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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> WHY PEOPLE CAN'T UNDERSTAND US!
        
(Message started by: survivor13 on Dec 5^th, 2004, 2:17am)

Title: WHY PEOPLE CAN'T UNDERSTAND US!
Post by survivor13 on Dec 5^th, 2004, 2:17am

i have spent many years thinking about this. this is what i have concluded.
1. what we have is rare, according to my neuro. only about 1% or less of the world's population are suffers.
2. it is in the name itselt. the word HEAD-ACHE, not only is it an understatement, but also very misleading. if it had been named something else maybe peple would respond differently. how about (itsfrickinkillinmeits).
i have had people approach me when gettin hit and ask whats wrong. once the name headache comes up they nolonger look concerned.

now when people approach me when gettin hit (last thing i want to do when gettin hit is talk). but in between grimacing, cussin' and wimpering. i say the following: I HAVE A VERY RARE, EXTREMELY PAINFUL, NEUROLOGICAL VASCULAR DISORDER. be surprised how different they act. i only tell them clusterheadaches, if they ask what it's called. SAD HUH!

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Jonny on Dec 5^th, 2004, 2:21am

Very sad!

I just tell them to get the fuck away from me or I will kill them.....works every time.

.....................................jonny

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Gator on Dec 5^th, 2004, 3:42am

Yeah, it's a bi+ch having something so rare that doctors have a hard time with it. Something with no known cause, no known cure and that even treatment is hit and miss at best.

As far as the name, everyone here agrees with you. That's why I never say I'm having a headache. I call it an attack. I wish they would rename it - the scarier sounding the better. Here are some other names it has been called.

migrainous neuralgia, erythroprosopalgia, Raeder's syndrome, spenopalatine neuralgia, ciliary neuralgia, vidian neuralgia and histamine cephalalgia.

I guess technically you wouldn't be lying if you called it one of these.

Gator

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Biker on Dec 5^th, 2004, 9:04am

Its kinda difficult to explain to an employer that ya cant preform cause ya have a headache. All they know is you are not making them money, therefore, you are replaced. There are many many times I have thought about going to see about getting dissability for these headaches. Have not done so, but someday, I fear I will have to check into it.

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by toolong on Dec 5^th, 2004, 9:06am

I've brought this up before.People who have never experienced a CH don't have a clue.Untill I went chronic I thought that people were just whining and overreacting with a "migraine"or CH.Damn was I wrong! My wife suffers from a migraine with her monthly cycle and can't figure out how I live with them every frickin' day.It's been 5 years now and I've kinda learned to adjust and live with the deamon.02 is my drug of choice.It helps me get thru the really shitty ones.As for people that don't understand,just tell them it's an uncurable afflication of head pain,and if they don't get it, screw them! >:(David

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Bob_Johnson on Dec 5^th, 2004, 9:14am

All this medical lingo will only cause eyes to glaze over.

How about using Dr. Seymour Diamond's description:

"I have suicide headaches."

At the very least, you would get their attention and, perhaps, have the chance to explain your meaning. <bg>

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by don on Dec 5^th, 2004, 9:24am

I tell them I have the

getthefuckawayfrommeorillkickyainthenuts neurological disorder. Extremely painful to me and you.

Symptoms include:
Extreme pain and swelling in the genital area.........yours.

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by the_old_man on Dec 5^th, 2004, 10:53am

I'm fairly new to this board and have found it to be extremely helpful to me in many ways. I too have been embarrassed to tell someone that the pain I am suffering is a cluster headache. The look on their face tells me what they're thinking..."Yeah, everybody has headaches you big wuss. Stop whining, you big baby, and get over it."... Having read through the threads here, I think I've come up with an explanation that might work for me. I have stolen much of this from things others here have said. I showed it to my wife and she asked me to print it out for her, so when someone asks her what's going on with me, she can more accurately describe it.

I have a very rare, extremely painful, neurological vascular disorder called spenopalatine neuralgia. It is characterized by the sudden onset of intense, dibillitating pain involving the eye, temple, ear, jaw, and neck of one side of the face. The attack may last from 30 to 90 minutes, but may last up to 3 hours. A cycle generally lasts from 4 to 8 weeks, then may subside for months or even years...only to return. Just as suddenly as the pain came on, it disappears. Attacks may occur during the day, but most often occur during sleep, waking the person, forcing active involvement in getting through the attack; i.e., pacing, head banging, screaming, crying, willing to do anything to stop the pain. Some people may go weeks without an uninterrupted full night's sleep further adding to the problem. For some, called chronics, the cycle never ends. For the episodic sufferer, there may be 3 to 5 attacks in a 24 hour period. Once the cycle ends, they are pain free until the next cycle. For the chronic sufferer, there may be up to 10 attacks during a 24 hour period and the cycle may never end. There is no known cause nor is there any known cure. There is no medication that will stop this process, but some medications can lessen the severity or frequency of the attacks. Unfortunately, there is no consistency in the effectiveness of the medications, and what works for one, may not work for another. During a cycle, people with this disorder rarely, if ever, experience a truly pain free day. Spenopalatine neuralgia is generally not thought to be hereditary.

Just thought I'd share this. Makes me feel better just getting my thoughts together and letting it all out.

The Old Man

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by rextangle on Dec 5^th, 2004, 3:21pm

Yep, Jonny's right... tell them to get the fuck away!
It's happened to me too many times. That's why I stopped talking about it to the little fucknuts with no brains.

I once told a friend of mine's wife about it, went into details to explain what it was and then she goes:

"Oh, I can relate, last week I had such a bad headache, I had to lay down and close my eyes... then I took an aspirin, and it went away!!! You should try it, it really works!"

At that point, I wanted to pick up a crowbar and whack her on the side of the head and then jam it in her eyeball and say "you should take an aspirin, ir really works!"

Don't get me wrong, I'm not a violent person, but I get sooooooo freakin' fed up when I hear those know-it-all telling you how to get rid of something they have no clue about!

So, Survivor, you're not alone! They are!
Cheers,

Rex

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Merlinus on Dec 5^th, 2004, 3:48pm

I given up with calling it headaches also, nowadays, i have a bl**dy pain, and if i ever catch the barst**d who is sticking that bloody screwdriver through my head and the back of my eye, i'll kill the barst**d.

Am three months into current attack, my employers, have sent me for head scans, neurologists and such like, but dont like it that my doctors refuse to let me work at momment.

i've given up trying to fight the pain, the best i have found is managing the pain (not very well) but helps sometime.

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by don on Dec 5^th, 2004, 10:10pm

I dont understand us and I AM US!

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by marlin on Dec 6^th, 2004, 12:46pm

on 12/05/04 at 15:48:59, Merlinus wrote:

Am three months into current attack, my employers, have sent me for head scans, neurologists and such like, but dont like it that my doctors refuse to let me work at momment.

i've given up trying to fight the pain, the best i have found is managing the pain (not very well) but helps sometime.

So Merlin, explain how long you've been getting these CHs and what you've tried pharmacologically so far.

I've been getting slammed since '78. Cycles always lasted around 6 weeks. Used to get hit once every other day REAL HARD at the beginning. Now I get hit more often and a little less severely during my cycles. Could be the meds? The cycles have also been getting further apart - last one went 2-1/2 years in between. I'm hoping they just disappear.

The point being, there are a lot of meds that, in the correct combination might help. The trex is a miracle for me. Also used the pred taper this and the last cycle and I'm convinced it stopped my cycle.

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Ruth on Dec 6^th, 2004, 3:29pm

Oh well, I think it just can't be understood by one who does not have this pain.
We must not let it get us down that they don't understand or get mad at them.
The people around here understand, unfortunately, all to well, so just hang around with us and we will keep you company.

Ruth

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by swiftlaw on Dec 24^th, 2004, 12:18am

So true. It seems a bit petty but I so feel it. Once had a ch in an airport. I curled up in the corner, looked at my watch and started my vigil. A Fellow passenger called the paramedics ( As I was a bit more noisy that I realised) told them I had headaches and they almost sneared at me. I hate em. I love the "Extremely Rare Vascular Funkadillic"

Thanks

Title: only the few GET IT!!!!!
Post by snook on Dec 24^th, 2004, 10:04am

My husband is the ch, I have had my share of medical bs. This is what we say to the ONES that dont get it or seem to look at us like oh barb and bill ARE SO SICKLY I SAY PISS OFF TO THEM!!!!!!!!!!! It amazes me not only how ignorant people are, there are the few that are understanding . Bill and I always say to each other NO ONE will ever no or ever get it . Trying to explain chs ,well dont even try anymore. My little CANCER they get, but the ch suffer goes through more pain then ANYONE WILL EVER GET!!!!! Our faith in god and our bond is what keeps us going. This time of year we decided no comercial crap for us, the birth of christ thats it . All we want is our health to improve, a pf day for Bill and all of our ch friends being a surviver thats the chritmas wish for us. I pray for people that are so uncaring and seen to not even try to understand the true pain chs go through . There is more charactor, kindness and brillance of heart in a ch and the ones that love them. snook [smiley=bow.gif] [smiley=bow.gif] [smiley=heart.gif] [smiley=twocents.gif] [smiley=thumbsup.gif] [smiley=wave.gif] [smiley=thumb.gif] [smiley=hiya.gif]

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Redneck on Dec 25^th, 2004, 6:49pm

They ain't gonna understand.
I just did about 2 1/2 years without a cycle, in the mean time we got lots of new people in the office and the 8 other regional coordinators I work with. So I was going to be nice and try to educate them. WRONG ! If I hear "I had a bad headace once" one more freaking time I'm gonna hurt somebody!

Think I will just tell them I got leporsy of the brain but I think I am past the infectious stage!
;;D

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Wendy1 on Dec 30^th, 2004, 11:18pm

It absolutely amazes me the number of medical professionals that have no idea what Cluster Headaches are.

I think that's part of the depression during a cycle. No one understand. And also why this board is dedicated and important to us. WE all understand. Unless you've had the beast, you CANNOT fully understand the pain. We c/h have true sympathy for others because we KNOW what it's like to be there.

I just don't deal with ppl that don't know. I would rather try to hide it from ppl then try to explain it. AHHGGG

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by Chillrmn1 on Dec 31^st, 2004, 11:27am

I'm pretty much a down to earth person and tell it like it is. Don's statement: "getthefuckawayfrommeorillkickyainthenuts neurological disorder. Extremely painful to me and you" is similar to what I say to the idiots not worth dealing with.

But have to give "the old man" kudos for his explanation & paragraph. This I will copy, keep in the glove box in case pulled over by police while having an attack or use at work while trying to maintain restraint and not totally pissing my superiors off and getting fired.

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by AnnaB on Dec 31^st, 2004, 11:36am

on 12/05/04 at 02:17:34, survivor13 wrote:

WHY PEOPLE CAN'T UNDERSTAND US!

Before judging a person with a disease, like yours, 'stupid people' should live one of your days to understand.

Title: Re: WHY PEOPLE CAN'T UNDERSTAND US!
Post by BackwaterBiomed on Jan 2^nd, 2005, 3:15am

No matter where you go and what happens to you, there will always be people who believe that they have it worse. To them, I usually say, "I'd hate to be the one to break it to you, but neither one of us has the market cornered on suffering."

That usually grabs there attention. If it doesn't, I usually make the snap judgement that this person isn't worth any more of my time.