J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.
Chronic cluster headache: a review.
Favier I, Haan J, Ferrari MD.
Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.
Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.
Publication Types:
Review
PMID: 16362185 [PubMed]
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The last sentence is the controllin reality: no way to predict.
I'd be talking to the doc about using your preventive 100% of the time and not depending on the short term Pred. If you are using Verapamil, it's a med which can be used for long periods without concern. In past years, we've had folks who were on it 100% with good effect.
Of equal importance is your state of mind. Trying to predict the future is a quick route to chronic anxiety and loss of quality of life. Beyond learning how to treat ourselves as effectively as possible, learning how to cope with the unpredictable is a real survival skill with any chronic disorder.
Would encourage you to consider:
PAIN VS. SUFFERING
Please, reader, do not approach this little essay as an alternative treatment or cure for CH! Nothing outlined here is a substitute for good, sound medical care and treatment.
AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.
Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.
Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.
The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN! This is the paradox which we need to resolve if CH is not to be the controlling experience in life.
As you read our messages about CH they fall into two broad categories: causes, prevention, and treatment; and, the subjective experience or emotional side of CH.
A sample of the "experience" messages which we see are along the lines such as:
"Ch is horrible; it never stops!" (Or it will never end; or they will go on all my life, etc.)
"I can't bear the pain!"
" Nothing makes me feel better!" (Or no medication works; all have failed and so on.)
"It's not FAIR!" (Or variations along the lines of, "why is God doing this?", "am I being punished?")
"I feel so GUILTY!" --because of how I burden my family or can't work, etc.
"The WORST thing in my life!" (Or some variation on how CH is a catastrophe that I can't handle.)
(Before moving on, you may recognize this concept as the core of cognitive therapy or Rational Emotive Therapy. These therapies are rooted in the basic idea that how we think about an experience creates corresponding emotional reactions--for good or bad. The research on the effectiveness of this approach is very good; outcome research shows that it is an effective form of therapy for depression, anxiety, and addictions of various types.)
Cognitive therapies teach people to recognize:
A. These thoughts may be spontaneous and automatic but,
B. They are not rational thoughts, and so, in their very lack of reason they,
C. Stimulate emotions which are disruptive, distorting, and which intensify the difficult experience of CH and,
D. This style of non-rational thinking and the associated emotions tend to spill out (generalize) into our larger lives affecting relationships, our beliefs in how effective we are, how well we are able to run our own lives, and so on.
IF (and this is often difficult to both see and to accept!) we can begin to see HOW our thinking may not be fully rational and HOW these ways of thinking feed our SUFFERING--then it may be possible to change our thinking habits.
The next step--past a willingness to consider that we may be thinking this way--is to learn how to dispute with ourselves, that is, how to argue that our own thinking is not reasonable, that it is self-harming. Then we learn how to change these thinking habits (with the goal in mind that by changing how I think about my experience will change how I feel, how my emotions affect me.)
(Understand that this is an outline of a fairly involved process. I'm just trying to quickly summarize how this method of self-help works. Sources of material are at then end.) So, let's go back to the sampling of expressions which we see in our messages about CH and see how cognitive psychology would deal with them.
1. "CH is horrible; it never stops!" First, recognize the despair and hopelessness which arises from this statement: where will this line of thinking take me? So, we learn to respond more rationally, i.e., "Yes, it's hard pain--but it has always stopped even when I don't treat it. I can survive this attack as I have every other one. I need to do what I know helps." The long term effective of this change in thinking is to increase self-confidence and a sense capacity to benefit ourselves.
2. "I can't bear the pain!" Response: "I always have. I know pretty much what to expect; I've got some medication which helps. I can bear the pain because I always have!" Notice, this is not a denial of the pain; it's not a "let's pretend". The goal is to deal with the reality of temporary pain; pain which, as bad as it is, has always stopped with our return to reasonable well being. It is the denial of this, our personal experience, which arouses suffering and despair.
3. "It's not FAIR!", or thoughts of GUILT, or that I'm being PUNISHED. Response: "This is my body not working right; it has nothing to do with morality or sin or fairness. My job is to care for ME, NOW, not fret about fairness." (The consequence of an appeal to "fairness" is that we become victims. The problem with "guilt" is that we have to find a "sin" which justifies having CH or we must convince ourselves that we have chosen CH to avoid something or to hurt someone, hence, our sin. In the end, this line of thinking is not reasonable or rational and serves to create more suffering.)
4. "CH is the WORST thing in my life!" I often see folks express in their messages a sense of anticipation, of feared expectation about the next attack of cycle. There are few responses which lend themselves to the development of suffering better than this one: waiting for pain; looking for the next sign; assuming that it will come. Reflect a moment on what the impact is on our emotional well being and you may begin to appreciate why changing thinking habits is of value. How to respond? "It is the worst experience--when it's occurring--then it's over and I return to my full life. My whole experience says that I'll come through the next one--when and if it comes. I don't have to wait and look for it; there is living to be done, now."
If you are interested in exploring this way of altering your thinking habits there are three readily available sources of information:
1. Go to Amazon.Com and put "rational emotive therapy" in the book search box.
2. Go to Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
and get the catalog. (This is the homebase for Dr. Albert Ellis, the founder of Rational Emotive Behavior Therapy.)
3. Look for a paperback, FEELING GOOD: THE NEW MOOD THERAPY, David Burns, M.D. While this title is written around the issue of depression, the general framework can be applied to coping with cluster headache.
This is true for many of the titles you will find at #2; REBT and Dr. Burns' cognitive restructuring approaches have been used for a wide variety of problems--the general framework is fairly universal, in this sense.
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