Episode 22: Life with Cluster: Relationships, Treatment & Comm.

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Voice-over: Welcome to Spotlight on Migraine, a podcast series hosted by the Association of Migraine Disorders. Through personal stories and interviews with experts, we expose the true scope of migraine by exploring symptoms, treatments, research topics, and more. This episode is brought to you in part by our generous sponsors, Amgen, Novartis, and Alder BioPharmaceuticals.

In today’s episode, we hear from Andrew Cleminshaw and Ashley Hattle-Cleminshaw. They share their individual stories about living with cluster headache, how their disease brought them together, and what controversial treatment methods they have used to reduce the frequency and severity of their attacks.

Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.

Alicia Torborg: Hi. We’re here today with Andrew Cleminshaw. Hi, Andrew. Thanks for joining us today.

Andrew Cleminshaw: Thanks for having me.

Alicia: Thank you. So tell me a little bit about yourself.

Andrew: So I live in Michigan with my wife, who is also a clusterhead. We’ve been married for about a year and a half now.

Alicia: Congratulations.

Andrew: Thank you. And I’m a branch manager for a credit union back home.

Alicia: Okay. And so you have cluster — cluster disease, cluster headache?

Andrew: We call them cluster headaches, but I think there’s sort of a work in progress on rebranding that because of the word headache, so.

Alicia: Right. It’s way more. So tell me a little bit about when they started.

Andrew: So I was 12 when they started. I was in eighth grade. I actually remember very vividly: I was sitting in Mr. Ernst’s eight-grade algebra class, and we were going over, I think, inverse angles. And I just got this really intense pain, and not really knowing what it was. And really never having had, like, a “real, regular” headache before, I couldn’t really figure out what was happening. So I sat through class, sort of toughed it out, and went home that night, let my mom know what was going on. “I had this really crazy headache today.” And so it took some time, but eventually we got a diagnosis.

Alicia: You had the diagnosis. Was there any treatment?

Andrew: Yeah, so I was very — I consider myself luckier than most cluster headache folk — clusterheads — in their diagnosis journey in the sense that my doctors were pretty realistic with me, especially at such a young age. I think that as a human being, you probably want to protect that child more and maybe have the real conversations with the parent, but I was very lucky that they were open an honest with me. 

My first doctor was a GP — one of my first doctors was a GP, and she pretty much said, “I would not be doing my duty to you as a doctor if I did not try to help you, but this is really out my league. So we’re going to try you on Topamax for a little while here, and if that doesn’t help, then we’re going to refer you to the Diamond Headache Clinic,” because I had already been rejected by a local neurologist, who refused to see anybody under the age of 18.

I went to the Diamond Headache Clinic after trying Topamax, and it was really about five or six minutes in the office before Dr. Seymour just really shot straight with me and said, “Hey, you’ve got cluster headaches. There is not cure, and there is no real treatment for it, but we’re going to do our best to help you out with what we have.” And so they proceeded to put me on, over the course of years, various different blood thinners, painkillers, drugs that are discontinued in the United States, things that — just really a cocktail of anti-epilepsy, anti-seizure, anti-depressants, trying to get something to work. 

And unfortunately, as much as I credit them with their effort and being very real with me, it’s hard to know whether I devolved because of all the pills or whether that was just the path I was meant to take. But I had gone from having just a few attacks a day that were, yes, very severe, over the course of those years of treatment to being bumped up to 14 or so attacks a day that were lasting anywhere from 30 minutes to an hour or a little bit longer.

Alicia: I cannot even imagine going through that level of pain that frequently throughout the day, and I’ve heard them referred to as the suicide headaches.

Andrew: Yes.

Alicia: How can you not think about that? Have you ever thought about it?

Andrew: Oh, yeah. I mean, I thought about it this morning in the shower, I’m sure. It’s something that sticks with most of us, I think, all the time, especially for those who are chronic. Neither one is better than the other. Episodics will always tell you, “Wow, I’m so glad I’m not chronic,” but chronics will almost universally tell you, “I’m so glad I’m not episodic,” because —

Alicia: Why?

Andrew: — we can plan for ours. I’ve had attacks every single day of my life for the past 15 years, and I can guarantee you tomorrow I’m going to wake up with the same attacks. But episodics, they get these breaks, and they’re great, and it’s great to be able to go and live a normal life for the few months you can. But in the back of their mind, there is always this other shoe waiting to drop. When will it come? Will I be at an event with my family? Will I be at work?

Alicia: Could be your wedding —

Andrew: Yeah.

Alicia: — could be a vacation.

Andrew: Yeah, so my one little glimpse into that life was I had a really low point a couple years ago, and one of my doctors just said, “Hey, we’re going to try this,” and so gave me a blast of steroids, which helps a lot of people. And I did end up going almost four weeks without a full attack. I was still getting shadows and twinges and things like that, just always letting me know it was still there. But while I enjoyed to an extent those four weeks — it took me about three weeks to get out of the mindset of chronic, and then once I had that first week of, “Okay, I’m accepting this,” I knew it was going to start coming back at some point. And so I really got that taste of episode, and it really — it was no better, so.

Alicia: Right. How are you now?

Andrew: Better. Better now, but still not where I would like to be. I still get between seven and nine attacks a day, on average, and the severity is significantly lower than it used to be. Back then, they were always KIP 9s or KIP 10s. I was never getting —

Alicia: What’s a KIP 9?

Andrew: So just on a pain scale.

Alicia: Oh, okay.

Andrew: Everyone’s pain scale is different. A 10 to me is not a 10 to you, but with cluster headaches being sort of widely renowned as the most painful condition that a human being can experience, I think my 10 is a pretty clear definition of what 10 is. Now I’m very lucky. I carry a full-time job. I’m married. I’m productive. I have a life that I love to live.

Alicia: I can’t imagine holding down a full-time job and having this condition. So do you work in an office? Do you work at home?

Andrew: I do work in an office. One of the things that was — silver lining to growing up with this disorder is I had a lot of time to plan, and I had a lot of time to strategize, because every other kid my age was out having fun, and they were doing the things they wanted to do. And yes, I had friends, and I was able to have fun here and there, but it wasn’t the same. I grew up much faster, I think, than a lot of the people in my class. I was just at a different point in my life

And so when I was 15, 16, thinking about what comes after high school and then what comes after college, I started thinking about, “Well, what sort of positions can you hold? Can you do a physically demanding job all day?” Probably not. I needed something structured. So I just, over years, sort of said, “This is what I need,” and there were definitely times where I worked jobs that I just had to work to pay bills. But I didn’t really have a choice, and I think that’s where a lot of people are. 

We talk about lost productivity, and a lot of times, it’s not that these people with these disorders can’t work; it’s that they can work sometimes, but when they are there, they’re just not performing at the level that they would if they didn’t have this issue plaguing them.

Alicia: What do you do when you get one at work?

Andrew: So again, I think that what I say here is not characteristic of every clusterhead, because I am in a much better way, but I’m still getting them so many times a day. So full disclosure: when I’m getting  a headache at work, I will — if I have to turn off the lights and shut my door, I am the manager, so I can just sort of send an email and say, “Hey, I’m going to go home for a little while,” and I’ll come back, if that’s really what it came down to. 

But most the time — really, 99% of the time — I just tough it out, because a 4 on a pain scale — I think a lot of times when I decide do I need to go home, I think back on the years when it was so terribly awful, and I say, “How does this really stack up?” Because you weren’t going home then, so do you need to go home now?

Alicia: Do you attribute that improvement to a treatment you’re using?

Andrew: Yeah, a hundred percent. I took so many pills when I was a kid, and for the longest time, none of them had any negative impact on me, which was really such a surprise to my doctors, because I was taking amounts of medication that fully grown men were coming in crying and complaining about, and it wasn’t fazing me. And it wasn’t that I was toughing it out; it just really was not having that effect on me. 

Well, over time, that really sort of shifted. I developed really bad food allergies, my muscle tissue became fibrous from all the injections that I was doing of Toradol, and I had been turned on to Clusterbusters. It’s an online support group for people with cluster headaches, and their whole philosophy is — education and advocacy is really the two big parts, and educating people on other treatments outside the world of Western medicine. 

Through them, I learned about psilocybin mushrooms, so magic mushrooms, for those who don’t know, and LSD — specifically, those two. And I can get into the science behind all of that, but I had been five or so years without a single day of pain-free time, without a single six hours of pain-free time. I didn’t know what it was like to have an afternoon off. 

And so I made the choice — so an angel sent me some mushrooms, and I knew that I had to go off of all my pills for five days before I did it to really give it a good shot — clear out the receptors — or, clear out the molecules in your serotonin receptors and just give it a really fresh go. So I spent five days in what I would picture hell to be, and came out of it, took mushrooms, and for the first time in my headache career, I had 25 hours of pain-free time. 

So I really knew I was on to something, and so through years of experimenting and citizen science, as we call it, I was able to really knock my head pain down. So where I was getting 14 one-hour level-10 attacks every day without pause, now I’m getting 8 or 9, and yeah, that number is still high, but when they’re on a scale of 1 to 4, it’s much easier to deal with.

Alicia: Right. Was there a phase where you had to regulate how much magic mushrooms or LSD you were taking? How do you — is there a standard dose, and then you kind of tweak it depending on your size and your age and your…?

Andrew: So again, it’s citizen science, and the discovery of magic mushrooms or LSD helping cluster headaches was completely accidental. It was completely accidental. It was a group of, like, four people on a Yahoo! message board back in the earlier days of the Internet, and one of the guys who was from, I think, Amsterdam — or Holland, something — he had gone to a concert and taken LSD, and he was like — he went back to the message board and said to the people on there, “Have any of you used — this is really weird, but have any of you guys ever done this? Because I have not had a headache in days.” 

And from there, that whole philosophy got found, so through years of trying, I think the recommended first dose is somewhere between a gram and a gram and a half, and these are sub-hallucinogenic doses for most people.

Alicia: Do they also call that micro-dosing?

Andrew: No, that’s different. So micro-dosing is, like, .1 or .01 grams, so a microscopic amount of it. You could take .1 grams of magic mushrooms and really not feel or see anything, and it’s really all just cerebral.

I think the biggest thing is — Clusterbusters approaches this with a very healthy mindset. This is a medicine. We don’t do this for fun —

Alicia: Right.

Andrew: — and I think every single person that I’ve talked to who busts — nobody got into it for fun, and nobody just jumped in headfirst, saying, “Sweet, that’s my treatment?”

Alicia: No, it’s got to be terrifying —

Andrew: Yeah.

Alicia: — I imagine, not knowing how you’re going to react to it.

Andrew: Well, you talk about stigma a lot, and through this process, I have definitely been opened up to the negative stigma around certain things that can actually benefit a lot of people. You’ve got states now looking to legalize it. You’ve got states looking at legalizing MDMA therapy. There’s so many other applications for these things, and I think that if you treat it like a medicine, then you don’t have to worry too much about that stigma. 

I worry about the legality of it from time to time, but at the end of the day, if a judge wants to look me in the eye and tell me that he’s going to throw me in prison for taking care of my headaches, then I think that that person would have to live with themselves, and I’d be okay.

Alicia: Are these hereditary?

Andrew: We don’t know. So we just don’t know. The founder of Clusterbusters has four or five kids, and they all have numerous children, and none of them have headaches, so.

Alicia. Good.

Andrew: But there’s another person I know who has a son who just got diagnosed with cluster, so we don’t know. One of the theories going around is epigenetics, which is the idea that certain external significant stressors can actually change the way our genes alter — or, express themselves through adolescence. So obviously, you have a lot of changes going on in that time period, so the thought is you’re really susceptible to those sort of changes at that moment. 

I don’t know a whole lot more about it, but the part of the brain that it impacts — so deep into the core of your brain that it’s really not something that — I don’t think you can accurately study in a living person. I’ve been scanned more times than years I’ve been alive, and they’ve never found anything wrong with me. By the doctors’ definitions, in my head, I’m perfect.

Alicia: And you almost wish they would find something that they could just take, remove, or —

Andrew: Yeah, yeah, sometimes, definitely.

Alicia: Yeah. What are you most excited about for the future?

Andrew: I’m really excited for a shift in perspective by the general public. I’m seeing so many more things as years of advocacy are starting to pay off. The Internet has become such a helpful tool for us — social media. Say what you want about social media. It is a plague, but it has helped us out so much.

Alicia: For support?

Andrew: Well, and just spreading the word. Cluster headaches go so frequently undiagnosed or misdiagnosed because they can present like paroxysmal hemicrania, and you can have somebody living 50 years — I met somebody a year ago who was 70-some-odd years before she got diagnosed. This nice, sweet old lady coming out — imagine how many years she had to live not knowing what was happening to her or thinking it was something else and just thinking that none of her treatments helped. 

So I think that social media has been just such a huge help for us to spread the word, and I hope that over the coming years, and the increased level of advocacy and awareness — I do hope to see, I think, a more widely accepted or a more — I would like to see a more accurate description other than headache, because whether it’s migraine or cluster or any other significantly painful head condition, I think that headache is an insult. And I think that it does not accurately describe what the person is going through, and I think that if we can change that, I think that we’d change a lot of stuff.

Alicia: Well, you’re doing amazing work, and Clusterbusters is just a fantastic organization.

Andrew: Thank you.

Alicia: Thank you.

Andrew: Yes, I love being a part of Clusterbusters. They’re awesome.

Alicia: So switching gears, you recently got married —

Andrew: Yeah.

Alicia: — to a wonderful woman, Ashley Hattle. 

Andrew: Yeah, yeah.

Alicia: Tell me how you met.

Andrew: So we actually met at a Clusterbusters conference in Nashville five-ish years ago. She was there researching for her book that she wrote, Cluster Attacks: A Guide to Surviving the Most Painful Condition Known to Man (sic). And one of the long-term Clusterbuster supporters actually said, “Oh, hey, you need to go meet Andrew,” and so we just sort of got introduced that night and talked about oxygen and stuff like that, and then just became friends. I attended Headache on the Hill for my first year — it was her second — and just sort of hit it off.

Alicia: That’s great. What a nice story.

Andrew: Yeah, she’s awesome, and having somebody around who truly gets it is extremely beneficial. It wears on her like it would wear on any supporter, which I do feel bad for from time to time — well, all the time — but she’s great because she gets it.

Alicia: She understands it, sure.

Ashley Hattle-Cleminshaw: I’m Ashley Hattle-Cleminshaw, and I am a cluster headache patient. I’m episodic. I’m also a medical writer and author of a book on cluster headaches, and I’ve been an advocate for cluster headaches and people who have headache and migraine disorders for about five years now.

Well, cluster headaches completely upended my life. I was in photography school, had a great scholarship. I was working under the number one photographer in Colorado doing weddings and being his second shooter, and it got to the point — and he was really understanding. Small business — it was just me and him. It got to the point where I was just on so much sumatriptan — and I had to be, because it was either I’m in the bathroom during someone’s wedding screaming because my head hurt so bad, or I’m on medication that going to end up with fuzzy photos. 

So I put my camera away after the photos came out fuzzy for a first dance, and I didn’t want to have to someday call a bride on her wedding day and say, “Hey, I can’t do this.” So then my career changed to be more about journalism — photojournalism.

Alicia: And where has that led you?

Ashley: Well, it led me to write a book.

Alicia: And the name of the book is…

Ashley: Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man.

Alicia: Can’t imagine.

Ashley: Yeah.

Alicia: Can’t imagine.

Ashley: And I chose that title because you hear the word headache and you think it’s just a headache, and you have these renowned neurologists saying it is one of the most insidious pains a human being can experience, and so I wanted that to play in. And within the first few pages, there’s a spread that’s just quotes from everyone I interviewed — doctors, patients, supporters — and it tells a story just in those two pages of how painful it is and how desperate people are for help.

Alicia: Well, I read it. It’s a really informative, great book.

Ashley: Thank you.

Alicia: How do you refer to them? Are they cluster attacks, cluster headaches, cluster disease?

Ashley: So if we had never met and you had never heard of cluster headaches, I would say to you, “I have a rare form of trigeminal autonomic cephalalgia, and the VA compares it to non-convulsive epilepsy. The official name is cluster headache.” So that’s kind of how I start so people don’t immediately say, “Oh, I’ve had one of those too. Oh, here’s some Tylenol.” And I’ve never had anybody say, “Oh, I have those too,” when I lead in that way.

Alicia: Tell me a little bit about how they started or when they started.

Ashley: So they started the summer after I graduated high school. My first attack was when I was a lifeguard, and I thought I was just severely dehydrated and couldn’t think, couldn’t focus, couldn’t sit. And it happened, I think, at about 1:15 in the afternoon, and then it went away an hour and a half later. I was like, “That was weird. I hope I never get that again.” And —

Alicia: How intense was that?

Ashley: So intense that it’s like you can’t think of anything but the pain. There’s no other thought but the pain and trying to make it go away. And so then the next day, it happened at the same time, and the next day it happened at the same time. And two weeks went by, and they went away. And then I moved from Nebraska, my native town, to Colorado to go to school. Completely forgot about it. It was like, “Great, I’m completely healthy. There’s nothing wrong with me.” 

And six months later, around finals, I got hit again. And so I went to the emergency room. I had my roommate take me. And I was telling them what I was experiencing, and they were calling it migraine and migraine. And all they gave me was hydrocodone, and I mean, I don’t think hydrocodone works well to treat migraine —

Alicia: Right.

Ashley: — much less cluster headaches. So I went home. They didn’t work. And the next day, I was in the same emergency room, saying, “Hey, these didn’t work. I need something else. I need something to stop it right away because I can’t go for an hour and 15 feeling this.” And they kind of made it known that I shouldn’t come back and that I was just coming back for the drugs.

Alicia: Oh, my goodness.

Ashley: So then I switched hospitals to the University of Colorado at Anschutz. Got a little better treatment there.

Alicia: How does that make you feel, being turned away like that and being young, away from your family, your parents? You had to have been terrified.

Ashley: It was.

Alicia: Terrified. I can’t imagine.

Ashley: Because you’re used to — I mean, I was 18, but you’re used to your parents handing that stuff for you, like making the appointment, making sure you get there, calling your school, letting them know you’re not going to be there. So it was hard suddenly doing that all by myself, but the hardest part was just — the hardest part was the pain. And it happened every morning, so I couldn’t take my morning class, and I think I ended up dropping that class. And then after two weeks, it went away again.

Alicia: Did this impact you from an — it had to — from an emotional standpoint, living in fear that you just don’t know when it’s going to happen, or you didn’t even know what it was, I’m sure —

Ashley: Yeah.

Alicia: — early on, right?

Ashley: No. They were calling them migraines, but I didn’t think that they were migraines, and I’d done enough research at that point that I believed they were cluster headaches. And so I did start saying that when I went into the doctor, but they would immediately say, “No, you have migraine, because you’re a woman,” and that was a whole different frustration. But I guess going through college while dealing with it, one of the biggest triggers of cluster headache attacks — because the individual — I call them attacks, but the actual condition, I call cluster headaches — but you can’t drink. That’s the biggest trigger.

Alicia: Alcohol.

Ashley: So all my friends would want to go out and hang out at the bar, and I just absolutely couldn’t. And I definitely felt distanced, but I also had a lot of great friends who were there with me and drove me to the emergency room.

Alicia: So when were you officially diagnosed?

Ashley: 2014, so seven years later.

Alicia: Seven years later. So what did you do for — did you find anything that helped you in those seven years?

Ashley: Yeah. I realized pretty quickly I wasn’t going to get the help I needed from the doctors I was seeing. I knew that the pills didn’t work for triptans. I knew that the nasal spray didn’t work for triptans. It was the fail-first mentality, and I knew I needed the injections to take away the pain immediately, and that’s the number one treatment aside from oxygen for cluster. So I went to urgent care and basically said, “Hey, I’m having an attack. I need sumatriptan.” And I got the prescription even though I wasn’t actually in pain, but it helped me prepare —

Alicia: Oh…

Ashley: — for the next cycle. So the next cycle, I was set. I’d saved up 14 injections, knew what to do, and I was just doing it on my own because that’s how I had to adapt.

Alicia: And so did sumatriptan injections help with the cluster?

Ashley: Yeah, within four and a half minutes, they would completely take the pain away.

Alicia: Really. And did you reach a point where that no longer worked?

Ashley: Well, the biggest hurdle was getting enough of it, and that’s why I started stocking up in between cycles. But then there was one time — it was the 35-day cycle, the longest I had had at that point. I had spent $900 out of pocket for sumatriptan that month. I was taking two injections a day on top of taking the pill just to try to prevent it, and when the cycle finally broke, I went through three days of withdrawal.

Alicia: So is there a danger in taking that much sumatriptan?

Ashley: Yes, I believe if you have a heart condition or blood pressure.

Alicia: I’ve heard that oxygen can be a treatment for cluster, but I’ve also heard that it can be difficult getting it. 

Ashley: Oh, yeah.

Alicia: Can you tell me why that is or tell me more about it?

Ashley: Yes, I have a whole oxygen story. So let’s see. I was finally diagnosed correctly in 2014, but in 2013, I found an incredible primary care physician who — he would get on the phone with my insurance and make sure I got more injections. He did his homework because he believed me that these were cluster headaches, and he’s like, “I think you need oxygen.” 

So he writes me a prescription for five liters per minute through an oxygen concentrator, and I know that he meant well, but that is not how cluster headaches are treated. You need at least 15 liters per minute through a non-rebreather mask, and you have to hyperventilate or do a deep-breathing technique. And so he got me on the right track. He gave me the oxygen, and I just didn’t think it worked for me until I found out about Clusterbusters and I went to my first conference, and I learned more in three days than in seven years of having it.

Alicia: Really.

Ashley: It was incredible.

Alicia: That is great. So tell me more about Clusterbusters.

Ashley: It’s just and incredible community. I stumbled upon it because when I finally did get the diagnosis — I’m a journalist. I research. I want to understand what’s going on in my brain and how treatment can help it, and I was frustrated because I couldn’t find any books on it. I couldn’t find any literature. So I’d kind of created this goal that I wanted to write this book to stop the next person who just got diagnosed from having to do everything I did. 

So when I dove into the research, I found Clusterbusters, and I contacted Bob Wold and said, “Hey, I want to write this book. Can I come and take pictures and do interviews?” And he probably was like, “Okay…” But he let me come, and it was a life-changing experience.

Alicia: Really.

Ashley: The first night is a welcome reception, and so everybody’s together just — and you feel like family immediately because everybody has the same condition or at least understands what it is or has seen it.

Alicia: And it’s not as common as many other headache diseases.

Ashley: No, right.

Alicia: So I’m sure a lot of people that have it feel so very alone, so to be in a community with people that are alike must feel great.

Ashley: Yeah, completely validating. And so then the actual conference started the next day, on Friday, and I think it started with Dr. McGeeney’s speech on all things cluster headache, and Dr. Schor followed with the psychological aspects. And I basically cried happy tears for two days because, for the first time, I was understanding what was happening to me and also realizing that it wasn’t just happening to me.

Alicia: Wow, that’s powerful. So what kind of treatment has worked best for you?

Ashley: As I was doing the research and finding out about Clusterbusters, I found out that psychedelics like magic mushrooms and LSD were being used to successfully treat cluster headache. I wanted to try it. I wanted to do anything to stop the next cycle, because they were two and a half months at that point. And so I tried LSD that time, but I also completely changed my diet for six months, and I did successfully skip that cycle. And I do attribute it to the psychedelics, but I was trying other things. 

So it worked that first year, and then I went to the Clusterbusters conference, and then part of the — the “buster” part of Clusterbusters is about busting the cluster headaches with psilocybin or with psychedelic compounds. And it took a while for my mom and dad to get on board with that because it’s kind of weird —

Alicia: They can understand —

Ashley: — to call your dad and say, “Hey, I’m going to do acid, and it’s going to make me feel better.” 

Alicia: Right.

Ashley: But it did, and so my mom actually came to the conference with me, and that’s really all it took. I met people who were pain-free for years because of it.

Alicia: And I’m sure at that point, too, it’s more regulated and there’s more control — where you’re getting it —

Ashley: Yeah.

Alicia: — and how much to take so you’re not —

Ashley: Well, and you’re able to grow it yourself — not acid, but mushrooms. So —

Alicia: Wow.

Ashley: — you don’t have to rely as much on prescriptions, because the prescriptions, I realized later, were making me so much worse. I wonder if maybe I had found out about the alternatives before this, if my cycles would have stayed two weeks instead of going to two months, because all of that sumatriptan, it’s not good for you.

Alicia: Right. So when you take the mushrooms, do you feel high, or is there an amount you take that’s a threshold that keeps you under?

Ashley: Honestly, I don’t like the tripping feeling. 

Alicia: Yeah.

Ashley: It’s not something I pictured myself doing forever, so I do a low amount that doesn’t cause hallucinations or anything like that. Sweaty hands, things are brighter, you feel things more. So I try to do it once a month. I don’t always follow that because I don’t like the feeling, but when I’m on top of it, I can usually stave off the next cycle for a few months.

Alicia: That’s great. So you’ve done some work for the INvisible Project. Can you tell me a little bit about that?

Ashley: Through the publishing of the book, I had connected with Katie Golden to make sure I included — because there’s a chapter on advocacy, and I wanted to include the INvisible Project, U.S. Pain, Clusterbusters, everybody I could think of at the time. And so a couple months later, Katie asked if we wanted to be one of the people interviewed for the next edition. So my husband and I did that and were really flattered, and it was great. 

And this year, she asked if I could write a profile on another cluster patient, and that was really meaningful on several levels. I was honored to step in and help, but the profilee was a child with cluster headaches.

Alicia: Ah.

Ashley: And he got them at 12 years old, and it’s always great to connect with somebody else with cluster headaches. It’s sad but powerful, and you know that each other gets it, so it was good to be able to write that for the INvisible Project.

Alicia: That has got to be so hard, interviewing a child. Is it less common with children?

Ashley: Mm-hmm.

Alicia. When do they most commonly start? Is there an age?

Ashley: Well, so back in the day, they thought it was only in middle-aged white men who were heavy smokers, heavy drinkers. Now we know that women, children, and people of all races get cluster headaches. And so in my research for the book — there’s a chapter on gender, and it breaks down the different decades where men and women are more likely to develop cluster headaches, and I hope I’m saying this correctly, but for men, it’s either in their teens or their 30s. For women, it’s usually in their 20s or 50s, and they believe it has something to do with those hormonal fluctuations, gearing more toward testosterone than estrogen.

Alicia: So now you’re on the other side, right? You’re not having the cluster attacks anymore, right?

Ashley: Yeah, not as frequently.

Alicia: And you’re helping other people. How does that feel?

Ashley: It feels really good, yeah. We have a support group in Denver that I started a few years ago that’s really taken off, and they’re like family now. We have one in Michigan. A friend is starting one in Indianapolis, so it’s really cool. It’s branching out to be different regional groups so people who weren’t able to meet another clusterhead in person now have the opportunity to do that.

Alicia: Right. If you were to give advice to someone who has cluster, what would it be?

Ashley: To hold on. Every attack ends. It will end. And don’t be afraid to try something that might work, because I held off for quite a while after I found out about alternatives, and it wasn’t until I was completely desperate and 15 pounds lighter that I finally tried it, and I wish I had done the research and tried it sooner.

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Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

This podcast is sponsored in part by Amgen/Novartis and Alder BioPharmaceuticals.

*The contents of this podcast/video are intended for general informational purposes only and do not constitute medical or legal advice; the content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.