An Open Letter to Everyone with Cluster Headaches—Depression, Suicide, and Isolation

Dear Clusterhead,

Much of the last five years of my life has been spent advocating for cluster headaches, interviewing other patients, and finding treatments that work for me. I’ve been somewhat absent online for nearly three months due to anxiety, depression, and pure exhaustion from the fight.

“I had one of those once,” “My brother has migraines,” “Go lay down and take Excedrin,” “You still have those?” are comments we’ve all heard too many times. They often mean well but don’t take the time to understand that you can’t go lay down, you can’t sleep it off, and they’ve never had a cluster attack because they don’t happen just once.

They’re not migraines. They’re not tension-type headaches. They’re in a completely different group of head pain disorders. They’re one of the Trigeminal Autonomic Cephalalgias (which also includes Trigeminal Neuralgia, Paroxysmal Hemicrania, SUNCT, and Hemicrania Continua), and anyone who suffers from both migraine and a version of TAC will tell you these conditions are a different kind of beast.

So, I retreated into myself because this fight is exhausting and enraging. The new CGRP study FDA approved for migraines was also being studied for episodic and chronic cluster headaches. Guess what? The chronic study was pulled because Amgen beat Teva to the punch and they can’t make as much money off of us. I personally know someone who has become episodic thanks to CGRP and is now left to fend for himself because he can no longer get the treatment. He broke down into sobs as we hugged yesterday at the 5K. We’re one of several small patient groups with the Cephalalgias, and we’ve all been turned away by doctors, pharmacies, insurance companies, spouses, friends, and family members. In some cases, we’ve even turned on each other.

Yesterday was the annual #CureforCluster Virtual 5K by Clusterbusters, and I finally feel that I’m coming out of this dark period of hating myself, feeling that I will never be good enough, and avoiding life because rare diseases and headache disorders are stigmatized.

I am episodic. My fiancé is chronic. Over the last few weeks, I have watched him writhe in pain after one of the few treatments that have ever worked for him wore off. He had back-to-back attacks for four days. I heard his moans and screams. I saw him clutch and hit his head. He paced. He tried every abortive and alternative treatment we had and then some. Knowing exactly what that feels like almost makes it worse because the knife in his head has stabbed me too.

He cried from pain. I cried from helplessness because despite having written a freaking book about it, I can’t help him. We hold each other up so well 95 percent of the time, but it has been a hard few months. Harder than any otherwise healthy person can imagine.

So, how do you keep the fight going, straighten out the misconceptions, and educate people on oxygen, psilocybin, and other treatments when you are standing on the tips of your toes in six feet of water, bobbing for air just to keep your life and the life of your fiancé afloat? I should insert something inspirational right now, but I can’t because I started to drown. We started to drown.

Depression is so invasive that it feels like a friend. The darkness is warm and welcoming. It tricks you into believing that suicide will be like coming home. But, depression is a supervillain who in my and my fiancé’s case had an evil minion poised with the pronged side of the hammer, ready to drive it into the right side of my skull and the left side of his. That foul sidekick is Cluster Headache.

Now that the water is receding and I’ve taken a deep breath, I’m beginning to fight for us and clusterheads everywhere again, because we can’t give up—Because these are called suicide headaches, because these are one of the rarer types of neurological conditions. We must raise our voices just to be heard as a whisper.

I’m not sure what I hope to accomplish with this letter, but I want every clusterhead to know that these thoughts and feelings are unfortunately common. You can only be turned away so many times before you start to think you’re not worth it. You can only hear “I had one of those” so many times before you begin to withdraw into sadness and anger. But you are worth it. We are worth it.

We may be few, but if you’ve ever been to a Clusterbusters conference for cluster headache patients and their families, you know that we are loud. We do have other voices speaking for us through organizations such as The INvisible Project, National Headache Foundation, CHAMP, the Headache Center in Mississippi, Miles for Migraine, Golden Graine, and so many more, but those sounds are often muffled and drowned out by our isolating thoughts.

I hope this dark period is over forever, but I know it will be back. This fight for awareness, funding, and newer, effective treatments explicitly made for us will never be over. However, my voice, no matter how soft, will always stand for you, stand for Andrew, and stand for me.

Life has many amazing and colorful parts—I get to marry my best friend in September. He’s my superhero. My 6’4 Wingspan Man. We have a rambunctious dog, a very particular cat, wonderful family and friends on both sides, and a large family of clusterheads. Depression, suicidal ideations, and isolation stole my vibrancy, but I’m so glad to see purple again.

Sincerely,

Ashley, an 11-year episodic clusterhead

June is Migraine and Headache Awareness Month and purple is the chosen color to represent us. There are many forms of head pain, and each takes a toll on patients’ lives. So, speak your truth, share about your condition, and uplift others.

Why You Need to Attend the Clusterbusters Conferences for Cluster Headache

The Clusterbusters conferences are unmatched by any other medical gathering of patients. These annual events bring hundreds of cluster headache patients together, which is a life-changing experience for many, including myself. (The 2018 conference for cluster headache patients by Clusterbusters is in Denver, Colorado, September 13th-16th. Learn more and sign up here.) Bob Wold, the founder of the nonprofit organization, has dedicated more than 15 years of his life to furthering research and raising awareness for this misunderstood disorder.

Clusterbusters spearheaded the research at Harvard and Yale with psilocybin and psychedelics. They’ve also contributed to the decreasing number of years it takes to reach a proper diagnosis. Ten or more years ago, it took up to eight years or longer for a doctor or neurologist to correctly diagnose a clusterhead, causing them to go years without high-flow oxygen and other essential treatments. Thanks to Clusterbusters and other head pain advocacy groups, the average time to diagnosis is closer to two years now.

My first Clusterbusters conference was in 2014. I went to Nashville (the conference locations change each year. Denver is the 2018 location.) with a camera, a voice recorder and pen and paper prepared to hunker down and do more than a dozen interviews and soak in as much knowledge as I could. I found all of that and more. I walked into the welcome reception and found an overwhelming sense of love and understanding. Many of these people took me in immediately and shared more wisdom with me than eight months of research had taught me. My cluster headache book became more than an outlet of information for new patients. I needed to tell their stories. The trials that patients and their supporters face every day is more difficult than you can understand.

2018 conference for cluster headaches | Denver | cluster headache patientsThe 12th Annual Clusterbusters Conference took place two weeks ago in Chicago from September 14-16. There were more than 200 attendees registered, which is more than any other year. Ainslie Course was a fantastic moderator, and Eileen Brewer planned a flawless event as usual. Dr. Brian McGeeney, our favorite neurologist, from the Boston Medical Center speaks at the event every year. Dr. McGeeney and Dr. Larry Schor‘s speeches are the most important ones to sit in on for newcomers and returning attendees.

Erika McDermott also gave a stunning speech about her personal experience that left not a dry eye in the conference room. Other speakers included Dr. Emmanuelle Schindler from Yale University, Hans-Joerg Tangermann of Germany, and many others. gammaCore® talked about their vagus nerve stimulator which has shown great promise in treating acute attacks, and Katie Golden, Dr. Robert Shapiro and I were on the Advocacy Panel to discuss how we can continue to raise awareness and funding for cluster headaches and other types of head pain.

Bob Wold Present Ashley Hattle with Exceptional Education in Cluster Headaches award

The Clusterbuster event reminds us all that we’re not alone and several thousand online viewers were able to see snippets of speeches. This year’s conference was particularly exhilarating for me because my book, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Mandebuted the week prior. Wold and Brewer were kind enough to give me a table to do book signings, and I sold out on the first day of the conference. I was honored to receive the award for “Exceptional Education in Cluster Headache” from the organization.

The most meaningful moment for me, however, was handing Wold a copy of my book. His experience and expertise along with many others made my book possible, and I’m truly amazed at the response to the book. I set out to help the newly diagnosed. I set out to write the book I needed when I was diagnosed. I ended up with a thorough guide to cluster headaches that can help new and old patients and also family, friends, and physicians of patients.

I can’t praise this organization or event enough. I highly recommend attending one if you can. It doesn’t matter if you have clusters or if you know a friend of a friend who has clusters, this yearly gathering will forever change your perspective on living with one of the most insidious pains a human being can experience.

If you’re interested in checking out the cluster headache book, view sample pages and reviews on Amazon and order a copy here or on Amazon Prime in the U.S. and Europe.