Full-Blown Agony: A Personal Battle With the Mysterious Pain of Cluster Headaches

It was a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort around a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated 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 worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a