Some ponderings (I think it's a word)
I was asked yesterday, by a well meaning person, how my headaches were going and they were genuinely interested in my "condition". By the end of my answer I think they were actually more confused. It dawned on me how difficult it must be for people outside the community to really understand CH's as at times we don't.
Some points to support
They are called cluster headaches but they aren't really headaches
There is still generally no accepted cause and there is no cure
An attack can last from as little 15min to a gruelling 3hrs plus
You can be awake or asleep
A cycle can be extremely regular or extremely erratic, episodic or chronic
A cycle can last from 2 weeks to months to years to never ending
They can return monthly, yearly, 10 yearly or never
Life in between attacks and cycles can be normal
You can switch from episodic to chronic and back again for no apparent reason
CH's can lurk in the shadows and just be an annoyance or hit you right between the eyes and destroy your sanity
Cluster heads can be male or female, young or old, fit or lazy, overweight or under weight, labourer or office worker, it does not discriminate
Treatments can as involved as surgery or as simple as a prescribed water intake
Treatment depends on the individual and there are as many variations of treatments as there are variations of CH's
Pain killers are useless against an incredible pain
Energy drinks, generally warned against by the medical profession are a lifesaver for many
Many illegal substances are a very effective treatment for many
The internet is crucial for support and for often setting up treatments (D3 regime) who'd of thought
Most medications taken are for other conditions
It is generally accepted that it is not genetic but there are many cases of it being carried through the family to the children
The general medical profession know little of CH's
Onset is generally in your 20's but is known to happen in early childhood or in later years
Treatments can work well for years and then become ineffective unexpectedly
People all over the world who don't know each other, help each other unreservedly for no money or glory (WTF)

So I suppose we shouldn't be surprised that people don't understand. We probably should be surprised that so many do !
In saying that it still doesn't excuse stupity or rudeness

Thanks for taking the time to read.
No questions (they'll come)
No answers (better people for that)
Just thoughts (just general observations so please don't pick me up on specifics unless it deserves it)

Very good list, shortstraw. Thanks.

BarbaraD wrote on Mar 23^rd, 2014 at 9:25am:

Headaches off all kinds do what headaches are meant to do......hurt. Some more than others. Kinda like taking a "good" poop" or a lousy poop". You can say to the uninformed questioner "As far as headaches go, today's attack was "great, magnificent" It was a kip 9.8, lasted an hour, had me rolling on the floor, banging against the wall, sucking oxygen, screaming, scaring the dog, chugging energy drinks. It was one of the best headaches I've ever experienced." It was a much better headache than the little bitty kip 3 that I had yesterday. It didn't didn't even have enough power to bring a tear to my left eye."

G'day Shortstraw,
Would you mind if I shared this on my facebook.

Cheers, Hoppy.

Brian and Mike, you hit it on the head.

Excellent post, Shortstraw!

Jerry

Thanks for letting me share this on my facebook page. I've
been living with the nightmare of CH's for decades now,
and could never explain the pain we have to endure. You
have made it word perfect and I thank you for that.

Best, Hoppy.

[quoteThey are called cluster headaches but they aren't really headaches] [/quote]

To other people..I say I have a brain disorder.

I call it a neurological disorder that causes severe pain around the eye.

jc