Cluster Headaches: What They Are & What You Can Do

 2018-painted by Josephine Jamision, artist & cluster headache sufferer

2018-painted by Josephine Jamision, artist & cluster headache sufferer

What They Are

The above picture is one my mom created using a Picasso reference. This was after a week long bout with Cluster Headaches with countless pill containers left in it's wake (more than what is pictured here). I say "title bout" because when you deal with Cluster Headaches, it's like being in a boxing match! The evidence of her battle are the pill containers of a medication called "Max-alt". This particular medication has been a life savor for both her, my sister and myself when dealing with Clusters. I will share more about our story later. 

The ironic thing about Clusters is it's a man's headache. It's not only man-sized but males experience clusters four times more than women. Migraines are terrible, terrible things but only Cluster Headaches have earned the term "Suicide Headaches" because the pain and frequency gives people suicidal thoughts. Only .1% of the population will experience it. It's characterized by being on one side of the head and usually around the eye and the temple area. It's described as an unilateral headache that occurs within the cranial autonomic system. They can shift sides of the head they reside on (I've experienced that which is a pretty creepy feeling). The headaches do not give warning signs of their approach like the migraine shadow. They instead often hit suddenly with the quickness of a hammer strike. Ironically, a cluster sufferer will typically experience the shadow headache symptoms after a headache, more so than beforehand. The headaches typically last from 15 minutes to 3 hours, are reoccuring throughout the day and it can go on for months.  In some medical journals, clusters are noted as the one of the worst pains known. Women have described it as worse than the pain of child birth. Think of that one for a moment. 

Cluster headaches are often misdiagnosed and mismanaged. My mom, sis, and I for years were treated for this as a sinus headache. Mine began early on in my life and let me tell you, when I say you will do just about anything to get rid of this kind of pain, that is no joke. Squeezing, rocking, scratching, crawling on the floor in the dark ito find a cold space to lay my head, while taking every pill imaginable was what I was left with for pain management.  Living most my young life in Florida's thick humidity, I often felt like my head would just explode.  This was from my late teens, twenties and into my thirties but even as a young tyke, I had to excuse myself out of play time with my peers due to headaches. I didn't understand it and neither did my friends.

My mom experienced clusters in her young adult life and also treated it as best she could. They have come back for her later in life under stress, like the loss of a loved one. When the cycle happens, there's little you can do. You can't read, watch T.V., stay up too late or deal with extreme temperature conditions outside. Both my sisters (one has passed now) are probably the most unfortunate sufferers out of all of us.  While Clusters are noted as being seasonal, my two sisters are in the category of year long sufferers--something I cannot imagine.  I've had to go to work with them.  However, they both managed to work inspite of them all year long when most year long sufferers end up on disability. Such sufferers are often on meds like a combination of steroids and lithium. For them, there are often triggers that will bring it on and in my family (with the exception of myself), it is smells. More specifically fragrances. 

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What You Can Do

If you know a sufferer of Cluster Headaches, visiting or a phone call is the best thing you can do. Remember, a sufferer can't read, watch much TV or go out too much. Conversation, food, board games are all things that could brighten their day. Of course, ask first.

If you suffer with Cluster headaches, treatment that makes any head-way (pun intended) is a hit or miss. It is an experiment that can be as frustrating as the headaches themselves. Some things work, others don't and others work for a limited time. 

What has worked for myself and my family is a pill called Maxalt and more specifically for me is anxiety meds. Anti-anxiety or depression medication is a common help for sufferers. I now have short occurrences during season changes, if at all. If I do have an episode, after a few doses of Maxalt, I'm good. However, Maxalt is a migraine medication like Imitrex and for most people that is not enough. I used to take that along with a barbituate as well. Now, I just don't need to do that. 

Before I get into the long string of medical options, let's examine some healthy alternative options.

Healthy Alternatives

The Migra-Stick--this is a roll on with the oils of peppermint and lavender ( if smells are your trigger, than that won't work). It sounds wimpy but it helped me a lot. The combination makes for a numbing and also relaxing affect. I swear by it. 

Turmeric is another supplement that can take some of the edge off.

Oxygen treatment is widely known as a help. One of the symptoms I remember is this feeling of being suffocated along with the pain so breathing is important, through the mouth. Alcohol, napping and nitroglycerin are triggers when you are prone to headaches. 

Cold Ice can help and some cases be an addition that takes it away.  If you are traveling, I found that directing the air condition right toward your head helps.

Medications

Tripans--Sumatriptan and zolmitriptan can improve the symptoms during attack as long as you do not heart disease.

Verapamil-a calcium channel blocker

Migraine Medication--As stated earlier, Max alt and Imitrex have provided relief for my family but this by and large doesn't work well enough. We usually have combined this medication (under doctor supervision) with a barbiturate. However, at times, the migraine med has been enough.

Sinus Medication--At times, sinus medication can take the edge off but never is something that takes the headache away.

Other medications: Lithium, steroids, methysergide, and topiramate. I have heard of a combination of Lithium and Steroids. This was recommended to me by a doctor but I refused to do it and went an alternative route with the anxiety medication. 

Surgery--More recently, there is another option that wasn't previously available. Apparently nerve simulators are an option now. You can try either deep brain stimulation or occipital nerve stimulation. Benefits of this have been shown in 60% of cases 1.

Support

Facebook: Cluster headaches (trigeminal autonomic cephalalgia), or just search for Cluster Headache Support and you will find a number of groups.

Clusterheadaches.com

Clusterbusters.org