Surviving Well with Chronic Cluster Headache Disease

Cluster headache disease can be episodic or chronic. While the primary symptoms are the same, the chronic version can have different presentations that make it tougher to manage.

How is episodic different than chronic?

With episodic cluster headache, a person gets at least a 3-month remission every 12 months. The person is considered chronic if the remission is less than three months. During remission, a person typically does not experience attacks, nor will triggers trigger an attack. Chronic cluster headache patients do not get this remission. Without preventatives, they can experience at least one attack every other day; some experience 8+ attacks per day, every single day. 15% of cluster headache patients fall into this category, so in a rarer diagnosis, this isolates patients even further.

Daily management

Managing chronic cluster headache disease is daily management for me. It begins first thing in the morning with gammaCore (which I use three times per day - morning, noon, and evening). I take D3 and its cofactors at noon every day. Because I have chronic cluster headaches, there is no FDA-approved medication, so I have to get options for migraine. After being on Aimovig for 3.5 years, I recently switched to Qulipta. With the help of Clusterbusters, I have also learned about alternative medications. I manage my allergy symptoms which trigger my trigeminal nerve. A single preventive approach did not work for me, but finding the right combination of treatments has made a huge difference. However, managing the symptoms is only one piece of this jigsaw puzzle.

Tips for the daily toll

The emotional toll of cluster headache plus the chronic experience can be overwhelming finding ways to manage everyday life is critical. A few things that help me:

The right doctor

Have a doctor who understands and is willing to think outside the box and help you build your toolbox with preventive, abortive, and rescue options. Having a doctor that believes you, validates you, and works with you to try to find options that will help you increase your quality of life is valuable.

A strong support system

Have a support network. When you have people to reach out to, who check in on you, it can help with the isolation this disease brings. People who understand make such a difference. If you don’t have a support system now, reaching out online to a group can help you start to connect to others who get it. Clusterbusters has support groups via Zoom.

Practice self-care

Self-care. Finding ways to enjoy life when I can in ways I can. The PTSD cluster headache brings is devastating. Being trapped in the nightmare of being chronic is beyond comprehension. Imagine living in flight or fight mode and never getting to rest. This is what a chronic warrior experiences. Not only is the pain excruciating, but the autonomic system activates, and the person is extremely restless. Therefore, it is exhausting beyond belief. Finding things to do that relax the autonomic system and help you rest and restore between attacks is necessary.

Find a balance

Balance. As a parent, how I am feeling can determine what I can do with my kids. Instead of going to a movie theater, we may pop popcorn and snuggle on the couch. I may not have the energy to go out of the house, I may not be presentable, or I may be too terrified of having an attack to leave because I don’t want to have an attack in public. So navigating other ways to enjoy family time and honor the balance you need to feel safe is important.

Cluster headache is complex

There is no simple way to navigate and survive well with chronic cluster headache. This disease is complex and insidious. However, having people who can help support you and help you come up with ideas of things to help you adjust your life to take the stress down can make a difference in your quality of life. Recently I took a biofeedback course with the Danielle Foundation, and while it’s not a quick fix, it has taught me how to rest my autonomic system for 5-15 minutes a day. Learning tips and tricks, no matter where you get them from, can help. Every small thing you can do for you can help.

What do you do?

What have you learned to do for yourself to manage your chronic cluster headache disease better? What do you wish you could do, and what would it take for you to do that for yourself?