Unbearable Suffering: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with intense discomfort around one eye that lasts for three hours.
About 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of long pain-free periods.
What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to organize life around erratic pain took its toll. She particularly 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 paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in treating the condition explain this.
In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.
Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.
But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short cycles with infrequent attacks are handled with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a