Hi friends,
I want to ask you about your personality  ::) Let me explain.
I went to see a neurologist a few weeks ago for help with my ongoing cluster. It's been 4 years since I visited one and I had questions about the meds I took and needed some help.  
I told him about Clusterbusters and asked him if he could be of any help to me ....  He laughed at me: NO WAY! I showed him the article from Neurology, a fast screening made him conclude that it was American, and then put it aside :-/
He gave me a prescription for Lithium and Verapamil. I've had Verapamil before and it gave me trouble in my abdomen. I guess this man was just playing safe and didn't care for my situation but was just following the rules in the book. You guys may guess what I think of this man  :'(
But now the important part, he told me I had to get my life in order. He spoke about 'The mouse that roared' meaning that people with Cluster headache have a personality that must do to much from themselves. 'You don't have to have to do so much' was his advice. ( I hope this translation is clear enough, I still don't understand it even in my own language  ;) )
Actually for me this is a mindf*ck, in a way I can find myself in this description since I like to live and get the most out of it, even with these horrible pain and the way it constrains me. It's true that I make the extra step when needed to get things done. Should I loose some ambition and sit back more? Should I start to act more as a 'patient'? I refused to so far.
Last week I spoke with a relative who is a dentist and told him about this advice. He told me in his practice and al the years of experience he noticed that the people he knew with cluster headache were a certain type of personality. In a way he agreed with this neurologist I visited.
So, is it true?
Are you guys also exacting, importunate, insistent, unreasonable, assertive? (Translated from the Dutch word 'veeleisend' )

Greetings
Nelis

PS I left the prescription for what it is and went the Clusterbuster way, hoping it works for me.

Quote:

Headache. 1992 Mar;32(3):119-25. Episodic cluster headache. I: Personality and some neuropsychological characteristics in male patients. Levi R, Edman GV, Ekbom K, Waldenlind E Department of Neurology, Soder Hospital, Stockholm, Sweden. The etiology and pathogenesis of cluster headache remain largely unknown. Some previous studies have focused on personality characteristics in cluster headache. However, no consistent personality profile has been found. The present study applied two personality inventories, the Karolinska Scales of Personality (KSP) and the Heart and Lifestyle Type A Measure (HALTAM), that have not previously been used in the context of cluster headache. A correlation has been suggested between left-handedness and early learning difficulties, and cluster headache. Thus, these variables were included and measured by inventory techniques. Forty-nine out of 51 consecutive male patients with episodic cluster headache participated in the present study. As compared to controls, the cluster headache patients were significantly more anxiety-prone (higher scores in the KSP Somatic anxiety and Muscular tension subscales), less successfully socialized (low scores in the KSP Socialization scale), and had a more hostile attitude towards others (higher scores in the HALTAM Hostility scale). No relationships between left-handedness or early learning difficulties, and cluster headache disease were found. The implications of the personality differences for the etiology of cluster headache disease are discussed.

Quote:

Cluster headache and lifestyle: remarks on a population of 374 male patients. Manzoni GC Headache Centre, University of Parma, Italy. To investigate the relation between cluster headache (CH) and lifestyle, some lifestyle factors were considered in a population of 374 CH male patients consecutively referred to the same headache center, including 306 with episodic CH, 22 with chronic CH unremitting from onset, 20 with chronic CH evolved from episodic, and 26 with CH periodicity undetermined CH patients had jobs involving greater responsibilities and were more frequently self-employed than controls. In addition, their past medical histories often reported head injury, either with loss of consciousness (13.4%) or without loss of consciousness (23.5% of cases). As regards nonessential consumption habits, both cigarette-smoking and coffee and alcohol intake were more frequently reported in CH patients than in the general population, with a higher prevalence in chronic CH as opposed to episodic CH sufferers. In particular, smokers accounted for 78.9% of episodic CH patients and 87.8% of chronic CH patients--12.9% of episodic CH patients and 19.6% of chronic CH patients smoked over 30 cigarettes a day. Alcohol abuse was reported in 16.2% of episodic and 26.8% of chronic CH patients, while coffee abuse was reported in 6.9% of episodic and in 36.6% of chronic CH patients. Rather than pointing to a single lifestyle factor directly implicated in CH onset, my review suggests a common trend among CH patients to overindulge in certain living habits. PMID: 10214533

Quote:

Neurology. 1999 Aug 11;53(3):543-7. Cluster headaches: association with anxiety disorders and memory deficits. Jorge RE, Leston JE, Arndt S, Robinson RG Department of Psychiatry, University of Iowa Hospitals & Clinics, Iowa City 52242-1057, USA. OBJECTIVE: To estimate the frequency of mood and anxiety disorders and to assess memory and executive functions among a representative group of patients with episodic cluster headache (ECH) during the course of an acute episode. METHODS: We compared 21 patients with ECH with 21 patients with tension headache (TH) matched for age, sex, and educational level. Psychiatric diagnosis was made by a semi-structured interview and Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria. Quantitative measures of depression and anxiety were obtained using the Hamilton Depression Rating Scale and the Hamilton Anxiety Rating Scale (HARS). In addition, all patients received a neuropsychological evaluation to assess basic memory and executive functions. RESULTS: Of the 21 patients with ECH, 5 (24%) met DSM-IV criteria for an anxiety disorder during the year before the episode. Panic disorder was diagnosed in two patients (10%). The remaining three patients (14%) met criteria for generalized anxiety disorder. Of the 21 patients with TH, 2 (10%) met diagnostic criteria for an adjustment disorder with depressed mood, and 1 (5%) met criteria for an adjustment disorder with mixed anxiety and depressed mood. HARS scores were higher among patients with ECH (Kruskal-Wallis, chi2 = 4.3, df = 1, p = 0.03). ECH patients also showed significantly lower Auditory Verbal Learning Test scores (Kruskal-Wallis, chi2 = 6.5, df = 1, p = 0.01). CONCLUSIONS: When compared with a group of patients with TH, ECH patients showed a higher frequency of anxiety disorders during the year before the onset of headaches and significantly greater HARS scores during the episode. In addition, patients with ECH were selectively impaired in verbal memory.

Quote:

exacting, importunate, insistent, unreasonable, assertive

huhhhhh????this is our personality's features???
we are unreasonable?? :o
i guess we should do a party then.no particular reason for it ;D

by the way i am impressed with the dentist who has managed to see all these clusterheads and moreover noticed a certain type of personality.next time i will go to a neuro or a therapist to clean my teeth. :D

Hmm this is the 1st I've every heard of that my "personality" could be the cause of my cluster headaches...??  My personality has worked fine all my life as I am laid back for the most part and have a great sense of humor.  So let me get this right... Even though my personality served me well up until I hit my mid 30's now all of a sudden it's causing or has a strong relationship with my CH ???   ::) :-?

Suddenly I feel like quacking like a duck....

Or the other way around, your personality doesn't cause your clusters; what causes your clusters has also helped form your personality.

The thrust of the abstracts BobP has posted is reflective of the research on this question: Our personality DOES NOT cause CH but our personality can influence how well we cope with CH.

I've posted a number of items along these lines with my "essay" (Pain vs. Suffering, on the OUCH site) offering an approach of altering our experience of CH via changing how we think about the experience.
=========
Pain. 2009 Apr 24.  
Personality profiles and subjective perception of pain in head pain patients.

Mongini F, Rota E, Evangelista A, Ciccone G, Milani C, Ugolini A, Ferrero L, Mongini T, Rosato R.

Department of Clinical Pathophysiology, Headache and Facial Pain Unit, University of Turin, 10126 Turin, Italy.

Little or no information is available regarding the effect of the personality characteristics of headache sufferers on the quality of pain perception. The aim of this study is to investigate, in head pain sufferers, the relationship between the personality profile, assessed by the MMPI, and the different dimensions of pain (sensory, affective and evaluative), as assessed by the MPQ. Three hundred and seventeen patients with Migraine and/or tension-type headache (episodic or chronic) and myogenic facial pain were included. The Italian versions of the MMPI-2 and MPQ were administered, and the pain level was measured by the VAS. Cluster analysis based on the clinical scales of MMPI identified four personality profiles closely corresponding to the MMPI profiles obtained by the previous researchers: "depressive" (Dep.), "emotionally overwhelmed" (Emot.), "conversive" (Conv.) and "Coper". Differences in MPQ scales between personality profiles were investigated by means of a general linear model (GLM), adjusting for sex, age and pain level and type. Results of GLM analysis showed that the affective dimension was significantly higher in cluster Emot. than in Dep. (p=0.027), Conv. (p=0.002) and Coper (p=0.003). Total PRI was significantly higher in Emot. than in Conv. (p=0.010).

THE FINDINGS OF THE PRESENT STUDY SUGGEST THAT A SPECIFIC PERSONALITY PROFILE (EMOT.), CHARACTERIZED BY A HEAVY EMOTIONAL BURDEN, MAY INCREASE THE AFFECTIVE DIMENSION OF PAIN WITH RESPECT TO A DEPRESSIVE PROFILE (DEP.), A CONVERSIVE PROFILE (CONV.) OR A NORMAL PROFILE (COPER), INDEPENDENT OF SEX, AGE AND PAIN LEVEL AND TYPE.

PMID: 19394764 [PubMed]

Bob Johnson wrote on Aug 5^th, 2009 at 9:38am:

................ Our personality DOES NOT cause CH but our personality can influence how well we cope with CH.............................

It wouldn't take too many studies for me to believe that  ;)

Marc

Bob Johnson wrote on Aug 5^th, 2009 at 9:38am:

The thrust of the abstracts BobP has posted is reflective of the research on this question: Our personality DOES NOT cause CH but our personality can influence how well we cope with CH.

Note: Coping is after the fact of the CH or pain hit.  This is not technically personality based it is "Coping Skills" Granted each person has different coping skills and this can depend on how one was raised or the Current stresses in their life, which may in fact have no bearing on "personality".  

I have noticed that if I am more stressed I may get a few more CH hits than normal but, how I cope is not based on my personality, it is based on my coping skills at the time of the CH Hit.  Higher stress may weaken my normal coping skills and make the pain "seem" more intense or unbearable, even though at other times when less stressed I cope better and as calmly as possible run for the Imitrex shot.  But again this is a Stress Factor and current situation coping skills factor, not necessarily a "personality factor".   Just my opinion.

Ok Stepping of my soap box and still feeling like I should be quacking like a duck.  ;)

Stress reduces CH's for me. Big time overload of stress makes me almost pain free.

My wife suffers from migraines and has exactly the opposite problem with stress. We make quite the pair  ;D

In the last several years being associated with this family I have observed quite a number of different personality traits.  Especially among the newer members of the family.  Some want to be pampered, some want to be babied and be given a magic pill to stop everything, some want the unvarnished truth and only CH related info, others are looking for community to help give them the support needed to cope with not only CH but the other pressures that bear on life as a result (and sometimes totally unrelated).

What I've observed among those who have stayed around a while though is that many of the more assertive dominant types that want to control their CH and life in general tend to mellow out a bit and learn to go with the flow.  They retain their dominant personalities, but seem to ease off a bit .  Others who tended toward needing to be babied have grown up and learned to take control of their situation and to deal with it.  They don't really change personalities so much as change their focus in dealing with life.

I know I have had to grow up quite a bit in dealing with this mess.  I had learned to "handle" it somewhat before finding CH.com, but with the help of this family I have learned from some the need for strength, from others the need for patience, from still others the need to rely on others for help, and from still others the need to be of help to those in need.  In this I have learned that by helping another I receive the strength needed, and with it have learned (somewhat) patience, and the humility of being willing to ask for help myself.

My personality has not changed, but by personality has been buttressed by what I've learned in this process.

That was a long answer to a short question. ;D  I hope it made sense.  Especially to you, Nelis, as I understand English is not your primary language.  (although your English is better than most of ours).  If I didn't make it plain what I meant (and I may not understand either after getting some sleep) please ask and I'll try to clarify.

Jerry

interesting post i only have one probem and that is I dont have a pesonality. im going through a personality change at the moment. for example yesterday i believed i was Napoleon and today im tending towards Jack the ripper at least i now know this could be a result of CH.

Mark (cant wait to see what i become tomorow  :D)

McGee wrote on Aug 7^th, 2009 at 2:56am:

...im going through a personality change at the moment. for example yesterday i believed i was Napoleon and today im tending towards Jack the ripper...

Yesterday I thought I was a pup tent.  Today, I think I'm a teepee.

My doctor says my problem is that I'm two tents.

Regards,
Jim

I'm more of a follower.

I do suffer from anxiety a lot (most of my life) and muscle tension.

I've never been hostile to others, just the opposite.

Something did jump out at me that I totally forgotten. I remember my mom saying I fell out of a window when I was a baby and hit the concrete driveway. Smashed one side of my face. BUT I don't know if it's the side I have clusters? (head injury?)

there is something that really bothers me with this topic that i am not quite sure what is it yet.

for example

Quote:

'You don't have to have to do so much'

what does this mean????some of us have really hard time to keep a job and maintain relationships with this f@@^#g pain coming around on and on.solitude is always tempting at least for me and it's really hard not to give in.So much like what??the desire to have an ordinary life like it was supposed to be??


Quote:

have a personality that must do to much from themselves

the way i see this statement is that there is no really good preventative treatment,searching for any godnamed abortives
no idea what's going on with ch
no matter what medical reports suggest from time to time
and now we should work out with our personalities??

some random thoughts and time for a cold cold shower :-/

Black, the theme of these messages is NOT that we should be hopeless about the various treatments for CH or that we should stop searching.

The idea here is that there is a complex interplay or interaction between our personality/our coping style and the problem/stress which we are facing. When faced with a problem/stressor our "coping style" can either aid us in dealing usefully/effectively or it may become a barrier to handling the problem.

For example: a student is facing an important test. A little anxiety will sharpen his thinking and help him perform better; too much anxiety works to reduce our thinking ability and so performance is reduced.

About 50% of people who have had a heart attack develop a major depression. But depression works to reduce our energy, mental focus, and ability to make decisions, to take needed actions, etc.

Depressed patients often do not care for themselves effectively and so threaten their health outcomes.

In a fascinating study, people who took a stress reduction/control workshop reduced their use of medical services by 2/3. Rather than having their stresses turned against their bodies, they had learned how to more usefully cope with their problem(s) (which were not medical, in the first place).

Over the last 20-years we have seen an abundance of studies showing this relationship and how un-controlled stress can have important, harmful effects on our bodies and emotional life. So, the thrust of this thread is to pay attention to your personal coping style and, if you believe it impairs your ability to handle you CH, then you may wish to consider that getting some assistance would be useful/helpful/beneficial.

Some see the glass as half empty.

Others see the glass as half full.

Engineers see the wrong sized glass.

Brew wrote on Aug 10^th, 2009 at 3:11pm:

Some see the glass as half empty. Others see the glass as half full. Engineers see the wrong sized glass.

..and yet others don't worry about how full the glass is just as long as there is enough in it.  ;)

Thank you friends for all these thoughts!

Your emotion Black was the same I had in the first place.
But I got rid of it since I'm convinced that it's like BobP said; "your personality doesn't cause your clusters; what causes your clusters has also helped form your personality. "

And like Jerry says; you have to grow into dealing with a cluster head. (If I understood you well?).
I guess this will never end, (but doesn't this count for everybody?)

I read your essay Bob_Johnson and I appreciate you sharing your insight with others. I think it's of great value to really understand what you mean. I have learned that a big part in dealing with pain is your perception of it, which is heavily influenced by your emotional state of mind. Pain is the perception of a feeling. ( I felt philosophical the last time I dosed the shrooms  ;) )

It is a very good idea to have a party for no particular reason!
Nelis

Since it almost sounded like the neuro was implying that clusterheads all tend to tell him how to do his job by suggesting treatments or bringing in information about clusters, I would have had to tell that neuro that when a clusterhead deals with this crazy a** pain time after time, and gets little REAL HELP from even the doctors from which they seek it... they LEARN to "do so much for themselves."

Or maybe I misunderstood what the dude was getting at.  ;)

Brew wrote on Aug 10^th, 2009 at 3:11pm:

Engineers see the wrong sized glass.

Architects and designers see the wrong shaped glass.

People with OCD see the mineral deposits on the glass, and make a note to buy more Rinse Aid in their little notebook.

Chemists see 218 ml, or 12.11 mol.

Chemophobes see chlorine, atrazine and unhealthy levels of sodium.

Clusterheads doing the Water-Water-Water method see 38 minutes before they need to drink another glass of it.

I see alive people running for the bathroom ...   ;D

Nelis wrote on Aug 4^th, 2009 at 5:37pm:

So, is it true? Are you guys also exacting, importunate, insistent, unreasonable, assertive? (Translated from the Dutch word 'veeleisend' )

yes we are. your doctors assumption about the use of lsd being american is one of the reasons why.

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your doctors knowledge of headache treatment  seems limited at best. if you already know everything about something you can't learn anything.
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Being new to this site, I am careful about my comments, but it doesn't take long to know that Bob Johnson is a voice to whom you should listen.  His contribution is rarely of his personal opinion, but rather of documented research and information.  I applaud him for taking the time to respond to so many people with this info in such a neutral, compassionate, and well educated manner!  Thank you, Bob!

Pertaining to the topic...I can only say that for my family, the 10 of us that have been affected with cluster are all very different in personality type.  We don't even use the same methods of medication.  Though, one thing we do share is a heritage of mild anxiety disorder that has not be specific to the 10 cluster sufferers alone, but others in the family as well.  Also, our anxiety is as different in each of us as the way we deal with it, however, all of us have been very functional in society.  My grandmother and mother modeled well that anxiety and clusters are just a very small (though horrific at times) part of who we are and what we need to accomplish.  I wish I could recite the research that suggests we can change our brain circuitry by what we think and do daily.  Reminds me of the Alcoholics Anonymous saying, "Fake it until you make it."  Thankfully, I have never had a reason to attend AA, but I use that saying often in working with my clients and students.  It does work because I feel terrible right now and I am determined to finish this.  I'm in the fourth week of my cycle and the medication is not agreeing with me.  (I have allowed myself to rest, be discouraged, and even have a pity party for just a few minutes a day, then I move on.)  You can do it!               

here- let me allow you to see into my personality!!

or not!

crap, i can't believe these damn things are back.

but i am glad to find this place.

may i go cry now?  or no- i am much too strong for that. who you calling tuff, you ever had one of these things!!!!  get away from me... DON'T LEAVE ME YOU ______!!! omg get away... help me.!

:oFF :o

i can';t believe how perfect that smiley is.

We do not suffer from a personality induced disorder.

paul_b wrote on Aug 26^th, 2009 at 4:22pm:

We do not suffer from a personality induced disorder.

Speak for yourself.

I know only that lady CHeads become stunningly attractive as they reach the age of consent and remain that way for the term of their natural life.

(Longer here in Queensland because it's always so warm.)

Bob P wrote on Aug 4^th, 2009 at 5:56pm:

Quote: Neurology. 1999 Aug 11;53(3):543-7. Cluster headaches: association with anxiety disorders and memory deficits. Jorge RE, Leston JE, Arndt S, Robinson RG Department of Psychiatry, University of Iowa Hospitals & Clinics, Iowa City 52242-1057, USA. OBJECTIVE: To estimate the frequency of mood and anxiety disorders and to assess memory and executive functions among a representative group of patients with episodic cluster headache (ECH) during the course of an acute episode. METHODS: We compared 21 patients with ECH with 21 patients with tension headache (TH) matched for age, sex, and educational level. Psychiatric diagnosis was made by a semi-structured interview and Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria. Quantitative measures of depression and anxiety were obtained using the Hamilton Depression Rating Scale and the Hamilton Anxiety Rating Scale (HARS). In addition, all patients received a neuropsychological evaluation to assess basic memory and executive functions. RESULTS: Of the 21 patients with ECH, 5 (24%) met DSM-IV criteria for an anxiety disorder during the year before the episode. Panic disorder was diagnosed in two patients (10%). The remaining three patients (14%) met criteria for generalized anxiety disorder. Of the 21 patients with TH, 2 (10%) met diagnostic criteria for an adjustment disorder with depressed mood, and 1 (5%) met criteria for an adjustment disorder with mixed anxiety and depressed mood. HARS scores were higher among patients with ECH (Kruskal-Wallis, chi2 = 4.3, df = 1, p = 0.03). ECH patients also showed significantly lower Auditory Verbal Learning Test scores (Kruskal-Wallis, chi2 = 6.5, df = 1, p = 0.01). CONCLUSIONS: When compared with a group of patients with TH, ECH patients showed a higher frequency of anxiety disorders during the year before the onset of headaches and significantly greater HARS scores during the episode. In addition, patients with ECH were selectively impaired in verbal memory.

I have been looking for information like this to prove a theory of mine for many years. Thanks for posting.

What is theory Kika?

I just wanted to take a moment to say that your dr trying to perscribe lithium and verapamil was right on for a good defense against ch.  Many many many people hear take or have taken these two meds.  Some take them together for a better result.  I dont think your dr was to stupid in that sense.  He should have/could have perscribe oxygen for you as well.  You may want to read up on oxygen use and ask for that next time.  It is great!  Alot of people here use it to abort the ch with great sucess and there is no side effects as long as you dont smoke while you are breathing the oxygen.  :D