Full-Blown Pain: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition often begin with intense pain behind a single eye that lasts for three hours.
About one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks usually start with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, 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 robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing records propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.
In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one 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 delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the episode passed.
National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a