Full-Blown Pain: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome

It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, 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 fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, 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 small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 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 molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a