Full-Blown Agony: A Personal Struggle With the Puzzling Suffering of Cluster Headaches

It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches usually start with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, 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 deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with occasional attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a