Unbearable Pain: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, 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 school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain around a single eye that persists for several hours.
About one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support eventually 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 office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.
Ancient healing texts suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.
In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with occasional episodes are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
