23yearsofch wrote on Oct 2^nd, 2013 at 5:12am:

I got this from my therapist and several friends.
MY SIDES.
MY SIDESS

Because of stupid (STU-pid!) responses I stopped telling people about my clusters. Because most of the time they said "Do you think it's stress??" Of course if I gave up ____ or took [vitamin] that would do it. Then there were the commiserators who knew how it felt because they had clusters too and proceeded to tell me how they treated their migraines. There were the doctors who said "you couldn't have clusters, only 5% are women." Thirty years of NO support until I found this forum (although my kids and ex-husband were very understanding).

Responses?? Ya,,
I strongly remembered the day when I was feeling like Hell 
just because of headache and at that time I was in my college so I told my friend that I want to go home,, he replied uhh,,
Lets go we'll have a drink together and you'll be fine 

This thread is awesome because us with CHs know 99% of people do not have a clue.

I am on week 4 of a cycle now and was told today by a friend since pain killers don't work its either in my head or a brain cancer, and the only fix now was voodoo!

You know how your are at week 4 of no sleep and 3-4 CHs a day, I lost it on this guy!
I said, "you are freaking right, I need voodoo to suck the demons out of my brain"! Hell at this point if I thought voodoo would work I would be out with a witch Doctor burning candles dancing naked around a dead goat and a bonfire!

A couple from out Sunday School class told my wife that she gets headaches also and the only thing that works is rubbing olive oil and fresh peppermint oil on my temples. (Serious, who has the time to mix peppermint & olive oil during a CH!?!?!)

The best thing I have found to tell people is that I have brain damage caused by a dirt bike accident. It's not all a lie I have had bad wrecks on dirt bikes, but in reality it had nothing to do with CHs but people just say sorry and move on. During a cycle the worst thing in my opinion is a stupid response, it just sets me off! God forbid if I am on a steroid at the time, I will lose my cool and go off the deep end.

Anyway thank you to all my CH family I love all of you, just remember according to the world this is just in our head, and that's a fact it is a pipe bomb in our head!

Hmmmmm...on the one hand, you do have to admire her ability to stay on track! Ouch!!!!

Joe

The one I always get that always annoys me goes something like:

me: I get horrible cluster headaches for like over 20 years, theyre the worst pain imaginable theyre ruining my life.

other: Have you tried Excedrin

me: yeah, it doesnt work

other: maybe then, you should see a doctor

me: you think?

The most common agitator is some derivative of  "oooh, that's why you have the oxygen tank...I get migraines AND cluster headaches. I just take some painkillers and sleep it off."
-no more though, totally just saying defective hypothalamus and leaving it at that.

The worst by far for me though was my future mother-in-law.  After diagnosis but still while fighting for treatment.
She walked in on me having one she was warned would happen at 11o'clock and that I need to be alone for it. She literally climbed on top of me. Wrapped herself around me trying everything in her power to stop me from trashing.
•"Shhh, it's ok, shhh, it's over, they can't hurt you anymore baby, mommy's here, shhh, stop, stop, shhh"
It took  Kyle and his step father on top of my even more panicked thrashing to get her off me. When they pulled her out of the room reminding her I need to move and be alone until it's over she lost it at Kyle  yelling angrily
•"How the hell did a team of reputable brain doctors diagnose her with some obscure disorder? ONLY EMOTIONS CAN CAUSE PAIN LIKE THAT!  It's painfully obvious what she's going through is a symptom of posttraumatic stress syndrome from horrible sexual assault when she was too young to fully remember! Now let me back in there she needs me!"

Yeah,  she fights for every scenario she makes up in her mind over reality and data... but she does care.

A private conversation in the pub today about CH was interrupted by a rather loud lady who left us in no doubt that there is no greater pain on earth than childbirth. Nor can there ever be!

Us blokes know nothing about pure agony and this catastrophe that women must suffer is all our fault anyway, horrible and hateful creatures that we are.

I simply agreed with her and said I truly hope it's the most awful pain she ever has to endure, and I admire her for living through it to tell the tale.

I meant it, too.

Amen Barbara! I've had 3 and would gladly have 20 more (if I wasn't so old). No comparison!

This thread is amazing. 

I told a work colleague about my CH and it turned into a competition with her migraine. I surely know migraine, I had it as a teenager, and know it is bad enough. Well, I tried to explain how this has nothing to do with migraines. And she said well, it's still just a headache and kept on explaining how her face was numb from the pain she had to endure.
Eventually I agreed. It's "just" pain. And wished her the best for her migraines.

I mentioned this in another post (when I was linked to here to read about what people get to hear from non sufferers):

I am a vegan, and you wouldn't believe how many people develop a sort of hate for my life style choices. Well those people it seems are almost happy to hear that I have CH, because now they can say HA told ya. Eat some meat and it'll go away
I tried to explain that from all the vegans and vegetarians I know (and I know hundreds of them) I am the only one to have CH. So by any statistic this has nothing to do with it. (Not that I hadn't considered it, honestly if it was in my hands to put a stop to CH, OF COURSE I WOULD DO ANYTHING, eat meat, hell I would eat human flesh if it meant to stop CH) But they put their fingers in their ears and go lalalala..

About the only people i bother explaining the pain of cluster headaches to anymore are dentists.  I don't accept local anaesthetic,  i hate the numb feeling.  But, i don't flinch when i am in the chair.  Root canals, fillings, extractions, oral surgeries, it doesn't matter.  My heart rate doesn't even go up.  When they ask me if i have lost feeling to my mouth(always happens), i tell them no, i suffer from cluster headaches, so dental work has become a walk in the park for me, since cluster headaches are MUCH worse. 

Thats not the actual reason i can go into the trance, as i learned that trick as a kid...
  Regardless, a dentist who just got done peeling your gum off the bone and grinding part of your jaw away, knowing you felt every bit of it and didnt so much as breath faster, is not likely to discredit your description of pain.