Cluster Headache: What It's Like to Live with Unrelenting Attacks

Dubbed the “suicide headache,” this disorder can bring on weeks or months of severely painful attacks. How they occur and which medications may help.

Cluster headaches. They cause excruciating pain, may not respond to medication, and are even known as “suicide headaches” because individuals who get them are in such tremendous discomfort that they may contemplate ending their life. Fortunately, cluster headaches are not common. But for those who have them, finding the right treatment is a challenge to say the least.

How Often Cluster Attacks Can Occur

About 1 in 250 men and 1 in 700 women experience cluster headaches, according to Lawrence Robbins, MD, of the Robbins Headache Clinic in Riverwoods, Illinois, and the author of the book, “Advanced Headache Therapy: Outpatient Strategies.”

“While migraine is more common in women, cluster headache is more common in men,” he says. “About 10 to 15% of people get chronic clusters where you don’t get a break for one or two months, but most people have episodic clusters where you get a break. The headache comes and then goes away. If you are lucky, you can have years between the cluster cycles.”

Cluster headaches are characterized by very severe pain that can last from 15 to 90 minutes, sometimes longer, and typically is located around or through one eye or on the temple. A series of cluster headaches can last from several weeks to several months and occur once or twice a year. In addition to pain, individuals may experience symptoms of nasal congestion, forehead and facial sweating, nausea, and tearing of the eyes.

Cluster headaches are much less common than migraine headaches, says Noah Rosen, MD, director of Northwell Health’s Headache Center in Great Neck, New York. “It is more common in younger people and, while there is not a strong family component, about 1% of people with cluster headache have a family member with it,” he says.

Cluster headache most likely has a genetic risk, Dr. Rosen says, and although most studies suggest the prevalence is less than 1 in 1,000, there is approximately 10 times that risk if someone has a first-degree relative who gets cluster headaches. “What sets off individual cycles is the matter of much debate, although many patients note a seasonal component and a risk with use of alcohol,” he says.

They are called cluster headaches because they occur in cyclical patterns, and the frequent attacks of headaches, which are called cluster periods, last from weeks to months. These periods are followed by periods of remission during which no headaches occur.

While cluster headache is rare, living with the condition is a daily struggle. (Source: Unsplash)

Treatment Options for Cluster Headache

Certain medications can help to reduce the number and severity of cluster headaches a person experiences. Common first-line treatments include inhaled oxygen, injections of Imitrex (sumatriptan), and the nasal spray Zomig (zolmitriptan), says Dr. Robbins.

There also are a number of preventive medications that may be used. A newer drug called Emgality (galcanezumab, a calcitonin gene-related peptide antibody), given as a self-injection once a month, is the first medication to be prescribed specifically for the prevention of cluster headache. Cortisone (usually prednisone) may be prescribed, says Dr. Robbins, along with Verapamil, a calcium channel blocker typically used to treat hypertension, angina, and various heart rhythm disorders. Occipital (back of the head) nerve blocks may help, Dr. Robbins adds, as might injections of onabotulinumtoxinA (Botox), extensively used as a migraine preventive.

Aside from medications, there’s not a lot to offer to those who suffer from cluster headaches. According to Dr. Robbins, relaxation methods and biofeedback (a self-managed technique used to control your body’s core functions) are not as effective in general as the pain with this condition can be severe. Some individuals try icing the area and others say that heat is effective. In general, an individual experiencing a cluster headache attack feels better when moving around, even pacing, rather than lying in a darkened room as someone with a migraine often does.

Practical Takeaways: Meds & More that May Help Relieve Cluster Headaches

  • Emgality (as a preventive)
  • Imitrex (for acute attacks)
  • botox injections
  • cortisone injections
  • Verapamil (a calcium channel blocker)
  • occipital nerve blocks (back of the head)
  • heat/Ice
  • oxygen therapy
  • movement and pacing exercises.

Talk to your doctor or headache specialist about which approach or combination of approaches may be best for you.

Richard's first cluster headache lasted 40 minutes.

 

Trying to Function with Cluster Headache

Finding what works can be an arduous process for those with cluster headaches. Richard Feldman, a trial attorney, was in a meeting with some colleagues one day some 13 years ago when he suddenly got a terrible pain behind his right eye. Before long, in addition to the extreme pain, his right eye was tearing, his nasal passages were clogged, and he finally had to leave the conference room. That headache, his first cluster headache, lasted 40 minutes.

He went to the internist, and then to a neurologist who diagnosed cluster headache. He was prescribed Verapamil and, while it helps his pain somewhat, it doesn’t fully eradicate it. Richard now gets a cluster headache attack a couple of times each year that can go on for a couple of months.

“I have intense pounding in my head that feels like someone is taking a knife and stabbing you,” Richard shares. “It lasts for about 40 minutes.”

A Multitude of Treatments

Melanie Katsur, an attorney living in Alexandria, Virginia, has tried a lot of things for her cluster headaches but so far, she has not found the right combination of medications to relieve her pain.

“Nothing compares to the pain of a cluster headache,” she shares. “When I am in a cluster cycle, I have level three to five pain that feels like a shadow behind my eye all the time, but when I have a cluster headache, it is a 10-plus. The headache usually lasts anywhere from 15 to 45 minutes—sometimes longer. Oxygen can help bring down the bad pain but it does not relieve the three to five level pain.”

While Melanie has tried a lot of treatments, she says nothing has been particularly successful.

“It is a struggle every day,” she adds. “I do work on a flex-time schedule. My firm is very accommodating and lets me work from home if I need to. There are times, however, when the pain prevents me from working at all. I can’t handle heat and when it gets too hot outside, it triggers my cluster headaches.”

Melanie receives substantial help and support from her parents, her sister, and even her dog. Although in the five years she has been getting cluster attacks, she has tried a variety of medications, at this point the only medication she takes specifically for cluster headaches is a prescription nasal spray.

“I’ve had to learn to grit my teeth and carry on,” she says. “On the really bad days, I just don’t function. I used to be very social and an athlete, but now I just go to work and go home. Obviously, cluster headaches have been incredibly challenging, and I continue to search for treatments that will provide relief.”

 

Updated on: 06/01/20
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