CLUSTER HEADACHE FAQ FOR: USENET NEWSGROUP ALT.SUPPORT.HEADACHES.MIGRAINE Section IV of IV, Headache FAQ's VERSION 2.0 Part 1 of 4 This is the latest version of the Cluster Headache FAQ prepared to address in more detail the possible causes, treatments and resources on coping with this condition. We try to use as little "medical talk" as possible but since this is a medical condition, it is sometimes difficult to "correctly" explain something without getting technical, without using the word "doohicky" or "whatchamacallit." This is a "patients" paper, from our points of view. It is sometimes necessary to use some "heavy" medical data or information to explain what we have learned. The professionals who are quoted herein, are some of the most respected in the field of headache treatment. Version 1.1 Prepared and collated by Tim Wortley Version 1.1 7/Oct/96 Version 2.0 Written/collated by Bob Wold Feb/12/00 Rwold42932@aol.com Some sections Edited by Jack Sandweiss, Research Associate, California Medical Clinic for Headache, Encino, CA All rights reserved and copywrited If you post this to the WWW or Usenet, please inform the author, for the purpose of receiving updated versions in the future. Contents, part 1 of 4 1. The Goal of the Migraine FAQ section IV 2. Cluster Headaches, an overview 3. Who suffers from Cluster Headaches 4. Thoughts on possible causes 5. Triggers reported Contents in following sections: 6. Responsive Treatments 7. Preventative Treatments 8. Breaking the Cycle 9. Pain Medications 10. OTC Treatments 11. Surgical Interventions 12. What's New in Treatments 13. Tips 14. What's in our future 15. References and Resources 16. Contributors 1. THE GOAL OF THIS FAQ. The best patient is a well-informed patient. OTOH, no information is better than "bad" information and not nearly as dangerous. This document should be used as a "starting" point (as opposed to, "stopping" point) in your search for information. Cluster Headaches are not widely understood or even known to the general public. It is the aim of this FAQ to provide limited support information to cluster headache sufferers. Note that the information contained herein is derived from articles in alt.support.headaches.migraine, published documents and personal correspondence with co-sufferers. We have become knowledgeable in Cluster physiology and treatment through personal experience, not medical training. If you are reading this believing you might be a sufferer, please, please see a medical doctor. The symptoms described here could describe a condition far more serious than a Cluster Headache.(TW) Except as noted, all first person quotes are attributable to Bob Wold and should be taken as a statement from "one" cluster sufferer, as are all following quotes. As you all know, Your Mileage May Vary. YMMV 2. CLUSTER HEADACHES 2. 1 What are Cluster Headaches (CH) - how do I know if I am a sufferer? It is estimated that there are between 500,000 and 2 million cluster sufferers in the United States alone. (AASH) "If you are a sufferer, you sure know it. Imagine a red hot poker being slowly driven through a single eye socket, lasting anywhere from 10 to 90 minutes. No wonder we pace back and forth, unable to relax, sleep or concentrate. We literally bang our heads against walls, as that pain is a relief." (TW) Clusters are so named because they occur in batches, with between 1 & 8 (or more) attacks per day, lasting anything up to 90 minutes, ( some are reported to last 3 hours ) with a cluster of attacks lasting anything from a few weeks to many months. Then, suddenly, the "cluster" will cease and the sufferer will be pain free for months or years. In the case of chronic sufferers there is no cluster free period. (See 2.5) Although rare, it is possible to suffer from both cluster headaches *and* migraine headaches in the same period. This sometimes complicates diagnosis and treatment, as treatments are seldom the same for clusters and migraines. 2.2 What are the typical symptoms of cluster headache? (AASH Description): "Cluster headache is characterized by severe unilateral pain usually located in or around the eye. The pain is often described as boring and of unbearable intensity, like a red-hot poker stabbing the eye." [The exact location of the pain, generally in the eye / temple region, but is not always constant from person to person. Some of the worst pain is reported to be when it's located next to the eye at the temple. The pain may spread to the neck, teeth and jaw.] "The attacks are relatively short, 15 minutes to 3 hours, and tend to recur in "clusters" several times a day or the same time each day for several days. Attacks often come on during the night. The patient with cluster headache often will have one or more of the following symptoms on the affected side during the attack: tearing or reddening of the eye, eyelid edema, contraction of the pupil, drooping of the eyelid, nasal congestion or discharge. The individual may have headache-free periods of months or even years between clusters." Lying down during an episode exacerbates the pain. Almost all sufferers report the need to "pace" during the attack. Cluster headaches are not associated with the gastrointestinal disturbances or sensitivity to light that are found with other vascular headaches, such as migraine. 2. 3 What is a Cluster headache *really* like. A cluster comes on very quickly. It reaches its peak pain level very rapidly, generally within five or ten minutes. There is generally no "aura" or associated precursor like migraines. Some people report short warning signs, a "fuzzy" head feeling, general feeling of discomfort, a mild burning sensation, and/or tightening of neck muscles. The pain itself is often described as having a burning or piercing quality and may be either throbbing or constant. "Immediately before every attack, I become very tired and totally exhausted. I often begin to yawn as this pale of exhaustion surrounds me. I have fallen asleep while sitting upright, reading a newspaper, in the middle of a sentence. This may be associated with a lowered O2 level in the bloodstream." "The excruciating pain continues, and as the headache is fairly predictable, the sufferer can usually tell how much longer they have to go before the headache ends. Some have reported a feeling of sickness as they begin the climb back up to normality. Finally, the elation and ecstatic feeling as the pain disappears as fast as it came. The world seems brighter, the sky bluer, - 'till the next time."(TW) The timing of attacks in the majority of sufferers are fairly predictable from one person to the next. Many report being awakened within 2 hours of going to sleep. (Corresponding to REM sleep) Many report attacks mid-morning or just after lunch. The likely times for an attack are normally constant, from day to day, for each sufferer. Due to their seasonal nature, clusters are often mistakenly associated with allergies. Due to other cluster symptoms, people are often treated for years for non-existent illnesses. Inflamation and conjestion of the sinuses leads people to treat sinus infections that do not exist. Pain in the jaw and teeth leads some to years in a dentist's chair, pulling teeth, suffering through root canals and bite plates. Pain in the eye sockets leads to hours spent in the optometrist's chair, reading "E's" on a wall. 2.4 How do I explain it to other people. Have you ever slammed your finger in a car door, or hit your thumb with a hammer, or witnessed this happening? Been unable to sit still and running around shaking your hand? Consider transferring this pain to your eyeball or temple. Survey results published in the Wall Street Journal, of all people, showed the pain to be generally thought of as higher, on a pain scale, than childbirth or accidental amputation. Not that *any* subjective definitions of pain are good comparisons, but we have a choice. Come up with "something" or refuse to try and explain. Explanations are difficult at best and will anger many people at times. Comparing pain rarely does anyone good. Probably the best way to explain one, is to let them view one. Although we often run and hide when we feel one coming. Most people when asked to ascribe a "level" to their pain, will apply a "9" or a "10" when they are talking about their worst pain experiences. I don't think that it's a coincidence that many cluster sufferers ascribe a "12" to their pain. I don't think it's in an attempt to try to say their pain is worse than other's. I think it's an attempt to explain that the pain is worse than anything they ever could have "imagined." 2. 5 What about Chronic Clusters? Episodic cluster headaches officially become known as "Chronic" Cluster Headaches following one full year (12 months) without a remission. Chronic clusters run continuously without any "remission" periods between cycles. Some readers have reassured that chronic cluster cycles can be broken. The NHF reports that approximately 20% of cluster sufferers may have attacks that are chronic in nature "My 5 year chronic stage showed constant pain levels except when helped for short periods of time by preventatives. They were just as painful on day 1750 as they were on day 1. The only noticeable drop off in pain was near the end when "Tegretol" started to finally end the chronic stage." As with all other aspects, YMMV, as many people suffering from chronic clusters, report a gradual lessening of pain and duration over the years. So, all is not lost. Chronic clusters "can" be broken but, OTOH, they "can" become much less of a devastating condition. 2.6 What is the public perception of Clusterers "Lets face it, no one outside this community has ever heard of Cluster Headaches. You bet your boss won't understand why 3-4 times a day you go pacing round the office, banging your head against office partitions (brings to mind a Dilbert sketch). I tend to use the "compressed" migraine approach. That is, it's like a migraine, but all that pain spread out over hours/days is compressed into 30 minutes. "(TW) 2.7 Is there a Test to diagnose Clusters? Although there are no definitive tests, at the present, that will diagnose "clusters," science may be getting closer. There are some things that are now visible on some imaging tests that show abnormalities that are present in cluster sufferers.(see 4.1) There are some very discernible symptoms of clusters but most of them also could fit other diagnosis. This seems to be the problem in getting an early diagnosis for so many sufferers. It is an unfortunate fact that many of us go years being treated for something other than clusters. Wasting years of possible relief rather than years of torturous treatment which costs thousands of dollars and very little relief. If you have found a doctor that knows "all" the right questions to ask and delves deep enough into your condition, it's pretty difficult to imagine coming up with a diagnosis different from cluster headaches. There are also some pretty basic treatments for clusters that should probably always be tried as a first line defense against clusters, but just as in the case with going years without a correct diagnosis, we sometimes go years without the proper treatment attempts. I would think that Oxygen would be one of the first things tried as a treatment, but many people go years without being offered 02 as a treatment. Not only is it fairly inexpensive, but also a basically side- effect-free treatment. On top of that, it's one of the tell tale signs when diagnosing clusters. I would think that 02 is one of the few "tests" we do have. Basically, if you can answer yes to the following questions, you almost assuredly have either been recently attacked by a bear or are suffering from cluster headaches. 1. Do you have severe and quick onset of unilateral pain around the eye/temple? 2. Are they so painful that you can not lay down and must pace or "rock" while sitting? 3. Do they appear at approximately the same time every day? 4. Does each unique attack last approximately the same length of time (15 minutes to 3 hours) each time? 5. Do you experience tearing of the eye and contraction of the pupil? 6. Do you experience nasal congestion during the attack? 7. Have you had an MRI and CT-scan to rule out any abnormalities such as tumors and have not had a serious head injury in the past. 3. WHO IS MORE LIKELY TO BE A SUFFERER? Male; (80%), start getting headaches between the ages 20 and 40, many having a remission by the age 55. According to a report in the NHF newsletter, "an Italian study examined 374 male cluster headache sufferers to look at the possible role of lifestyle factors in their condition. The study revealed that most cluster headache sufferers did have more stressful jobs than non-cluster sufferers, and were more frequently self-employed. In addition, more of the people in the cluster group had a history of head injury in the past. Cigarette smoking and alcohol intake were also more common among the cluster group than in the general population. Smokers accounted for 79% of the occasional cluster sufferers and 88% of the chronic cluster sufferers, and many of these men smoked more than 30 cigarettes a day. The author stated that, while there was probably not a single lifestyle factor involved in cluster headache onset, there may be a common trend among cluster headache sufferers to "overindulge" in certain habits such as smoking or drinking. Smoking, in particular, is considered to be a "trigger factor" in cluster headache." The most common cluster headache sufferer is both a drinker and heavy smoker, and although the link has not been proven, as stated above, statistically there is a connection. It is reported by the NHF that although smoking may not always "trigger" a cluster headache, it may make the pain worse than it may be otherwise or prolong an attack. Clusters had long been reported to *not* run in families. This was different than the case with migraine headaches which have long been proven to have strong relationships with heritage. Recent evidence suggests that cluster *may* tend to run in families. According to ACHE, "one study reported that the risk of cluster headache is 14 times greater if a family member has this disorder." 4. WHAT ARE THE CURRENT THOUGHTS ON POSSIBLE CAUSES ? Some recent investigations have again been looking into the relationship between air temperature and number of daylight hours, and the onset of cluster headache active periods. This investigation was begun over 30 years ago by Lee Kudrow, MD along with his many, if not most, other "groundbreaking" investigations into cluster headaches. This ties in with reported spring/autumn or winter/summer cluster periods. He directed research at the hypothalamus. Altered levels of hormones, (in particular, testosterone, hence the male predominance), steroids and melatonin in cluster headache sufferers have possibly confirmed this. 4.1 What is new in the field of headache research and treatment? Our understanding of the nature of headache has undergone a revolutionary change. It is now known that the headache generator is located in the back or lower part of the brain, known as the brainstem. The cause behind the generating of the brainstem in this fashion is unknown. Professor Peter Goadsby from the UK, for example, demonstrated that the generator for cluster, is located in the region of the brain called the hypothalamus. The hypothalamus is located immediately above the pituitary gland and is one area in which the nervous and hormonal systems of the body interact. It receives information and responds by prompting the pituitary appropriately. The hypothalamus, in addition to regulating such things as sleep, appetite and hormone secretion, is also associated with control of the circadian rhythm, a 24 hour cycle some refer to as the "biological clock". The circadian rhythm synchronizes biological processes such as sleep, to the day-night cycle occasioned by the rotation of the earth. Cluster headache does indeed, have cyclical characteristics. Attacks tend to be grouped in a series of short bursts of pain lasting about 30 minutes, often occurring in the middle of the night, continuing periodically over a period of several weeks, and then disappearing until the same time the following year. The previous was taken from an article by Dr. Marek Gawel and taken from a write-up on the 9th International Headache Society Congress in Barcelona, June 1999. According to a report in the July, 1999 issue of Nature Medicine, an abnormality in the hypothalamus has been detected. It has always been believed that clusters involved abnormalities in brain "function", such as Serotonin activity, but not brain "structure." A new imaging technique (PET) showed for the first time that there are differences in the hypothalamus of cluster headache sufferers that are not found in people without cluster headaches. "There are some significant advances in cluster HA etiology mentioned by N.T. Mathew, a very respected headache expert, in the May (1998) issue of Cephalalgia, pp 172-173. Professor Michael Moskowitz, MD.,head of neurology at Harvard, who's work led to Sumatriptan, and does a lot of the research into headache etiology, hypotheses' are referenced. In a nutshell, the source of cluster HAs is thought to originate from the cavernous sinus on the side of the headache. A narrow cavernous sinus (maybe some are born with this) or a lesion associated with that structure (maybe due to smoking in some individuals) is seen with imaging techniques in people who get these awful headaches. The periodicity is about the only thing that is a bit puzzling according to Mathew. [ Maybe the new discoveries regarding the hypothalamus makes this less puzzeling?] The rare events of the attack switching sides or a bilateral attack can be explained by an inflammatory reaction in the cavernous sinus. In a second article, Mathew says that the clusters seen in heavy smokers do not cease once the afflicted individuals stop smoking. Perhaps irreversible damage is being done to the vessels in the region of the cavernous sinus." (JDD)