Full-Blown Pain: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome

It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort behind one eye that lasts for several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

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 intense headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, 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 dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a