Unbearable Pain: My Fight With the Puzzling Pain of Cluster Headaches
It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks returned frequently that fall, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense discomfort behind a single eye that lasts for three hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.
What unites 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 discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially hated 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 paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.
In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.
But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
