Unbearable Pain: My Struggle With the Mysterious Pain of Cluster Headache Syndrome
It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. Then came quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with intense discomfort behind a single eye that persists up to several hours.
About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.
Ancient healing records propose unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition note this.
In 1998, researchers 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 hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.
National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
