Full-Blown Suffering: A Personal Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came quick stabs, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.
The attacks returned frequently that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically begin with intense discomfort around one eye that persists up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with abrupt, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.
Historical medical records propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial comprehensive account 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 classified by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, researchers published the findings 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 journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack passed.
National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.
But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
