Meet Ashley1. Briefly tell us a little about yourself and your experience with cluster.
I’ve had episodic cluster headaches (ECH) since 2007. My first attack happened on the stand as a lifeguard which was my summer job and I thought it was dehydration, but it came back at the same time every day for two weeks. Weirdly, a year before that I had similar “attacks” that only lasted 10-20 seconds, which was SUNCT, another form of the trigeminal autonomic cephalalgias. My cycles were two weeks every six months for several years. Despite getting a correct diagnosis right away, every doctor and nurse I saw after that told me I had to have migraines because I’m a woman.
2. How did you connect with Clusterbusters and what you do for them now?
Six years into my battle with the condition, I was missing 1-2 months of school and work every six months and I was desperate. I found out they were called suicide headaches and understood why. I had oxygen finally but it was the wrong set up and I was having four attacks a day, filling my sumatriptan injection prescription every day (Literally, every single day — often crying to the pharmacist) so I could abort two out of the four. I lost ten pounds every cycle because I had no energy to eat. I ended up flying from Denver to Ann Arbor to get diagnosed with ECH again and find better treatments.
I studied journalism in college and have written plays, articles, and short stories since I was ten, so the most frustrating part of this for me was that there were no books out there on cluster headaches. I bought the only books on Amazon and at Barnes and Noble that mentioned cluster headaches and they were disappointing. One offers miscellaneous quotes that were more confusing than anything and the other two had just one or two paragraphs about cluster headaches. At that point, I figured someone needed to write a book on the condition to help people avoid misdiagnosis and find treatment faster. Why not me?
I started researching more and stumbled upon clusterbusters.org where I found out about the annual conference. In September 2014, I went to my first CB conference in Nashville prepared with my recorder, a camera around my neck, and a list of 50 questions to ask any patient or doctor who would talk to me. I found much more than I was looking for that weekend. I cried so much during those three days because there were other people like me there. I didn’t have to explain what these attacks were or how they affected every aspect of my life… I didn’t have to shy away from the suicidal thoughts that came up during attacks. There were 100 “clusterheads” there who felt my pain. I interviewed about 40 people and recorded every presentation. The book was published in 2017 with the second edition coming out this year (2020).
My life changed after that. I joined the online support groups on Facebook and the CB website forum and started an in-person support group in Denver in 2016 which ran through 2018. With the help of Clusterbusters, we put together a 5k in 2016 which has now grown to be an annual, worldwide virtual event. I served on the Board of Directors for two years… but more than that, I met my husband! He was the second person I met on the first night of the conference in 2014, and we’ve been happily married for more than two years.
I also do some writing for Clusterbusters on their website and grant proposals.
Another side note, that’s the conference where I found out about psilocybin mushrooms. When I was in Art School, I experimented with psychedelics and when I looked back I realized that I skipped my Spring episodic cycle that year. After learning more about it at the conference and talking with others about how much it improved their lives, I decided to give it another try. I’m mostly pain-free now for several years. I typically still have one cycle a year but “busting” (as it’s called) often eliminates the attacks for a week or two at a time and can end the cycle early. I haven’t had to use sumatriptan since January 2019. Clusterbusters and magic mushrooms gave me back my life. I was able to go back to work full time, fall in love, get married, and now I try to pay it forward through advocacy.
3. You recently wrote a book about cluster headaches, can you briefly tell us about that process and plans for the future.
I wrote a book on cluster headaches that’s more of a textbook. It’s a guide for living with the condition that dives into what happens in your brain during an attack, how it differs from other headache disorders, treatments (abortive, preventive, and alternative), and options for support. There’s a chapter just for loved ones to read and another one for doctors to help them understand us. It took me about three years to put it all together and I hope it’s helped a lot of people since it came out in 2017. I’m currently working on the second edition to update treatments and other information. It will debut at the Clusterbusters conference in Chicago this September.
I started the process out of frustration and anger. I was mad that there were so few options and so little information available for patients. I interviewed patients, family members, and doctors. I poured through a large stack of research studies and that anger melted away. Understanding my condition helped me gain some semblance of control over it. The attacks are still scary, but thinking, “oh hey, that’s just my trigeminal nerve swelling up to seven times its normal size,” helps somehow. So many people describe cluster headache as a beast or an otherly entity. Writing the book helped me kill the monster in my head because now I know it’s a dysfunctional hypothalamus, not a beast with the pronged side of the hammer attacking me.
4. Your husband also lives with cluster, what advice do you have for family members of cluster heads?
It’s unbearable to watch someone you love go through that much pain. I think understanding the severity of it makes it harder to watch. Andrew’s been on a great treatment for a year now but his refills are limited so he has to pick and choose which attacks he treats. He’s typically treatment-refractory, so we’ve had to get creative, trying some off-the-wall treatments like fertility medications that worked for some of the very few patients like him. I guess my advice is to listen to their needs. They don’t want to be touched and there’s very little you can do to help during an attack, but there are a lot of ways you can make it worse. Don’t make them talk to you or ask what you can do, follow their cues. Most people with cluster want to be left alone and they’ll rejoin the living once it subsides. Still, it never gets easier watching the love of your life rock back and forth while crying out in pain and cradling their eye. You both know the attack will end, but there’s another one around the corner, just a few hours away. We keep hope alive by always having two or three options in the wings for when the current treatment stops working.
5. What advice would you give to a person who was recently diagnosed with cluster?
My advice is to connect with other patients and go to the Clusterbusters conference. The validation and support are palpable. Get high-flow oxygen, the right mask, and learn the correct breathing technique so you can abort attacks quickly. Make sure your doctor understands your condition and is open to trying new treatments. If not, get a new doctor.