Full-Blown Agony: A Personal Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.
The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe pain around one eye that lasts for three hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.
What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to plan life around erratic pain took its effect. 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Historical healing records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.
In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, 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 dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.
Official guidelines on treatment recommend that sufferers 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 a blood pressure medication, which apparently helps manage the attacks of some individuals.
But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
