Unbearable Agony: A Personal Battle Against the Mysterious Suffering of Cluster Headaches

It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by rapid jolts, similar to electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind one eye that lasts up to three hours.

About one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a