It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense pain around one eye that lasts for several hours.
Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with sudden, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, 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 neurology center.
Still, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Historical medical records propose bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially classified 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 issue with a key artery that supplies blood to the head. Prominent specialists in treating the disorder note this.
In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches 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 discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
Elara is a seasoned writer and digital storyteller with a passion for exploring diverse literary genres and empowering others through words.
