Unbearable Agony: My Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain behind a single eye that persists up to three hours.
About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started 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 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 mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.
Ancient medical texts propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally recognised by international medical 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 blood vessel that supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.
In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician researched his complaints.
Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.
But leading neurologists believe the guidance 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 cycles with occasional attacks are handled with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a
