Unbearable Pain: A Personal Fight Against the Puzzling Pain of Cluster Headaches

It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks typically start with abrupt, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, 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, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She especially 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 worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Prominent experts in treating the condition explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a