Full-Blown Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headaches

It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Multiple 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 attacks returned frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain behind one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies 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 writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, 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.

In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. 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 hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. 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 activity.

The national guidelines need updating to reflect a