Living Well with Cluster Headache
Bob Wold, Founder, Clusterbusters
On This Page
Cluster headache can feel isolating, but there is a community that understands.
If you are reading this, you already know what these headaches can do. You do not need anyone to convince you that they are serious. What you may need, and what we want this page to offer, is a little company on the road and a few things that have helped the rest of us keep living a life worth living in between the attacks.
So let's talk about how to deal with cluster headache day to day. Not just the medicine and the oxygen, but the actual day to day of being a person who happens to carry this.
Key Takeaways
Everyone is different. Your cycles, your pain levels, and what helps are yours alone, and you never owe anyone proof of your pain or an apology for it.
Don't let fear take more than the clusters would have taken on their own. Life's best moments still happen in between attacks, and they are worth going after.
A cluster headache diagnosis affects the whole family, and the care partners who stay deserve real respect.
Cluster headache can produce genuine PTSD symptoms, including a kind that keeps recurring because the trauma keeps recurring. Reaching out for help is strength, not weakness.
Build a written plan, share it with the people in your life, and reintroduce yourself to the things you love. You are not alone, and the community is here for you.
A Word Before We Start
When discussing how to deal with cluster headache, including strategies, medications, remedies, methods of coping, it is important to remember that old adage we’ve all heard before, “everyone is different.”
Some of us get cycles that are short. Some get cycles that never seem to end. Some attacks are a 2 and some are a 10, and the same goes for whole cycles. A treatment that worked beautifully last time might do nothing this time around. None of that is a measure of how tough you are.
You never owe anyone proof of your pain, and you never owe anyone an apology for it either. You do not have to rank yourself against the person in the support group whose attacks sound worse, or whose attacks sound milder. You have what you have. They have what they have. What we share is the disease, the way it changes everything. We have the same levels of fear.
And here is something worth holding onto. There is more reason for hope right now than at any point since clusters were first written about back in the 1600s. More research, more treatments, more doctors who actually know what this is, more friends and family who get it. The ground really has shifted in the last fifteen years. Keep that in your back pocket when things feel hopeless.
We are here for you. If you are tired of trying to explain yourself to family or friends or your boss, reach out to someone at Clusterbusters or a friend from the community. One of us will be more than happy to have a chat with them and will “bring the receipts” to the discussion. If you’re not too sure this would help or that no one would want to do that for you, sign up for one of the zoom support calls and bring the subject up.
Pain is Inevitable. Suffering is Optional.
One of our biggest complaints as cluster sufferers is all the things that they take from us. Jobs, relationships, important events etc. Don’t let fear take away more than the clusters would have taken on their own.
If you think about the best times of your life, it’s a collection of memories. A collection of moments.You can still have those moments in between the attacks, before the attacks, and after the attacks. You need to go get them.
Consider when you’ve been asked things like, “how was your vacation?” You rarely describe a trip in totality. No one wants to look at 100 pictures on your phone. But they will look at a couple of those special moments. You mention a long string of fantastic moments. Maybe just a few moments. That 1/2 hour fight you had while fishing and landed that fish you have mounted over your fireplace. If describing your family trip to Disney World, you mention how excited your child was to meet Mickey Mouse. The great meal you had on the Riverboat.
You can still have all of these moments, even if your day is interrupted by clusters. Hopefully you have some reliable abortive. Your family would prefer to have you with them with your oxygen tank than be stuck back home by yourself.Whatever the case, you can always pick yourself up and head back to the beach to where your family is hanging out and build more moments.
PTSD and your Mental Health
Part of living with this honestly is admitting that clusters very often produce real PTSD symptoms. The fears we carry are not something we can just shake off. We would never tell a soldier home from war to "just get over it," and we should not say it to ourselves or to the people who support us either. PTSD is PTSD. Reach out for help, and keep reaching until you find the help that fits.
Researchers are now looking at clusters as a source of something called Complex PTSD. Complex because the trauma is not one event in the past. It is still happening, cycle after cycle. Most PTSD comes after a trauma that is over, and the fear is that it might return. Ours is different. We know, with near certainty, that it is coming back, even if the next cycle is a year away. We cannot promise ourselves it will never happen again, because it will. That is a heavier thing to carry, and it deserves real care.
Society likes to tell us that asking for help is weakness. It is not. It is a necessity, and reaching out takes more strength than going it alone ever did. Surround yourself with people who support you.
How to Deal With Cluster Headache and Protect your Mental Health
Build a plan. Write it out. As I talked about above, share it with the people in your life, like your boss and family. Write it out for yourself and be as committed to that plan as you are to living a good life and beating this atrocious disease. Let people know that you’ve got a plan to get better and stay more healthy.
Did you previously like to go jogging or go to the gym? Have you stopped? Set a plan to get back into doing those things that were important to you. The plan does not have to be, “tomorrow I’m running that marathon.”Maybe it’s just walking around the block. Drag that O2 tank with you. They make two wheeled dollies to drag it behind you. You and your family will be happy that you are dedicated to getting back into shape. Or happy that you’re working toward getting back on the water to go fishing. Reintroduce yourself to your passion. It’s important to work at being as healthy as you can. It’ll provide strength to get through your cycle.
Most of us have vices that make it a less than healthy lifestyle. I’m told that a pack of cigarettes and two POTS of coffee every day isn’t the best healthy lifestyle. I do know that whatever we do day to day needs to be as healthy as possible and sometimes we have to be healthier than others in different ways to make up for our bad decisions.
Pain, Not Personality: Why Behavioral Medicine Matters in Cluster Headache Care this video explores an important truth: behavioral medicine does not mean cluster headache is “all in your head,” and it does not replace medical treatment. It offers practical support for carrying the fear, disruption, isolation, and recurring trauma that can come with this disease. The tools discussed here can help people with cluster headache and the people who love them build coping skills, protect relationships, and make room for life alongside the pain. Minutes 14 through 40 discuss these effects in depth. Watch the conversation here.
Daily life with Cluster Headache
Going to the dentist
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Don't be afraid to travel
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Marriage and Relationships
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Jobs and the Workplace
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More About your Mental Health
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Frequently Asked Questions
Why do cluster headaches get worse on weekends or vacations?
They were once called "executive headaches" because attacks often hit when a person finally relaxes after a stressful stretch. Adrenaline seems to hold attacks off at times, which is one reason it helps not to cancel the events you look forward to.
Should I avoid travel if I have cluster headaches?
Travel feels risky, but try not to let fear cancel your life, since you'll end up cancelling far more than the clusters would have. If your insurance covers oxygen, suppliers can often arrange a tank at your destination. Air travel can trigger attacks, so plan ahead and keep any non-oxygen treatment in your carry-on. Check with your provider about your own situation.
Do cluster headaches cause PTSD or mental health struggles?
For many people, yes. The fear of the next attack and the trauma of the pain can produce real PTSD symptoms, sometimes a recurring form because the trauma keeps returning. Reaching out for help is a sign of strength, and support is available.
How do I explain cluster headaches to my employer or family?
Share a plan and stick to it, keep them updated as treatments change, and be honest that there will be ups and downs. If you're worn out from explaining yourself, someone at Clusterbusters can have that conversation with them, and the community is here to help.
You Are Not Alone
There are people in this community who have been where you are. Connect with thousands of cluster headache patients and care partners who understand.
Going to the dentist
If you need dental work and you are getting numbed up, ask for the injection without the epinephrine. The epi can set off an attack.
It is also worth taking a minute to teach your dentist about clusters. A huge share of us, more than four in ten, were misdiagnosed at some point, sometimes with dental work done in the hope it would fix headaches that were never about our teeth. A real toothache does not show up at 3am for exactly 45 minutes every single night, vanish completely, then come back the next afternoon. When you explain that, you are not just helping yourself. You are helping the next person who walks into that office undiagnosed.
Don't be afraid to travel
Travel feels risky, I know. But if your insurance covers oxygen, your supplier can very often arrange to have a tank waiting at your hotel. Just call and ask for the rep who handles travel. Bring your own mask and regulator with you.
Air travel can trigger an attack. The best time to have that conversation is before takeoff or once you have leveled off, not in the middle of an attack. The crew has to clear it with the captain, so give them the time to do that. If you use something other than oxygen for treating an ongoing attack, pack it in your carry on and keep it handy. Some people have had luck quietly asking a flight attendant about the emergency oxygen onboard.
It’s not easy to get past but try not to let the fear of cluster attacks make you cancel life activities. It’s bad enough when attacks do ruin an outing but try not to let fear make you cancel. You’ll end up cancelling a lot more activities than you would have had to.
Cluster headaches used to be called “executive headaches” because many people working stressful jobs would be fine all week and then the clusters would hit during weekends, when the person would relax. It’s a matter of adrenaline keeping the clusters away sometimes. Going on an adventure or a graduation or birthday party just might be something to keep some of those attacks away.
Marriage and Relationships
Half of all marriages end. Almost none of those marriages had clusters in them, because only about one in a thousand households is dealing with this at all. Life is hard for everyone, even the people who do not carry this on top of it.
When we in the community complain that someone has left us because they weren’t strong enough or care enough to stay because of the clusters, this diminishes the wonderful people that do stay regardless. Leaving is the normal response. Staying and supporting is the exceptional response. Your Care Partner deserves the respect they’ve earned through their dedication to caring for you and not giving up.
We did some research long ago that showed that 29% of cluster relationships end due to what they felt were caused by the diagnosis of cluster headaches. I think that sometimes clusters just push things in life over the edge. Relationships are rarely easy for anyone and it takes work. Clusters certainly do add a lot of stress into any relationship. If you aren’t one of those rare couples that find each other because of their common clusters headaches, then neither person knew what they were signing up for when they pledged to be there for each other for “better or worse.”
One thing that is true after meeting cluster families for almost 30 years, is that when someone is diagnosed with cluster headaches, that diagnosis doesn’t just cover one person, a cluster diagnosis affects the entire family. The family is diagnosed with cluster headaches.This information isn’t anything new for you to be told about. You’re all living it every day.
Jobs and the Workplace
Everybody loses jobs eventually. Nobody stays anywhere for 35 years anymore, and people are told to switch every few years if they want to climb and earn. Everyone struggles to hold work at some point, because everyone has something going on. Difficult bosses and grudging accommodations are not unique to us. That tension has existed since the first person ever paid another person to work. So do not assume every hard day at work is the clusters' fault.
If you’re having trouble at work with getting them to accept your health condition and they don’t appreciate having to make accommodations, this is certainly a widespread issue for us and has been this way the first time someone gave someone else a job and had to pay them. It happened even if they weren’t paying them and were slaves and owned by their bosses. In today’s job market, many people are still treated in this way. It seems to be getting even worse. So, don’t be thinking that it’s all because of your clusters.
Tell them that you have a plan and stick to the plan. Keep them updated on changes ahead in treatments. Let them know that you’re doing more to not only continue to be the good employee that you are but you and your team have a plan to be even better. It’s best for you to have a positive attitude about the future and you should be sharing with them the positivity of getting better over the long haul. Tell them that there will be ups and downs but you aren’t going to let the downs eliminate the ups. Let them know when you find some relief with a new treatment plan. Let them know when you hear about new research coming down the road.
Your mental health and physical health will always be best if you have a positive attitude. This should also be the attitude you bring with you to work.
Yes, I know that this is easier to say than to do. Remember that I’ve had clusters for 45+ years. Two cycles a year except for the 5 year period where I was chronic. The ups kept me alive through the downs.
I keep a note in my wallet that a friend slipped into my wallet years ago. It’s quite tattered. All it says is “It’ll get better. It always does.”
More About your Mental Health
Clusterbusters has learned a lot about mental health when it comes to people (and families) that live with cluster headaches in their lives.
Once you are stricken with clusters, you’ll have mental health issues whether you are chronic or episodic and in or out of cycle.
One of our biggest fears and that adds to our traumatic events is to have our Care Partners and family and friends bear witness to our trauma and not being able to help in any meaningful way. To counter that belief a bit, let me just say that just being there for us, and knowing they are there for us, is helping in a very meaningful way. I can say that everyone that is in our cluster community and is the one physically dealing with clusters, greatly appreciates not only their own Care Partner but has complete respect and admiration to all the Care Partners in our community. We are like fans of a symphony. We may have our favorite musical instrument on stage but love the sounds made by the entire ensemble.
Clusters are known as producing self-inflicted isolation. One of our first instincts is to hide our attacks as much as possible so that people close to us don’t have to witness our attacks. We know it’s a traumatic event for ourselves and want to keep that trauma away from people that care for us. It is traumatic knowing ourselves that there is little that we can do but we also know that they too will have those feelings of helplessness.
After speaking with literally thousands of Care Partners, I can attest to the fact that no matter how you may try to prevent it, your Care Partners are also going through a traumatic event even if they don’t see you. What helps with that trauma is to see you recover from it and get up and enjoy the time you can spend with them.