Exploring the Reality of Cluster Headaches with Tom Zeller Jr.: Part Two

Episode Transcript

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Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters and this is the Brain and Life Podcast.

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Dr. Peters:
Welcome back, Brain and Life audience. We have another episode with you with Tom Zeller, Jr. and Dr. Stephanie Nahas discussing cluster headaches. We felt that this needed a larger platform to really extend it over two episodes because there is so much attention towards migraines and other types of headaches. And clusters are very common, but can be very excruciating and we want to make sure that people know about this phenomenon. And in the second episode we're going to discuss more about the treatments, also the stigma and awareness about this disease, and also how you can be your own advocate. There's actually a group called Clusterbusters, which we learned about from Dr. Stephanie Nahas. So we can't wait to share more with you today.

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Dr. Peters:
I want to welcome back Tom Zeller, co-founder and editor of Undark, and author of his first book, The Headache: The Science of a Most Confounding Affliction and a Search for Relief. You, of course, have written about scientific invention and scientific discovery and you mentioned the CGRP, which is calcitonin gene-related peptide. It's a neuropeptide and there's these special inhibitors that are now being used for both migraine and for cluster headache. Do you write about that in the book? Because that really was a changing scientific finding in the world of headache that I guess now you see people on TV constantly, different celebrities saying, "I have migraine," "I have headaches," "I have this," and I think it is opening up more and having more awareness. What are your thoughts?

Tom Zeller Jr.:
Yeah. I agree. We're in a period of great flowering and a lot of it has to do with those CGRP medications, which first I think got approved in 2018, so not that long ago. And I do trace the evolution in the book of how we got there and I speak to a lot of the scientists who were involved in taking us to that place. So I do trace that. I trace the evolution of the CGRPs and how we got there. And I talk to a lot of docs who are headache specialists, some of whom say it took too long to get there in a lot of ways because there were a lot of blind alleys that science went down.
There was this sense that it had to be sort of a vascular disease, which we're starting to learn maybe isn't entirely true, that it's much more sort of multifactorial and that a lot of it is to do with the central nervous system, which in some ways you would think would've been obvious given the one-sided nature of the thing. Anytime you have something happening on one side of the body, you surely are thinking central nervous system at some point, but for whatever reason that sort of got overlooked for a long time. But we are, as you say, in a period where the discovery of this neuropeptide is playing a key role in headache pathogenesis has just been sort of revolutionary.
I think one note of caution I would add is that A, we don't know the long-term implications of suppressing CGRP so regularly. So as you said, we're in a moment of great excitement with the CGRP drugs, which only came out in 2018, and so are fairly new. They are revolutionary in their own way. And I spoke to a lot of scientists who were involved in various ways in seeing the science get to that place. In fact, four of them I think won the Brain Prize in Neuroscience back in 2021 maybe, I guess. It's Peter Goadsby and others.

Dr. Peters:
Yeah.

Tom Zeller Jr.:
So a lot of fanfare and the CGRP meds, such that I've been able to tell, have been really helpful for a lot of people, not everyone, which probably you've found this in your practice too. I mean, I'd be curious. Does CGRP sort of answer the prayers of all your patients or just some?

Dr. Peters:
I would say just some. And again, cluster headaches are rare.

Tom Zeller Jr.:
Yeah.

Dr. Peters:
If somebody's having a cluster headache, they're saying that they usually see the headache experts so I send them to them. But I have several patients that have benefited from migraines. I do think it's such an intriguing chemical and, again, I think your title is very helpful. In my line of work as a neuro-oncologist, we have a type of headache or facial pain that remains maybe a more confounding affliction, maybe just because I see it in my patients, where they develop damage to a part of their brain called the cavernous sinus, which is very deep, deep inside the brain, contains a lot of nerves. So they have a lot of what we call nerve pain and I think that that really needs to be explored more.

Tom Zeller Jr.:
Is there anything that treats that?

Dr. Peters:
They can do some drugs. There's a drug called gabapentin you may have heard of that does that. There's been pregabalin. For some patients, they can get some relief. Sometimes there can be surgical options for patients, but invariably it can be a big, big, big challenge.

Tom Zeller Jr.:
Yeah.

Dr. Peters:
I'm waiting for people to have more exciting science on it.

Tom Zeller Jr.:
Yeah. And I think that that's still true with headache medicine too. I probably went into it a bit naive, but I sort of learned along the way that a drug that helps half the people who take it is kind of a grand slam, which for the patient is sort of a roll of the dice, but for drug development it's pretty good. If you're helping 60% of the people, it's sort of miraculous. But if you're starting to creep up to 70%, it's like, "My god, this never happens." So the fact that the CGRP meds ... I mean, the way it was described to me by a lot of the docs that I talked to was that across the population of headache sufferers, it helps maybe 50%, 60%, a lot like other drugs.
But among those for whom it does work, there's this group of super responders for whom it really works. It's like awakenings. They have migraine their entire life and then suddenly they can go months without a migraine and it's transformed their lives. So for the people for whom it does work, it really has proved pretty miraculous. The one thing that I'm seeing and hearing from a lot of neurologists that I talk to is that those who have been on it longest are starting to see it not work as well or the efficacy starts to wane. I don't know if you're seeing the same thing in your ...

Dr. Peters:
I haven't seen that necessarily and I guess I haven't seen any of the super responders either. I've seen sort of the middle of the road like, "It's working, but I still have some migraine."

Tom Zeller Jr.:
Kind of works.

Dr. Peters:
And this is where I think lifestyle really comes in too. And focusing on my patients, I think that a lot of my headache patients have definite triggers really. If they're having problems with their sleep or if they consume too much alcohol or if they are really stressed out or if they have an infection, the migraine will come out. So if we could do anything to sort of fix those triggers, a lot of times that helps. Now do you have any particular triggers with cluster headaches?

Tom Zeller Jr.:
No, and it's not very typical to have triggers for clusters. I mean, the cluster will come when it wants to come. And when it starts, as you know if you have any patients, it's going to stay with you for about two months and you're going to be knocked on the floor every few hours by these things every day for a couple months, and then they will magically go. You'll be cured. You'll be completely cured not by anything any doctor does, but by whatever it is in there that's turning it on and off. It was actually Peter Goadsby who said to me in some ways, he feels like cluster might be the disorder where you get to a cure faster because it turns itself on and off. And if you could find that, if you could find that switch, you could probably get to a cure faster. Now I don't think anybody's actually very close to finding that switch.
But the one thing I'll say with regard to triggers is that when you're in a bout, in those couple of months where the headaches are coming every day, a sip of alcohol will trigger a headache in almost every patient, I think. It's just guaranteed to happen. So you quickly become a teetotaler during the times when you're having cluster headaches. But aside from that, no. Nothing brings on an attack. Nothing that I know of brings on a period of cluster headaches either. Possibly seasonally, but it was never perfectly true so that you could hang your hat on it and feel like it was predictable. So mine seemed to come in the fall-ish and spring, but then I would get a surprise bout in the summer or the winter.
I think that's sort of the road for a lot of headache patients is sort of a lack of control and a lack of perfect ... Even with triggers in migraine patients. I talked to a lot of patients who said, "Yes, I think I have some triggers, but it's never perfect and I can sometimes have that glass of red wine and nothing happens. And I'll eat chocolate and then suddenly be thrown on the floor." So it's very vexing. I mean, it's incredibly frustrating and the lack of predictability I think is part of the menace of these disorders is you just never know truly when it's going to come.

Dr. Peters:
And that brings about sort of a challenge of how to study them clinically and scientifically because of the unpredictability. You could just have one. And I did speak to a scientist, Ian Lipkin, who does work in the chronic fatigue space, and people can have bouts of chronic fatigue that just all of a sudden come out of nowhere. In one of the studies that they were doing which I thought was fascinating, and maybe this could be sort of retooled for cluster headache, is when somebody is having a bout, the study is designed like as soon as they have a start, somebody goes to their house, draws their blood ... Okay?

Tom Zeller Jr.:
Oh, wow.

Dr. Peters:
And then looks at are there some signatures there? Because we know so much more. And the blood-brain barriers, while there's some blocking, there has to be some probability. And then finally, to then look at it when it stops, as soon as it stops, you press a button, somebody comes to your house, draws your blood. It would be an expensive study, but I think that that could potentially get at some etiology.

Tom Zeller Jr.:
I think that in some ways, that's exactly how we got to the CGRP meds because Peter Goadsby and a few other researchers originally were doing blood draws from cats initially in experimental from the jugular and looking for certain neurochemical signatures. And then they did it in human patients who were in the throes of migraine and they drew blood and they noticed that this neuropeptide was really elevated when people were having these attacks. And that's essentially how we got to the idea of what if we suppress or inhibit either the expression of CGRP or block its receptor? What would that do? And so that's what you're describing is exactly how we got to the CGRP myths. I don't think I could volunteer in the midst of a cluster headache because you couldn't get anywhere near me, but I salute any migraine or other headache patient who's able to sit for that blood draw while in the throes of the pain.

Dr. Peters:
It's a lot getting that blood draw from the cat so lots of claws.

Tom Zeller Jr.:
I would imagine so. Yes. Yes.

Dr. Peters:
Lots of claws. It's not a good idea.

Tom Zeller Jr.:
[inaudible 00:12:53]

Dr. Peters:
I can just think about my three cats trying to get in right now and they'd be like, "No." I can see it. I can see it.

Tom Zeller Jr.:
That's not happening. Yeah.

Dr. Peters:
Yeah. So you mentioned when you're having an attack, you're miserable. You've mentioned before that it's sort of like this is not something you wanted to tell your coworkers, but eventually your loved ones are going to know about this and are going to have to be really a partner or on the same journey through these headaches. What have they done or what have you done to support each other living through these cluster headaches?

Tom Zeller Jr.:
The answer to that question is going to vary between a cluster patient and a migraine patient because when I'm about to have an attack, A, it's not something that I want any loved one to see because it is kind of grotesque. I mean, I don't know if you've actually ever seen someone in the throes of a cluster headache while it's happening, but it's a level of pain ... I mean, it's described as a suicide headache in the literature, right? It's described as possibly the most severe pain that a human can feel. Who knows what that means? You can't really measure it. But I cannot sit still. I am on the floor. There's spit coming out of my nose and mouth, I'm banging my head on things. It's a bit like a seizure. I mean, it's an emergency. And so when that's happening to me, I just withdraw. I go to another room. I ride it out. Or if I have the injection, which I almost always do, I take it and within 10 minutes I'm back to normal.
I can't hide it from my partner and I couldn't hide it from partners in previous eras of my life, but I also was able to sort of steer clear of them when it was going on. I think it's a much more different equation for a migraine patient. I mean, I talked to some of the most brave mostly women to be honest because migraine mostly affects women who they're going through such torturous times trying to maintain a job, a family, to be a parent, to be present for their kids, to be a partner to their husbands or wives while being completely dysfunctional and locked in a room, unable to bear light and sound and in the throes of terrible pain. I mean, in some ways I honestly think that that's a much harder gambit, a much harder thing to navigate and I admire them. And I think that all of them do have to find that sort of support system because short of that, it's a very bleak place to be.

Dr. Peters:
Yeah.

Tom Zeller Jr.:
And I'll say in my case, yeah, I've had great support from my wife, but also I think she understands that it's the kind of thing that I sort of keep at arm's length.

Dr. Peters:
Well, that's good. I'm glad that she supports you. And back to your book, The Headache: The Science of the Most Confounding Affliction and a Search for Relief. What do you hope that it sort of gives to, I guess, migraine sufferers or cluster headache sufferers or any headache sufferer or anybody you that's curious?

Tom Zeller Jr.:
Yeah. I mean, I hope it does a few things. I mean, if it makes any headache patient feel less alone, just hearing all the voices, not just mine, but all the voices of patients that are in that book, if you can feel less alone on this journey then it will have done at least a great deal of what I hoped it would do. I hope it also opens the eyes to people who know someone with a headache disorder because it's often either we try to hide it or we don't like to talk about it too much, but I tried to write it in a way that it's engaging and sort of interesting science just onto itself. So if you're curious about the human body or you're curious about a loved one who's going through this and want to know some of the real intimate, molecular details of what might be happening inside their heads, I hope it's a fun ride for you and I hope it leads to new sorts of levels of understanding.
And then finally, I think if culturally we start taking these disorders a little more seriously, it's easy to dismiss them in some ways because it is the word "headache." We use that word as a metaphor for just kind of a mere annoyance. Doing your taxes is a headache, sitting in traffic is a headache, and yet we have the same word unfortunately for this neurological disorder that can be really debilitating for a lot of people. And I think because of that dissonance, they often have a hard time being taken seriously. And that may even be why there's so little funding still for basic headache science relative to its burden. I mean, there's something like a billion people in the world have migraine and yet it's one of the least funded neurological disorders out there. I mean, it's incredible how little money goes there. So maybe if it cracks open a conversation at the NIH about whether or not this is a worthy disorder to fund, that will be a good thing too.

Dr. Peters:
I hope we can crack it and come to the cure for all headaches. But first of all, Tom, this has been so much fun. Thank you so much for sharing your experience. I think it's going to be really great for our listeners to hear from somebody that has cluster headaches and sort of really how you share those insights in your writing and in your book. And I want everybody to remember the book is called The Headache: The Science of the Most Confounding Affliction and a Search for Relief. Thank you again.

Tom Zeller Jr.:
Thank you, Katy. It was great to be here.

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Dr. Correa:
The American Brain Foundation is the American Academy of Neurology's philanthropic partner. To learn more about how you can help make a difference, please visit americanbrainfoundation.org. The American Brain Foundation believes that when we cure one disease, we will cure many.

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Dr. Peters:
We wanted to hear even more from our expert, Dr. Stephanie Nahas, so I want to welcome her back as she discusses treatments and advocacy for patients with cluster headaches. So I guess now we're ready for some hopeful things. So what can we do for our patients now? We've diagnosed a cluster headache. They've seen a wonderful headache expert like yourself. What is their treatment journey and what can we offer them?

Dr. Nahas:
Thankfully, there are lots of things we can offer them. What we cannot offer is a prediction of how well it's going to work. And like most of headache medicine, it's a lot of trial and error and it can be very, very tricky because it's not as simple as just writing a prescription and giving simple directions to the patient for how to take it. Moreover, there's a lot of overlap with the treatments that we use for cluster headache and other headache syndromes, particularly migraine, because there is some shared pathophysiology and therefore there's going to be some shared pharmacology. But how we use these tools can be quite distinct in cluster versus migraine.
So I'll start with corticosteroids, which may not be where you were expecting me to start, but this is usually where treatment begins for somebody who's entering a cycle or a bout a cluster headache. At the very first sign that a cycle is starting, we'll try to get steroids, usually prednisone, prescribed for that individual. The best evidence comes from a paper that was published in neurology a number of years ago and the regimen starts at 100 milligrams a day of oral prednisone for five days, and then the dose decreases by 20 milligrams every three days thereafter. So it takes about two and a half weeks to get through that. That's a lot of steroids and that can give some clinicians pause to, "Wow, is it really safe to prescribe that much steroid? Maybe I should just do a lower dose for three days. That's what works for migraine, right?"
Well, that does work for migraine, but that's like trying to put out a bonfire with a cup of water. It's just not going to work. You might as well throw those pills in the toilet. They're not going to do anybody any good. So that's something that's intended to perhaps stop the cycle before it fully gets going or at least mitigate the effects of the cycle, temper it a bit so the attacks are not as intense, not as long-lasting, maybe even not as frequent, and maybe the cycle will end more quickly.
Another thing that we can do in the beginning stages, the early stages of a cycle is to administer an occipital nerve block or suboccipital injection with a mixture of anesthetic and steroids. The specific anesthetic and the specific corticosteroid is under debate, but commonly used would include lidocaine, ropivicane, bupivocaine or some mixture thereof. And as far as the steroid goes, the top three ones we'd usually use are dexamethasone, triamcinolone, or methylprednisolone. And there are pros and cons, of course, to which anesthetic you choose, which steroids you choose, et cetera. So those are intended as so-called transitional strategies.
Then for the individual who tends to have longer cluster cycles and is going to need more coverage than just a couple of weeks, we'll start preventive or maintenance treatment. And here again, we have some things that are common to migraine. For example, the drug galcanezumab is approved by the FDA for the treatment of both cluster headache and migraine, but the dose is different. So if you use the migraine dose for cluster headache, it may not be effective and you need to know that there's that distinction because the cluster dose is much higher. It's 300 milligrams per month as opposed to 120 milligrams per month. Many pharmacies may not carry that dosage of galcanezumab because it's in a different format. It's in a pre-filled syringe of 100 milligrams at a time so the patient actually has to take three shots in their belly or leg every month until the cycle is over. For migraine, it's a simple autoinjector that they do one shot a month after their initial two shots. So there's another distinction.
Verapamil, though, is one of our number one preventive treatments. It used to be much more commonly used for migraine. 20 years ago, I was prescribing a lot of Verapamil for migraine. I hardly ever prescribe it now, but I prescribe it a lot for cluster headache. And we all know that Verapamil can be a tricky drug. It's really old. It can have a lot of side effects and drug interactions. It requires some specific monitoring, but it's not an insurmountable barrier. But it'd be nice to have treatments that are a little bit simpler. Also, in cluster headache, we tend to need to escalate the doses rapidly because we don't have a lot of time and it's high stakes here. We've got a high degree of suffering at hand. So I mean, imagine trying to ramp somebody up on verapamil from 80 or 120 milligrams per day to 360 or 480 milligrams per day. And somebody who doesn't have high blood pressure, or maybe he's even prone to low blood pressure, it can be tricky and it might not even be advisable.
And there are a few other preventive type of approaches that we have. One that's quite different from migraine is lithium, which is often a hard sell to patients because lithium carries its own baggage being known mostly as a drug for psychiatric disorders. But it's interesting. The neurologist Ekbom thought that lithium might actually help cluster headache because it was known at the time to treat bipolar disorder, which is a cycling disorder of the nervous system, it just manifests psychiatrically. And recognizing that cluster headache had this cycling nature to it, he and others thought, "Maybe lithium is good for cycling neurologic disorders no matter what they are." And guess what? It works. We still don't really know why, but it can be extraordinarily effective.
But like I said, it's a hard sell because of the stigma associated with the drug and there are some side effects that can be difficult to live with like being really thirsty all the time and drinking lots of water and therefore having to get up multiple times during the night to use the restroom or being bothered multiple times during the day and have to stop what you're doing to empty your bladder. It's kind of inconvenient. But hey, if it stops the attacks from being as terrible as they can be, then great. And then what do we do about the acute attacks, right? Because that's what's at top of mind of everybody who's experienced these attacks is, "What am I going to do when one of these starts that I can get it to stop as quickly as possible?"
One of the best options that we have is high flow oxygen. Oxygen is not so useful in any other headache disorders, but it can be the magic bullet and the saving grace for someone with cluster headache. The caveats are it can be hard to access, it can be inconvenient to have to drag it around with you or have access to it no matter where you are, and there are certain techniques that the individual must learn to enhance the delivery. It's not as simple as just putting on one of those tubes that has the nasal prongs and then you get a little oxygen in your nose like you'd see on TV, like you'd see in the hospital somebody who needs supplemental oxygen, like you'd get at the oxygen bars that are of varying degrees of popularity among ...

Dr. Peters:
Vegas.

Dr. Nahas:
Yeah, Vegas has a lot of these oxygen bars. But no, you need to make sure that you're enhancing maximal oxygen delivery to the lungs from the lungs to the brain. And again, we don't know exactly how it works, but we know that the more oxygen we can get into the lungs, in and out of the lungs, the better the treatment is for the attack and the quicker we can get it to resolve. So some tricks for that: Number one, you got to turn up the flow from the canister as high as possible and you might need extra equipment to increase that flow rate beyond the maximum that's set on the valve for that particular canister. So you may need to buy some extra equipment.
Number two, you need a mask that makes a good seal on the face so that when you're breathing in, all you're breathing in is oxygen. But number three, at the same time, you got to make sure that you can adequately exhale. So you need a tight seal when you're inhaling and no seal at all when exhaling. Then when you go to inhale again, there's going to be some air mixed in. So how do you, again, get that big puff of oxygen right up front? Well, you can buy an additional accessory that's a reservoir bag. So that reservoir bag fills up with oxygen as you're breathing oxygen in. That way the next time you're ready to take a breath, you can squeeze the bag and get a rush of oxygen along with the flow to keep that flow going.
And then there are other tricks that might need to be employed like extending the tubing and running it through a bath of ice water to cool it down. We all remember from physics and chemistry what happens when you cool the gas. It contracts. What does that mean? It gets more dense. What does that mean? There are more oxygen molecules per milliliter. So cold oxygen, when you breathe in a breath full of cold oxygen, you're actually getting more oxygen in your lungs than if you breathe in a breath full of hot oxygen. So all of this takes a lot of time to explain to somebody, it can be very overwhelming to receive all this information and, "How in the world am I going to do this on my own?" So a lot of education and training and support is required.
And quite honestly, we've relied really heavily on the community of individuals with cluster headache who have banded together in organizations such as Clusterbusters, which is the largest organization I'm aware of in this country. There are other organizations around the world and smaller organizations within the United States. But this is what it takes when you've got a so-called rare disease that's very invisible and has a lot of stigma associated with it because again, you can't perform a test to prove that that's what the person has. So a lot of these folks are not believed because it does kind of sound unbelievable that this would happen to somebody and it would just magically appear for several months and then disappear. It does sound kind of kooky and it makes it very, very hard to study, which is why we don't have a lot of FDA-approved treatments for it. And while we don't have a lot of expert opinion on what is best for individuals living with cluster headache.
But citizen science, it's a term I was familiar with but didn't really know a whole lot about and didn't lend a lot of credence to because up until I learned about the citizen science behind the cluster community and the strides they've made and how much they've taught us, all I had heard about citizen science were mainly conspiracy theorists and folks who don't believe in modern medicine or modern science or they've got some other kind of agenda. So it does tend to, in and of itself, have a little bit of a negative connotation towards it. But for the cluster community, it's been a saving grace and it's been the only way that certain tricks like this, like learning how to maximize oxygen delivery and some other kind of off the wall and frankly, really unusual solutions have been posited by this community and some of them work quite well for them.

Dr. Peters:
I am just so intrigued by everything you just said. There's so much in there so I have so many questions. So my first question is what do you think the reason is? Why do patients with cluster headaches just need very large doses of medicine compared to other headache disorders?

Dr. Nahas:
It's probably wrapped up in some of the uniqueness of the biology behind cluster headache and I can start to wax philosophical about a bunch of stuff that nobody can prove. It's really just me trying to analogize and wrap my mind around this like how could it happen? Again, I told you how I was fascinated with how does the brain work? How does it make us unique? How can we see colors? What is it that's unique about the individual who's prone to this disease expressing itself? Why does their brain need so much more medication to control it than, say, somebody with migraine or with tension-type headache? We just don't know.
Is it the nature of that beast or is it the nature of that individual? I don't think that anybody's really taken a deep dive into determining, "Well, does the person with cluster headache also tend to need more flavor to have their palate satisfied? Do they take hotter showers? Are there other things that they just need more of in order to get some kind of result?" I don't know. But for whatever reason, it is what it is. And yeah, higher doses and rapid delivery of medications and other substances, like oxygen, is really what's needed.
One thing we didn't talk about was sumatriptan. Sumatriptan and dihydroergotamine are both ergot derivatives or vasoconstrictive serotonergic agents that can be used for the acute treatment of attacks of migraine or cluster headache. But when it comes to cluster headache, again, because they're so rapidly escalating, so intensely severe, and relatively short lasting, you need something that acts quickly. So something that's delivered by a nasal spray or by injection is often what's necessary. Most folks are used to treating their conditions with pills. You tell somebody they need shots, they're like, "Whoa, this is serious business." Well, cluster is serious. It is quite serious, but that's another pitfall I see is that somebody gets diagnosed with cluster headache, but they're started on the wrong dose of steroid. They're given the wrong dose of preventive medication. They're given an oral triptan, maybe not even sumatriptan. It's maybe helping a little bit, but it doesn't give them nearly what they need.

Dr. Peters:
I mentioned advocacy in the first part of your introduction and how important it is to you. One of the things that our guests talked about was just access to these medicines and access to the oxygen, which could be a very successful therapy for some patients. You do Headache on the Hill. Where has, I guess, your understanding of these cluster headaches and your advocacy? Where have they come together and what do you see the future is?

Dr. Nahas:
One of the first few years that I was doing Headache on the Hill, which our first one was in September of 2009 if I'm remembering correctly. And I forget which year it was that we had a huge contingent from the Clusterbusters community and one of the things that we were asking for was that oxygen be recognized by CMS as a treatment for cluster headache because of this access issue, because so many individuals diagnosed with cluster headache couldn't get access to oxygen because CMS, Medicare, Medicaid were stating that, "Well, oxygen is reserved for pulmonary disorders only." And there's no way in the world, until more studies are done, to prove that it's safe and effective in cluster headache and, moreover, safe and effective in the population of patients with cluster headache who would also potentially be Medicare beneficiaries, i.e. people 65 years of agent older, that they weren't going to approve it.
So it took a lot of advocacy effort on our part and the part of a number of other different individuals and organizations to shine a light on how ludicrous that is and just how unrealistic that the studies they were demanding were going to occur. Now another study did happen after that which reinforced what we already knew. Yes, oxygen is safe for cluster headache. Yes, these are responsible individuals. They may be smokers, but they have common sense and they're not going to start a fire. Oxygen, it's not flammable itself. People can be responsible adults. And so now we're happy to say that in part through our efforts with Clusterbusters and AHDA and Headache on the Hill, plus again a lot of other advocacy, access is easier. It's not guaranteed, but it's at least gotten easier.

Dr. Peters:
I love the name Clusterbusters. I think that's great. But another great term you had, and I'm going to share it again, is citizen science, which I really like. I'm just remembering my first patient with cluster headache actually came to me with a diagnosis already when I was a resident and had already been on oxygen, and somehow they came to me as a patient and I remember having to do that for her. She was teaching me when I was a resident learning about this. And so I would say I love that term "citizen science" and I think we should pay attention more on what we can learn from our own patients. What do you think?

Dr. Nahas:
100%. This is why I had really been wanting to find my way to a Clusterbusters meeting at some point. I had heard about the organization nearly 20 years ago when I was in training as a resident and a headache medicine fellow at Jefferson. I was like, "Wow, there's this whole organization of folks and they have meetings and stuff? Wow, that would be really cool to sit in on and see what they talk about." And it really was just patients and people who maybe weren't even patients, but they thought they might have cluster headache, and they would get together once a year and basically just kind of hash it out and talk about, "Hey, how can we help each other to live with this horrible condition? How can we help educate the clinicians that take care of us? How can we help educate our family, our friends, our employers, about what this really does to us and what it really means for our lives? Just because we want to try to have as normal a life as possible."
And by starting to share ideas and tips and tricks, you start to realize, "Oh, you've done that kooky thing and it worked for you too?" or, "Oh, you've had an experience with X, Y or Z and it maybe helped you too?" And so the stories start to be shared and then you can start to source all that information and start to run surveys and learn even more about what helps one might not help another, but at least it's something. And that teaches us something about what this is and that there can be solutions to it because it can be extraordinarily lonely living with this disease, especially when you don't know anybody else with it. Anyway, I kind of went out on a tangent.
I felt like, "Maybe it's not my place to go to this meeting. This is their sacred space." And so I never even really thought about attending a meeting until a number of years ago when I heard that they really have always wanted clinicians to come and hear their stories and learn from them, and also see what they could learn from clinicians. So at their meetings, they eventually started having some doctors and scientists come not just as attendees and spectators, but also to share their wisdom. And by the time last year came around, when we started our own dedicated cluster and other trigeminal autonomic cephalgia headache clinic, thanks to a kind philanthropic donor to our center to give us the funding to start such a center, several of us went to our first Clusterbusters meeting and it was eye-opening. I learned so much and continue to learn so much from this group of individuals and the other clinicians and scientists who go there.
And I was lucky enough to be invited back again this past year not only to attend, but also to give a talk. What I spoke about was treating cluster in a migraine world. So the first part of our conversation is kind of apropos and something that's very recent in my memory. And it's wonderful that I can go and not really feel like a voyeur at all, even though it's, I guess, kind of semi-voyeuristic, but I feel welcomed. I don't feel like I'm an outsider, like I'm one of the other who is a member of a community that contains a lot of enemies to this patient community. So we're strengthening the alliances and strengthening the bonds and all learning from each other. This year, the meeting was bigger than it had ever been, had the greatest proportion of first-time attendees than they had ever had, and had the greatest number of clinicians and scientists attending ever. And I hope those numbers just continue to grow because this community deserves it.

Dr. Peters:
Well, Dr. Nahas, I would say thank you for educating us and thank you for imparting all of your wisdom on cluster headaches. And again, thank you very much to all of our listeners.

Dr. Nahas:
Thank you for humoring me as I tend to just go on and on and on and on about topics that I carry a great passion for.

Dr. Correa:
Thank you again for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes and you can follow Katy and me and the Brain and Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at @NeuroDrCorrea ...

Dr. Peters:
And Dr. Katy Peters, joining you from Durham, North Carolina and online at @KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope, together, we can take steps to better brain health and each strive with our own abilities every day.

Dr. Correa:
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Exploring the Reality of Cluster Headaches with Tom Zeller Jr.: Part Two

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