Excruciating Pain: A Personal Fight With the Mysterious Pain of Cluster Headaches

It began on a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks typically start with sudden, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began 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. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent episodes are handled with abortive treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a