Create a Safe Space for Riding Out Cluster Headache Attacks

Trigger Warning:The content includes information related to mental and emotional distress and it might be upsetting to some people.

Cluster headaches don’t care if you’re at work or on vacation. They are particularly good at hitting while you’re in a deep sleep. Understanding your needs and what works for you will help you create a safe space at home and on the go to ride out your next cluster headache attack.

Keep your treatments in a variety of places

The most common and effective cluster headache treatments are sumatriptan injections, nasal spray, and high-flow oxygen. Depending on which of these options works best for you, you’ll want to stash them in multiple places. For example:

• Have a variety of oxygen tank sizes such as 1-2 large tanks in your bedroom and 3-4 small tanks that can go in your car with you or near your desk at work.
• Fill your prescriptions as often as you can. That way you can have your injections or nasal spray at home in the fridge, in your purse or glove compartment, and in a desk drawer at work. This strategy works well for episodic “clusterheads” because you can save up your medication when you’re out of cycle.=

Make any location attack-friendly

I have ridden out attacks in some strange places—the most awful being a funeral for an Aurora theatre shooting victim. Most often, it was my car where I would pull over and get in the backseat. I could kick at the door to distract from the pain, blast a hard rock song to sync up with the knife in my head, and attempt to avoid onlookers. Another common location for me is the nearest bathroom. When I was new to cluster headaches, I would run the tub water scalding hot and put my feet in as a distraction from the pain. Now that I always have sumatriptan injections on me, I pace the bathroom or rock back and forth while waiting for the medication to work.

A few tips for creating a safe space in any location:

1. Grab your treatment. Grab your portable oxygen tank and mask or your medication. Many clusterheads chug an energy drink or energy shot containing taurine and caffeine to help stop an attack.
2. Find isolation. Most people with cluster headaches prefer to be left alone. That’s because watching an attack is scary for onlookers, and we find ourselves feeling guilty on top of the immense pain. Find a room, a bathroom stall, or go to your vehicle if you prefer to avoid people.
3. Make sure someone knows where you’re going. If you’re at work, you may need to tell an understanding coworker that you’re having an attack and will be back when it’s over. The same goes for a social gathering. Cluster headaches can last 15 minutes to 3 hours, but the most common length is around 45-90 minutes.

Building your safe space at home

Whether you have a 3-story house or a studio apartment, having a safe space during cluster headaches is essential. “Suicide Headaches” are a nickname for cluster headaches. It’s common to have suicidal thoughts during an attack, which is why I have never owned a gun, but a power drill was tempting in my early years with the condition. Your safe space should have your cluster headache treatments within reach (oxygen, injections, energy drink, etc.) and be free of dangers to your person. A few things I’ve heard from other clusterheads about their safe space for an attack include:

• Oxygen tank with a regulator as high as 25 liters per minute and non-rebreather mask
• A reminder that this too shall pass (One friend of mine hangs a Clusterbusters poster from a patient conference with signatures and messages from other clusterheads to hang in there.)
• Ice packs, hot sauce, energy drinks, or any other treatment hacks that work for you

Returning to the world after an attack

The comedown can bring complete clarity or a hazy return to society. Your body is drained and recovering from the shock of the sudden onset. Sumatriptan and other medications can have lingering side effects. Be gentle with yourself, and emerge from your safe space when you’re ready. Talk with family, friends, or coworkers only when you feel up to it.

Finding support

Your safe space for riding out cluster headaches may include all of these tips or very few of them. What’s most important is that you have an area to go to that allows you to treat the attack in a safe environment. If you reach a point where you can’t handle it anymore, reach out to another clusterhead for help. There are many ways to get support, such as Facebook groups, online forums, and in-person support groups around the country.

Mental health resources

Suicide hotline representatives are supposed to be trained on how to handle calls about cluster headaches. If you experience suicidal ideations, call the National Suicide Prevention Lifeline 1–800–273–TALK (8255) or Live Online Chat and say you have cluster headaches. If you live outside of the U.S., use this link to find the suicide prevention line in your country: Suicide Prevention Worldwide. To get general information on mental health and to locate treatment services in your area, contact SAMHSA Treatment Referral Helpline – 1–877–SAMHSA7 (1–877–726–4727)