Person with aching cluster headache and pain fractals sees beam of light at end of tunnel.

Finding Hope When You Have Cluster Headaches

Cluster headache has many names.  It is a member of the trigeminal autonomic cephalalgia (TAC) family of headaches.  It has been referred to as Horton’s Headache, after a neurologist who did work trying to understand it.  However, there is one name that instantly evokes an emotional response, Suicide Headache. This characterizes them well because those who live with these attacks are 20 times more likely to commit suicide.  The intense pain that strikes day after day, night after night while the person is in cycle is overwhelming.

The cluster headache diagnosis and treatment journey

Oftentimes, patients go through misdiagnosis, struggling to find a doctor who can recognize the symptoms of cluster attacks, and finding possible treatment options

Oxygen, Emgality, and off-label treatment options

Oxygen is the safest and most successful way of aborting an attack, yet doctors, insurance companies and oxygen supply companies all act as barriers. Emgality is the first FDA approved medication for the prevention and treatment of episodic cluster headaches. All other medications are used off-label, some with moderate success, such as Verapamil. However, it is a long list of medications to try to see if they work and the success rate is low, especially in the long term.

Given the limited options of the medical community, how can a Clusterhead find hope?

Find a cluster headache community

There are many benefits to a supportive community.  First, many Clusterheads have never met another Clusterhead!  Finding a virtual community can put you into contact with people quickly.  Finding a group that meets face to face may be more limited.  Imagine sitting down with a small group of others who know exactly what you are going through!  Clusterbusters has an annual conference where there are speakers and the chance to meet others.  Another great benefit is trading tips!  By talking to others, I have found all sorts of things to try.  The more tools I have in my box to try, the more choice I feel I have.  Which leads to my next point.

Have a cluster headache toolbox

The Clusterbusters community is a charitable organization that strives to find “out of the box” tools to give Clusterheads hope.  Their research has and is currently taking place at places such as Harvard and Yale.  One avenue of research is looking into the possibility of psychedelics such as Psilocybin, LSD, and LSA. This organization realizes more than anything, sufferers need hope. They need to know that someone is there. Also, hope is knowing when all current treatment options are exhausted, there are more on the horizon.  The community has birthed many observations, such as many who suffer from cluster headaches have low Vitamin D.  By fixing this through supplementation with doctor guidance, many find some relief if not remission.1

Find new ways to survive an attack

When I'm in the midst of an attack, the last thing I can think of is a new way to attempt to survive the attack.  I keep items that may help in reach. I also make a list of new ideas I want to try. Hopefully, I just may find something that helps me survive an attack a little easier.  Some of the things I found myself wondering (and sometimes they do help) is ice packs, running (this can be difficult so only if the circumstances are right), standing, laying down (found out this makes it worse), and sleeping at an incline, and giving myself brain freeze. Some things I never would have thought of: Energy drinks (with Taurine and Vitamin B), having my D3 checked and supplemented with doctor guidance and taking Benadryl at night when attacks are bad.

Celebrate victories

Since I have chronic pain conditions, I have learned I have to celebrate every single victory.  Whether I am able to participate in a scheduled event or I have 11 cluster attacks in a month rather than 12, I need to celebrate. Recently I celebrated my first 20 days in a row with no cluster attacks. This was the first time since I became chronic over 2 years ago. Day 21 didn't happen for me this time. I'm back to a 3-day attack free streak.

Remaining hopeful with cluster headache

I struggle with the connotation of "suicide headaches" because it evokes a feeling of hopelessness and helplessness.  If you suffer from cluster headaches and feel suicidal, please reach out. Those of us who have Cluster attacks understand and never want to lose one of our own because they felt alone and isolated.  Remember, to reach out to a community, use your tools, and celebrate victories as much as you can.  If you are a supporter of someone who has cluster attacks, first of all, thank you!  Secondly, the cluster community is here for you as well!  You should not be alone either.

How do you hold onto hope with your Cluster Headache diagnosis? Share a victory so we can celebrate with you!

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