Unbearable Agony: A Personal Fight With the Enigmatic Pain of Cluster Headache Syndrome

It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense pain around one eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable 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 simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a