Unbearable Suffering: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome

It began on a overcast Monday in the 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 rapid shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind one eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

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

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable pain took its effect. 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 incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released 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 major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a