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.