It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. Then came rapid stabs, like 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 staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.
Approximately one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.
Historical healing texts suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.
But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
Milan is een ervaren opticien met een passie voor visuele technologie en klantgerichtheid.
