Melissa Harris-Perry: I’m Melissa Harris-Perry, and you’re listening to The Takeaway. For a long time, severe headaches like migraines and cluster headaches have been under-researched by the scientific establishment, even though tens of millions in the US and globally suffer from this painful recurring distress. Far too often, the experiences of headache sufferers are dismissed or ignored both by doctors and by the people in their lives. Many of you shared with us how you were affected by headaches.
Mark: This is Mark Garrison from Dickson.
Latanya: My name is Latanya from Ossining, New York.
Amy: Amy in Northfield, Minnesota.
Neil: Hi, this is Neil from Snoqualmie. For me, it’s extreme light sensitivity that makes my eyes feel like they’re overheating and overexposed.
Amy: The fibular migraine hits, the waves of nausea are unbearable and they’re worsened by light and sound.
Latanya: It can feel like my head is in a fight from the neck. Sometimes I can muddle through, but most times it literally stopped me in my tracks.
Mark: I’ve had migraines for over 50 years, and I know my life would have been much different, daily attacks curtail my enjoyment of life and the search begins for new drugs and treatments.
Amy: I’m out of commission for hours and the next day I inevitably feel exhausted. It’s hard on my family.
Neil: Sound becomes too bright and light becomes too loud and nausea makes it impossible to enjoy. When I get a migraine, I’m forced to lie down in a dark room until it subsides. It robs me of anything else I was planning to do.
Latanya: I stay in bed with the curtains drawn and minimal electronics. The randomness is what is most disconcerting.
Melissa Harris-Perry: Thank you for being willing to share your difficult experiences with us. Luckily, we’re a bit closer to understanding the causes of, and cures for headaches. Thanks to recent breakthroughs in the science and treatment of migraines and cluster headaches. For more on this, I spoke with Tom Zeller Jr. the editor-in-chief of the digital science magazine, Undark. He’s also working on a book about headaches and Tom personally suffers from very severe headaches.
Tom Zeller Jr.: I get what are known as episodic cluster headaches. These are distinct from migraines, far less common. They are wildly, almost ridiculously painful as I wrote about in my article. They’re one-sided and they occur right behind my eyes and in my temple. It’s very typical. Most cluster headache sufferers have exactly the same symptoms, they come on without warning often several times a day. This continues for weeks or months at a time before disappearing completely. That’s where the name cluster comes from. They come in clusters throughout the year.
Although some people get them and they never go away and those are called chronic cluster headaches. They’ve also had other names like Horton’s headache, named after an old neurologist named Bayard Horton in the early 20th century, but also suicide headache, which I think speaks for itself.
Melissa Harris-Perry: As you talk about this experience of headaches, and we have some team members who suffer from migraines, and I know there’ll be a lot of listeners who also suffer from migraines. Give us a sense of the distinctions between the cluster headaches, which I think you’ve described so beautifully and honestly, painfully, and migraine headaches.
Tom Zeller Jr.: Migraines, clusters, and also tension-type headaches they fall into this larger category of what doctors will call primary headaches. These are headaches that aren’t attributable to some other underlying problem, some external cause like you had too much to drink the night before, too much stress, dehydration. They are biological processes onto themselves, such that we know. As I said, they come in those three flavors, migraine and clusters tend to be the ones you hear about the most. Although tension-type headaches are somewhat more common.
Those three categories break down into lots of different flavors. Migraine sufferers will know that some of them get an aura, which is a neurological disturbance, often visual that comes before the headache. Although some people have migraine without aura at all. My cluster headaches are episodic, so they go away for a certain time during the year, other people get chronic. There are lots of flavors, but the distinction is that this is not your ordinary headache. This is not a headache from drinking too much coffee. This is a neurological disorder with a biological origin that we’re only just starting to really understand.
Melissa Harris-Perry: On that final point, that we’re really only just starting to understand it, why don’t we know more about the causes, consequences, and cures?
Tom Zeller Jr.: That’s a great question, and I think there are lots of different answers. On the one hand, the brain, the head is a hard thing to study, particularly when we’re using them. It’s not just headaches, but a lot of what goes on inside the brain and inside our central nervous system is still rather mysterious even today. Just because it’s an incredibly complex system, hard to study. That said, there’s lots of evidence. I think it’s obvious that because women tend to disproportionately suffer from migraine headaches, I think it’s something like two to one more common in women than in men.
Clusters is the opposite, tends to happen more often in men than women although the data is showing that there may be some underdiagnosis in women too. The fact that women have these headaches more often and have had their own health healthcare issues disregarded by the medical establishment for many years, it’s not surprising that we don’t know as much about headaches maybe as we would have if say the opposite were true. If more men had been suffering from migraine headaches than women. I think that’s a fair thing to say, and almost certainly true.
I think it’s a combination of factors. It’s an invisible disease. If you don’t have headaches and someone you know does, you can’t see it? There’s no tissue damage to look at. There’s nothing broken. There’s nothing bleeding, even though the pain can be some of the worst imaginable. It’s invisible. It’s a very mysterious and very difficult thing to diagnose and to understand if you don’t actually have them yourself.
Melissa Harris-Perry: Although we can’t see headaches from the outside. If my daughter has a headache, I just have to take her word for it. She says, “I have a headache.” Her head hurts, but if I had her hooked up to a machine, if I was looking at an fMRI, if she was in some other diagnostic tool, as a physician or as a clinical researcher, would I be able to see the headache happening?
Tom Zeller Jr.: Yes, you could see physiological structures lighting up in that way. You wouldn’t obviously be able to see, as we can’t anywhere, see the pain, but you could certainly see structures firing within the brain. You could see, what is known as a cortical spreading depression, which we’ve been able to make very nice images of. This is this wave of depolarization that happens across the brain just before a migraine, the pain of a migraine headache, and they think it’s associated with the actual aura.
The thing that you are experiencing when you get the aura is this wave of depolarization that sweeps across the brain, and we have images of that. The answer is yes, you can see things happening, but it doesn’t tell us that much about why it’s happening or what triggers it, what processes are in play that create that, that cascade of events that causes the pain.
Melissa Harris-Perry: Talk to me about the new research, first on causes and then on cures. If the fMRI or whatever mystical magical machine might be that I was looking at can show me there’s pain happening but not the causes, what is research telling us about some of the likely underlying causes of headaches?
Tom Zeller Jr.: In terms of why they happen and why they happen particularly to some people and not others is something that’s still a mystery. There’s almost certainly some genetic factor at play, but that’s not been perfectly identified. It’s certainly true that people who have migraine headaches and cluster headaches, who don’t have anyone in their family that they know who suffers from these headaches. It’s not purely genetic that we know, it’s nothing environmental that we’ve been able to firmly identify.
If you think of cause as what is the sequence of physical events happening in the brain that end up causing pain, that I think we’re getting closer to understanding and that’s where this new research is fascinating to me. We know now that the trigeminal nerve inside the brain, inside the head, which enervates the face is definitely involved. It also provides nerves to the membranous tissue between the skull and the brain called the meninges and this is almost certainly what is the locus of the pain.
We understand that a signaling process goes awry between that trigeminal nerve and the meninges and the brain interprets that as tissue damage. You could think of it that way. The brain is thinking something is broken, something has been hurt, and so you feel pain. Now the new medications are actually able to say, “Okay, how can we start picking apart parts of that dance, parts of that sequence of events, and interrupt it?” That’s what these new CGRP drugs for instance are doing. The CGRP is a neuropeptide that’s issued by the trigeminal nerve that causes inflammation in the tissues of the meninges.
They reckon if we can stop that CGRP from either being issued in the first place or from being taken up by the neuroreceptors that they are targeted by, you could interrupt the pain cycle. It’s working for a lot of people. It’s the first drug that is specifically designed to prevent headaches from happening, and a lot of people are getting a lot of relief. The problem is that there are a lot of people who don’t.
We’re still missing something we’re still missing some universal, I don’t want to say cure, but we’re missing some fundamental element in the headache cycle that would work more or less for everyone.
Melissa Harris-Perry: Talk to me about medications. It’s surprising that on the one hand, there’s so much pain here, but you’ve also written that in some ways it’s the best time in history to have a headache.
Tom Zeller Jr.: When I say that, I think I’m referring to the blossoming of research that’s going on. I think that started only in the last 30 to 40 years with our increased understanding of these cerebral, these cranial structures that are involved in the sequence of pain generation. As we’ve come to understand that pharmacological approaches have sort of blossomed and diversified, it used to be that we would mostly treat it with triptan class of drugs.
Those do work really well, the problem is that they are designed to attack an individual headache. They’re not going to stop your headaches from coming. You can stop an individual headache, but not long after often hours after, you’re going to get another one. Those drugs can be toxic if you keep taking a lot of them and that’s been true of almost every drug. What’s really exciting about the CGRP drugs is that the side effect profile seems pretty good so far. It’s early days, but they seem to have few side effects and they do tend to work for a lot of people.
There are other non-drug treatments that are being experimented with now, like the vagus nerve stimulators and other sorts of nerve stimulators that you either hold in your hand and press against your vegas nerve in your neck, or that you attach to your head that will send electric impulses. That some people are finding relief from. Pharmaceutical companies are also exploring all kinds of new stuff that are in clinical trial now from psilocybin, which is the key ingredient in magic mushrooms, which you may know of. A lot of people find relief from this.
There’s studies going on at Yale now that they’re looking into the effects of psilocybin as a treatment for headache. Vitamin D therapies, there’s all kinds of stuff in the mix. That’s what I mean when I say it’s a great time to have a headache. It’s miserable to have a headache, but I don’t think that there’s been this sort of activity in the research field as it relates to headaches in a long, long time, if ever.
Melissa Harris-Perry: Help me to understand how all of us, whether we are working with folks who have regular headaches, whether we’re parenting them, whether we are in intimate relationships of any kind, how can we be better supporters of those who are experiencing the agony of headaches while we’re waiting for the research to get us to a new point?
Tom Zeller Jr.: That is the million-dollar question and I think it’s something I thank you as a headache sufferer for asking it. I think a lot of listeners who have headaches would also thank you because it’s one that’s not often asked and that’s partly because we all have headaches but that’s not migraine and that’s not cluster. They are in many ways, unfortunately, tied to a word headache that is so quotidian and just mundane that it’s easy for us culturally and even understandable for people to write it off. Or also think, “Oh, sure. I get headaches. I know what you’re going through.”
The truth is that if you don’t have this, you don’t know what’s it’s like and you would do well to think of it as a real disorder. This person is experiencing a tremendous amount of pain. If they tell you that they have migraines or they tell you that they have clusters, it’d be better off to regard that as someone telling you that they have a true neurological disorder that they don’t have control over. That it exposes them to an amount of pain that you probably don’t personally know, and it can be incredibly debilitating.
I think just being able to understand that distinction and recognize that if someone says they really need to go into a dark room and lay down and battle this demon, believe that it’s real, believe that that battle is something you don’t want to go through.
Melissa Harris-Perry: I so appreciate that. Tom Zeller Jr. is the editor-in-chief of the digital science magazine Undark. Tom, thanks for joining us.
Tom Zeller Jr.: Thanks for having me, Melissa.
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