Learning to live with cluster headaches takes a lot of time. You lose a piece of yourself with each attack. The pain is so searing that you want to forget about it as soon as it’s over, but it’s not over. The next cluster headache attack is just a few hours away, causing fear, anger, and depression to sink in. Only you can choose when it’s time to fight back.
It’s easy to be a victim of this incurable disorder, but it becomes more bearable when you decide it doesn’t define. Now, I know it’s not this easy for chronic clusterheads. Being episodic gives us the opportunity to feel “normal” for a portion of the year because we’re in a cluster headache remission, but chronic patients seem more resilient than many episodics I’ve met. How? By making the most of the pain-free time—whether it’s hours, days, weeks or months.
Many of you know I recently published a guidebook to cluster headaches for patients, supporters and medical professionals. It took three years of interviews and research to compile the book that goes into details about what an attack feels like, the difference between cluster and migraine, treatment options, and tips on how to cope with “suicide headaches.” However, most of that work was done in just six months.
I had to put the book away several times because the cluster headaches came back each time I made progress, but over the last summer, I realized it was time to put away my fear and capitalize on my remission period. I spent every free moment working on the book for four months because I knew if I didn’t do it before my next episodic cycle, it would be another year or two before it was completed. Now, as I enter week three of my fall cycle, I’m so glad I pushed myself to finish this project and a few others before the pain set in.
I’ve heard a lot of episodics, including myself, say that they do every activity they can during their remission. For several weeks or months a year, cluster headaches take over your life, so when you’re finally free, you feel that the world is at your fingertips.
Here are a few tips I’ve learned over the years:
Pick a Project to Focus on or Complete Before the Remission Ends
My project this year was to finish the cluster headache book before my remission ended a few weeks ago. It kept me driven and focused, which left little time to dread the upcoming pain. Being able to dive into a project such as a book, event participation such as Clusterbusters conferences, etc. made the last few months less nervewracking. I knew I had a timeline and that pushed me to do as much as I could before the inevitable happened. I’m not the only one to do this. Making the most of your pain-free time is something many of us try to do. We may be sick (whether episodic or chronic), but it doesn’t have to define us. Think about what you’re passionate about, be it something cluster headache related or a subject more personal and close to your heart.
Give Yourself Something to Look Forward To
My cycles last nearly three months, and it’s around month two (usually December) when I really start to struggle. I try to look forward to something such as being able to go out to dinner without worrying about injections and being away from oxygen. I look forward to drinking red wine again, and bacon. Bacon is a big trigger for me, but it’s also one of my favorite foods. What I look forward to most is the clarity of mind that comes when the cycle finally ends. I can rejoin the world and be social again. I used to fly to see a friend in California at the end of each cycle, which was my favorite thing to look forward to. Each of us is different though.
You’ll need to find what inspires you most to keep going when the cluster headache “beast” is knocking on your head at 2 am each night. I’m looking forward to diving into finishing my fiction book (a fantasy novel about being stuck between life and death) in January. I know better than to put pressure on myself to do anything during this cycle. I also look forward to Headache on the Hill because it’s typically a month after my fall cycle ends.
It’s Okay if You Don’t Get it Done, Just Start
You don’t have to paint the Mona Lisa, write the next bestseller, or anything grandiose. Additionally, it’s more than okay if you don’t finish. Starting the project (and not feeling bad about pressing pause!) is the hardest part. It took me three years to complete the book for a reason. I went from working on it full-time for six months, to juggling a 40-hour work week and the book, to handling a 40-hour work week, the book and cluster headaches. It’s impossible to deal with everything life throws at you and finish your goals at the same time. Don’t feel bad that it’s not done, just start.
I hope this is helpful to other episodic clusterheads, and maybe some chronics too. Cluster headaches don’t define you. You have talent and skill that shouldn’t go to waste when you’re not in pain.