Unbearable Suffering: My Fight With the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came quick shocks, like electric shocks. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe discomfort around one eye that lasts up to three hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks usually start with abrupt, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, 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 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 across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.
Historical healing records propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
The disorder were only officially classified by global medical societies 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 supplies blood to the head. Prominent specialists in treating the disorder note this.
In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
