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

It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain behind one eye that lasts up to several hours.

About one in 1,000 individuals are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical records propose bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global 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 that supplies blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. 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 discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many 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