Excruciating Agony: My Struggle Against the Puzzling Suffering of Cluster Headaches

It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man'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 underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. 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 decreases nerve signals.

The national guidance need revising to reflect a