Seven things cluster headache patients wish society understood

By Ashley Hattle

Invisible diseases are among the most challenging conditions to live with because you not only struggle with pain and symptoms, but also judgment and misunderstanding from those you love the most. Cluster headache patients face this stigma for many reasons: We tend to isolate ourselves during attacks and episodic cycles, and talking about it can bring on post-traumatic stress disorder (PTSD)-like symptoms. “Clusterheads” live in fear of the next attack.
While there are countless things we wish our friends, family, and medical professionals would understand, if the public knew the following things, our disease would be taken more seriously.

1Cluster headaches are different from migraine.

“It’s not a migraine,” says Deborah Marcus. “Dark rooms, quiet, [and] resting do not help. Pacing around or finding ‘positive distractions’ are what can get me through episodes.” Cluster headache is one of the trigeminal autonomic cephalalgias, and a primary headache disorder completely separate from migraine disease. The typical treatments and behaviors for cluster headaches are vastly different. The pain is searing and stabbing around the eye and temple, causing restlessness and agitation. We hit ourselves on the head with our hands or blunt objects, moan and scream, and dream of removing our eyeball.

The attacks are strictly one-sided, lasting 15 minutes to three hours, and occur several times a day. No one—no one—has just one cluster headache attack, so comments such as “Oh, I’ve had one of those,” come off as hurtful.

2You can recognize “suicide headaches” without diminishing other disorders.

“It’s not invalidating migraine or any other pain condition to acknowledge this condition is very severe, [with] high suicide rates, and debilitating,” says Heidi Marie. “The majority of people know what migraine [disease] and tension-type are, but not cluster.”

Many patients have faced disbelief and been told they’re exaggerating during an attack. They’re not only dismissed by their loved ones, but also by the medical community. Cluster headaches are nicknamed “suicide headaches” because they make otherwise healthy people seriously contemplate ending their lives.

“I’ve had one vaginal birth and three C-sections. Combine all of the pain you experience through all of those together, and you still don’t come close to an inkling of the pain that is caused by one cluster attack,” says Amanda Dapson.

3Psychedelics can be an amazingly effective treatment.

“The medicinal use of LSD has changed my life living with clusters. I’ve been so amazed with how well this treatment has worked for me… real and lengthy results,” says Becki Neuenschwander.

Psilocybin mushrooms and lysergic acid diethylamide (LSD) have been studied for their efficacy in treating both episodic and chronic cluster headaches. A 2006 study at Harvard University found that both psychedelic substances could abort attacks and that even more patients found that it could end their episodic cycle. Psilocybin and LSD users in the study reported reduced severity and longer remission periods. These substances even worked in patients who didn’t respond to traditional treatments.

4We struggle to get more than 1-2 hours of sleep.

“Lack of sleep is a real thing. I can’t get more than two hours at a time while in a cycle,” says Ben Merrick, adding, “which makes attacks worse, which makes it hard to sleep, which makes attacks worse… ”

Cluster headaches typically come with nocturnal attacks that wake you from rapid eye movement (REM) or “dream” sleep. It’s difficult for clusterheads to get more than 90-120 minutes of sleep at a time. That’s bad enough for one night, but imagine going weeks and months surviving on so little sleep.

5Oxygen treatment is most effective but hardest to get.

High-flow oxygen is the best and safest option to abort cluster headaches, but this treatment is the one that patients struggle the most to obtain. Whether the delay is caused by doctors who have misguided notions of “oxygen toxicity,” or insurance companies and oxygen suppliers who don’t understand its necessity, patients can spend years trying to get access to oxygen.

Many insurance suppliers won’t cover the cost because the Centers for Medicare and Medicaid Services refuse to list 100 percent oxygen as first-line treatment. Then, when patients do get the tanks, they must fight for the proper regulator, buy their own non-rebreather mask, and learn a specific breathing technique.

6We live in fear of the next attack.

“My attacks happen roughly around the same time, so when I’m in the bedroom crying and not at the table, I don’t want to hear whispers… Trust me, I’d rather be eating meatballs and pasta with you,” says Sally Nee-Brady.

Some clusterheads can set their watch by their attacks, as cluster headaches occur at the same times each day for weeks, months, or years on end. We live in fear of 10 am or 2 pm because we know “the beast” is coming for us again. PTSD, depression, and agoraphobia can quickly take over your life as you watch the clock tick.

“The anxiety of knowing that you are about to have an attack, and there is little to nothing you can do to stop it, is overwhelming,” Merrick says.

7Cluster headaches are as common as Parkinson’s disease.

Much of the research on cluster headaches has been funded or instigated by the patient community through Clusterbusters. Despite the documented severity and high suicide rate, there’s a severe, ongoing lack of funding and research.

“This is not a rare disease,” says Eileen Brewer, President of Clusterbusters. “It’s as prevalent as Parkinson’s disease. Cluster headache should not be riding on the coattails of any other diseases. It is a serious, debilitating, and deadly disease that deserves much-needed attention.” •

Ashley Hattle is a medical and fiction writer who has experienced episodic cluster headaches since 2007. She is the award-winning author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man and a traveling advocate for patients with the neurological disorder with Clusterbusters, Inc.