Excruciating Suffering: My Battle Against the Puzzling Pain of Cluster Headache Syndrome

It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind a single eye that persists up to several hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts 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 observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a