Thanks Jack - response to your observation question

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Posted by gary ( on January 01, 19100 at 23:23:01:

In Reply to: At your urging I read your post very slowly and carefully and. posted by Jack Boyd on January 01, 19100 at 19:35:04:

Hi Jack

I don't think we eally disagree on the issue of stress as related to CH attacks, because I think we may be hearing the word differently.

a. Most of it is semantics - I am very skeptical of what is COMMONLY called "stress" in the last 10 years or so.
Once upon a time "stressed" meant being in a definite reduced physical capability & health condition, because of sustained or unusual demands on the body, which then often also leads to reduced mental capability
THAT is what I am talking about when I say stressed.
Simply - the product of exhaustion.

My current cluster, though prolonged - over 4 months now - has been very mild & controlled EXCEPT for 3 brief periods in which I have really overdone things while skipping sleep (like the allnighter I just pulled while driving 900 miles nonstop)
In EACH such case, I have been rewarded with 3 - 4 days of dramatic increase in the frequency & intensity of attacks, until I get them "hammered back into their cage" (oxygen immediately at each twinge, rest at any cost, lots of fresh air, lots of benadryl)
THAT is what I am trying to say about "stress" making things worse -

but I'm talking REAL stress,
not simply "letting things get to me", or emotional instability

Which is what I see as the now psychobabble popular concept of "stress"
(as in, I'm so stressed, I got stood up for the prom", or "my boss is always in my face and I can't take the stress")

That's not stress, that's emotional immaturity, plain & simple, and I DON'T personally credit that with much validity.
Almost ALL of it can be IMMEDIATELY reduced or eliminating simply by managing our physical life responsibly AND not CHOSING to do things which predictably upset us emotionally.

Seems to me it has been mainly hyped by the commercial psychology & patent medicine industries to drum up business, and they've done a hummer of a job selling it.
I DON'T believe any emotional/psychological event or tendency produces our susceptability OR starts a cluster

I DO believe that LOSING CONTROL of our emotional/spiritual/mental life during a cluster may lead to more frequent and more painful attacks -

I ABSOLUTELY believe that the OVERALL EXPERIENCE of an attack is less damaging if we use a variety of mental and emotional stability techniques during the attack, and that the experience is MUCH harder to bear if we let ourselves (or purposefully) slip into panic, screaming, etc.)

In my experience, if I am having a severe attack and "lose it" - the perceived pain, collective agony - whatever you want to call it, IMMEDIATELY increases

re: pain component of the question:

ABSOLUTELY agree with Jack

-and we ARE ALL capable of managing the level of perceived pain - and thus the ACTUAL discomfort - whether we know it or admit it. I think Jack and I are saying EXACTLY the same thing in this regard, and many of the techniques for coping with attacks which I have posted from time to time use EXACTLY this principle.

You might call it the "yeah, it hurts like hell - so what ? - don't let it bother you" style.
It works.
Combine it with your other coping techniques & you will do better. Guaranteed.
Ignore it & you will hurt more than necessary.
but simple doesn;t mean easy, and it AIN'T easy

It requires a LOT of practice, concentration and study ahead of time, so that you have it available when needed.
So, lots of people who demand an all-or-nothing miracle pill don't want to think about it, but guess what - it's free, requires no prescription, works on other maladies as well, and once you have it nobody can take it away

it sort of lives in the place between the intellectual and the spiritual (small "s" spiritual, NOT religion - big big difference)

I will be glad to expand on that with anybody who seriously is interested. Email.

I was saving that for another post to keep it separate. Wish the hell there was a different conventionally accepted name than Cluster Headache -
Cluster is good, but inclusion of the H word causes us HUGE problems - because 99 people in 100 hear it and immediately decide they have all the answers to our problem
even though they don't have a damned clue,
and in many circumstances that misunderstandin can have material and substantial repercussions

There have been a LOT of names used over the last 50 years. Some of them have been split off, or split up, to indicate different maladies. (like Cluster Headache vs Chronic Paroxsymal hemocrania vs Histaminic Cephalgia, Horton's Headache,and yes, the hated Cluster-Migraine etc)

It is still an education campaign to get it "out there" that these are very very different from migraines BECAUSE for so long they were lumped in as a type of migraine, sometimes actually in the med literature, and most of the time in the commercial layman's health market.

I DON'T fault a layman for not realizing the difference at first, I guess I need to be "generous" with the general medical community because this is NOT anywhere near their most important concern with which to keep current -
but as far as any neurologist or haemotologist specializing or working with migraine * related ailments - if they are still mixing the two they ought to be disbarred, or defrocked, or deflowered, or whatever it is they do to quacks.

Personally - I try to AVOID using the term cluster headache altogether, because it will predictably lead to misunderstanding and often mistreatment on the part of people I need to deal with, and I NEVER refer to the short pain periods as headaches - I call them ATTACKS

What I mostly do is not bring it up at all EXCEPT for a couple circumstances:

a. somebody asks me about it out of curiosity ,seeing my oxygen, or whatever, and I chose to try to answer them
b. I need to explain to justify something else
(like why I missed work, get rid of curious cops, etc)
c. I'm dealing with a medical caregiver, etc. where i NEED to have them get it right

Then they DON'T get a name -
they get an explanation, along the lines of:

"I have a neurological problem involving a physical abnormality in the hypothalamus which spontaneously causes a disruption in my response to a variety of environmental stimuli, and creates long periods when I get several incredibly painful attacks a day in my face, scalp, jaw and around my eye. It is well described and has been long diagnosed, but the docs don't have any reliable treatment yet."

A predictable challenge here is:
"but what if people just want a short answer?"

no matter WHAT MTV, political pollsters and semiliterate airheads insist - THEY'RE NOT RIGHT, THERE'S JUST A LOT OF THEM

My answer either answers the question on MY terms, or drives the nosy SOBs away.
important to newbies learning to cope with this -

REMEMBER - you don't owe ANYBODY an explanation for who you are, what you do or why you live your life the way you do, UNLESS you CHOOSE to enter into the discussion.

People often post questions: "well, what should I tell ______________" -
well, USUALLY it's none of their f'ing business to begin with - stop worrying about being a "people pleaser" - that's the cheapest and most meaningless way to validate yourself there is

Ask yourself WHY should you feel compelled to indulge them?, unless you're in some transactional relationship with them where they have a valid claim on your attendance, labors or attention. Otherwise - screw 'em.

Which means talk to your work supervisor straight & clear so you don't get in any jackpots on top of the CH, but tell those annoying coworkers to mind their own business.

It means have a clear, correct answer ready when you get officially challenged for carrying an O2 cylinder into a public place, but to hell with what anybody present that sees you thinks of it.

If you catch them staring, and it annoys you:
try shoving the airline down your pants, turning on the valve, and putting a big grin on your face - all the while returning their stare. Then give 'em one of those lifted eyebrow, headnod type "want some" gestures.

they won't bother you any more

Think about it.

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