Full-Blown Pain: My Fight With the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.
About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of long pain-free periods.
What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
One patient, 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 hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical medical texts propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading experts in treating the disorder explain this.
In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.
Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
