Unbearable Pain: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The headaches returned repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically start with intense discomfort around a single eye that persists up to three hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.
Historical healing records suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder note this.
In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.
But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
