Unbearable Suffering: My Battle Against the Enigmatic Pain of Cluster Headache Syndrome

It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. 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. Drinking in her teens, similar to many causes, made things worse. After drinking 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 behavior. Understanding eventually came from her parent 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 hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a