Unbearable Agony: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome

It was a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple 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 took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small 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 portable toilet.

Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

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

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a