Full-Blown Pain: My Fight With the Enigmatic Suffering of Cluster Headaches

It began on a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a