I was thinking how to let a non-cluster person understand the pain level without harming them (much).

It's a 1-10 scale

Take a mug of hot water, for each point determine the temperature of the water and the person has to put a finger in it and leave it there.  There are many nerves in the finger, the worst pain I ever experienced was getting my finger jammed in a belt sander.  When a doc asks where I am on the pain scale I explain my definition of a 10.  I've had clusters come close to that, but only rarely.

(Sorry for centigrade folks)
It could be:
1 = 105 f.
2 = 115 f.
and on up to a 10, which might be near boiling. 

I doubt the typical person could stand a 3 for more than a few seconds.

Hi Nervely,

I totally understand your need for "civilians" to understand this "pain". For years and years
I felt the same...almost a desperate need for others to get it. I gave up...how do you explain a
pain to "others" when you cannot even fathom it yourself...it is indescribable and incomprehensible....
and they will NEVER get it.

The best I could find...and then let it go.... was to ask them to imagine the worst headache they
ever had...even invoking the "M" word...then multiply by 100. They, of course thought, I was
exaggerating. Also tried asking them to imagine slamming a car door on a finger or hitting a thumb with hammer....over and over again.... boy howdy that's a similar pain. But the absurdity of that scenario made some of them laugh. Trying a different tack, I asked if they could imagine that CH even makes your hair hurt.... but, while true, even I find that "funny".... in a macabre sort of way...and I'm 'bout bald as DJ...............

Where I eventually got to was to carry myself in such a manner...no whining, no martyrdom, no pity parties, got something to deal with right now...I'll be back...... that while they didn't know exactly what it was that Jon was experiencing...if he says it's bad...then it's BAD!


YMMV

Best

Jon

PS I like the Kip scale too...but then...that's clusterhead language.............and yes 10 is quite descriptive....but over 34 yrs only 3 people have ever seen me get hit...so I suppose sending them
to a youtube ch hit...if they are willing... might just do it

Prefect, Brian. Thanks.

Brian,

Great poetic description 

Stay Positive

Con

I completely agree. I worry that others think I can't tolerate a regular headache. It is one of the reasons I become really quiet during a CH cycle. I am partially embarrassed.

I have found out that people really just don't care.
They are not interested in your pain, unless it means that you won't be hanging out with them.
If I'm repeatedly asked, I just tell them about a time I almost knocked myself out cuase it felt better.
Or the time I tried to commit suicide, only to wind up feeling better because of it.
I always speak with a chuckle and light heart, even when speaking about suicide. There's no point beyond that.

I have had one guy tell me that his dad must have them a lot worse cause I still get out of the house.
That pissed me off. One deep breathe and turn the other cheek, because perception is each ones reality.

Most of the time,  I will barely say a work when about these things to people, and this seems to be the best way to talk about them. A nod of the head, no eye contact, and a subject change. Done!

BTW, I also like the kip scale because it really seems to follow the progression of the attacks.  I get shadows of 3-6 on kip scale daily, with the attacks hitting me after work in the evenings. People don't get it; people don't want to get it--they can be sympathetic for only so long because life still happens and they have pain too. 

It takes a lot out of our families to sit, helpless, and watch us go another round.  All we can really do is try to describe it and then say thanks to those who don't question the degree of pain we say we experience.

The thing is, for all you guys out there, when women say child labor is excruciating pain--you don't question it, even though we can never adequately describe the pain.  There just has not been enough of us to indicate the level of pain consistently for years.  I think there will come a time when the degree of pain is finally accepted by people without us having to defend our statements.

Esheel31 wrote on Jul 5^th, 2016 at 1:18pm:




Great post.

I'm currently going through my first cluster period since I got together with my girlfriend, almost a year ago.  It had been three years since my last bout, which is the longest period of remission I've ever had since my first attack.

When I felt the first shadows, the early twinges, I was in semi-denial.  "Maybe it's not The Beast.  Maybe it's just tiredness or too much time spent in front of the computer or something."

As they got worse and it became obvious that a new cluster period was starting, I tried to describe what I was about to go through to my girlfriend.

I think I passed on the traditional "worse than natural childbirth" and "each attack is an equivalent amount of pain as having a limb amputated without anaesthetic" lines, and showed her a few videos on YouTube to prepare her for what she could expect to witness if and when she saw me having an attack.

Even then, I think she still probably thought I was exaggerating about how much pain I would be going through.

The attacks grew in intensity and frequency over the course of the next month.  When I had my first KIP8 in front of her, she was desperate to help, asking me questions every few seconds "Can I get you this?  Would it help if I do this?  What about this?"  Eventually I said "yes" to a cold wet teatowel, not because I thought it would help, but because I wanted her out of the room, not asking me questions.  It was actually surprisingly soothing on my shoulders/neck area, and on the side of my head/face, and so this became her "job" during my attacks - fetching fresh cold ones, as they only stay cold for a minute before my body heats them up to "warm cloth" levels.

The first time she saw me having a KIP9 she was in tears.  Even more than I was.

She caught the second half of a KIP10 a few days ago.  I had already had two attacks in the prior 12 hours that I had used my daily allowance of Sumatriptan injections on, and so this attack was going to be experienced "naturally".

When she arrived at my house I was collapsed on the cold tiles of the kitchen floor in front of the fridge-freezer with both its doors wide open so that the cold air would flow over me, clutching a teatowel to the side of my head that had inside of it an A5-sized bag of ice that had now completely melted, shaking and convulsing from head to toe, body almost leaping off the tiles every few moments from stabs of pain coursing through me, crying like a baby in the lulls and swearing like a trooper in the peaks (the actual "wailing like a moose that has been fatally injured by being hit by a car" phase had just passed before she arrived, thankfully).

Once this attack had passed, she no longer thought I was exaggerating with my original description of the pain.

After a really bad few days of attacks, I've decided to revise my description...

"Imagine giving birth with no anaesthetic three or four times a day for more than a month with no days off.  Now imagine you have to push those 120-or-so babies out through your eye socket, the babies are gripping onto grappling hooks connected to your upper teeth and optic nerve, you have extreme sunburn on your face, scalp and neck that is burning you up and making it so that you can barely even touch your own head and face, and this is all happening while you have a cork jammed up your nose, heavy weights tied to your hair, and the contrast turned so high up on your vision that the slightest bit of light feels like you're staring directly into the sun with a telescope."

I think that comes a bit closer to the reality of it.

Wow, I needed to get that out. 

AussieBrian wrote on Jul 6^th, 2016 at 5:54am:


Thanks Brian, will do!  She's the best!  I had a nervous breakdown at the beginning of December that's kept me off work, so she's spent the majority of the relationship having to deal with my depression, general anxiety and social anxiety symptoms along with my lack of spare cash to ever go out and do anything together, and now a CH bout on top.

All this, and she has a 5-year-old child from a previous relationship to look after >= 50% of the time!  I can't put into words how amazing I think she is for putting up with all this extra stuff that comes packaged with being in a relationship with me.

Imagine giving birth with no anaesthetic three or four times a day for more than a month with no days off.  Now imagine you have to push those 120-or-so babies out through your eye socket, the babies are gripping onto grappling hooks connected to your upper teeth and optic nerve, you have extreme sunburn on your face, scalp and neck that is burning you up and making it so that you can barely even touch your own head and face, and this is all happening while you have a cork jammed up your nose, heavy weights tied to your hair, and the contrast turned so high up on your vision that the slightest bit of light feels like you're staring directly into the sun with a telescope."


Excellent analogy musophil