5 Ways to Support Someone with Cluster Headaches
My husband and I have a unique perspective on supporting someone living with episodic and chronic cluster headaches. He has intractable chronic cluster headaches, and I have episodic cluster headaches.
Our own cluster headache support system
We met at a conference for patients by a nonprofit organization called Clusterbusters. We have both lost relationships, friendships, and close ties to family members because of how they treated us during and after attacks. In the four and a half years we've been together, we've worked hard to be there for whatever the other person needs during attacks and breakdowns when we can't take the pain any longer.
Understanding that we don't fully understand
We're lucky in a sense that when he or I say I know how you feel, we know it to be true — but that's also not 100% factual. I don't know what it's like to be chronic, have attacks every day, and not respond well to treatment. He doesn't understand what it's like to live in fear of the next cycle because, well, he gets them every day regardless.
Helping others understand cluster headache
Most people with cluster headaches don't have someone with them who has experienced the severe and sudden nature of these one-sided attacks nicknamed "suicide headaches." Before we met, we faced these same struggles, so much so that we both volunteer for Clusterbusters now, and I wrote a textbook about cluster headaches to help others understand what's happening to them and their treatment options.
How to support someone with cluster headache
Whether it's your friend, significant other, or a family member with cluster headaches, the fact that you clicked on this link means you care more than most people. Here are five ways you can help improve their quality of life:
Believe them when they say they're in pain
Cluster headache, like other headache disorders such as migraine disease, is an invisible illness. When you see someone groaning in pain, pacing back and forth, and cradling their eye and temple, it's difficult to comprehend the pain level. Your instinct may be to offer Excedrin, a warm or cold shower, drink more water, and other seemingly helpful anecdotes, but those do nothing for this neurological condition. What they need is some understanding and space (most cluster patients like to be isolated to ride out the attack because we realize it's difficult to watch).
How can you respond?
When they tell you that it feels like an ice pick or hot dagger is stabbing them over and over, making them want to pull their eyeball out, don't respond with, "It can't be that bad." Instead, ask: What can I do to help? They may not know, but they will know that you care and aren't dismissing their pain.
Be there during and after cluster attacks
It takes time to learn what helps during an attack. Your loved one may not know yet what they need from you to help at that moment, but you being there — whether on the other side of a door or in another room — is showing them that you care. My mom once offered me a banana and a walk to help. I didn't respond well at the moment, but she was there and trying to help. Later, when we knew that I needed oxygen and a sumatriptan injection, she would get the tank ready or hand me the shot.
What mine and my husband's cluster attacks look like
When my husband has a particularly nasty attack, he isolates himself in our bedroom, but I still hear the screams through the wall. Around 30-40 minutes later, the attack subsides, and I go in to rub his back. This is something we've generally worked out over the years but at first? At first, I had no idea what to do. For me, he stabs me with the injection, and I run to the oxygen tank, but it's not as easy for him because so. Few. Things. Work. Ketamine nasal spray has been a godsend for him the last year, but eventually, it will stop working because cluster headaches evolve and become resistant, especially his type.
It really does help though it may not show at the moment
Being there with them in their not-so-lovable moments does more for their state of mind than you can imagine. We know we look crazy, crying and hitting ourselves on the head to distract from the pain, and seeing you on the downswing helps us return to a sense of normalcy.
Learn about treatments and research with them
The cluster headache diagnosis is a wild ride. Not only are most of us misdiagnosed for years, but once we get the right diagnosis coming up with a treatment plan can be hit or miss.
Abortive treatments for cluster headache
The most effective treatments to abort (or stop) an attack is high-flow oxygen with a nonrebreather mask with a hyperventilating breathing method, sumatriptan injections, or Zomig nasal spray. Despite those being the recommended options by neurologists and headache specialists worldwide, patients typically have to fight tooth and nail to get the oxygen script written and filled correctly — let alone covered by commercial insurance because Medicaid and Medicare do not pay for it.
Preventive treatments for cluster headache
The most effective preventive treatments are more complicated and range from Verapamil and Prednisone, which can have dangerous long-term side effects, to the new CGRP medication, Emgality. Emgality is the only medication ever approved for episodic cluster headaches. It's a preventive treatment, but it must be prescribed correctly as the cluster headache dosage is higher than the dosage for migraine disease. There are new and ongoing studies in the U.S., Denmark, and Switzerland on psilocybin mushrooms (often called magic mushrooms) and LSD to prevent and abort cluster headaches.
The treatment journey is a long one
Finding a treatment that works for your loved one's cluster headaches can be a long journey, but you can help by learning with them along the way. As I mentioned earlier, this condition seems to evolve. What works to end one episodic cycle may not work the next. Chronic patients like my husband find great relief for a short while before beginning the search again. By staying up to date on the old and new treatments, you can help them find effective, lasting pain relief.
Help them assemble their team
Managing a headache disorder is complicated. Finding the best treatment path alone is difficult, but getting in with a certified headache specialist or neurologist who actually knows how to treat cluster headaches can be even more complicated. The wait can be months or years. On top of someone whose specialty is headache disorders, they need a pharmacist, an oxygen supplier, and a primary care physician. They understand or have at least heard about the debilitating nature of the condition.
Helping with appointments and more
Help them with appointments and pickups if you're able. My husband often calls the oxygen company and pharmacy on my behalf because I still have panic attacks from the days when I was denied oxygen and refills. (My oxygen battle is another story though…) On top of these medical professionals, support groups, and nonprofit organizations such as Clusterbusters can be beneficial in those moments where they need to talk to someone who truly "gets it."
Take care of yourself
Being someone's caregiver or primary source of support can be overwhelming sometimes. You need to remember to take care of yourself and find time to do the things you enjoy too. If you're physically or emotionally drained, you can't care for someone else and give them what they need at that moment. Recognize when you need a break and make sure you take it — your mental health matters.
That is something my husband and I continue to struggle with. He has an attack every day when he gets home from work. Rather than take a moment to treat his head, he powers through to get his "to-do" list done around the house so he can relax, but that causes him more pain. We often have to remind ourselves to take those extra minutes to take care of ourselves first.
My dark room: