Full-Blown Pain: A Personal Fight Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around one eye that lasts for three hours.
About 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking 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 family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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 earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical medical texts suggest bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted 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. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and medication until the attack passed.
National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.
But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. 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 activity.
The national guidelines need revising to reflect a
