Cluster Headache Triggers and Treatment Hacks for Patients

My episodic cluster headaches started in 2007 when I had my first attack at the age of 18, one year after experiencing SUNCT (Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing).

It was a heartbreaking journey for the first six years, but I managed to tame the beast with the help of Clusterbusters and a great team of medical professionals and treatments.

One of the many, many strange things about cluster headaches is that they morph, or evolve, over time. What works to help you during one episodic cycle, or for a stretch of time as a chronic patient, may not work the next time. So, it’s critical - I repeat, it is critical - that you have several treatments and hacks in your arsenal to call upon when an attack hits you.

Top triggers for cluster headaches

The first way you can prepare to fight back against “suicide headaches,” is to understand your triggers. These are some of the most common triggers for cluster headaches and some treatment hacks that I've learned from other patients along the way:

Alcohol

One sip of an alcoholic drink can trigger a cluster headache attack, wine in particular.

• Treatment Hack: Avoid drinking, but if you want a drink during a special occasion, oral triptans such as frovatriptan, can work to prevent an attack and give you up to 12 hours of “freedom.”

Sleep

It’s a cruel, cruel condition that robs you of your rest. At my worst, I set the alarm for every three hours to prevent myself from entering REM sleep and having an attack. You may feel like a zombie (and you may look like one too).

• Treatment Hack 1: Set your oxygen tank up next to your bed, have it set to the correct flow rate, and the mask at the ready so you can use it right away during a nighttime attack. Learn more about using oxygen to treat cluster headaches.
• Treatment Hack 2: I use oxygen at 5 LPM through a nasal cannula for 20 minutes before bed to avoid a nighttime attack.
• Treatment Hack 3: Set up your abortive treatment (like injections) within arm’s reach.

Elevation

Flights and other sudden altitude changes often trigger attacks too.

• Treatment Hack 1: Oral triptans can work as a preventive in this instance as well. You may be able to avoid the pain (and horror of having an attack on board a crowded plane next to people and flight attendants who don’t understand) by taking it two hours before your plane takes off.
• Treatment Hack 2: Red Bull, 5-Hour Energy, and other drinks that contain caffeine and taurine have an uncanny ability to stop an attack if caught early enough. Many patients (including myself) chug one of these energy drinks or shots when they feel a “shadow" — which is the twinges that often precede an attack — and successfully stop it from progressing. If you have another medical condition such as heart disease or diabetes, this treatment hack may not be right for you.

Other triggers for cluster headaches can include stress (or rather, times after stress where you’re decompressing and relaxing), certain smells, and foods. Each patient is unique. For me, bacon (delicious ?) is a trigger, and I have to avoid it along with alcohol during episodic cycles.

Where to find help for cluster headaches

Many times, medical professionals don’t know how to diagnose cluster headaches, let alone treat the condition. There are great organizations and headache specialists out there that are available to help, which can be found through Migraine.com, National Headache Foundation, Clusterbusters, and many others.

More than that, the people in your life, such as your friends and family members, may dismiss your pain and say hurtful things like “just drink more water.” The cluster headache patient community is remarkable and available day and night in Facebook closed groups and online forums at Clusterbusters.org.

Clusterbusters also has an annual conference just for “clusterheads” every September. Raising awareness for cluster headaches is another valuable way to help yourself and others with this neurological disorder.

These attacks are nicknamed “suicide headaches,” and you’re not alone in feeling defeated by the “beast.” It doesn’t have to win, and there are other clusterheads available to make sure you’re not in this fight by yourself. All you need to do is reach out.

Editorial note: Please always confirm oxygen treatment guidelines with your healthcare professional.