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)

You really brought up some questioning points and they're all true, but people who've never experienced a CH will NEVER understand and trying to explain these things to them is a waste of breath.

When asked how my headaches are doing - I just reply - "fine" and let it go at that.

I know it gets flustering to try to explain them to people, but unless you've been thru the pain of these things you just can't understand it. That's just a fact and it ain't gonna change.

People know what a migraine is.. You can tell them comparing a migraine to a CH is like comparing a goldfish to a shark.. (even my neuro liked that one).

But don't get yourself in a dither about trying to explain these things.. Just come here and you've got people who understand..  :-*

Very good list, shortstraw. Thanks.


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

When asked how my headaches are doing - I just reply - "fine" and let it go at that.

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."

Best explanation I ever saw came not from a CHead but from the world's greatest supporter. Writing to another supporter brand new to this nightmare she said, "They go to a place we can't access, nor ever hope to understand".

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

Cheers, Hoppy.

AussieBrian wrote on Mar 23^rd, 2014 at 4:55pm:

Best explanation I ever saw came not from a CHead but from the world's greatest supporter. Writing to another supporter brand new to this nightmare she said, "They go to a place we can't access, nor ever hope to understand".

And I hope that our supporters never have to experience anything like what we experience. But at the same time our supporters will have the best understanding of anyone without CH of what we go through.

Brian and Mike, you hit it on the head.

Excellent post, Shortstraw!

Jerry

Thanks for the responses
I should have said upfront that in general, my experiences with other people have been very supportive. As I said in one of my other posts, my work colleagues don't really understand but are happy to accept what I say on face value. Rather than understanding maybe we should be happy with empathy (not sympathy).

BarbaraD - maybe because I'm new (and naive), I'm trying to educate as many people around me as I can. Since my diagnosis, there at least 30-40 people on this planet that now at least know of CH's and if they tell a few people - who knows. I do use migraines as an example to compare (from a pain perspective only) but also careful not to belittle anybody else's pain ("my pain 10times worse than yours" etc)
Maybe as time goes on my enthusiasm may be bashed out of me and my responses will be shortened to "fine"

Aussie Brian - That quote is crushingly sad and brilliant at the same time.

Hoppy - Very happy for you to use it. I'm actually quite surprised my rantings could be of any help to anyone but go for it.

Mike NZ I agree, when I was writing the post, the thought went through my mind "why would you want to truly understand the horrors of CH's unless you really had to (a big thank you to my very patient wife). It"s bad enough we have to !

Thanks for listening

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.

BobG wrote on Mar 23^rd, 2014 at 1:40pm:

Very good list, shortstraw. Thanks. BarbaraD wrote on Mar 23rd, 2014 at 9:25am: When asked how my headaches are doing - I just reply - "fine" and let it go at that. 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."

Bob, I know I'm coming late to this party, but I read your response, and then read it to my wife. It was not only hilarious but so true...it's one of those things I wish I had said so I'll steal it and pretend I did. Thanks! blessings. lance

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

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

Although accurate Linda, my friends would have a field day if I said I had a brain disorder. It would probably just confirm their suspicions of me anyhow  :D

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

jc

Lets see, we have
Headache
Brain disorder
Neurological disorder
Good poop Lousy poop (my personal favorite)
The beast
and many other medical titles

CH's have many faces

PS
Congratulations Callico, very cool