There is no evidence that CH, as a specific disorder, induces emotional distress, etc. There is a much larger body of literature about the impact of chronic illnesses, broadly defined, on the development of anxiety disorders, depression, and so on.

There is a limited literature suggesting that certain personality types are more sensitive to pain, feelings of powerlessness, and generalized emotional responses which make the underlying disorder more troublesome.

I'm going to throw a couple of articles at you--not as a diagnosis of your situation--but as samples of the kinds of research which link physical disorders to anxiety, etc.

Last, a link to a form of cognitive counseling which you might try on your own which can, with some self-discipline/practice, modify your emotional reactions to the CH. Cognitive therapies have been well researched and are quite potent but you may wish to consider consulting a therapist if this approach is of interest.
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Report of a study (from MEDSCAPE.COM):"Patients With Anxiety Disorders More Sensitive to Bodily Changes"

Sept 16 - Patients who have anxiety disorders appear to be more sensitive to bodily changes, which in turn suggests that the perception of panic attacks is reflective of central rather than peripheral responses, according to the results of a study published in the September issue of the Archives of General Psychiatry.

"Physiologic responses of patients with anxiety disorders to everyday events are poorly understood," Dr. Rudolf Hoehn-Saric and colleagues from the Johns Hopkins Medical Institutions, Baltimore, write. They compared self-reports and physiologic recordings in 26 patients with panic disorder, 40 patients with generalized anxiety disorder, and 24 nonanxious controls during daily activities.

The subjects underwent four 6-hour recording sessions during daily activities while wearing an ambulatory monitoring device. The team collected physiologic and subjective data that were recorded every 30 minutes and during subject-signaled periods of increased anxiety, tension, or panic attacks. Primary outcome measures included recordings of heart inter-beat intervals, skin conductance levels, respirations, motion, and ratings of subjective somatic symptoms and tension or anxiety.

Compared with controls, patients with anxiety disorders rated higher on psychic and somatic anxiety symptoms. Patients with anxiety disorders also rated themselves higher on disability scales and on sensitivity to body sensations. Both patients with panic disorder and those with generalized anxiety disorder experienced diminished autonomic flexibility and less precise perception of bodily states.

Patients with panic disorder had a heightened sensitivity to body sensations compared with generalized anxiety disorder patients. Autonomic arousal levels were slightly higher in patients with panic disorder, and this manifested itself in faster heart rates throughout the day.

"These findings suggest that, after having experienced anxiety attacks that are associated with strong bodily changes, patients become sensitized to such changes and may experience physiological symptoms of panic attacks..." [In effect, their bodies are acting as if there was a threatening condition even when this was not the case.]

The investigators note that the diminished autonomic flexibility found in both panic disorder and generalized anxiety disorder patients may result from dysfunctional information processing during heightened anxiety that does not discriminate between anxiety-related and neutral stimuli.

"It is important to measure physiological responses and not rely on verbal reports," Dr. Hoehn-Saric added. "A demonstration that physiological responses during anxiety attacks are milder than perceived can be reassuring to patients," he said. "However, the long-term effect of diminished physiological flexibility is unknown."

Arch Gen Psychiatry 2004;61:913-921.
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Imagine a person who is afraid of, for example, dogs and can experience an anxiety attack by thinking about meeting a dog or even seeing a picture of a dog. (Or, replace "dog" with your own feared thing/experience.) The anxiety is NOT being caused by a real life experience, in this situation (the thought or picture). The mental and body reactions which we call "anxiety" are a kind of habit response which are very real in their effects, however. Anxiety produces mind and body reactions which are measurable and have a real impact on how we function (and even on long term health of the body). 

The anxiety becomes an automatic response, beyond direct control of will. With this development, the person has experiences (anxiety) which are confusing or misleading--they cannot separate the real life threat from their body's automatic ("I'm in danger!") reactions. When dealing with cluster, for example, the effect of this anxiety reaction (and this is true for depression also) is that the person has increased sensitivity and reduced tolerance for pain; their sense of suffering is elevated and the capacity for effective self-treatment is reduced.

Medication can dampen the experience of anxiety but it does not unlink the reaction from the underlying thoughts or misinterpretation about the situation. ("I'm in danger"; "this will never end"; "I can' bear the pain", etc.) Cognitive therapies have been very effective (especially when combined with short term meds use) in teaching folks how to break this link.
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J Behav Med. 2006 Feb;29(1):61-7. Epub 2006 Jan 6.  Links
The contribution of pain-related anxiety to disability from headache.Nash JM, Williams DM, Nicholson R, Trask PC.
Centers for Behavioral and Preventive Medicine, Brown Medical School/The Miriam Hospital, Providence, Rhode Island, USA. Justin_Nash@brown.edu

Disability associated with headache cannot be fully accounted for by pain intensity and headache frequency. As such, a variety of cognitive and affective factors have been identified to help explain headache-related disability beyond that accounted for by pain levels. Pain-related anxiety, a multidimensional construct, also has been found to contribute to disability in headache sufferers. What is not known is whether pain-related anxiety is unique in contributing to disability beyond the role of headache-specific cognitive factors and emotional distress. The present study examines the influence of pain-related anxiety on disability, after controlling for pain, cognitive (self-efficacy and locus of control), and affective factors (emotional distress) in a sample of 96 primary headache sufferers. Pain, headache-related control beliefs, and emotional distress accounted for 32%, with locus of control related to health care professionals contributing unique variance.

IN THE FULL MODEL, WITH THE ADDITION OF PAIN-RELATED ANXIETY, ONLY PAIN-RELATED ANXIETY WAS A UNIQUE PREDICTOR OF DISABILITY. THESE FINDINGS SUGGEST THAT PAIN-RELATED ANXIETY MAY HAVE A UNIQUE AND IMPORTANT ROLE IN CONTRIBUTING TO DISABILITY IN HEADACHE SUFFERERS.

PMID: 16397822 [PubMed
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The cognitive therapy introduction for use with CH:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Just as a point of reference: some women have described the pain of a CH as worse than that of child birth!

We don't hear about it much anymore, with the development of effective abortive meds, but some folks used to beat their head on the wall because that deflected their attention from the CH! The worst example being a woman who banged her head on a concrete sidewalk, induced a stroke and died.

As you experience, the focused pain of CH is worse than the more diffused pain of physical traumas.....
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By the way, there is some excellent research on CH coming out of Italy, i.e., some good people there for you.
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And here is a list of commonly used treatments in Europe:

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
(Thanks to "cluster" for link.)
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I assume you were referring to Verap. when you said you had stopped using it. It is an effective med to prevent/reduce attacks and, while there is a potential for side effects, knowing what to look for is your best protection. Why deny yourself the benefit?

Here is a widely used protocol for its use:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

Welcome,

There aint no shame in the beast's game. So there should not be any in yours.

                                    Coach Bill

My wife used to tell me as much as a day ahead of time that I had an attack coming, but that was while I was still episodic.  Now I'm just hard to get along with all the time.  I agree that it is in part a matter of lashing out while in pain, partly due to sleep deprivation, and the meds can definitely cause irritability.  Verap did that for me a lot when I was on it.

Glad the Verap worked so well for you in keeping the beast at bay.  I hope he has forgotten you now that you are weaning yourself off the meds.

Please stay in touch!  I for one am very interested in how you get on.

Jerry

I said I would update you as to progress. Not good, I have now started another cycle of CH, my first for over 10 years. They started as very minor attacks about 10 days ago, left eye, probably 3 out of 10 for pain. I thought that this may be it but they have gradually become worse, not reaching the 10/10 I remember but certainly 6-7 and keeping me awake, waking me up and disrupting my sleep patterns. I have not started back on the Verapamil yet as I am hoping, probably stupidly, that it will be a brief attack and I can move on. I hate the thought of being back on tablets again but the recurrence has been very upsetting so I have to consider it. Maybe experimenting and stopping the tablets was not wise but I hung my hope on the fact that I had read that CHs often disappear in ones 50s and 60s (I am now 51). Are there many 50-60 year old sufferers out there?
Will keep you posted

Yakamoz wrote on Apr 20^th, 2010 at 5:47am:


I'm 56.  Still getting them, but I'm currently out of cycle.  (Started when I was 13, have been episodic ever since.)

Perhaps one outgrows them.  Couldn't say.

Sorry you've started another go-around.  Hope this one is mild and short.

Best wishes,

George

I have started back on the Verap now and will keep on it until I can get hold of some Oxygen. Where we live in Italy they are a little one dimensional as far as medicine goes and I hate the thought of going through the same old shit again with Drs trying different medicines and not being believed and, as I can only get Oxygen on prescription here (unless I was a welder I suppose!) I'm not sure I want to go through it. I have developed and unhealthy disregard for Drs over the years so don't feel inclined to trouble one unless I'm dying and, even then, only if it was imminent.
Thanks for the advice guys, feels better just to talk about it.