Full-Blown Pain: My Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe discomfort behind a single eye that lasts up to several hours.
About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as drunken episodes. Understanding 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 took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, 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 co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.
Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
