Full-Blown Suffering: A Personal Battle Against the Enigmatic Pain of Cluster Headaches
It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. 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 returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort behind a single eye that lasts up to three hours.
About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Ancient healing records suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. 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 officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition note this.
In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.
Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.
But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.
The national guidelines need revising to reflect a
