Sometimes I feel like, nobody understands what I go through. (Except others suffering with CH) I mean, my fiance, whom I live with, is somewhat compassionate, but he acts like it's just another bad headache...and virtually everyone gets headaches, right? I don't know. I feel like he thinks I exaggerate the pain, or maybe just can't handle it. Hell, I had three kids naturally, and grew up w/ four brothers who did a lot more than rough house me. I can take pain...just not this. I'm glad I have people like you guys who understand, but I wish he could or would TRY to understand that the hell I go through is NOT made up, or exaggerated in the least( I wish it was) It's a complete nightmare that robs me of sleep and peace of mind. All I ask for is understanding, and a blow to the head to knock me out during an attack (ok, I made that last part up) I mean, I've even had friends say, "She's faking another headache again so she doesn't have to hang out. I mean, who gets a headache within 5 min.", or" Hey, I get migraines. You haven't had a headache until you've had a migraine If I can deal with them, you can deal w/your headache." You know, sometimes I wish that they would all have just ONE CH. I'd never wish anyone to have them plague them over and over. Just one real good one so they know what it's like. That would shut them up. >:(

Maybe you should quit whining and be proactive.  Get a real diagnosis from a Neurologist and get on with your life.

         potter

I have been proactive. I've tried numerous preventives and abortives, but still no remedy. I also have been diagnosed

Which ones haven't you tried?

Potter wrote on Dec 5^th, 2009 at 11:41am:

Maybe you should quit whining and be proactive.  Get a real diagnosis from a Neurologist and get on with your life.          potter

What is with this trolling on the board, having bad day today? :P

In the OUCH site are a couple of letters which you can give to all your friends and family. They explain the nature of the headache, etc.

In the end, however, even giving your friends factual information will leave some of them in the same place that they are now.

What you are dealing with is NOT their knowing or not knowing about CH: You're confronting their character, their lack of capacity to  accept your distress even though they may not understand it. We all have problems understanding experiences which are beyond our personal experience but we expect some compassion, some giving of support and caring, even in such situations.

I can give you an academic/therapist's explanation for why people like this are as they are. But in the end, neither of us will change them. You can only protect yourself by withdrawing from the sources of your disappointment. Whatever these people are in your life, they are not "friends".

My old dog has a terrible fear of thunderstorms. My brother's dog was staying with us a few days when such a storm hit. My guy hid in fear. I found my brother's dog draped along his back; her head on his head, clearly soothing him. Neither of them understand storms and why fear but she gave the dog version of compassion, staying with him for the duration of the storm. There is a lesson here for all of us.

I found myself smiling while reading your post - relating to it I mean.

Before I was diagnosed I used to say things to my friends like I've got to get x done by ten as I'll have my headache at 11 and won't be able to do anything then until after one.
I used to get hit every day between 11 and 1 and then between 5 and 7 in the evening. Regular as clockwork and I was out of my head with pain and fear. I wouldn't let anyone near me.

When I got my diagnosis I'd actually been hospitalised. My ex had called the doc who had called an ambulance. He thought I was having a stroke or an aneurism. Scared the living daylights out of the poor man.
I was taken in and had an MRI and a cat scan and a neuro came to tell me I didn't have anything "scary"
Based on my autonomic symptoms  and what he had observed himself I had CH.

I remember to this day being utterly mortified. I can't tell you how embarrased I was. Making all this fuss over a "headache". I remember thinking "Bloody hell, couldn't I at least have had migraines?"

Half the problem is that word "headache" It sounds so dismissive.
Sadly the other half is intolerance, misunderstanding, selfishness or ignorance or a combination of all of them.

Try explaining the mechanism of CH to people. Tell them it's a vascular neurological condition in which the blood vessels on the affected side of your brain swell dramatically crushing the nerves around them. Tell them neurologists consider the pain to be worse than amputation without anaesthesia.

Tell them ordinary pain killers will not work. Even morphine isn't the right type of pain relief. The ONLY thing that will kill the pain is vaso constriction, bringing the blood vessels back down to "normal" size.

You are not a wimp. You are coping with a horrific pain and continuing to live your life.

Your friends and family are welcome to come here, we'll help them understand (one way or another  ;) )

More importantly though, we'll help you understand all you need to about this condition and how to cope with others too.

Hang in there! It's a big learning curve when you first find us, you'll get told a lot that just won't sink in but it will in time!

Helen

MattyAA wrote on Dec 5^th, 2009 at 12:28pm:

Potter wrote on Dec 5th, 2009 at 11:41am: Maybe you should quit whining and be proactive.  Get a real diagnosis from a Neurologist and get on with your life.          potter What is with this trolling on the board, having bad day today? :P

It's called tough love, not trolling.

             Potter

Loved your dog story, Bob!!!

Agreed. Great dog story Bob. Vietvet2tours isn't trying to be mean, he's just used to life as we ch sufferers all know it. You'll toughen up as the years go by just as he has. Unfortuantely, the ch isn't going anywhere and you oddly get used to it. When it's new and you've recently been diagnosed, your aren't sure whether or not to believe the doc that you're not dying. Nothing can hurt that bad and not be deadly it seems. People not understanding you gets more tolerable too. We all have good and bad days with our friends and loved ones meaning well but not really getting it or being as sympathetic as they could/should be. Think back to before this started. Would you have been able to imagine or believe a co-worker with this kind of story? People are just "blissfully" ignorant by accident cause they don't have a point of reference. Just today I was speaking with a girl over the phone I used to work with and made the mistake of saying that I was in the middle of a cycle right now. She says "Oh I know what your going through, I had a migraine a couple weeks ago". I wanted to strangle her. I had migraines before they upgraded to ch and would give anything to have those suckers back. I've learned to remain calm and change the subject. That day will come for you too. Promise. In the meantime, come to this site and stay with those who "get you". Lots of love to ya.

It's really quite simple: You learn how to manage this thing or it will manage you.

Quote:

EVER FEEL MISUNDERSTOOD

Not around here.   ;)  and that is why this site exists.

If someone expected me to know exactly what it feels like to have MS, I'd be at a loss too, although with my knowledge of MY  kind of pain I probably would not tell them to take 2 aspirins and go lie down.   :P

Only when I foolishly try to make people understand a pain they can't begin to comprehend. :) It's like my wife trying to explain hot flashes to me!!!........as Bob put it, stop stressing over making people understand your pain, and put your efforts into learning to live with it...and as Brew said...manage it instead of letting it manage you.

Joe

Quote:

It's like my wife trying to explain hot flashes to me!!

[smiley=eek.gif]  Oh, Joe.  it was really nice knowing ya.

 

A couple of weeks ago Helen described CH as a neurological condition in which the blood vessels swell on the affected side of the face, crushing the nerves and causing excruciating pain.  I’ve found describing it as that makes my university a little more sympathetic.  :p

As for friends, I suppose it’s when bad things happen that you really find out who are the proper ones. :(  It sucks though!  I think most people, including non-CH here, have a set of people who are fair-weather friends.  It's just working out what different friends are capable and willing of coping with in your friendship with them.  :(  You could try to work out periods that your likely to remain headache-free and go for a half hour coffee or something - so they don't feel neglected.  Also it'll give you a window into the pain-free outside!

vietvet2tours , Yer welcomed to come borrow my spike bayonett any ol' time...  ;D

I got to play with it 3 times last night myself. That barn where my 02 is ain't gittin' any warmer.

My wife woke to find me on the bed in full blown winter gear with fuzzy Northface over pants and all on.. She just let me sleep til I woke up.

So far today I went to get metal, and the order was 1/2 filled, then ride my motor bike in the snow, to the barn, because I got too many chores, to get the bike put up fer winta'.

And since then I have been practicing to be a ZOMBIE in what ever the next flick is that needs any ZOMBIE'S.

I just had to pick on ya..


echogirl, you ain't got any friends... neither do I. My wife gets 'it', but no one else I know does. I know lots of folks, but none of them know what my problem is and I don't care to invest in the time to bother with it to them.

The only way they might understand is if you stab them in the eye with a ice pick, and somehow I don't see you ever doing that.

Got o2 yet?

Thanks for that viual, Mac. ;D

If you end up doing that don't forgit to wiggle it atleast an hour... ;D

Mac_Muz wrote on Dec 7^th, 2009 at 5:17pm:

vietvet2tours , Yer welcomed to come borrow my spike bayonett any ol' time...  ;D I got to play with it 3 times last night myself. That barn where my 02 is ain't gittin' any warmer. My wife woke to find me on the bed in full blown winter gear with fuzzy Northface over pants and all on.. She just let me sleep til I woke up. So far today I went to get metal, and the order was 1/2 filled, then ride my motor bike in the snow, to the barn, because I got too many chores, to get the bike put up fer winta'. And since then I have been practicing to be a ZOMBIE in what ever the next flick is that needs any ZOMBIE'S. I just had to pick on ya.. echogirl, you ain't got any friends... neither do I. My wife gets 'it', but no one else I know does. I know lots of folks, but none of them know what my problem is and I don't care to invest in the time to bother with it to them. The only way they might understand is if you stab them in the eye with a ice pick, and somehow I don't see you ever doing that. Got o2 yet?

    Other than wit I avoid sharp objects.

              Potter

I guess I am on the better side of understanding friends.  All my friends are pretty compassionate about my headaches.  They know I am a fun girl and I like to hang out with them.  But when I am going through a cycle, I am no where to be found.  They all can't wait for me to feel better and come out with them.  I get a party when my cycle ends...."here's to the next year or three with no headaches" they say.   ::)

I only have a tough time explaining them to people I don't really know, or who really don't know me.  I get the "oh really, my so&so get's bad headaches too, they have missed work because of them...they take migraine strength pills because the pain is so bad, I hope you feel better, bye."  It's kinda pointless to explain and expect understanding from them.  Just expect misunderstanding, trust me, you will laugh as soon as they tell their "oh-so terrible headache story".

Most of the time I don't tell people.  My co-workers know, my friends, my family and they are the ones who count. 

One look at the imitrex injections, and they know your serious.

Love the dog story!
Angela

[/quote]
    Other than wit I avoid sharp objects.

  Potter[/quote]


A witty comment on wit....Potter...you crack me up :D

Quote:

Not around here.     and that is why this site exists.

I agree with Linda.

Hugs Jazz

My favorite is everyones face at work when I come walkng in with an E tank.  You will learn to manage. Enjoy your PFDAN when ever you can. This site will hp you learn to manage.

Jrcox

angela.lambert wrote on Dec 7^th, 2009 at 8:45pm:

I guess I am on the better side of understanding friends.  All my friends are pretty compassionate about my headaches.  They know I am a fun girl and I like to hang out with them.  But when I am going through a cycle, I am no where to be found.  They all can't wait for me to feel better and come out with them.  I get a party when my cycle ends...."here's to the next year or three with no headaches" they say.   ::) I only have a tough time explaining them to people I don't really know, or who really don't know me.  I get the "oh really, my so&so get's bad headaches too, they have missed work because of them...they take migraine strength pills because the pain is so bad, I hope you feel better, bye."  It's kinda pointless to explain and expect understanding from them.  Just expect misunderstanding, trust me, you will laugh as soon as they tell their "oh-so terrible headache story". Most of the time I don't tell people.  My co-workers know, my friends, my family and they are the ones who count.  Angela

My circumstances are similar to Angela's.  I just don't have that many problems with people and when I do, it doesn't bother me much.  I rarely ever discuss my headaches with anyone and even if they ask me, I cut it short because there is no sense in it.  I act like it is just something I deal with and that it will soon pass.  No one except my family knows the shape I get into with them.  I have been very fortunate to suffer so badly in silence and have a great 31 year career.  I have a large family support group because several of us have clusters...so I grew up with it and that really helps!

Joni

    "Other than wit I avoid sharp objects."

Today I spent all day wandering around looking for myself..

Neva' had no wit, but I got Humor..  ;D

Quote:

EVER FEEL MISUNDERSTOOD?

some thoughts..please don't jump on me..

is there any chance we are sending mixed messages out there so that's why we are not being understood?

others no matter how close they are won't ever really get into this pain.But i catch myself many times in the past that i never really opened up to people about this.even if i was hurt i never stood up for myself.Maybe people will relate only with our feelings about this.

and one question that bothers me
is if i have really accepted this.i mean if i have this neurological disease how do i really introduce myself to others.

am i a normal person with some random very painful hits everyday or an affected person with some painfree moments?

just some thoughts  :(

It has never entered my mind for clusters to define me in any way.  My affected family members seem to be the same way.  Maybe it is because we grew up with it around us.  My mother was a very strong lady and she never let it interfere with life more than an hour or two, maybe, and it certainly wasn't something people thought of when they thought of her.  Subconsciously, I guess we just did the same.

Now, don't get me wrong, it is terrible when in cycle.  My sister has them worse than anyone I have heard of but she carries on and since Imitrex, she doesn't worry bout them at all.  It always has worked for her and even shortened her cycles.  My nieces seem to do the same, as well.  I'm not saying that it doesn't cause a problem and is a piece of cake, oh no, I'm just saying that our attitude, gotten from my mother (gotten from her mother), has given us a different perspective.  It does not define us, not even anywhere near the top of the list.  But...we are all episodic, too, and that make make a big difference.

Joni has made the most important point yet on this discussion. I too am episodic. So although I understand the pain, anxiety, lack of sleep, paranoia when away from my home and comfort zone and so forth, my hat is still off to any chronic sufferer. My only savior is reminding myself it will be over shortly and I can look forward to a break. Chronic sufferers take a bow. I can't compete with you.

It's a case of what we're used to.
I'm chronic and in a strange kind of way, I dread being episodic because at least I don't live with the fear of them coming back. I know when I have had pain free time I've always been waiting - I've really enjoyed it but it's always there in my mind.
You learn to play the hand your dealt. That's what it boils down to!
My hat goes off to ALL of us because one hit is one too many. :)

"Tough love", Potter?  You know, crap like that is why I quit coming to this board for a couple of years.  Can't you see she's a newbie, in pain, and is wanting some support?  Honestly, if you can't support someone why even post?   

EchoGirl, I'm retired from the military, 50 years old, in great shape (if I do say so myself), and I've had the same reactions as you're describing:  "How can a headache come on so fast?"  "I get migraines but I still come in to work."  "Have you tried Exedrin Migraine?  They work wonders."  "How can someone like you let a headache wear you down?" 
I finally came to understand that THEY just don't understand and probably never will.  Even my wife doesn't get it.  So, I've got to where I just don't mention it to anyone.  I sneak out of bed when I get "hit" to try and hide them from my wife and I don't talk about CH to my friends.  I've got enough vacation and sick leave saved up at work that, when I feel one coming on at work, I can take off with a made up excuse.  (Those are actually the best.  I can come home, my wife is at work, and bang my head on my favorite spot with no fear of being questioned or accused of "over-reacting."
Finally, don't let some of these grandstanders on here get you down.  They'll throw their great "cures" at you, talk about how bad THEIR headaches are, or how they get through them by being so tough.  Ignore them.  Get a few of the ones on here who understand and have them PM you or send regular email. 
Or, do like I did...ignore the whole bunch and just use this site as research.   = )    Whatever you decide, Good Luck!! 

Asa that's a really sad post on a lot of levels.

I'm sorry you're so alone with this but I AM going to disagree (there's a surprise huh?!) There are a lot of people who don't have CH but still "GET" it. There are people who will do all they can to help us and fight for us even though they've never felt THIS pain.

I happen to believe pain is relative. If the worst pain you have ever had is breaking a fingernail then that for you is a "ten". It doesn't matter what I can take in terms of pain, or what you can - ALL that matters is that when ANYONE we know is hurting, we try and help or at the very least, not hinder.

I can tell you for nothing, the "pain" of seeing someone else get hit hurts me far worse than any attack I have ever endured has - and the memories of it outlive any shadows.

We will help, we'll support you, sympathise with you and sit and say it isn't bloody well fair with you too! - you just have to meet us halfway okay?!

Asa wrote on Dec 9^th, 2009 at 2:07pm:

Can't you see she's a newbie, in pain, and is wanting some support?  Honestly, if you can't support someone why even post?

Define "support."

Asa wrote on Dec 9^th, 2009 at 2:07pm:

"Tough love", Potter?  You know, crap like that is why I quit coming to this board for a couple of years.  Can't you see she's a newbie, in pain, and is wanting some support?  Honestly, if you can't support someone why even post?    EchoGirl, I'm retired from the military, 50 years old, in great shape (if I do say so myself), and I've had the same reactions as you're describing:  "How can a headache come on so fast?"  "I get migraines but I still come in to work."  "Have you tried Exedrin Migraine?  They work wonders."  "How can someone like you let a headache wear you down?"  I finally came to understand that THEY just don't understand and probably never will.  Even my wife doesn't get it.  So, I've got to where I just don't mention it to anyone.  I sneak out of bed when I get "hit" to try and hide them from my wife and I don't talk about CH to my friends.  I've got enough vacation and sick leave saved up at work that, when I feel one coming on at work, I can take off with a made up excuse.  (Those are actually the best.  I can come home, my wife is at work, and bang my head on my favorite spot with no fear of being questioned or accused of "over-reacting." Finally, don't let some of these grandstanders on here get you down.  They'll throw their great "cures" at you, talk about how bad THEIR headaches are, or how they get through them by being so tough.  Ignore them.  Get a few of the ones on here who understand and have them PM you or send regular email.  Or, do like I did...ignore the whole bunch and just use this site as research.   = )    Whatever you decide, Good Luck!!

  Bullshit like Excedrin Migraine pills is why I stay. 

             Potter

Hey, LeLimey!  Don't get me wrong...I never said EVERYONE on here nor on the outside.  I've seen some great posts on here from supporters and I'm sure there are people outside of this circle who would understand.  I was just talking about my circle, the experience I had on this site, and the reaction Echo was getting from some of these trolls.  "Toughen up", "Define support", "stab them" and crap like that is not what she was looking for. 
Sure, I'd be glad to meet some of you half way, heck...more than half way.  But like I've said before, I don't need the sympathy.  It'd just be nice to come on here and talk about these things without others playing psychiatrist or doctor for a change.

Asa wrote on Dec 9^th, 2009 at 3:27pm:

,    It'd just be nice to come on here and talk about these things without others playing psychiatrist or doctor for a change.

   You're the one that recommended an aspirin for clusters.  You a doctor?

          Potter

Potter...what the hell are you talking about. Asa never said anything about taking Excedrin or aspirin. He was talking about others saying that to him.

Asa wrote on Dec 9^th, 2009 at 3:27pm:

...the reaction Echo was getting from some of these trolls.  "Toughen up", "Define support", "stab them" and crap like that is not what she was looking for.

I notice that you deftly avoided providing a definition of support. Does that mean you're not sure what it is? That it can take many different forms?

I'm calling bullshit. Don't pretend to know what someone else is looking for. And don't ever call me a troll, even by implication.

Here we go.  This is whaqt I was talking about, LeLimey. 
Potter, are you illiterate?  I'll explain this one and then ignore you and the other old jerks like you.  I never said take an aspirin.  I put those quotes around the statements made by friends and coworkers about my having CH. 

Gotcha and I apologize profusely

          Potter

Asa-
It would be to no avail to simply read only one perspective on this site (or any site about any topic, for that matter)!  If you choose to only read what you know and only agree with what you think, then you are  certainly free to do so, but you will be limiting yourself.

People are very different, not only from each other, but within themselves during different stages of their lives.  We all have much to learn from everyone in all those stages.  I have never met anyone that I didn't learn something from and I am grateful to all of them, whether the lesson was positive or negative.

If people came to this site and only read one type of thread, in your case...a desire for comfort, then much learning and modeling would go unlearned.  Each person on this site has a different life experience and a different view of their situation at that given time.  Someone will benefit from all of them, even the posts I am not fond of have taught me something, or reaffirmed something.  It is good that we wear different hats.

The message I can give at this point in my life, today, is one of strength from my own life experiences.  I am a compassionate person by nature, but I think the message of strength is just as important.  It was comforting for me to see that people did live their lives normally with these headaches, and I hope that people, even newbies, take comfort in knowing that I have had a successful life and career with them as well.  There were, and are, times I still am scared and need comforting but I know that there are people on this site that do that well, too.

Hopefully, we each give our best and someone will need whatever that is at that time.

Joni      

 

If anyone here hasn't read or understood the code of conduct which was stickied at the top of every board - I would strongly urge you to do so now.

There is a protocol here and violations aren't tolerated.

Just a reminder.

Helen

Simply a reminder to those new to the site, or those who have not been here in some time.  Please review the "Standards of Conduct":

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

Specifically,

"Calling a member 'troll' or using 'troll' or similar emoticons is considered a personal attack."

Perhaps, in this case, the term is not directed at any specific individual, but the fact remains that we don't do that here anymore.

Many thanks.

Best,

George

ETA:  Thanks, Helen.  You beat me to it.   ;)

Did I say something wrong?

Quote:

are you illiterate?  I'll explain this one and then ignore you and the other old jerks like you.

Name-calling is against DJ's rules and is spelled out quite plainly in the code of conduct also.  >:(

Ok, I am assuming it isn't me.

No Joni....it wasn't you. Just 2 old bulls in a pissing contest.

Asa wrote on Dec 9^th, 2009 at 2:07pm:

...............So, I've got to where I just don't mention it to anyone.  I sneak out of bed when I get "hit" to try and hide them from my wife and I don't   I can come home, my wife is at work, and bang my head on my favorite spot with no fear of being questioned or accused of "over-reacting."...................................

Didn't see any mention of oxygen. Thought I would bring it up!

Nothing like in the world for me - damn near a miracle as far as I'm concerned. I can kill virtually every hit in 3-6 minutes and never reach a high pain level. I kill it fast and get back to what I was doing.

Big welding O2 tank in my garage at home and small tanks in the car. If I get too far away from one of them, I get reminded what it feels like.

Marc

I don't know what vietvet was aiming for, but I sort of see a point in what he said.

Sure I would love to have people understand how painful it is and show me sympathy and understanding. I mean, some days it was all I wanted.

But then I realized - all the time I spent trying to make other people understand or "feel for me" I was just making myself into a victim. A victim that needed someone to feel sorry for me.

That was totally detrimental to my ultimate goal, which is/was to cope and live a normal life. By asking for understanding I was turning myself the handicapped victim.

Then again, sometimes you need "understanding", because it's just too much. Then this board is good because people know how it is.

I NEVER mention the CH to anyone except my wife these days. She is not very emotional/sympathetic and I don't think she really understands - but I've pretty much given up making her understand. I know she's got my back and that's enough most days - otherwise if I were to get a hit - I would probably post here about my misery until I was done feeling sorry for myself.

So I think it is twofold - both sides a right. One part for when it's bad and you need someone to listen, one part for when you need to learn to handle day-to-day life.

Void when i say about feelings i don't mean about make the others to understand how painful it is
but how we,ourselves, feel about this.

the first brings the sorry part which you are right,we might be grateful for this sometimes,especially in pain times, but leaves us with the victim thing which i don't like it no more than you like it.Moreover it's a try to make them understand,and from their point is to convince them,either way it's useless.

but what if we talk about our own feelings about this when we are ok and pf, i think noone can really neglect the way we feel.right?
I mean from a certain point it's their problem to accept us but we can say to ourselves we did our best.

i am talking about simple times here when we neglect an invitation for example but friends haven't really understand why and feel we neglect them.Of course this doesn't applause for everyone but the ones who count,we care and want them still in our life.

p.s.I am not a psychiatrist.Just a clusterhead who has done many mistakes and keeps doing them but still tries to find his way out....somehow.


could we elevate this discussion and stop everyone to be so defensive?drop the guns  :(

As far as others not understanding why we miss engagements, etc and think we are just shorting them I decided I wasn't going that route anymore, so I just went along once and let them witness a hit.  Do the understand? No.  Do they want me to come along when the HA's are hitting badly? NO.  Now they ask if I will be able to make it, or should we do it another time.

Jerry

Two weekends ago:
There was a meeting for a "clan" I am a member of.  I wasn't feeling particularly well.  I decided to stay home while my husband went.  Moments before the meeting started, I got a call from the "Prez", he got a little pushy why I wasn't going.  I kinda hung up the phone feeling bummed that he wasn't taking "I'm not feeling well" for the answer.
Well, at the meeting he again brought up my absence.  My husband told him about my CH's along with a couple more friends there who also knew. 
He phoned a couple of days later and apologized.  I told him there was no way of him knowing, and that I don't always tell people, I don't want a pity party. 
He agreed with me, I accepted the apology and apologized I didn't tell him.  "Big Hug"
Having CH just isn't easy.  You must take some blows, and give a few too.  It's still you, just with a little more than others can understand sometimes.

Makes us Unique.  Well rounded at best.  We can take one of the worst physical pains known to man, and still smile.....

Much love to everyone with no misunderstanding.

Angela

Callico wrote on Dec 10^th, 2009 at 8:32pm:

As far as others not understanding why we miss engagements, etc and think we are just shorting them I decided I wasn't going that route anymore, so I just went along once and let them witness a hit.  Do the understand? No.  Do they want me to come along when the HA's are hitting badly? NO.  Now they ask if I will be able to make it, or should we do it another time. Jerry

Jerry...my deep admiration for you (and Chuck, Tony and others), while never in doubt, is confirmed. I can count on ONE hand the number of people who have seen me hit...not one of them by choice.

During a bad hit I feel so weak, and helpless, and vulnerable, and yet cognizant of the helpless feeling the viewer must have....that I cannot bear to even contemplate "being witnessed".

What you did makes so much sense to me I cannot argue it....and still, I don't have the guts to do it.

Best,

Jon

Jon,

I didn't have to do it but once, and they didn't see me full blown.  I picked a time i knew wouldn't get above a 7, just enough to get the nose running like a faucet and the Horner's making my face look like silly putty falling off, then I left before it got overpowering to them.  I don't like being seen either, but had to make a point that time.

Jerry

I had friend that was getting upset that I wasn't doing things with her  right now.  I took the advice of everyone here and asked her to watch the video of an attack.  That was enough for her.  She now understands, better, my not wanting to be around people for fear of getting hit.

PF wishes to all,

Jeannie

yes i do feel misunderstood for sure! the closest people to me understand cause i have most check out a video on u tube under cluster headaches and then they ALL really understand!  :'(

Funny thing is that a close friend saw a video of Chuck getting hit on the National Geo special and asked if he was acting.  The friend suggested the pain seemed almost too intense to be real.  Since I have witnessed Chuck getting hit live in person, I could reassure my friend that it was indeed that real.

I don't often feel misunderstood but rarely ever UNDERSTOOD.  Except around other CHers!

Is "quit whining" really necessary? I really get the misunderstood stuff.

I'm, a sales manager at a car dealership and expected to be tough and never sick.

As an episodic I think they find it difficult to get that all of a sudden I have issues, then I'm ok a month or so later. I get all the bs about my friend has had luck with tylenol...

I think its a great idea to rename this syndrome " hypothallmic trigeminal exruciation disorder"

I think its a great idea to rename this syndrome " hypothallmic trigeminal exruciation disorder

Hmmm......you may have something there!! ;D

Joe

I really don't want sympathy.  I don't like being viewed as a victim.  As long as my family is supportive and my direct boss understood it's not a scam, then I don't worry about what others think.   

However, I can say that because my family has seen me with HA's and other members have them, too.  My boss doesn't suspect anything because I didn't complain about it and rarely missed work with only one exception in 31 years when I missed a month.  I was very lucky!

We all have different circumstances and I feel so blessed.  When I look back on it all now, I can't believe I did it without drowning in the pain or despair.

I wish this for all of you!

We all deal with CH in our own way. Those of us who are chronic seem to take a different attitude toward it.

Me, I live each hour and make wise cracks. It hurts too bad to cry. And NO, I really don't like to be around people when I'm getting hit, but if it happens I don't apologize or even try to explain - I have an illness that I can't help and to hell with what they think (ok so it's taken years to build up to that point of not caring).

Yesterday I was at LAX in the middle of a crowd and got hit (oh I was alone). Not a real good place to get hit, but.... I got to to the ticket counter and requested a wheel chair (I couldn't see too well). The ticket agent looked at me and asked if I was ok - I know I gave her a really strange look and politely asked, "Do I look ok?" I got the wheel chair, go thru security with little hassel and got to my gate (I'd popped my cafergot and it was kicking in by then). THere was a Starbucks by the gate and I got some nice coffee down me and for once no one tried to talk to me. I was almost normal by the time they called my flight.

What I'm getting at is WE ARE SURVIVORS and can do about what we need to do and we (over the years) build up a tolerance to what other people think. When you're new to CH, there's a tendency to feel a shame (for some reason), but over the years that goes away (or it seems to for chronics).

I think it's kinda like the 5 stages of grief... denial....thru acceptance. Once you reach the acceptance stage - then it just doesn't matter what anyone thinks anymore.

At least that's how it's worked for me. But then again, we're all different.

Hugs BD :-*

BarbaraD, that is a great analogy (the grief stages).

I forgot to mention in my previous message that I am episodic and consider myself lucky!  Bless your heart!

saxman wrote on Jan 7^th, 2010 at 1:29am:

and expected to be tough and never sick. As an episodic I think they find it difficult to get that all of a sudden I have issues, then I'm ok a month or so later.

Yep, everyone knows you as this can't be arsed by anything kinda guy, you're strong and young and can't be stopped by anything. The world is yours and you know it, and everyone else does as well.
However, suddenly two years have passed without you EVER being sick, and suddenly the world comes crashing down on you like a ton of bricks. How to explain that? How to make people understand you will not be able to function somewhere between 7 to 9 weeks? How?

Yep I'm frustrated, can you tell? As an episodic we crush everything, untill we are being hit. How stupid is that, in your collegues eyes. Nothing's ever wrong with the guy, he is a waltz. Suddenly, nothing of him for two months????



Yeah, explain that. And the term Clusterheadache (headache) won't do.

Like you I have also had three children all natural the last of which was over 10lb and I'm not big, a size 3. I have compaired the pain as well. Prior to these headaches that was the worst pain I had ever felt. You have nothing to feel bad about.  I do have my moments and it is affecting my life a lot right now as I have had daily headaches nonstop for over a year now and must work full time.  It SUCKS!  I like you am trying everything possible but still searching and trying different combinations of pills seeing if anything will work.  My thoughts are with you and I hope you keep us posted on how you are doing.  I tell my friends and family how important they are to me and how much I appreciate them sticking by me through all of this mess.

As Barbara said we all have to deal with our CH in our own way. So far I remain eposodic although I never know how long or when the cycles will appear.  I too am fortunate that I don't feel misunderstood but I must say except for my dear loving wife and two adult sons no one has actually seen me with a 8-9kip hit.  At work I have been fortunate to catch the hits early before they kip up and abort with O2.  When in high cycle such as now I really can't be out much socially because I am going to get hit often and don't want to run the risk of putting other people in an uncomfortable situation, because if I do get the high kip sometimes as hard as I try I do get a bit weird so I follow what I believe is the path of least resistance for all and just avoid the situation and mostly stay at home except for work and Church.  I have tried going to diner and movies, but all to no avail as I have gotten hit as I am not on a schedule of when the hits will come.  I don't want to use the triptans, although zomig does work for me so I just follow this path.  We do have friends over and if the beast visits then I can ease back to my bedroom and hit the O2 and hope he will stay away for while.  I don't try to explain much to other people because how could they possibly understand?  It is similar to Kohlberg's Stages of Moral Development in that he says there are 6 Stages of Moral Development and if you are at say level 2 you cannot comprehend anything at a higher level. Therefore someone that is not a Clusterhead cannot possibly comprehend what we experience, regardless or how we describe our pain etc. as they are not capable of understanding, it is not that they do not want to they just are not capable of understanding all they can equate it to is something they themselves have experienced which is why so many people will say "yeah I know what you are going though I used to have migraines" or "yeah I used to or yeah I have real bad sinus headaches".  To them those are really bad and they are trying to empathize with us, but many or most of us have had those and that pain does not scratch the surface to CH so it just ires us to no end.  So in the end it really is just better, in my opinion, except for those really close to you not to even attempt to explain the pain other than the print out available on this site.  On well that is my $.50 on the subject and I wish all as many PF days and the beast will allow.