Excruciating Pain: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense pain around a single eye that lasts for several hours.
About 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical 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 neurology center.
Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.
Historical medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted 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. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode passed.
National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some people.
But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
