Unbearable Suffering: My Struggle Against the Enigmatic Suffering of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe discomfort behind a single eye that persists up to several hours.
Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.
Nevertheless, the failure to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for 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 winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Historical healing texts propose unusual treatments for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the disorder note this.
In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.
National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts 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 discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
