Excruciating Pain: My Battle With the Puzzling Pain of Cluster Headache Syndrome

It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. This was followed by quick shocks, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony 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.

Cluster headaches often start with intense pain behind one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began 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 symptoms worsened through her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties 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 portable toilet.

Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading specialists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a