Full-Blown Suffering: A Personal Battle Against the Puzzling Pain of Cluster Headache Syndrome

It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain behind one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “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 worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional episodes are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. 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 activity.

The national guidance need revising to reflect a