Full-Blown Pain: My Fight With the Enigmatic Pain 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 class, when a sudden pain bloomed behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe pain behind one eye that persists up to several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.
One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst 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 attack inside a portable toilet.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.
Historical medical records propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.
In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.
Official guidance on treatment advise 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. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.
The official guidelines need revising to reflect a
