Unbearable Suffering: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. It was followed by quick shocks, like lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain behind one eye that lasts up to three hours.
About one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. 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 family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the failure to organize life around unpredictable attacks took its effect. She particularly hated 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 incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Ancient medical texts suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.
Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are handled with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
