Excruciating Suffering: My Fight With the Puzzling Pain of Cluster Headache Syndrome
It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by quick stabs, 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 worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with severe discomfort around one eye that lasts for several hours.
About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of long pain-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties 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 facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.
Historical healing records propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in treating the disorder explain this.
In 1998, scientists released the findings of a study 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 circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.
National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with occasional attacks are handled with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.
The official guidelines need revising to reflect a
