Full-Blown Pain: My Struggle Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with increased 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 paracetamol, but the pain remained unrelenting.
The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with severe pain behind a single eye that lasts for three hours.
About 1 in 1000 people suffer by the disorder, and males are more often affected. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started 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 condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Still, the failure to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder explain this.
In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.
Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some individuals.
But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
