I'm not in cycle right now, but wanted to ask a question of all sufferers.  Am I the only one who has in-laws that refuse to believe I have such a condition like CH's?  I have some who insinuate that I make them up just to get attention.  I cannot tell you how MAD that makes me!!! >:(  I just can't see why on earth I would want this??  It just baffles me!

Who else has this problem?

Send them to this site

Sorry that was short
I' ve been chronic all my life and people just dont understand the pain 

It's OK MDR.  They know about this site, but I think the fact they cannot "see" me in pain, makes them question it.  I remember how a friend of the family came into my home with her family when I had just ended with a CH.  I was sitting in the front room, experiencing the after effects with one eye shut and a bit of rocking while sitting.  She sat down in one of the chairs and just stared at me until I was able to speak again.  She didn't see the attack itself and I think after that, she doubted that I got any severe HA's.  It's like seeing the last 2 minutes of a movie and making a judgement based on that!  Anyway, to get to my point, her and her husband and kid hung around my husbands aunt, uncle and cousins a lot after that, and their attitude toward me changed.

Fast foward to now.  I feel like my honesty and character are under attack all the time due to that one instant 3 years ago.  Just because of that one instant, other aspects of my personality have been under question.

I almost feel like there has been a label automatically slapped on me!

when i tell people what i go through they look at you like a deer caught in head lights I tell them go see it on u- tube

And if they don't believe? The issue is not changing them but understanding why it's so important to you. Right now, you are under their control....not a good place to be.

Baseline: their ignorance produces arrogance--and there is no solace there for you.

Bob Johnson wrote on Oct 24^th, 2010 at 1:42pm:

And if they don't believe? The issue is not changing them but understanding why it's so important to you. Right now, you are under their control....not a good place to be. Baseline: their ignorance produces arrogance--and there is no solace there for you.

Thank you for your perspective Bob.  I really needed to read that!

You know you get CHs and you know the agony you go through. People here know exactly what it's like to go through a CH. So if some other person decides that it's all something you are making up then it's them who has the problem, not you, just like if they decide that the world was made by a flying spaghetti monster despite all evidence to the contrary.

Just concentrate on what really matters, that's you and the people who are important in your life.

Thank you Mike!


Everyone, you know, I've been around here for awhile, and even though I've seen a lot, I still need some reassurance at times.  To be honest, even though the pain is horrific, I am blessed toI belong with a fantastic group of people here.  I love this family.

Mel,

Your husband knows and still loves you.  We know you and still love you.  As to the rest, they try to make themselves feel better by making you out to be less than you are.  They lose, not you.  They lose your respect and confidence.  They lose the friendship and fellowship they could be having.  What have you REALLY lost?  Hanging around a bunch of self-centered, self-absorbed people who cannot see beyond the end of their noses. 

There is an old saying, "there is none so blind as he who will not see" that fits.  They don't WANT to see, because if they really did they would feel an obligation to do something to help, and they don't want to put themselves in that position.

I may be to harsh, but I really don't think so.

I think Bob gave you some very sage advice. 

Jerry

"The dogs bark, but the caravan moves on." Old Arab proverb

Live in and accept your husbands love and let the rest go.

Mel,
Sometimes, I don't understand the ignorance that some people show.  As a supporter (and you know that I've been on a different train with my daughter), it baffles me why someone would doubt you or anyone else.  Yes, I understand that there are some people who try to *amplify* their pain in order to get sympathy, but why in the hell would someone lie about this level of pain (or any pain for that matter).

Keep this adage in mind, "You can cure ignorance, but you can't cure stupid".

Carolyn

Mike NZ wrote on Oct 24^th, 2010 at 3:40pm:

if they decide that the world was made by a flying spaghetti monster despite all evidence to the contrary.

What evidence to the contrary!!?? ARE YOU INSINUATING THAT THE WORLD WAS NOT MADE BY A FLYING SPAGHETTI MONSTER??!!  >:(

Seriously though,  Melissa your in-laws basically sound like a bunch of class A jerks.

Of course most people don't care to try to comprehend what CH is even if it is clearly described to them. Let's face it, people are jerks about things like this, and many of us, like say ...me...for instance, would quite possibly be behaving the same way if we had never experienced CH.  :(

I don't tell anyone about my CH unless I absolutely have to - I've heard enough of the "it's probably sinus headaches", etc.

Hell I cant believe that I have such a condition as CH. After a few hours pain free I wonder if it wasnt imagined myself.
No one can feel that much pain and survive.

Mel I am often asked by friends and family but seldom talk about CH with others.
When they ask hows your headaches?  I say they are fine thanks. (I dont tell them they are the finest, most exquisite and purest form of pain one could ever imagine, but I want to) Some expect but dont get a long sad story.

I have decided its impossible to relate the pain and trauma we experience to others.
Human nature makes people, especially close people, talk amongst themselves.
People left to their own devices will figure it out if they wish. And if we dont provide details to the more talkative types they will either decide its worse than imagined, ridicule or ignore it. Thats their problem.
We have it made knowing there is a pain of such extremes that wont kill us.. Its like a cool secret that transcends all the little pains in life. Like a trip to the mountain and back with a view that only we can see.

Such is life.

bejeeber wrote on Oct 24^th, 2010 at 11:59pm:

Mike NZ wrote on Oct 24th, 2010 at 3:40pm: if they decide that the world was made by a flying spaghetti monster despite all evidence to the contrary. What evidence to the contrary!!?? ARE YOU INSINUATING THAT THE WORLD WAS NOT MADE BY A FLYING SPAGHETTI MONSTER??!!  >:(

How could I upset all those Pastafarians out there?

For those who are now confused, read the article below and all will be clear:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The flying spaghetti monster is about as valid an explanation for the creation of the universe as several other explanations, although I must admit to having a preference to the explanations with a grounding in physics myself.


MJ wrote on Oct 25^th, 2010 at 12:49am:

Hell I cant believe that I have such a condition as CH. After a few hours pain free I wonder if it wasnt imagined myself. No one can feel that much pain and survive.

Before I was diagnosed I remember reading up about CHs after being prompted by my better half as she thought it was a good match to what I was going through. But I rejected it as I didn't believe I could have something like that. It's "other people" who get things like that, not me. I do find it hard to imagine that level of pain once a CH is over, however that could easily be a coping mechanism I have.

Hey Mike, who says the flying spaghetti monster and physics are mutually incompatible? One tells us who, the other how. Personally, I think the universe is a bowl of good pasta and sausage. But that's just me. :D

As to why we care what others think? We do. Our instinct for self-preservation and the need to self-defend rises upon challenge. And we want sympathy, or empathy if you prefer, from others who are important to us. Knowing we want such things, and such things being either good for us or helpful are not the same thing at all.

Don't forget that pain is both pesonal and relative to the individual. That means when I am in pain it trumps any other pain anyone else might be feeling. I only get a glimpse of your pain when I experience something similar. While we don't wish CHs on our worst enemies, we do want them to understand we are not experiencing mild discomfort but life altering trauma.

Will we succeed? Probably not for most. But it is worth working with our dearest and most loved to find a place of mutual support and understanding.  Blessings! lance

This is a tough one Mellissa. Obviously my wife and daughters understand, they've seen me at my worst. The rest of my family have occsionally tried to understand, but when I hear myself trying to explain the pain, I'm almost embarrassed at what a whiney little baby I sound like!

Bob makes an excellent point...as a man..it used to be VERY important for me to try and make others understand that MY pain was the worst! Now I realize, that A: It's a waste of time to try to explain my pain level....and B: When I need to vent I have my wife and this board who actually understand, and for me, that's enough.

joe

My fiance understands,she has seen first hand. But there is not another person in my family that has any idea. They are concerned that I have this pain and say they understand but they dont have a clue. They need to change the name of CH becuse as soon as you mention headache people think take a couple pills and take a nap and you'll be fine.

mikstudie wrote on Oct 25^th, 2010 at 10:36am:

My fiance understands,she has seen first hand. But there is not another person in my family that has any idea. They are concerned that I have this pain and say they understand but they dont have a clue. They need to change the name of CH becuse as soon as you mention headache people think take a couple pills and take a nap and you'll be fine.

C'mon, it's JUST a headache! :D

Joe

What fantastic repsonses!  I am glad I started this thread, because for me, as well as everyone here, support from those we care about is so very important to our mental health.  It is agonizing when someone we thought understood us, and were close to, turns out letting their ignorance dictate our relationship.  And I find that very sad! 

Thank you all!  :)

Mel, theres not a family member in the world or anyone that can understand unless they have felt CH or have seen a full attack,thats just the way it is. The name "headache" makes people ignorant. I dont blame people when they dont understand ( I wouldn't). How do you explain to someone that you had a bad headache last night and had to walk around the neighborhood for 3 hours chuging red bull and chain smoking. :D ;D  Take a Excedrine and quit pissing and moaning,it's just a "HEADACHE"  :D

((((HUGS)))) Melly...

I don't even try to explain it to anyone that doesn't live under my roof.  Sure they've heard I suffer from "headaches".  But I feel like I'm wasting their time and mine in trying to explain it any further.  I start to feel like I'm whining.

Coworkers see me get hit but don't ever see me dancing with a screamer.  That's due to fast aborts from having Oxygen right in my cube.

When family is over, which is quite often, I dissapear and come back in a bit after another successful abort.  That's due to having Oxygen in my bedroom.  Most of the time no one, other than Andrea and the kids, even realizes that I was gone.

I am completely satisfied with the support and understanding of my immediate family and this one.

If you are looking for validation, don't look farther than those you live with.  It's just not that obvious to anyone else and there is no profit in trying to make them understand.

-Dennis-

Hi there Melissa

Love , Thoughts and understanding your way



Blue

Guiseppi wrote on Oct 25^th, 2010 at 10:40am:

mikstudie wrote on Oct 25th, 2010 at 10:36am: My fiance understands,she has seen first hand. But there is not another person in my family that has any idea. They are concerned that I have this pain and say they understand but they dont have a clue. They need to change the name of CH becuse as soon as you mention headache people think take a couple pills and take a nap and you'll be fine. C'mon, it's JUST a headache! :D Joe

Have a donut!

Jerry (for Sandie's Mom)

Mel,

I know we try our hardest to not be seen when getting hit, and you said one of your family saw you in the aftermath and didn't think much of it.  For quite a while I didn't go to church at night when in cycle (before chronic) because I always got hit during that time of night.  One Sunday though I got hit during the Sunday School hour.  I wasn't teaching that day, so I slipped out the door and went into an adjoining room that was empty and was pacing it off.  It only hit about a K5, so it wasn't all that bad, but one of the kid's mother came into the room and saw me.  She knew I had CH, but had no idea what it involved.  After seeing me walking holding my head and trying to be quiet she realized I DO have a serious medical condition.  She wouldn't believe it wasn't a bad one, but what she saw was enough that the whole church soon knew I was dealing with some SERIOUS pain issues.  She was able to empathize and has become a great supporter. 

I'm not suggesting you let the family see a bad hit, but if they were to be around during something it might give them just a bit of understanding.

I still try to stay out of sight if I'm getting hit at church, but I don't stay away any more if I can make it because most of the folks there have a better understanding of what it is.  They also know I can empathize with some of their medical issues which gives me a point of outreach to them.

Jerry

are you sure that if it wasn't this,it wouldn't be still for them/him/her(whoever) something else again on and on?

it's one thing for one not to be able comprehend the level of pain or the cause of ch making wrong assumptions along the way and another thing for one to insinuate making them up just to get attention(much much worser and shows that there is already something else beneath thats is not established sympathy at least).

just a thought.hope i am wrong

Lauren17 wrote on Oct 27^th, 2010 at 2:42pm:

His parents have been asking the spaghetti monster for help and telling us he needs to pray. Um, no, how 'bout that? .

Care to elaborate on that comment? 

My in-laws get that I have headaches, and sever ones. The problem is that they keep trying to find the cause. They'll actually ask me every time I see them if I thought of this or that, or say it must be Lyme disease (they're from CT). Father-in-law has a habit of trying to connect me with other people who have had "similar" headaches to see what caused theirs.

I know they care and do this for that reason only. Doesn't irritate me any less, but at least  know they're on my side.

For the doubters, just ignore them because they don't really know what they're talking about. I can't tell you how many people I've come across that ask if I've been under too much stress. People are just really unaware.

-Chris

his wife wrote on Oct 27^th, 2010 at 3:00pm:

Lauren17 wrote on Oct 27th, 2010 at 2:42pm: His parents have been asking the spaghetti monster for help and telling us he needs to pray. Um, no, how 'bout that? . Care to elaborate on that comment?

For everything you ever want to know about the flying spaghetti monster - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Actually, how do you pray to it? Grab some from the supermarket and cook it up with a good sauce?

And medical research has shown coronary-bypass patients who knew strangers were praying for them fared significantly worse than people who got no prayers:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I asked Lauren to elaborate on her statement, because quite honestly I was a little offended (as I'm sure others were as well) by what I thought was a reference to God (who happens to my Lord and Savior) as a "spaghetti monster".  I thought I may have misunderstood and was curious what she meant as I had never heard that reference before.  Before I put a post on the board, I've learned to step back first, which is why I asked her if she cared to elaborate (which she did).  She explained her remark, and apologized for her poor choice of words (just as I would if I happened to say something to someone that was offensive to them).  I made no remark to my beliefs, to hers, or to yours (Mike), and I'm not going to throw down the gauntlet and battle wits over this with anybody... and that's the end of it as far as I'm concerned....'nuff said.

In the immortal words of Bill Hicks:

"Then forgive me"

Sorry...don't know who Bill Hicks is...so I googled him.  It appears he's a comedian who deals with "mature, adult humor" and if you're under 18 you shouldn't visit his website.......SO, if that's who you are referring to...I'll take that as sarcasm.

I'm one who happens to have a great deal of faith in God.  I don't push it on anyone else, nor should it be done.  If I offer it and you refuse that is your choice, and it doesn't effect me in any way.  Nor will I take offense at your refusal.  All I know is the difference it has made in my life.  I offer to share my faith just as I share my experience with Oxygen, Kudzu, and 5hr Energy.  What you choose to do is your choice.  I'm not going to hold you down and put a mask over your face and make you breathe.

It is your choice, and I'll love you equally either way. 

Jerry

Quote:

And medical research has shown coronary-bypass patients who knew strangers were praying for them fared significantly worse than people who got no prayers

Hey Mike, I don't mean to be argumentative but it does depend upon the study and with what bias they began. In this study I believe the people were told they were being prayed for so rather than testing the effects of prayer, they ended up testing the effects of "what happens when patients know they are being prayed for." Not the same.

Besides, while such tests are interesting, they can't really test prayer's effectiveness or noneffectiveness. That's more like testing witchcraft which believes there will be an effect as willed by the spellcaster if everything is done just right: words, actions, ritual etc. That isn't what most think prayer to be. Rather than effecting my will (the motto of the Gardnerian) I seek to effect a divine will. Whatever that might be. I get there are objections to this, but what the heck? Hitchen's objections to those praying for him as he struggles with cancer have softened to the point where he now is no longer resentful (irrational if I'm praying to pasta) and instead is only skeptical (a truly defensible position.)

And guys, don't forget. We all have faith. Faith is what allows us to take someone else's word for the testing they have already done, or knowledge already acquired, and apply it without repeat testing ourselves. That's why we don't do stress tests on every chair we sit on. We have faith it will hold us. When it doesn't, that's when we become skeptical. For awhile. Until faith in the next chair kicks in. Those of us who put our faith in God are saying, in my experience and under my test parameters, God has not failed me in what He has promised me. That's all.

I try to encourage everyone to cultivate the faith they do have. It's opposite, and I've been there with the beast, is despair. Not skepticisim. I am a man of faith, and skeptical all to boot. I approach new ideas and new stuff with the same curmudgeonly resistance as any agnostic. But faith in god? Tested, tested and tested. And while my life has not been easy by any stretch (homeless 2x, sick, children in jeopardy, job lost 2, etc) I coulnd't have endured without the comfort I get from believing.

This is a critical element of our arsenal against the beast. Faith leads us to hope. Hope leads us to effective interventions. Effective interventions leads us to a happier day. Just my thoughts. God bless! lance

Ah, gotta love that Lance-you're a class act mister and you have excellent points.

Let's all just take a big step back and breathe a little, here, hmmm? I got irritated at the "I'm going to make my point but I don't want to debate this" statement- kinda a jerk technique, not gonna lie. I was in turn flippant- also a jerk move.

We are an interesting family, are we not? Not even united by a commonality like great grandma's earlobes; the only thing we have in common is that we were brought here by pain and despair and stay to help and learn. That is more unifying than earlobes any day. We are much more alike than we are different. Alike to the point where I know that my husband and I are through his cycle and Hiswife and her husband are not-  I know what that feels like. I can empathize, and do. And beyond that, she reached out to me when I needed it in the past, and for all yall who missed it she has a damn good sense of humor too. We should not just be family, but friends.

On that note, let me offer the three symbols of peace to Hiswife: An olive branch, a handshake, and a glass of red wine (universal female peace offering). Hmmm, I only have 2 hands...Okay, I'll balance the wineglass on my head. If you'd grab that one first, it has the biggest potential for disaster...

Lauren, I think you're pretty classy, too. Can I have the red wine if nobody else wants it? I prefer merlot, btw. Blessings! lance

Heck, you can have your own glass if you want! Pinot Noir fan myself, but Merlot if you want it!

Let's just make a little party of it, here at the bottom of the post: I'll pass around the wine, here's a cheese platter...hmmm, decorations are a bit sparse...

*********************************************

There we go, that's a touch more festive! I'd say I'd expect more guests, but folks abandoned this thread faster than rats jumping off a sinking ship once it took a turn there...

wimsey1 wrote on Oct 29^th, 2010 at 8:13am:

Quote: And medical research has shown coronary-bypass patients who knew strangers were praying for them fared significantly worse than people who got no prayers Hey Mike, I don't mean to be argumentative but it does depend upon the study and with what bias they began. In this study I believe the people were told they were being prayed for so rather than testing the effects of prayer, they ended up testing the effects of "what happens when patients know they are being prayed for." Not the same. Besides, while such tests are interesting, they can't really test prayer's effectiveness or noneffectiveness. That's more like testing witchcraft which believes there will be an effect as willed by the spellcaster if everything is done just right: words, actions, ritual etc. That isn't what most think prayer to be. Rather than effecting my will (the motto of the Gardnerian) I seek to effect a divine will. Whatever that might be. I get there are objections to this, but what the heck? Hitchen's objections to those praying for him as he struggles with cancer have softened to the point where he now is no longer resentful (irrational if I'm praying to pasta) and instead is only skeptical (a truly defensible position.) And guys, don't forget. We all have faith. Faith is what allows us to take someone else's word for the testing they have already done, or knowledge already acquired, and apply it without repeat testing ourselves. That's why we don't do stress tests on every chair we sit on. We have faith it will hold us. When it doesn't, that's when we become skeptical. For awhile. Until faith in the next chair kicks in. Those of us who put our faith in God are saying, in my experience and under my test parameters, God has not failed me in what He has promised me. That's all. I try to encourage everyone to cultivate the faith they do have. It's opposite, and I've been there with the beast, is despair. Not skepticisim. I am a man of faith, and skeptical all to boot. I approach new ideas and new stuff with the same curmudgeonly resistance as any agnostic. But faith in god? Tested, tested and tested. And while my life has not been easy by any stretch (homeless 2x, sick, children in jeopardy, job lost 2, etc) I coulnd't have endured without the comfort I get from believing. This is a critical element of our arsenal against the beast. Faith leads us to hope. Hope leads us to effective interventions. Effective interventions leads us to a happier day. Just my thoughts. God bless! lance

JMO,but Lance your a smart fellow. My faith also brings me comfort. :)


I would join you  two on that glass of wine but I would get a flipping headache. ;D

Mike, the buffet to your left has plenty of Red Bull...

okay, I'll stop- I have the potential to beat that joke to death ALL day- I know my faults!

Ahh, politics and religion..what better way to get website's motor running.

Let me just say, that honestly there was a reason I didn't respond or want to debate after my first post...(see previous sentence).  And also why I didn't mention my own beliefs.  So let me tell you a little about me if that's ok.  I'm not a religious fanatic.  Do I go to church every Sunday? Nope.  A few times a year if I'm lucky.  I use to go religiously (pun intended) until they changed ministers and got one who thought that ranting, screaming and bible banging was going to get his point across (totally turned me off...so Lauren I DO UNDERSTAND!)  But that didn't change my faith.  I have a daily relationship with God that's mine and mine alone.  I would never try to push my beliefs on someone else (again why I didn't want to debate the issue).  It's a source of strength, comfort, and hope that has gotten me through more situations than I care to remember.  My daily conversations with God are not about please this, or please that...it's more about being thankful for giving me the strength to overcome adversity and for blessing me with a life that exceeded my wildest expectations.  Don't get wrong I pray for change and for other people too.  But it's the faith, not the preaching, that I live with daily.  As an example (I can't believe I'm writing this as nobody but my husband and best friend know) my faith got me through one rough day yesterday.  I had a cancer scare, spent 4 hrs going through various testing.  My faith has kept be calm these past few weeks and while I prayed that everything would be ok, I also knew that my faith would get me through if it was the worst case scenario. That's just me and my story.  What anyone else believes or how they live their life is their own personal decision, and I respect that, just as they should be respectful of my beliefs. 

So...Lauren, hand over that wineglass girlfriend...here's to us!  Two of many supporters and sufferers who are here for a common cause.  To PAINFREE days for everyone!

*Raising glass* "To painfree days to Everyone!"

I will drink to that!

OK,OK, enough religion,lets talk politics. J/K  :)

But I will take a Bull on the rocks and a Imitrex chaser. :D

mikstudie wrote on Oct 29^th, 2010 at 9:45am:

OK,OK, enough religion,lets talk politics. J/K  :) But I will take a Bull on the rocks and a Imitrex chaser. :D

;D ;D  You're too funny!

Well Mel..................I hope you got your answers because your thread was completely hi-jacked. :)

Jimi wrote on Oct 29^th, 2010 at 10:29am:

Well Mel..................I hope you got your answers because your thread was completely hi-jacked. :)

Hmmm..maybe I misunderstand the term "hijacked." I thought the thread began with:


Quote:

Am I the only one who has in-laws that refuse to believe I have such a condition like CH's?  I have some who insinuate that I make them up just to get attention.  I cannot tell you how MAD that makes me!!!   I just can't see why on earth I would want this??  It just baffles me! Who else has this problem?

Seems to me pretty much everyone has been responding to this, in their own way. To whatever extent anything I said or wrote was hurtful or useless, I am sorry.

So, Mel...are you still out there? Please redirect us back to what it is you wanted to know, and I for one, promise to try and stay on target. Blessings! lance

wimsey, I'm always out there! ;D

It was a tangent, no biggie.  I got what I was looking for. :)

Sorry Melissa, :)
We owe ya one. ;)

Ahhh just a tangent, not a hijack? But...but...I wanted to be pirate!

Where ARRRRRRR we going with this thread?

Sorry for the hi-jack Mel...hopefully something positive came from it and we all learned a little more about each other and brought some of us close together..

Anyway, we've been lucky to have very understanding and concerned family members on both sides.  Hubby and how he's feeling is usually the first question asked by everyone. (Oh but they can be VERY irritating in other areas)  But I can relate to people not having a clue...Hubby went into a store he hadn't been to in a few months and knew the cashier.  He's been on/off pred for quite sometime and he hates how he looks (puffy face and weight gain).  The cashier with obvious shock yelled "What happened to your face?!"  Quite hurtful and embarrassing.  The same day a co-worker asked him, man you've put on a lot of weight lately!  Why people can make such hurtful statements is beyond me.  He explained his condition to both...a couple of co-workers witnessed an attack with no abort in site but a cold cloth and a fan, so they got a small taste of what an attack looks like.  Unfortunately, there are just ignorant people out there..I'm sorry in your case some of them are family members.   I hope this is just one area of non-support and they make up for it in others.  Take care...

Funny but just yesterday I was explaining CH to a co-worker and after a couple mins. I could see I was getting nowhere so I started talking about the weather.

My fiance really never seen a k9/10,I dont get them, 6/7 worse for me (knock on wood) so she doesnt really know how bad it can get,and frankly either do I. But I have a good idea. Anyway I showed her a couple u-tube vids and she was floored. Now she gets it. Mabey she will feel more sorry for me now and I'll get rewarded(if ya know what I mean) 8-) :D

mikstudie wrote on Oct 29^th, 2010 at 12:36pm:

Mabey she will feel more sorry for me now and I'll get rewarded(if ya know what I mean) 8-) :D

Careful what ya wish for...that's a known trigger for some  ;)

But then again..... ::)

there is better way to explain it to others.

i say is like eating the greatest punch in the face ever delivered again and again and while you are holdin your face from the pain stupid people come along to bother asking where is the punch cause they cant see it.

it usually drives them away,i don't know maybe looking for the punch but it serves me well.
i can help it.it's true:D

Lauren17 wrote on Oct 29^th, 2010 at 9:33am:

Mike, the buffet to your left has plenty of Red Bull... okay, I'll stop- I have the potential to beat that joke to death ALL day- I know my faults!

With my head fealing good this morning (7.34am) I'll pass on the Red Bull (I don't know if I could drink it without a CH) but I've fresh coffee / tea / fruit juices to share with anyone.

Although this thread has been partially hijacked, it's really just shown how diverse a crowd we are linked by an understanding of being impacted by CHs.

Is it any wonder that some people just don't understand? Should it surprise us that others want to help by offering their suggestions, be it walking in the sun, tylenol, prayers, meditation, etc?

If anything, if people didn't want to suggest things, no matter how effective their suggestions are, then that would even more show that they don't care for us.

Black, Lucas describes it as getting hit in the temple with a metal baseball bat and then extending that moment of impact for a whole hour. I've said I wish they left his face black and blue so people would gasp at what has happened to him. He goes through torture and then walks around the grocery store an hour later and no one knows what he just lived through! I think you're right, we live in a visual world, since they can't see it happening or the result it doesn't exist, right?

exactly ;)

I've been recently describing it as a 45 min. (for me) brain freeze.  I've found it's quite effective!

I don't want to beat a dead horse, but I need to right a wrong on my part, and I wanted to do it on the board, not just a PM...I feel bad that I didn't acknowledge Lauren initially for fear of opening up a can of worms and thinking I should just leave things alone when she wrote:


Lauren17 wrote on Oct 27^th, 2010 at 3:31pm:

That attempt on their part, not faith itself, has been irritating as all get out and that was conveyed VERY badly in my original post so my sincere apologies!

I should have acknowledged that and said "no apology necessary but very much appreciated".  I apologize for my poor judgement...ok, let's put this puppy to bed.

I hope everyone is enjoying this GLORIOUS autumn day!  Fall foilage (who says the leaves have to be on the tree to enjoy them..my backyard is full of orange, red, yellow, and brown, very beautiful) the crisp fall air (at least in my neck of the woods), college football, a kettle of homemade chili simmering on the stove with some sweet cornbread in the oven...life is good!   Please find something beautiful in your life today, take a moment, and really appreciate it.  :)

Whoops, spent the weekend away from computers- the delay wasn't intentional!

Thanks for that, I appreciate it!

Unfortunately for us sufferers/fighters of CH, we're trapped in a bit of a personal hell.

It's been 9 years for me and I think my wife is FINALLY starting to get it. I recently started on Verapamill and 'Trex injections, that seemed to make it hit home for my wife how bad it is.

It's partially my fault though since I don't want to remotely come across as complaining/whining because it could always be worse, so I've always done my best to suffer in silence, so to speak. Also, I've never really tried to explain it or educate her, it just seemed like too daunting of a task.

My mother quasi understands, she's been a migraine sufferer for 25 years. She knows that it sucks but she doesn't really understand the differences between CH and migraines. She was shocked when I told her I don't get sick to my stomach, nor do I want to lay down when I'm getting a hit.

It's a shame that "headache" is the way it's classified. Since there are headaches, then there's what brings us together on this board.

When people ask what's wrong and I say that I get multiple headaches in a day, they just look confused. It's the whole notion that headache=take an asprin/tylenol/advil and lay down, juxtaposed to what actually occurs when we encounter the Beast. Trying to convey that to anyone is too abstract of a concept.

primetime wrote on Nov 2^nd, 2010 at 1:19pm:

Unfortunately for us sufferers/fighters of CH, we're trapped in a bit of a personal hell. It's been 9 years for me and I think my wife is FINALLY starting to get it. It's partially my fault though since I don't want to remotely come across as complaining/whining because it could always be worse, so I've always done my best to suffer in silence, so to speak. Also, I've never really tried to explain it or educate her, it just seemed like too daunting of a task.

We know what you mean. Still, I would encourage you to bring your wife into this fray. I also, for years, would not let anyone see an attack, inasmuch as I could prevent that. Then one Easter Sunday, all hell literally broke loose and broke into Sunday dinner. I ran to my room to scream and pace and suffer, and she was there. Her support over the years has been incredible, and make no mistake, our supporters suffer, too. Don't let some false machismo keep you from the kind of support you can receive. May you find a path to pain free days and nights! lance

I get what you are saying, Mel.  It used to frustrate me too.  That being said, once I thought about it, I really don't want them to know.  If they do know and understand, that means they saw me get hit and I prefer not to be seen at all during a ch.  Hell, I hid it from my family for almost a year.  Seeing that "look" on peoples face  [smiley=eek.gif] upsets me because I can tell it upset them to see me that way.

Tell them you never want them to understand.  Understanding means seeing or feeling the pain and that is something I do not wish on anyone.

Well said, Beth.

Jerry

mikstudie wrote on Oct 29^th, 2010 at 9:45am:

I will take a Bull on the rocks and a Imitrex chaser. :D

What do you call that cocktail?

I suppose it could be called "the Fuster Clucker", but I should mention that it's already been suggested on cb.com that I start a band called Bejeeber and the Gnashville Fuster Cluckers".

bejeeber wrote on Nov 3^rd, 2010 at 10:18pm:

mikstudie wrote on Oct 29th, 2010 at 9:45am: I will take a Bull on the rocks and a Imitrex chaser. :D What do you call that cocktail? I suppose it could be called "the Fuster Clucker", but I should mention that it's already been suggested on cb.com that I start a band called Bejeeber and the Gnashville Fuster Cluckers".

;D

Melissa,

There will be always people who just don't get ch. During my early ch years that bothered me a lot more than it does today. I'm so sorry that there are members of your family who react like that... [smiley=hug.gif]

I haven't forgotten (like Jerry mentioned ealier... ;)) that my mother did suggest donuts as a "cure" for ch... And that my closest aunt suggested that I have "imagined" ch. It hurts to hear something like that from the people who know you well. But it happends.

I've used to, also, that my friends do not ask me about ch; that would - to express it coldly - force them to care and "help". So I've solved that by telling them anyway, drinking energy drinks near them when I get shadows or hit. I've supported them with allergies, depression, anxiety attacks, break ups, eating disorders, cancer and insomnia, so I believe that its my right to tell them what goes on in my life, too. ;)

Now, I have not told my future mother-in-law or anyone else in Esa's family about ch yet. I have dealed with shadows during our previous visit to Esa's childhood home, but I did that in privacy. I do know that I will have to tell all of them about ch, but so far it has been so much easier like this. I do believe that Esa's mother will take it in a good way, but its much harder to say how the others will react. But, for now, I don't worry about that, because Esa has seen me getting hit with a kip 10 and he's still here. :)

So, Mel, here's my suggestion: focus on the good things, live your life and leave the rest. People will have their opinion about you, about ch and about everything else. Tell them what it is like, do what you need to do when ch comes and let other comments/opinions be. It won't be easy, but in the end you will feel better when you will live your life like you want to live it.   

Lots of hugs and lots of PF days,
Sanna :)