Full-Blown Suffering: My Struggle With the Enigmatic Suffering of Cluster Headaches
It was a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.
The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with intense pain around a single eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.
Historical medical texts suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
The disorder were only formally recognised by global 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 that delivers blood to the head. Leading specialists in diagnosing the condition note this.
In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.
Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
