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.

6 thoughts on “An Open Letter to Everyone with Cluster Headaches—Depression, Suicide, and Isolation”

  1. Sumatriptan works for my cluster headaches ( though they used to be severe, they’ve subsided over the last 3 years that I have stopped eating Tuna fish sandwhiches, as I’ve suspected it was mercury in the tuna that was causing the headaches, and I really believe this is the reason, as now, after laying off of Tuna, my headaches are reduced to a very minor level, though I still need the meds). I have to take one 100mg tablet every day. Sometimes it won’t last for 24 hours, will only last 12, and i take another, which causes my 30 pill supply to not last the entire month, so I’m looking for a way to get another 9 pack ( they come 9 to a pack ). It’s expensive, but my medicare pays for it.

  2. Я из России. Здесь очень мало знают о кластерных головных болях. Мне приходится искать способы лечения самому. Каждые пол года в течении от месяца до трёх, я не хочу жить. Хорошо что у меня есть жена которая меня поддерживает. Борюсь только sumatriptan 50mg (2$ за две таблетки) и ergotamine+coffein. Кислорода у нас нет.
    I’m from Russia. Very little is known about cluster headaches. I have to look for ways to treat myself. Every half year in a month or three, I do not want to live. It’s good that I have a wife who supports me. I struggle only with sumatriptan 50mg (2 $ for two tablets) and ergotamine + coffein. Oxygen is not in our country.

    1. I’m so sorry you have episodic cluster headaches too. A good support system is the only way I’ve been able to cope. Do you have sumatriptan injections available? The auto-injectors are expensive in the U.S. but my doctor wrote my prescription for the sumatriptan vials which are much cheaper and I can use as much or as little as I need because I fill the syringes myself.

  3. Thank you for sharing. It helps hearing other people describe exactly what I’m going through. I have had the joy of experiencing this terrible….I don’t know for 5 years and didn’t get properly diagnosed until 2 years ago. All wisdom teeth pulled, sinus surgery, couple of mri’s and catscans, painkillers….. I’m tired.

    1. Hi Druce, I’m so sorry to hear you’re struggling with cluster headaches too. It’s such an awful beast to deal with day in and day out. Do you have high-flow oxygen? sumatriptan injections? Let me know if you need anything or an ear to listen. I’m terrible at responding to comments but my email is always open (ashley.hattle@gmail.com).

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