Full-Blown Agony: My Struggle With the Mysterious Suffering of Cluster Headache Syndrome

It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure 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 family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a