Unbearable Suffering: A Personal Battle Against the Enigmatic Pain of Cluster Headaches
It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The attacks returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense discomfort behind one eye that persists up to several hours.
About 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks usually start with sudden, severe agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.
One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation 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 significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.
Ancient medical texts propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.
In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode passed.
Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with abortive therapy only. Longer or more severe 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 discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
