The Pain of Cluster Headache by Agnes Cecile

It’s not a headache, it’s not a migraine, it’s a cluster headache.

There are two classes of headaches, primary and secondary, the later being caused by an underlying medical condition, while the former are not. These primary headaches can be subdivided into three types. Tension headache is the most common, migraine headache lesser common and cluster headache the least common. What I would like to discuss in this blog is the cluster headache, as it is what I have and, unfortunately, been afflicted with for more than a decade now. Clinically, occurrence of cluster headaches normally occur 1-3 times a day for a few weeks to a few months period with months or years of remission in between. In addition, a cluster headache will often occur two hours after going to sleep and the severity is generally worse at night than in the day. Occasionally there will be a headache free day or two now and then for welcomed relief, but generally they are consistent and relentless during a cluster cycle. The underlying cause is not known, nor is the impetus that stimulates the pain spontaneously. The source of the pain itself comes from something called the trigeminal nerve, an autonomic reflex pathway governing sensations in the face and jaw and the largest crainial nerve, of which there are 12 in total. Activation of this nerve comes from the hypothalamus, an almond shaped gland just above the brain stem, responsible for metabolic and autonomic nervous system functions, such as body temperature, hunger and our ‘internal biological clock’ responsible for the sleep/wake cycle. Once the nerve is activated, severe pain occurs behind the eye, described as piercing or burning in sensation, which further induces a response from another group of nerves resulting in discharge from the eye (watering & redness) and nasal passages (congestion). Stabbing pain is often felt in the temples (usually on one side of the head) accompanied by a burning sensation on the face. They have been characterized as the worst pain a human being can feel and are sometimes referred to as suicide headaches, due to cases where people have killed themselves as a result of the condition. Fortunately they are rare, afflicting less than 1% of the population, with statistical estimates around 69 of 100,000 people. A good resource on a variety of statistics on cluster headaches collected through a non-scientific survey at the Worldwide Cluster Headache Support Group is here:  Cluster Headache Survey.


The Cluster Headache by JD Fletcher

I began suffering from Cluster Headaches around 1998 or 1999. The first time I had one it was not long in duration, but I remember thinking, “what was that?” It was the worst headache I had ever had and thought it medically alarming. Subsequent ones came over the next couple of weeks, but I thought there was little to do, take some advil, grin and bear it. Suffice it to say, my first occurrence of a cluster cycle was not that severe, compared to subsequent ones. I suffered a couple more bouts of increasing severity until 2004 when I was finally diagnosed with cluster headaches. After another bout in 2005 which lasted 2.5 months, my cluster cycles have occurred every couple of years for about 2 months in duration before going into remission. During that time I tried many of the available drugs for treating clusters, but only Imitrex injections (sumatritan) and prednisone seem to be helpful for me. Sumatriptan (a vasosuppressant) is an extremely expensive drug. It is about $90 per 6mg ampule, but with insurance the cost is reduced to $12 per ampule. The recommended dose is one 6 mg ampule per headache, so you can see that even with insurance the cost can add up. I have literally spent thousands of dollars on this medicine over the years. My 2005 bout was a very severe one and I suffered what is called Medication Overuse Headache (MOH), or rebound headache, where use of sumatriptan actually worsened the frequency and severity of the attacks. It was then I began to really research my condition intensively. I began limiting the doses to 1/2, 1/3, and 1/4 ampule per headache. In the end 1/3 ampule (2 mg) seemed adequate and that is what I use to this day. Even at this level, the frequency of the headaches and use of sumatriptan can still induce rebound. In such cases, I immediately stop using the medicine and suffer the pain of the attacks for a day or two. It is not pleasant, but a necessary evil to break the rebound cycle. Sumatriptan is also risky to use with frequency because it is a vasosuppressant and can cause heart attacks in patients at risk. The other drug I mentioned, prednisone, is a corticosteroid that works as a powerful anti- inflammatory agent, but can suppress the immune system. I take two 20mg tablets per day for two weeks, then 1 per day for a week surrounding the cycle peak and while it does not provide a pain free existence, it does lessen the severity of the pain to a level I can tolerate. I try to save the sumatriptan only for the most severe headaches. It’s all about managing the condition. Perhaps sharing my experience is a benefit to others.


The treatment and management of the pain caused by my cluster headaches is something I have at least some control over, but in other life aspects such as work, relationships, and getting enough sleep to function properly, it has been problematic during my cycles. In my job, I have found that by communicating my condition to those I work close with, they are generally understanding and do not expect my usual level of performance & behavior during a cycle. This is a stress reducer for me and I allow myself not to feel guilty about it as it is only temporary. In my relationships I have tried the same approach, with varying degrees of success. Sometimes I feel the level of sympathy is there, but I am still held to a level of activity or emotional involvement that I am uncomfortable or unwilling to maintain during the duration of a cycle.  I can become selfish, distant and uncooperative in these situations when pressed to behave as I would under normal circumstances. This is an unrealizable expectation to hold for the cluster headache sufferer, and it is important your partner, friend or such allows you the freedom to seek your own space and comfort zone for a time, without adding to the burden of suffering with emotional stress as well. After all, it is only a temporary situation that will pass in time. Failing to follow such a course can potentially disrupt in adverse ways the course  and harmony of a relationship if the cluster headache sufferer feels resentment at not being understood, so to speak. I have certainly felt this way toward one girlfriend who expected more of me than I was capable of doing during a cycle, so I have some personal perspective on the dynamics involved with regards to personal relationships. This brings me to getting enough sleep to function properly. I generally suffer from sleep deprivation during a cycle obtaining only 3-5 hours of sleep out of every 24 hours for as long as a week or two at a time. The headache free days allow for extended sleep, but it’s never enough to feel totally rested. There isn’t much can be done for it as the cluster determines how long they allow you to sleep. I just try to stay alert and keep my mind focused as much as I can on tasks. I have found computer work such as blog writing, social media, or other related computer tasks a helpful aid in between periods of feeling pain,  in getting me through the night. Pacing is the activity of choice for me when feeling some pain. Activity as a way of focusing on something is therapeutic for dealing with cluster headache.

Video Playlist (5 videos to stream regarding Cluster Headaches)

Headaches (Migraines, Cluster, Tension):  While I am not sure it is constructive to compare pain as a measure of relative suffering in terms of tension, cluster, or migraines, all headache sufferers (regardless of the type) feel pain and sympathy for them is warranted in equal degree. Nevertheless, it is important to draw a distinction between the types because they are not the same things. For a comparison of the first two, see Cluster Headache vs. Migraine. Another difference of note is the response of the sufferer to the type of headache. A migraine sufferer may want to lie down, go to a dark room or just stay quiet to deal with pain. A cluster sufferer cannot stay still, may pace around, clutch or bang their head, moan, groan or otherwise yell at times. This is a distinguishing difference sometimes in response behavior to diagnose a patient. I am not sure about migraine sufferers, but with cluster headaches for me, I feel discomfort all the time during a cycle and it is like having a mild headache for 2 months straight with several severely painful ones each day. It can be quite disrupting in day-to-day normal life.

There must always be hope for a cure someday beyond the treatment for sufferers of all types of headaches. To conclude, I offer some useful links for reading. There are many resources today via the internet for the sufferers of cluster headaches. Here is a short list:

(1) Worldwide Cluster Headache Support Group
(2) Mayo Clinic – Cluster Headache
(3) Management of Cluster Headache (medical study)
(4) Organization for Understanding Cluster Headaches
(5) Medscape – Cluster Headache (technical)

I am currently in the midst of a cycle (6 weeks so far) of cluster headaches.


You can feel them coming,
 but you can’t feel them going.