Excruciating Pain: A Personal Struggle Against the Mysterious Suffering of Cluster Headaches
It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. It was followed by rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Four 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 paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation 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 often start with severe discomfort around one eye that lasts for three hours.
About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks usually begin with abrupt, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis 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 remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient medical texts propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in treating the condition note this.
In the late 1990s, scientists 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, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.
Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
