Unbearable Pain: A Personal Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation bloomed behind my one eye. Then came quick shocks, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense pain behind one eye that persists for three hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches typically begin with sudden, excruciating pain 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 associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.
Historical healing records propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder note this.
In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.
Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.
But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The national guidance need revising to reflect a
