When it comes to pain, there are many varieties—and headache sufferers are intimately familiar with all of them. There is the persistent, dull ache. The sharp, stabbing sting. The relentless, steady drum. But few headache varieties are more painful than cluster headache, a rare neurological disease defined by cyclical, “clustered” attacks.
Frederick G. Freitag, DO, osteopathic physician and vice president of the National Headache Foundation, has treated thousands of cluster headache patients during his career. After 27 years at the Diamond Headache Clinic in Chicago, Dr. Freitag recently became the medical director and director of headache medicine research for the Comprehensive Headache Center at Baylor Health Care System in Dallas.
In the past, he has been involved in drug research for cluster headache and has worked with organizations, such as ClusterBusters, to help spread the word about this excruciating headache disorder. He recently sat down with Head Wise to discuss cluster headache and what can be done to treat it.
Head Wise (HW): Tell us a little about cluster headache.
Dr. Freitag: Cluster headache is considered one of the primary headache disorders. It has been thought to be akin to migraine. In fact, for years, it was called “red migraine.” Cluster attacks are very different, though. They are a disorder that we believe to be related to a dysfunction in a small gland called the hypothalamus. This is, in essence, the Pentium chip for your brain because of how it controls a variety of things, including pain modulation and the autonomic nervous system.
HW: Who does cluster headache most commonly affect?
Dr. Freitag: From the newer epidemiologic studies, it is still a male predominant disorder. It’s about the reverse ratio from migraines. So 70 percent of all migraine sufferers are women—about 70 percent of all cluster headache sufferers are men.
HW: How can people learn to recognize cluster headache?
Dr. Freitag: It’s a much more severe pain than we typically associate with migraine. It’s usually located primarily in the eye and temple region. Many people will describe it as feeling like a hot, burning poker is being run through their eye. Thankfully, the pain is relatively brief in comparison to migraine. For patients with cluster headache, the attacks usually last 15 minutes to several hours, and they occur in groups, or bunches. They occur all together and then, as fast as they came on, they’re gone until the next cycle of cluster headache, which can be anywhere from a few months to 20 years later.
HW: What differentiates cluster headache from migraine?
Dr. Freitag: The intensity of the pain. The strict one-sidedness of the attack. The tendency for headaches to occur in these bunches and then disappear for long periods of time. Most patients with cluster headache don’t get nauseous, don’t vomit and don’t get visual auras before their attacks. They do get intense nasal congestion and a runny nose. They get a red, watery, teary eye and a droopy eyelid on the side of the headache. They get flushed in the face and sweat when they have their attacks—as compared to migraine sufferers, who look pale and sickly. Cluster sufferers’ behavior during attacks is also dramatically different. While patients with migraine retreat to a dark, quiet place, cluster headache sufferers rock back and forth. They pace. They hold their head. They pound their head on the floor. They put pressure on their head to try to stop the pain.
HW: What causes cluster headache?
Dr. Freitag: We don’t know what the cause is. It doesn’t seem to have the same kind of genetic predisposition as migraine.
HW: Does this make the condition difficult to diagnose?
Dr. Freitag: The biggest problem is that the symptoms may lead inexperienced physicians astray. When patients have cluster headache, they get intense nasal congestion and a runny nose. So the inexperienced physician might think this to be allergies or sinus headaches, and they may prescribe patients a course of antibiotics. Because of the cyclical nature of cluster, patients take the two to four weeks of antibiotic, and at the end of that time, their clusters are gone. But it’s not because they resolved a sinus infection.
HW: What’s the best course of treatment?
Dr. Freitag: There are no good techniques we know of that lend themselves to a natural course of treatment. Cleaning up one’s act, avoiding caffeine, avoiding alcohol, quitting smoking, keeping a regular schedule—those kinds of things, generally speaking, don’t help cluster sufferers gain freedom from their attacks. They really have to rely on medications.
HW: What medications do sufferers take?
Dr. Freitag: Cortical anti-inflammatory steroids will oftentimes stop a cycle of cluster headache within a matter of 24 to 48 hours. But if you just do that, as the dose is reduced, the clusters come back. So we often couple that with a medicine known as a calcium channel blocker—a drug called Verapamil. It’s been around for two decades now. It’s used in migraine, but it is a drug of first choice for patients with cluster. Anti-seizure medications like Depakote, Divalproex and Topiramate are also extremely useful. And an old antidepressant medication called Doxepin can be extremely useful for stopping a cycle of cluster headache.
HW: Are there any promising new treatments on the horizon?
Dr. Freitag: There has been some interesting stuff done out of Harvard where they have looked at hallucinogenic mushrooms as a treatment. There’s work being done to try to synthesize the chemical in mushrooms without the hallucinations and other problems. We shouldn’t be surprised that these work. When we look at one of the drugs that was the mainstay for treating cluster for about 40 years until it went off the market—Methysergide—it is a chemical cousin to LSD-25. They are all in the same chemical family. So if researchers could find the right one, they might have themselves a very successful therapy.
HW: When do cluster sufferers need to see a doctor?
Dr. Freitag: If they’re getting what seems like cluster headache—brief, very intense headaches, watery eye, red eye, runny or stuffy nose—they need to see somebody. And if they don’t get prompt, accurate diagnosis and treatment, they need to seek out a neurologist or headache specialist to start properly addressing their condition. The devastation of these attacks on people’s lives is tremendous, and the therapeutics are highly effective for the majority of patients.
HW: If you could tell cluster sufferers one thing, what would it be?
Dr. Freitag: Find a doctor who understands what cluster is and gives you treatment that works quickly and successfully. That way, you have your quality of life restored without the fear of what’s going to happen when the next bout of cluster headache hits.
