Unbearable Agony: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a overcast Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.
The headaches returned frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense pain behind a single eye that persists for several hours.
About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.
Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode passed.
Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.
But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
