Unbearable Pain: A Personal Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick stabs, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe pain around a single eye that persists for three hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient 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 symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple 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 facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient medical texts suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the condition explain this.
In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.
Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.
But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.
The official guidance need revising to reflect a
