It’s the time of year that most people look forward to starting January 1. Orange and black Halloween decor has been replaced with the natural tones of Thanksgiving and aisles are filled with red stockings. If you have cluster headaches, this is probably the worst part of the year for you. At least, it is for me. I’m episodic, which means I’m healthy for most of the year and struck down by the attacks for about two to three months. Those months are the end of October, November, December, to mid-January.
While most people are excited to start decorating their houses, I’m taking stock of how much medication I have and if I need more oxygen tanks to get me through. Other men and women my age are looking forward to traveling home, and so am I to an extent. But I’m stopped by the memory of that time I was so medicated over Thanksgiving that I barely remembered any of it. Or, that time I had a K10 attack on Christmas day (I was also told I was faking it) and couldn’t make it to our family gathering until several hours later. Another time, I missed my close friend’s wedding ceremony on New Year’s Eve because I was on oxygen at home.
Those are just a few of my tainted holiday memories. I’ve been able to fight back against this current cycle (which started mid-October) and have managed to evade about 90% of the attacks with my ongoing treatment—but I know I can’t depend on that for long. You see, nothing works forever. It’s like our bodies build up an immunity or the disorder evolves with it. Late fall and winter seem to be the most popular season for episodic cluster headache patients to go into a cycle and chronic patients may even go into what’s called a “high cycle” where their number of attacks double. I know I’m not the only one who’s afraid of Thanksgiving and Christmas.
It’s hard to let go of that pain and frustration and still hope to be healthy for the holidays. However, there are a few steps you can take to prevent cluster headaches from destroying your holiday cheer such as:
1. Don’t Forget to Pack Your Meds
Whether you’re staying at home or traveling to see family and friends, your meds and access to oxygen are the most important aspect of surviving the holiday in an episodic cluster headache cycle. I for one stock up on sumatriptan injections throughout the year to make sure I have enough to get me through, but I worry about sumatriptan medication-overuse and rebound headaches. That makes oxygen my favorite holiday friend.
It’s pretty easy to take a few E tanks with you if you’re driving, but flying is tricky. You’ll have to set up a time to pick up at an oxygen supply center in the town or nearby city of where you’re visiting. Amtrak has a specific (and might I add cozy) area for people traveling via train with oxygen. Also, make sure you do this as soon as possible in case your prescription for your medications is out of refills.
2. Be Prepared for Insensitive But Well-Meaning Remarks
Someone—your brother, sister, mother-in-law, or aunt—is going to ask if you’ve tried yoga, acupuncture, massage, essential oils, going to church more, Excedrin, Tylenol, that new, lame Daith piercing or being vegan. Because one of those options worked for a headache they had five years ago. This makes your blood boil as they obviously haven’t done any research into what cluster headaches actually are and are pulling this information from a pseudo-hippie blog they read last week. Try not to cry or yell at them (I know it’s hard). Save your energy for the one who tells you to suck it up and come to dinner while you’re having a K7 and are still bleeding from the injection you had to give yourself.
Your Aunt Sasha is probably going to talk about how she has migraines, so she understands—In her defense, she understands the misunderstanding from your other family members because all the accidentally-insensitive or purposely-rude comments were directed at her last year. She’s most likely the only one in the room who can see from your perspective. Remember to respect her pain, and she’ll respect yours.
It’s your choice how you react, but keep in mind that kind words land harder than loud ones. Tell them:
- These are not headaches, but a form of Trigeminal Autonomic Cephalalgia and classified by the VA as nonconvulsive epilepsy.
- The pain is more severe than childbirth, amputation without anesthesia, gunshot wounds, and kidney stones. In fact, cluster headaches are so downright excruciating that the rate of suicide attempts is 20 times the national average in this patient community. “Suicide headaches” are nothing to mock or joke about. Explain that the pain is completely different than that of a tension-type headache or a migraine. It’s an unrelenting stabbing in your eye and temple which is your personal version of hell.
- You’ve tried many of the outlets available to find relief through abortive and preventative medications and even some alternative treatments. Heck, you’ve probably tried some of the wacky suggestions they gave you.
- The best thing they can do for you is to make sure you have access to your abortive medication and oxygen tank at all times, and that you’d like to be left alone during an attack.
- Your triggers, which are typically alcohol, changes in air pressure, times after stress, elevation, heat, and sometimes foods such as bacon. That way they can help you avoid them and alter a certain recipe so you can enjoy it too.
3. Bring Backup Information on Cluster Headaches
There are a thousand things you want them to understand, but they won’t believe it until someone else tells them. You can cry and scream in pain, and while they think you’re uncomfortable, they see you as being dramatic. This is precisely the situation that prompted me to write Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. The book is first and foremost a thorough resource for patients, but it’s also for your family members, friends, and physicians to learn from. Chapter 7—How to Support a Clusterhead: Five Ways to Make Our Lives Easier—is a great and necessary read for your loved ones who are struggling to understand what you go through each year, especially around the holidays. It could be the perfect Christmas gift for the friend or family member who has tried to be supportive but needs to know more.
I hope you have a wonderful Thanksgiving and holiday season, and that your attacks are few and far between (or even better, no attacks!).
Ashley S. Hattle