Excruciating Agony: My Struggle With the Enigmatic Suffering of Cluster Headaches
It was a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The headaches returned frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with severe discomfort behind a single eye that lasts up to three hours.
About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.
What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “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 childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.
Historical healing records suggest unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.
In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.
Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.
But consultant neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.
The national guidance need updating to reflect a
