Excruciating Pain: A Personal Fight With the Enigmatic Suffering of Cluster Headaches

It began on a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, 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 simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published 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 reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are handled with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a