Bags of frozen peas held to his head also help. Over-the-counter painkillers didn't help at all. I wish the medical community had more to offer him for relief and prevention, as this condition seems to be a painful and torturous mystery.

6:59Tom, you write that people with severe headaches too often suffer in silence, while the rest of society tends to kind of brush them off. What's the disconnect between the common view of headaches and the lived reality? Yeah. Well, I mean, I think we sort of touched on it a bit. And it's the idea that we have this unfortunate word called headache, which does double duty as sort of, you know, a cultural descriptor of a mere annoyance. You know, your taxes are a headache. Waiting in traffic is a headache. And it's also the term used to describe some primary disorders that really can be very debilitating.

7:35So I think it's hard and maybe even understandable for the general population to have a disconnect and not fully understand that it's not just a headache, which is a mantra that you will hear often enough among the headache community. So I think that's part of it. I also think, and Amal, you can correct me on this, but I think it's fair to say that the fact that migraine affects disproportionately women by a ratio of probably three to one also plays a role. It would not be revelatory for me to say that women's health in general has gotten short shrift over the decades, over the centuries, in fact, to the detriment of us all.

8:20And the fact that they present more often with migraine, I think, plays a role in that. Does that make sense to you, Amal? Oh, 100 % agree. I mean, I think the stereotypical picture of a woman lying in a corner with their head in their hands, trying to get out of housework, childcare, and outside of the homework is a common misconception that people have. And even amongst my own peers, you know, there's this idea of a person with migraine complaining and being this hysterical woman rather than, you know, the true fact that, Tom, you and I know that people with migraine and other headache disorders are true warriors.

9:03And they really are the strongest people that I know. They are so inspiring to me and the reason that I come into work every day and do what I do. Well, Dr. Starling, what does that disconnect, though, mean for not just treatment, but research into the underlying causes of headache disorders? Yeah. I mean, if something is not felt to be important, then it is not important to fund. And so it happens because there is this misconception of how important this may be. But then when there is a reduced amount of funding from the top-down approach from major funding sources like the federal government and the National Institute of Health, it also sends the message to scientists and physicians that, you know, we're going to just give a sprinkle of funding for this very prevalent, highly disabling disorder, which means it's really not that important, right?

10:00And so there is an effect of stigma on funding, but then the decrease in the amount of funding also further adds to that stigma of how migraine and other headache disorders are not that important. So don't worry about trying to study them. Tom, give us some insight into your experience trying to get treatment for and better understand what leads to your cluster headaches. Sure. So mine began fairly typically for cluster headache in my 20s. And initially, it was difficult to get a diagnosis. It was extremely difficult to get in and see an actual neurologist. The waiting lists were quite long. So like many patients, you're dealing with your primary care physician, many of whom may or may not know anything about headaches.

10:57I think Amal can testify that in medical school, headache does not really get a lot of time or attention. So a typical doctor probably doesn't know that much about headache disorders at all. And it certainly was the case in the 1990s for me when I went to my first doctor and said, this incredible pain is happening in my head, what might it be? I was lucky in that he was eventually sort of receptive to me bringing in literature because I managed to self-diagnose and just it's very easy. A cluster headache is very easy to diagnose. The symptoms are so clear and so telltale that if a doctor is willing to pay attention for a minute, they can sort of see that this is what they're dealing with.

11:42At the time, however, and all the way up through, I guess, 2018, there weren't a lot of medications available to treat cluster headache or migraine that were actually designed for those disorders. I mean, in almost all cases and for most of history, you would be prescribed a medication that had been designed for some other disorder, but that seemed in some cases anecdotally to have an effect on a migraine or a cluster. So you might get a battery of beta blockers or anti-epileptics or an antidepressant or steroids. and the one thing that did actually have some effect and some help and has helped a lot of people is a family of drugs called the triptans which came out right around that time and they were very, very good for a lot of people, not everyone but very, very good at aborting a headache, an individual headache so if I had one coming on and I took it quickly enough I could get rid of that headache The downside of the triptans is that you ought not take them repeatedly and often because you'll have a variety of potential side effects and also can get trapped into this cycle where it's sort of creating rebound headaches.

12:59Dr. Starling, how much do we know about what causes severe headaches or why certain people get them? You know, when we think about different disease states in the body, we think that they are either structural or they could be abnormal function. Things that have abnormal structure we can see on an MRI of the brain. Migraine, cluster headache, and many of these primary headache disorders, they are abnormal function in the setting of normal structure. So how frustrating can it be for people to have this disabling condition, migraine or cluster headache, when they're so disabled? However, they go in and they do testing and there's no objective biomarker.

13:43There's no lab test. There's no imaging study that gives them the answer. And often they're told by physicians, your brain looks great. I'm not sure what's wrong with you. And so because this is a clinical diagnosis based on the signs and the symptoms that people are reporting. And then you have to trust people and you have to believe them. And there's not an objective biomarker. Diagnosis can sometimes be very challenging. Now, we know a good amount about migraine and cluster headache, although there is quite a bit that is still unknown because of a decrease in research funding. However, what we do know, it's abnormal function of the nerves and the parts of the brain that are responsible for sensory processing, primarily pain and sensation involving the head and the face.

14:33We got this email from Kit who says, I'm 78 and never have headaches, but when younger, in my 20s and 30s, I had headaches maybe once a week. Is aging out of headaches normal or am I an outlier? Dr. Sterling? Yeah, you know, I think that many of the listeners have brought up great points that everyone has these different nuances to their headache disorder. And that's because migraine, cluster headache, and other primary headache disorders often have a genetic underpinning. But it's not one gene, it's multiple genes. Hundreds of genes, hundreds of different genetic mutations. So everyone's migraine disease is a little bit different.

15:11What may be happening in the prior listener's case is that there's a hormonal component to that individual's headache disorder or their migraine. So when they were going through their hormonal cycles, they may have been more prone or vulnerable to headache attacks or migraine attacks. However, once they may have reached menopause, where there is less hormonal fluctuations, for some women, there may be a decrease in migraine attacks that occur. Let's take a quick pause here. We'll be back with more of the conversation in just a moment.

15:46Let's get back to the conversation. Some of you shared your experiences with headaches and how you found relief. My name is Ashley. I'm calling from Tallahassee, Florida. I've been a migraine sufferer for about 10 years now. Recently, after not being able to get any help with medical interventions or answers from my blood work, I started seeing a dietician to see if dietary changes would help with my pain. Thankfully, within the first week of tracking my food, my dietician suggested that I up my protein intake, and that almost immediately cured me of my migraines. I've had maybe one in the last six months, whereas previously they'd be almost daily.

16:18I know increasing protein isn't going to solve everybody's migraine issue, but I'm glad I didn't give up on myself and I'm glad I recognize that I deserve to enjoy my life and be pain-free. I hope anybody hearing this who's also suffering from migraines keeps trying to find answers. You deserve to be pain-free. You deserve to be happy and not be suffering. Ashley, thanks for that message. We also heard from Jay who emails, I've been dealing with headaches for decades. In my early 20s when I mistakenly believed I was indestructible, I volunteered to jump out of planes for the army. That decision caused a lot of damage and pain to my body.

16:51I spent eight months in Afghanistan at the beginning of the war in 2003. These events contributed to terrible migraines. Doctors at the VA prescribed medication, but that approach has not worked. What has worked is dry needling. My physical therapist performs this treatment once a week, targeting different parts of my body. The process is painful, but it makes the pain manageable and allows me to function day to day. And dry needling is a process. It's not acupuncture. The needles go a little deeper than acupuncture actually into the muscle. And I think the needles used are larger. But what we're hearing, Dr.

17:25Starling, from so many people are specific things that help them treat their severe headaches or migraine. And it gets to this question about as part of the challenge here, the fact that what works for people is so specific. The same things don't work for every person. Yes, that is so true. And that is definitely one of the challenges in diagnosis as well as treatment is that everyone's migraine is a little bit different in the way that it presents, in what symptoms they may have, in what things may be specific triggers for those specific individuals. And then treatment. Treatment response is highly variable from one individual to another.

18:08And even in the medications that we have available that have been studied in randomized controlled trials, I always say that if you take a bird's eye view of all the different treatment options that we have, that all of the treatment options work in about 50 % of individuals. So the conversation I have with the patient that's sitting in front of me is this works in about 50 to 60 % of individuals. The question is, which 50 % are you going to fall in? So what's hard is for patients, it is a bit of a trial and error process to find the medication that works for them. So it's a journey to find what is going to be the optimal treatment regimen for them.

18:47I love that many of your listeners, they have not given up on themselves. And I completely agree with that sentiment that people deserve to live without disabling headache attacks. And so keep continuing to work with healthcare providers to find the answer that works for you. Tom, you tried psychedelic treatment for your headaches, and this is something researchers are studying. What effect did it have on you? It was variable. There are two approaches that are sort of coming from the ground up. These come from forums online where headache patients have gotten together and shared remedies, and psychedelics is one key one for cluster headache patients.

19:29I found I was not a major user of psychedelics in my life, but I was willing to try anything. And so I obtained some mushroom from some friends. And I treated my headaches in two different ways. I microdosed with it, which means you just take enough to be sort of sub-hallucinogenic. And it did seem to sort of prevent a headache that felt like it was coming on from happening. I also explored the key remedy that's being studied now, I think, at Harvard and Yale and some other institutions of taking a very large dose at the outset of a headache cycle. And in a lot of people, it can sort of stop that process from happening.

20:20It did not work for me. I got very, very high. But I had headaches the next day. Well, I want to talk about another potential solution. the 2018 introduction of CGRP blockers marked a turning point in treatment. And this is the first new class of drugs designed specifically for migraine and cluster headaches. And that's after decades of people relying on medications, as you said, that were really meant to treat other things. So, Tom, walk us through what are CGRP blockers and what help do they offer? Sure. So CGRP is a neuropeptide. It delivers signals for all kinds of things in the body, but we're pretty sure that pain is one of them.

21:00And this new line of medications, which were decades in the making, I should say, are designed either to prevent the expression of CGRP or to block the receptor from taking up that messenger molecule. And they've sort of revolutionized headache treatment in a way. They work for a lot of patients, and I think that Amal could probably testify to this more than I can, but all the researchers I spoke with said that, you know, the efficacy rate is quite good and for some people it's almost miraculous. So people who have had migraine headaches their whole life can sometimes see an absolute sea change overnight.

21:44They call these the super responders. and they have the genetics to respond to this medication in a way that's really quite profound. Now, it doesn't work for everyone, but I think that the most promising thing is that it's added a level of sophistication to the science of studying these diseases and scientists are now hard at work trying to find other neurotransmitters that may be even more consequential. Dr. Starling, I'd love to hear from you as well. Yeah, so these CGRP-targeted medications, I think one of the main reasons why it was revolutionary is because it is the first class of preventive treatment options that were disease-specific.

22:27They were designed based on what we know was happening in the migraine brain for some individuals at least. And so just the advent of now having medications that are disease-specific and mechanism-based is huge. CGRP is one of those mechanisms that we're targeting. But as Tom mentioned, we're targeting other mechanisms now, another one called pay cap, right? Another one in oxytocin and the hypothalamus. And so the concept of finding a molecule that is involved in migraine or cluster headache or other primary headache disorders, and then designing medications that will then reduce the activity of that system and of that pathway is what is most unique about it.

23:11And it is true that with these CGRP-targeted treatment options, that for many individuals, they've had higher rates of efficacy than the prior medications. But also, the really important piece of it is excellent tolerability. Because when we were using medications that were designed for other disease states that were nonspecific for migraine, not only did they not work as well, they also had a lot of other side effects because they were not designed for migraine. So the great efficacy results, but also the incredible tolerability and the reduced amount of side effects that people were having are the two really amazing things about this class of medications.

23:53We heard from Sarah in Pittsburgh, who says, My migraines took forever to diagnose because my worst symptoms are vertigo and nausea that I describe as feeling drunk and hungover at the same time. I was evaluated for multiple sclerosis, Menyer's disease, and a vertigo disorder before finally coming to the migraine diagnosis. It's challenging when people ask how bad my headache is, and I can't explain that the headache isn't that bad, but the migraine is awful. And Miranda emailed, when I was a younger adult, I would suffer from headaches, some migraines, and I would also get very intense moments of vertigo.

24:28It would feel like my whole world turned sideways. Could you discuss how vertigo plays into different headache conditions? Dr. Starling? Yes. So as I mentioned previously, migraine is not just about head pain. It's the abnormal processing of many sensations around you. And so the light sensitivity, the sound sensitivity, the motion sensitivity are very common and sometimes even the most disabling symptom for a patient. So as these listeners was mentioning, for them, it is that vertigo or that motion sensitivity and sometimes even associated with nausea, which are the most prominent symptoms. And especially when headache or head pain is not the most prominent symptom, diagnosis can be very, very challenging.

25:13Patients are sent to ENTs and gastroenterologists and then eventually a psychiatrist because obviously if you can't figure out what the diagnosis is, it must be psychiatric. And so I love when these patients do finally come to me as a headache specialist because I can validate that their symptoms do meet a true medical diagnosis and that we have treatment options that can be effective for these individuals. Well, that brings me to Jane who says, I've been lying in bed since 7 a.m. due to a chronic daily migraine. I've been in constant pain since 1995, migraines for 60 years since I was nine years old, many tests and procedures.

25:52I have an occipital nerve stimulator and a rod through my neck. Nothing helps. I'm alone most of the time, just too much pain. I think the next step is madness. I can see how people, mostly women, ended up in asylums. I mean, Dr. Starling, how available is the kind of special treatment you provide? How accessible is it to the general public? Yeah. So it is not very accessible. You know, headache specialists, there are very few of us. There's actually only 848 board-certified headache specialists as of the number yesterday that are available. There are neurologists, but even finding a neurologist can be challenging.

26:37And given that this is something that is so common, headache disorders, specifically migraine, is so common, it really needs to be addressed by people who are the frontline responders in care. That means those primary care providers. But we need to empower primary care providers with the education to be able to diagnose and then appropriately treat migraine. And that is something that the American Headache Society, professional society that I'm very closely connected with and serve on the board for, that we are trying to make sure that we provide and empower primary care providers, pediatricians, general practitioners, OBGYNs, who often will see women for their primary care to empower them with the education and knowledge that they can diagnose and treat many of these patients.

27:26We got this email from Kate who says, I have suffered from migraine since I was a child. I relate to the difficulty with primary care doctors. My doctor seems uninterested in finding a root cause and just keeps prescribing stronger medications that always fail eventually. How can I talk to my doctor more about prevention and understanding the condition or should I try to see a specialist? And Tom, I want to come to you first on this because you said you brought literature to your doctor and you self-diagnosed. Any advice for Kate? I would advise her, you know, maybe seek out another doctor. If your doctor isn't listening to you anymore, I mean, that's one sure sign that you probably have the wrong doc.