Full-Blown Agony: A Personal Battle Against the Mysterious Suffering of Cluster Headache Syndrome

It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came quick shocks, like electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation 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 neurologist and I was diagnosed with cluster headaches.

This condition often start with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a