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Friends and Family just don't get it!


davidj
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one of "my headaches". 

LOL ;D

Weird, i think near family try to deny it, to make it go away or something.

I get the same question all the time, you havent had any headache lately, do you? I`ts like, well..... yes, and then it`s yeah, but now it`s gone? Been like that for the past 6 years.  ;D

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I love this thread.

Several years ago, I was at a wedding reception with lots of people, many of whom were close friends who knew I had CH, and some of whom had even witnessed a very bad hit.

I was talking to one of those friends who asked me how I was doing with my CH.  I explained that I was doing extremely well with a combination of rc seeds and 100% oxygen.  There was a lady that I didn't know sitting across from me who was listening intently.  She started shaking her head at me and then pipes up "that is completely ridiculous".  I asked her why she said that and she replied that she was an RN and had never heard of using oxygen for a headache let alone something called rc seeds. 

I asked her how much time during her nursing training did she spent on headaches alone, and cluster headaches specifically.  She admitted she could not remember anything about clusters but they did spend a day or so on headaches.  I said "go back to school".

Sandy

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I asked her how much time during her nursing training did she spent on headaches alone, and cluster headaches specifically.She admitted she could not remember anything about clusters but they did spend a day or so on headaches.I said "go back to school".

LMAO!!!!!    ;D ;D ;D ;D ;D

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heres one for you guys . . . my boss came up to me one day and asked how i was doing with my headaches and what they were like . . . i told him they were awful and i'd give anything to make them stop, i told him that some women get them and say they re worse than child birth, the he replies " when did you have a baby" he chuckled and walked away, boy let me tell you i would have loved to push my hand thru his chest and snatch his soul before death, later i got written up for somethin and i confronted him about it and he told me that my headaches are not an accuse for my attitude and he claimed he never said "when did you have a baby" what a nut sack, not to mention hes the type who was born with a silver ennema up his ass and never broke a sweat in his life, his day will come and i just hope im there to see it

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The best one, but on our way there, i had a couple of stones to turn in my own personality. And now it`s just something funny to look back at and laugh about ;) Maybe easier to laugh in certain cituasions, after reading this thread for many?

Turn it to humor ;D

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Of course there is the option of not giving a damn what others think.......

My sentiments exactly.  I don't give a rat's ass what anybody else thinks.  I'm doing what I need to do with phenomenal success. The only other person who's opinion matters to me is my husband.  He's seen first hand the results of my "medication" and is all for it.  Even if he objected I would still do what I need to do.  I don't even care what my children think, which is something on the order of "OMG! Mom's doing drugs!!!!!"

Nobody matters.

Sandy

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Been a great weekend avoiding social gathereings for three days to avoid how ya doin with that ha thing? Not to mention that chit chat and trying to concentrate on a simple (not to mention useless) conversation hurts and isn't worth the pain. Easier to avoid people but you guys make me laugh and I know I never alone. Is it wierd to feel glad I met all of you? Yea...f_ _ _ that. Wish I never had to hear of this place! Jay

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I had a whole bunch of ears listening to my story over the fourth....asking questions, commenting, intrigued with the whole thing and all I was thinking about was "God, I wish I was one of them listening, commenting being intrigued."

I'm with you Jay!

This is one time I would truly rather be voyeur!

Cindy

ps After a 98% PF independence day, the bottle rockets exploded around the occipital bone below my right eye at about 1 am.  This was excruciatingly painful, like the damn bone was literally shattering from the inside out.  My wonderful 60 +/- days of busting shot to hell!  I am back in detox mode!!!

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I gotta say, my family got it.  They've seen it many times, but friends..  most dont.  And like everyone else they all have advice, I usually say, yeah I tried that, it dont work...   after hearing..  it dont work, it dont work, it dont work, it dont work..  over and over, all of their advice and ideas, alot of them get pissed and walk away, or say, "you think I dont  understand, I get headaches too?"  And I have to look them square in the face and say, "No...   you dont.  not a clue.  But hang around, you might witness one yourself, you still wont understand but you'll be a hell of alot closer.  Im not being arrogant, its just the way these stupid things work.  Im cursed to be "UN-Believable" untill SOMEONE see's it for themselves!!"...  thats usually where I have to walk away before I start screamin at them and their arrogant ignorance...  (most of these questions came between attacks, at family getogethers and whatnot, so I was already stressed to begin with)

Some look at you dumbfounded like, wow, your kiddin right?  A few, usually the loud and obnoxious types that like to strut their stuff, give you the..  Yeah right, your just tryin to impress people, routine.  Which usually ends up gettin them a, "Do you think this is some sick, twisted badge of honor?  That I like to strut around the fact that I have them?  I would give anything and everything to be rid of them, and Moron, if I could give them to you to make you a bigger badder ASS...  believe me..  you'd have them before you could say, Yeah right!!"

The only friends that understood...  well, even they didnt fully understand, but they knew they wern't your typical headaches, were my buddies Karl and Mike.  Mike would let me crash at his place when I got cought in the city during an attack.  And Karl, he just watched my back.  He asked me once after an attack, "Isnt there anything you can do?  I know you've tried alot of things but there has to be somethin."  At the time I didnt know any better but I told him no..   he just said, "that sucks man.  well, ive always got your back at any rate."  And believe me, that meant alot...   then the punk slaps me on the back of the head and say, "Lets go grab a beer!!"  and runs into the bar.  He was a very unusual charecter..  thats why I liked him. 

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This is the reply I received from my Brother in regards to me sending him the ouch article and asking if he had read it after his aspirin comment.

"I work seven days a week so, no I havenÂ’t had a chance to do much but work eat and sleep. But I will get to it."

I felt like writing back that it is 3 freakin pages long and he could read it while having his f&*ing morning coffee. But my cooler head prevailed and I came here instead where my real family is.

To paraphrase an old adage:You can lead a horses ass to water but you can't make him read.

David

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I just have to tell you guys what my neurologist said to me once, i should have it on tape, it can make me laugh no matter what.

After six years i was diagnosed, my doctor had to litterally force him to do more. And my doctor said it was CH, and a private specialist agreed.

When i was at my neuro, i said i had been misdiagnosed with migraine. Oh no, no no no. No? What then? I said yes, but what ever.

It was like throwing gasoline to a fire, he said no, i always make right diagnose. It was you giving me the wrong information. So if you had been given me right information at once, i would have been able to give you the correct one.

I always right, i never do wrong.

I laughed so hard i couldn`t nearly breath. He raised his hands, waving them around and cried out, We`re gonna calm down, calm down and we gonn take it easy now.

You gonna listen to me, and i`m hearing you. I`m the excpert here, not you, me.

I leaned back, and said come on then, let me hear what you `re telling me.

He started talking about o2, max flow 7. No, i said, was reminded the expert again. Tried again when told how to breath.

He then saaid, i as an expert, i have access to the best and newest information from all over the world. You don`t. Don`t believe what you find on internet.

I asked before i got home, how many CH patients he had over he years. You know, they don`t run down my doors, so, around one. I think.

Ok then...... ;D ;D ;D

I had to laugh even more, haven`t seen him since.

OMG, i don`t know how many times we laughed of this history ;D ;D ;D ;D

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Hey David, you are a better man then me.  I would have asked him what was more importatn while on the toilet this morning?  Sports pages or three pages about his brothers life?

Serenity now, serneity now

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I was talking to a neighbor one day and he had a friend over and both were drinking (explain a cluster to a drunk) my neighbor who understands and knows about the RC's asked me how I was doing with my headaches and his buddy popped off you get headaches too?..I told him I get head pain that is called cluster headaches.

he says to me "Dude I can help" with that said I had hopes this guy knew something I didn't (like finding clusterbsters)

he went on saying how his headaches just kill him (now I am thinking he is a sufferer also) never knew anyone in person that had them and thought for a minute that I have a new friend..turns out he gets sinus headaches and when I explained what a cluster was he was telling me that my pain couldn't be anything like his..

I asked him if he had the Internet at home.."yes" I told him to go research CH's three days later he came to my house and apologize for being an ass that night, that he had no idea what he was talking about and to get in touch if I ever needed anything.

I figured a good story like this might lift a few eyebrows..lol

I have been fortunate enough that my family did just as much research as I did and has helped me every step of the way...I cant tell you how much I wish that all CH sufferers could have what I do aside the pain..but all the understanding and help from family and friends.

when I told friends I am busting and what it was, and that there is no known cause or cure they all understand and say the same thing "you got to do what you got to do to get a decent day and sleep" even had a few wanting to bust with me..lol

for those that have no care about them I tend to avoid saying anything to them and just leave them in their own ignorance no sense trying to explain anything to someone that could care less.

    Darrin

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