Unbearable Agony: My Struggle With the Mysterious Pain of Cluster Headache Syndrome
It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe pain around a single eye that persists for several hours.
About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of extended pain-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value 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 experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient healing texts propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.
But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
