Excruciating Pain: My Struggle Against the Enigmatic Pain of Cluster Headaches
It began on a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid stabs, similar to electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.
The headaches returned repeatedly 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 train, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort behind one eye that persists up to several hours.
About one in 1,000 people suffer by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began 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 worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally 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 illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms 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 documented across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Historical healing texts suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.
In 1998, 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, featured in a major medical publication, showed increased activity of the hypothalamus, 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, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.
The official guidelines need updating to reflect a
