Re-Post for newcomers: Helps explain the pain of CH to outsiders

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Posted by M.I.K. ( on September 11, 2001 at 03:25:15:

My take on Cluster Headaches

Much has been written about Cluster Headaches, little relief is available. I suppose one could establish a cause-effect relationship here: much has been written about the agony of the Cluster Headache sufferer perhaps precisely because there is no effective relief. This expose is a humble contribution in the search for such relief. It is hoped that the reader will forgive me for the form and content of my contribution. I am what one might call literarily challenged" and I am definitely not gifted in areas of scientific research.

Firstly, I must warn the reader that, because this illness does not lend itself well to objective observation and because my exposure to the topic of Cluster Headaches is limited to personal experiences, my observations should be considered highly subjective. This is not to say that objectivity in certain comparative measurements can not be achieved. It is possible to compare two or more (subjective) sensations, if not to an absolute value, to each other, or to sensations shared by most people (i.e."Ice Cream Headache", toothache, etc.). Furthermore, I did make a conscious effort to remain objective. I noted physiological changes by observing and timing symptoms and signs as they occurred and logged the information as soon as I was able to function after an event. As for experiences "reserved" for victims of Cluster Headaches, I hope to challenge the reader's imagination with descriptions that will, hopefully, trigger vivid images if not actual sensations.

For the purpose intended, I believe it would suffice to say that I am a healthy middle-aged caucasian male professional; when I go jogging, I can keep a mile under ten minutes; I smoke 20-25 cigarettes per day. I have been doing the same type of work and lived much the same life-style since I left military service early in my adult life. I have no allergies, and, though my Cluster Headaches are periodic (episodic), I can not tie the clusters to seasonal changes, specific foods or local climate.

In an effort to be as brief as possible, I will limit this treatise to a general "life-time" cycle pattern, the sensations during an attack, physiological symptoms and signs, and a detailed pattern of one five-month cluster cycle appended to the expose. I will also include remedies and coping methods I have tried. I will not address topics covered elsewhere such as the cause, diagnosis or treatment of Cluster Headaches. Also excluded are clinical bservations except a note, here, which describes the sufferer as enigmatic: a normal person who reports sudden, excruciating headache; becomes dysfunctional; returns to normal without any apparent residual deficiency; and reports to be pain-free. The reader is encouraged to review related literature as appropriate.

The Clusters

My headaches began in my mid-twenties though I did not know they were Cluster Headaches at that time. I was convinced the cause was related to neglected dental work: it felt like a real bad toothache. As a result of misdiagnoses, I had a tooth extracted following a root canal. Needless to say, the dental work left me short one tooth but without relief from the headache. However, when the headaches suddenly disappeared a month later, I had no doubt the cause had been, in fact, the extracted tooth. The entire "Cluster" lasted about two months.

Four years went by before I experienced my second "Cluster". My work precluded access to specialist medical services, so I "coped my way" through another two months of "discomfort". From there onward, the "Clusters" came at three to four year intervals, each lasting between one and five months. Occasionally, I experienced "empty threats", that is, beginnings of "Clusters" with "mild" (see rating) attacks. These lasted only a week or two. My last full-blown "Cluster" occurred three years ago. As I write these lines, I am on day 29 of a new "Cluster". And if the last one is any indication of what awaits me, the reader might forgive me if I am not overly enthusiastic about the prospects of the next few months.

The life cycle of a typical "Cluster" is similar to that of a typical attack. It begins with mild, infrequent attacks but then the pain grows in intensity and frequency as the cycle progresses. In a very general sense, the first third of a "Cluster" cycle is tolerable, the second third is intolerable. The worst is the last third during which ANY relief is contemplated. ANY, of course, includes thoughts of taking one's own life. Only with experience, a healthy dose of self-discipline and --at least in my case-- Christian faith does one maintain hope and, therefore, life. When the "Cluster" finally ends, it does so suddenly and life returns to normal.

The Attacks

The attack, itself, is difficult to describe, to say the least. Structurally, it consists of quality and quantity of pain plotted over time, and, its resolution. Functionally, I can only reference it in terms of physiology and behavior. Although both structure and function could be addressed separately, I believe that a clearer picture will emerge if I try to first describe pain both in terms of quality and quantity, and then combine structure and function over a temporal line from the beginning to the end of a typical attack. However, before I can hope to paint a meaningful picture, I must first address a very subjective topic: pain.

I am sure that there are many good, formal "pain" models that rate pain in terms of both quality (kind of pain) and quantity (intensity). In ignorance of such formal models, however, I have conceived the following examples to rate my experiences. It is hoped that a benefit of this ignorance is an influence-free concept of the subject matter.

My examples work well for me simply because they combine quality and quantity on one scale by comparing the pains of Cluster Headache to "kinds" of heat where the quality suggests quantity. I rate pain quantity as "Trace" (some call it "Shadows"), "Mild", "Moderate", "Severe" and "Extreme"; and pain quality as a "type of heat". Since type of heat suggests intensity of heat, the above degrees of intensity could just as well have been labelled "Hot air", "Hot water", "Steam", "Wood fire", and "Molten iron" respectively. It should be noted, however, that there is no clear demarkation between the five degrees. The low point in one degree is not remarkably different from the high point in the immediately preceding degree.

In a general sense, the quality of Cluster Headache pain is similar to what we all experienced at one time or another when we ate ice cream too fast except that Cluster Headaches are always unilateral. The operating condition that triggers "Ice Cream Headache" appears to be the sameas in Cluster Headaches. In both cases an artery dilates following constriction. However, since with "Ice Cream Headaches" the cause of the constriction is quickly removed (we swallow the ice cream), "Ice Cream Headaches" seldom last more than a few seconds. Cluster Headache pain quality can also be compared to the sensation we experience for a few seconds whenever water gets into our nose while swimming or diving. It, too, is an all-enveloping, "flooding" sensation.

Quantitatively, an attack ranges from mere discomfort to excruciating pain. At the bottom of the scale, it is a feeling of uneasiness, a stressful sensation of impending challenge, some people call "Phantoms". Although by no means disabling, "Phantoms" are definitely distracting; they are like danger lurking in close proximity. The feeling is that of being stalked (but not engaged).

Near the centre of the scale, an attack is disabling. At this point, the pain is severe enough to render the sufferer dysfunctional. There is a sense of urgency to find relief. The sufferer is totally engaged in his battle with pain; he is committing nearly all his mental resources to coping.

At the top of the scale, pain can only be inferred. It can not be measured. Time, itself, seems to be erratic; memory is spotty; experience is a mosaic of events and blank spaces; the fabric of existence is ragged and full of "holes". Since introspective measurement of pain intensity is, to a large extent, affected by time --we seem to equate lesser pain over a longer period of time to greater pain of shorter duration-- and since time itself is erratic, mental notes of pain intensity at extreme levels are near meaningless and observations are possible only in retrospect. During extreme levels, the sufferer depletes his mental reserves to combat pain and diverts all of the mental energy he regenerates, one second at a time, to cope with his distress. After the attack, what is remembered is a level of suffering that successfully competed for the sufferer's attention at the expense of all else: in some cases, at the expense of life itself. (This exclusion of all other sensory input is, possibly, responsible for memory "blanks".)

Before getting into levels of pain, the reader might want to try the following experiments to get a "feel" of the subject: a point of reference to appreciate Cluster Headache pain. An example of pain quality may be experienced by conducting this experiment. Spread the fingers of your right hand and grab the right side of your head so that your thumb is pressing against the side of you neck, your fore-finger pressing between your cheek-bone and your upper teeth, and your remaining fingers pressing on your temple and your right eye-brow. Now push your fingers against your head and as hard as you can squeeze them together. Hold this position for as long as you can or until your arm starts to shake. This is "Mild" Cluster Headache pain.

Another example is an experiment the brave reader might want to try. Hold the spout of a kitchen faucet tight in your right hand. Now turn ON the hot water and feel the water rush inside the spout. After a few moments, as the water from the hot water tank reaches the spout, it quickly heats the spout and begins to burn your hand. Keep your hand on the spout until you find yourself shaking, clinching your teeth, jumping from one foot to the other or feel tears running down your cheek (objective observation). Do not worry, you will not burn your hand if the thermostat is correctly set on the tank to domestic water temperature. When you can no longer hold the spout, let it go. Now imagine that your right hand was the right side of your head, of your brain. If you have done the experiment as described, you have experienced "Moderate" Cluster Headache pain for a second or two. Of course, "there lies the rub". The Cluster Headache sufferer can not "let go" the "spout"!

Now that we have a "feel" for Cluster Headache pain, let us examine the five levels one by one starting with "Trace". "Trace" pain is a sensation that usually signals the beginning and the end of typical attack. It feels like somebody has poured hot coffee into your head and flooded you brain. The feeling of flooding is quite evident. It is uncomfortable but quite tolerable, much like a nagging sinus headache or toothache. Your are able to read light material with regular breaks to pause and cope or heavy material for 2-5 minutes at a time. You are able to carry on an intelligent conversation and can solve mathematical problems without much difficulty. People around you might think you are in a bad mood but they will not think that you are in pain. During a typical forty-minute attack, "Trace" pain lasts 2-3 minutes at the beginning and 30 seconds at the end of the attack.

"Mild" pain progresses from "Trace" pain during the beginning of an attack. It is similar in intensity to a bad toothache which has you pacing up and down, breathing heavily, moaning and sweating. In quality, it is as if somebody were pumping hot water through your Carotid. Your artery is aching from the base of your neck to your eye socket. Two or more teeth hurt, your cheek bone and especially your temple area are very sensitive to the touch. You are unable to read or carry on a conversation, but you can successfully handle simple mathematical problems that take no more than 5-10 seconds to solve. Even minor distractions irritate you, you just want to be left alone. By now you are totally focused on coping with your distress. During a typical forty-minute attack, "Mild" pain last 5-10 minutes.

"Moderate" pain progresses from "Mild" and from "Severe" or "Extreme" pain. It is similar in intensity to a hot water burn. In addition to behavior associated with "Mild" pain, it has you hitting your head with your fists, you let out loud grunts, you become aggressive to yourself and to those around you. The sensation is that of hot steam or hot acid burning up you brain. You are unable to solve even simple mathematical problems. Tears are flowing down your face, your nostril is completely blocked, your eyelid is badly drooping. You are watching the clock, counting the minutes and hoping. "Moderate" pain lasts 10-20 minutes during a typical attack.

"Severe" pain progresses either from "Moderate" or from "Extreme" pain. At this level, it becomes increasingly difficult to maintain any level of objectivity and introspection is possible only for a few seconds at a time. The general sensation is that of live wood fire burning inside your head. You can even "feel" the "sound" of cracking wood, the heat of red hot embers, you smell smoke and you have a sharp, bitter taste in your throat. The entire side of your neck is aflame, you feel as though your Carotid is as thick as your thumb. By now you are kneeling on the floor, hunched over, hitting your head on the floor. You are violent to yourself and anyone around you. You are counting the seconds as best as you can. You may lose control of your bladder and bowel. During a typical attack, "Severe" pain lasts 2-5 minutes.

"Extreme" pain progresses from "Moderate" or from "Severe" pain. Self-observation at this level is close to meaningless. Time stops, there are no dimensions. The sensation successfully recalled later is a memory of a white-hot steel wire or rod burning from your neck, up through your teeth, through your temple into you eye. You drift in and out of reality, you loose your sense of being, your sense of direction and balance, there is no up or down. You smell burning electric wires, you can not maintain even a simple thought. At this level, any solution, including suicide, to relieve the pain is an option. In addition to behavior associated with "Severe" pain, "Extreme" pain has you lying on the floor in the fetal position with every muscle in your body tensed to its limit, you are shaking violently. Like a weight lifter, you are holding each breath, trapped in your lungs, tightening your abdomen muscles with all your might as you force the air against your locked throat. You feel your eye-balls protruding from their sockets. Then you release the air in an explosive grunt or cry, immediately inhaling deep and holding your breath again. Post-"Extreme" pain examination occasionally reveals bruises, you may have chipped or broken a tooth if you did not use some type of shock-absorbing material to bite on. During a typical attack, "Extreme" pain lasts 45-180 seconds.

Now that the "ugliness" of the attack has ruined your appetite, dear reader, for which I apologize, it is time to look at a typical attack cycle. It is noteworthy that attacks do not always follow a clear pattern. A typical attack is the most common but it is by no means the only manifestation of periodic pain. An attack usually begins with "Trace" pain. It follows the typical progression detailed above, and can last from 30-50 minutes followed by days of pain-free periods in the early stages of a "Cluster", and by a few hours of relief during the full-blown period. Most attacks occur during early morning hours (3-6 a.m.), the calmest periods are between 8 a.m. and 12 noon. However, sometimes for no apparent reason, two deviations occur. In one, the attack does not end after 40-45 minutes but lingers on at the "Mild" level for 4-10 hours. In the other, an attack is immediately followed by one or more attacks in succession without a period of relief and rest. Attacks in succession usually occur during the last week or two of the "Cluster" cycle and signal its end. So in a strange paradox, though they are extremely agonizing and disabling they are, nevertheless, welcome.

The resolution, when all the pain is gone, is an experience in itself. You feel as though you just ran a Marathon: totally exhausted. Your eyelids are made of lead, your entire body sinks deep "into" the floor. You may pass out for a second or two in euphoria. If this is your lucky day, you will thank God and fall asleep instantly. If not, the "Trace" of a new attack will have you cry in despair like an abandoned child.


I do not take prescription medication so I have no experience with any. I have reason to believe that pharmacological intervention has a habit of transforming a periodic Cluster Headache into a chronic condition. It appears that desensitization to serotonin takes place if a cycle is allowed to run its course. I have used oxygen successfully within the first few minutes of an attack. I also found that repeated immersion into cold water in the tub while taking a hot shower will abort an attack 50% of the time. Alternatively, and to a lesser degree, washing my face and head with alternating hot and cold water seams to buy 30 seconds of relief. I have tried EMF (Electromagnetic Field) therapy used in physiotherapy. It worked well at first but became ineffective after a few years.

Coping techniques

I have found that the ability to cope with the distress of Cluster Headaches can make the difference between a miserable existence and a meaningful life and contentment. I do not preclude the possibility of the beneficial effects various mind control techniques might offer but I have no experience with any. What I do have experience with is environmental control. In this regard, I can not overemphasize the importance of non-interference. Nothing is more inhuman to a Cluster Headache sufferer than to have a well-meaning but misinformed health care provider restrain him. Be it out of ignorance or fear of liability, restraining someone suffering from Cluster Headaches is the most cruel form of torture. In his time of excruciating agony, such interference deprives him of his only salvation: his ability to cope. Even kind suggestions that he "should lie down" are, in the eyes of the sufferer, displays of supreme ignorance of his distress.

What works best for me is an understanding family that will let me cope with my distress as I see fit. I need to be alone, in a dark, cool place, preferably in the basement where the concrete floor is carpet covered. I need to have access to the bathroom and I must be sure that the room is reasonably soundproof. The reason for solitude and soundproofing is to allow me to focus my energies on coping without having to worry about the effect my agony might have on my loved ones. The sufferer knows only too well the despair of helplessness and he does not want to subject those he loves to such feelings.

I also find that understanding what is happening helps me cope. I can only imagine the distress an infant or even a child would suffer in a similar situation.

But my most effective "security blanket" is a healthy mix of reason and faith. I tell myself that I have gone through this before and survived, every time. Therefore, I have no reason to believe that I will not survive the next second, minute, hour or day. I also tell myself that my condition though painful is not harmful unless I make it harmful; that there is a difference between pain and harm; that I will be the same after the episode as before. These are all matters of control. We control what we can, we accept and adjust to what we can not. And this is where faith, especially religious faith kicks in. With a clear conscience in having done what humanly could be done, one accepts one's destiny and makes the best of what there is. We accept that our lives are not ours; that we are merely transient custodians of our existence; that the body is weak, as evidenced by how poorly it serves us during these times, but that the spirit is indestructible. We do whatever is humanly possible to be good custodians of our lives and leave the rest in the hands of Our Maker with confidence. These thoughts, my friend, are the key to coping with Cluster Headaches. We do not need to have superhuman strength to survive an attack. We only need to have the faith that we will.

If you find the foregoing "heavy", dear reader, do not be too judgemental. A lifetime of living with Cluster Headaches tends to make philosophers of us all.


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