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CLUSTER HEADACHES:
Treatment and Relief for Cluster, Cluster Migraine,
and Recurring Eye-Stab Pain
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The following information was excerpted from CLUSTER HEADACHES: Treatment and Relief for Cluster, Cluster Migraine, and Recurring Eye-Stab Pain, by Michael Goldstein, published by New Atlantean Press. Copyright 1999. All rights reserved.
Do you periodically experience excruciating pain behind one eye? Are medications relatively ineffective at providing relief? Is the pain so intense that you've thought about suicide? If so, then you may be suffering from cluster headaches, cluster migraines, or recurring eye-stab pain.
Although initially it was thought that only a small percentage of the population suffers from this debilitating condition, the numbers -- about one in 400 -- appear to be increasing. In fact, tens of thousands of men and women are directly or indirectly affected. Evidently, cluster victims are often misdiagnosed; many others suffer in silence, frustrated and embarrassed by their illness.
I am a cluster headache sufferer. For many years I have endured the agony of recurring eye-stab pain. Like many of my fellow sufferers, I desperately sought a respite from the unbearable ache, as well as the reason for this mysterious ailment. Today, although the cause continues to remain an enigma, new treatments offer better options for relief.
This book contains excerpts from the personal experiences of 217 cluster headache victims (and a few of their doctors). Each individual told his or her story in their own words. No questionnaire was provided.
The information in this book is provided to encourage and support cluster victims, their families, and the doctors who are trying to help. The comments in each chapter represent typical remarks. Statistical data is included in the appendix.
It is my sincere hope that a cause and cure for cluster headaches will soon be discovered. In the meantime, some clues about this condition, and promising methods to treat and relieve the pain, are included in the pages to follow. Good luck in your quest for a happy and healthy life.
Michael Goldstein
Foreword by Seymour Diamond, M.D. Symptoms Initial Diagnosis Onset & Duration Recurring Cycles Pain Effect on Life Triggers Treatment and Relief Additional Comments Appendix Links to Other Cluster Sites
As a headache clinician, the opportunity to review commentary provided by headache sufferers about their pain experiences and the various treatments offered has always been rewarding and insightful. The renditions provided in this text, by the cluster headache victims, are especially enlightening.
Cluster headache is not a common headache disorder, and like most pain problems it is difficult to objectively measure the degree of suffering. Only the cluster victim can understand the excruciating pain and discomfort that characterize this disorder. Fortunately, only a small percentage of cluster headache cases complain of the chronic form. Chronic cluster headache is distinguished by its lack of a remission period lasting more than 14 days, or the absence of a remission period for more than one year.
One of the earliest descriptions of the different forms of cluster headaches (episodic vs. chronic) was given by Bayard T. Horton, M.D. (1895-1980), of Mayo Clinic. Doctor Horton treated many of his chronic cluster headache patients with intravenous histamine desensitization. His work with this form of therapy was more or less abandoned during the last three decades. However, for those chronic cluster headaches patients unresponsive to standard forms of therapy, the use of intravenous histamine desensitization may offer a viable alternative. At the Diamond Headache Clinic, this therapeutic modality is reserved for those chronic cluster headache patients refractory to all previous treatment options. It is my hope that by citing Doctor Horton's monumental work and his discernment about this debilitating condition, victims of chronic cluster headache will realize that other options are available to find relief.
The presentation of this book will also offer those with cluster headaches an insight into their condition, and a recognition that they are not alone in their suffering. The observations presented here will also be instructive for physicians managing similar cases.
Seymour Diamond, M.D.
Director, Diamond Headache Clinic
Director, Inpatient Headache Unit, Columbus Hospital
Chicago, Illinois
The telltale signs of a cluster headache are distinct, as well as remarkably similar among cluster sufferers everywhere. Here is a list of commonly reported symptoms associated with this condition: a piercing, stabbing pain on one side of the head and behind the eye; the attacks occur in clusters lasting several weeks, with a remission period of months or years between headache cycles; several headaches daily, recurring at the same time each day, often awakening one from sleep; the inability to lay down or remain still; the eye becomes droopy, red and moist; the nostril on the affected side becomes stuffed and runny; the desire to pound one's head against the wall; dejection, anxiety, and irritability.
General consensus indicates that most doctors are unfamiliar with the specific disorder known as cluster headache. More often than not, it isn't even a diagnostic option to the health practitioner. Therefore, even though the patient may display many or all of the classic cluster symptoms, a misdiagnosis is highly probable.
Many cluster sufferers report that they have been to numerous doctors, neurologists and other specialists, over a period of years, prior to being accurately diagnosed. In addition to their pain, they have incurred great frustration in seeking answers to their little known condition, untold expense, and have been subjected to a number of inappropriate treatments.
Here is a partial list of conditions erroneously attributed to the cluster sufferer. They are presented in an approximate order of their misdiagnosis: The ailment is a mystery; migraine (most often ascribed to female sufferers); sinus complications; allergies; stress and physical tension; eye strain (or the need for a new eyeglass prescription); brain tumors (or the need for an MRI, CAT scan, and x-rays); psychological causes; vascular headaches; impacted teeth; a deviated septum.
In this chapter, cluster headache sufferers offer details about their current age, their age at the onset of the initial symptoms, and the number of years they have suffered from cluster headaches. A complete analysis of this data may be found in the appendix on page 73. Some general observations are noted below:
More than half (52 percent) of all cluster sufferers in this study were under the age of 40. Just 15 percent were at least 50 years old. Eighty-four percent were under the age of 30 when their symptoms began, and nearly half (47 percent) were under the age of 20 when their headaches started. In fact, the average age of female sufferers at the time of onset was 18 years. Only four percent of all sufferers were at least 40 years old when their cycles began. The average victim has suffered for at least 15 years, but only nine percent has had to endure clusters for more than 25 years.
Cluster cycles appear to exist among individual sufferers, as well as within the group as a whole. But the recurring patterns are imprecise and variable. They are subject to change from event to event in frequency, duration, and pain intensity. For example, many respondents report that for many years the span of time between episodes was consistent, then mysteriously changed. Or
that episodes always ended after a certain number of weeks...except that the current episode broke the pattern. Or that the attacks always occur in the evening and last for a certain number of hours...except that now they've shifted to mornings and the pain is more severe. A complete summary of recurring cluster cycles is included in the appendix on page 74.
Cluster victims are compelled to experience a considerable degree of suffering. Many gain a small measure of comfort in knowing that other people realize the true extent of their agonizing affliction. Here is a list of expressions frequently used by cluster sufferers to describe their pain: hard to comprehend; impossible to describe; like an ice pick stuck in my eye; like a knife plunged through my temple; excruciating; unbearable; suicidal; devastating; severe; intense; fierce; brutal; torturous; debilitating; horrible.
A cluster headache is a disabling affiction that detrimentally affects many aspects of the victim's life. Unlike other headaches, one cannot simply "take a couple of aspirin" and continue with everyday events. In addition to the physical pain, this ailment impacts on emotions, marriage, finances, and worldly obligations. It clearly diminishes the quality of one's life.
Here is a list of typical comments made by exasperated cluster sufferers: I regularly miss work and other responsibilities; they're difficult on my spouse; I'm afraid to leave the house; I can't travel or go far from home; I live in constant fear of the next attack; It's embarrassing to have an attack in public; I'm afraid to go to sleep; I function for days on end with little or no rest; they're emotionally and financially draining; I am always depressed, anxious, and testy; I'm tired of fooling around with them; they're robbing my life.
Although no one knows what causes a cluster headache, some things are thought to provoke the condition. These may be referred to as cluster "triggers." There is some concensus regarding a few of these triggers but little agreement about most of the others.
Cluster triggers are unusual in that they do not seem to induce the affliction when the subject is not in the midst of a cycle. In other words, a certain food may be acceptable to ingest for several months, only to cause a headache once a cluster episode has begun.
Alcohol, smoking, and relaxation (including sleep, as well as the let-down that follows stress and heavy exercise), appear to be the most conspicuous of the cluster triggers. Here is a list of other potential triggers, presented in an approximate order matching the number of times they were considered to cause an attack: seasonal factors (including variable changes in daylight); weather variations (including changes in altitude and barometric pressure); chemical and hormonal imbalances (including seratonin levels, circadian rhythyms, disruptive sleep patterns, sleep apnea, and low blood oxygen); allergies; toxic food (including nitrites, MSG, and food containing trace amounts of detrimental substances); specific foods; food in general (eating anything); certain over-the-counter drugs; perfumes and other odors; trauma to the body. (A summary of these possible triggers may be found in the appendix on page 75.)
Cluster Headache Forum This site includes a cluster headache chat room, message board, feedback, and more.
Cluster Headache Website Includes very informative data, including valuable cluster headache profile statistics.
INITIAL DIAGNOSIS
LINKS to OTHER CLUSTER SITES
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