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Topic: Migraines are Worse than Clusters... (Read 1097 times) |
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Langa
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Migraines are Worse than Clusters...
« on: Dec 7th, 2004, 1:05pm » |
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I was in the ladies room today washing my hands when a co-worker walked in and asked me how I was doing with regard to my headaches. I answered that I was much better now that they went into remission (over that cycle now about a month).
She accidentally caught me sucking on the oxygen once during my 4 month cluster bout in a back supply room where my boss told me to keep it should I need it. Afterwards she asked me why I needed the oxygen and I explained. Her response? "Yeah, I know. I get severe migraines. Nothing like those. Hope you get rid of your headaches soon". She gave me a smirk and never spoke to me again.
Today, she said the same thing..."As I said before, I can relate, though i'm sure your pain is not as bad as the migraines I get".
For the first time in my life I decided to really educate someone on the horrors of cluster headaches. I walked over to her, looked her straight in the eye and said "Really? You're mistaken. There is something more horrible than migraines, not to downplay your pain because I have loved ones that get migraines, but let's see, you can lay down and close your eyes in the dark and fall asleep. Me? I crawl on the floor, vomit on myself and bang my head on the wall until i get nosebleeds trying to get the imaginary icepick out of my brain, oh and let's not forget the runny nose you can't blow because you feel like your brains will come out of your ears, the sweats and the level of lunacy you reach where only suicide seems to be the only way out, but it gets better...because of the trauma my brain just went through, I'm left feeling like I need to sleep for two days, but I can't, you see I have to keep pressing in and trying to have an almost normal life, almost I say because I live in constant fear, dread and anxiety of when the next one will hit me. Do you know what it's like to live in fear? Think about it. It's like you're trying to hide from an unseen monster who will pounce on you when you least expect it. How about dreading sleep because that's when it really comes to get you and by that time it wakes you, it's been there so long you have no chance of a good fight. So you sit back and wait for it to be done with you. Knowing that it will come back when it damn well feels like it. But imagine living like this with no breaks. Mine will go away, but others live like this for months/years on end. Still, none of that even compares to the loneliness we feel because most of the world isn't informed of this horror. I won't downplay your pain if you don't downplay mine. Deal? Have a nice day"!
Sorry for the long thread. To all fellow sufferers, I wish you PF Days, Nights and Years...
Langa
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thomas
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Re: Migraines are Worse than Clusters...
« Reply #1 on: Dec 7th, 2004, 1:18pm » |
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Bravo! 
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cootie
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Re: Migraines are Worse than Clusters...
« Reply #2 on: Dec 7th, 2004, 1:27pm » |
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Atta girl !!!! I'm a supporter here but am totally annoyingly notorious for CH SPEECHES to anyone I run into at home that crosses my path with pain reference to them. I've seen it too long......and I know it all too well. Watchin ch from a backseat window Pam
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purpleydog
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Re: Migraines are Worse than Clusters...
« Reply #3 on: Dec 7th, 2004, 1:27pm » |
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on Dec 7th, 2004, 1:05pm, Langa wrote:For the first time in my life I decided to really educate someone on the horrors of cluster headaches. I walked over to her, looked her straight in the eye and said "Really? You're mistaken. There is something more horrible than migraines, not to downplay your pain because I have loved ones that get migraines, but let's see, you can lay down and close your eyes in the dark and fall asleep. Me? I crawl on the floor, vomit on myself and bang my head on the wall until i get nosebleeds trying to get the imaginary icepick out of my brain, oh and let's not forget the runny nose you can't blow because you feel like your brains will come out of your ears, the sweats and the level of lunacy you reach where only suicide seems to be the only way out, but it gets better...because of the trauma my brain just went through, I'm left feeling like I need to sleep for two days, but I can't, you see I have to keep pressing in and trying to have an almost normal life, almost I say because I live in constant fear, dread and anxiety of when the next one will hit me. Do you know what it's like to live in fear? Think about it. It's like you're trying to hide from an unseen monster who will pounce on you when you least expect it. How about dreading sleep because that's when it really comes to get you and by that time it wakes you, it's been there so long you have no chance of a good fight. So you sit back and wait for it to be done with you. Knowing that it will come back when it damn well feels like it. But imagine living like this with no breaks. Mine will go away, but others live like this for months/years on end. Still, none of that even compares to the loneliness we feel because most of the world isn't informed of this horror. I won't downplay your pain if you don't downplay mine. Deal? Have a nice day"!
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No shit. I have given up trying to make people understand. It's just not worth the hassle. Excellent description. Would make a good thing to keep in your wallet for the inconsiderate idiots though.
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cootie
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Re: Migraines are Worse than Clusters...
« Reply #4 on: Dec 7th, 2004, 1:32pm » |
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I've actually caused myself a temporary hot flash over it all when someone looks us in the eye and says.....well why don't you keep a bottle of advil in your pocket and take them rite away or maybe check into food allergies.....and is probly weather related. I like it when they say.....why don't you have anything that works to avoid them and go to a different doctor. Simple simon ordeal it is NOT. I do agree it is alot of times FUTILE to wear yourself out and work yourself up explaining it. But I won't let it go at bein that simple even if I have to shout. A ch soldier that has been there seen it but fortunetly don't have it Pam
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| « Last Edit: Dec 7th, 2004, 1:33pm by cootie » |
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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thomas
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Re: Migraines are Worse than Clusters...
« Reply #5 on: Dec 7th, 2004, 1:35pm » |
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Yeah it always amazes me how the dumb ass serving my burger and fries at the local Mickey D's or the wench serving me my frosty barely pop after a hard day of work, think they know as much as my friggin' neuro. 
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Langa
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Re: Migraines are Worse than Clusters...
« Reply #6 on: Dec 7th, 2004, 1:39pm » |
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I agree Purpley...sometimes it seems futile...still, as Cootie said, we are CH Soldiers...we're the only voice for it when it comes right down to it really.
I really don't know if that woman will ever speak to me again or even remember what I said. Still, our voice has to be heard...and maybe somewhere down the road, what we say to others as a ways of informing them of clusters, can actually help another clusterhead who's in the dark and thinks, like I did for so many years, that I was the only one on earth with this pain.
It sucks no matter what, but I think after 26 years, I'll join with Cootie and shout to the top of my lungs... 
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kimh
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Re: Migraines are Worse than Clusters...
« Reply #7 on: Dec 7th, 2004, 1:47pm » |
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It is a shame and a sham that we all feel the burden of the "explanation"........
Not our fault and to a large degree not the fault of most people with no understanding. They simply do not know and have never "HAD" to know.....If you were bleeding in the street, for sure you'd receive instant empathy and the appropriate responses from public in general along with prompt medical attention. The truth is that cluster sufferers are STILL not privvy....That is the continuing travesty..... 
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thomas
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Re: Migraines are Worse than Clusters...
« Reply #8 on: Dec 7th, 2004, 1:50pm » |
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I consider the source most times, yes people that tell me how to "cure" my headaches or they have cousin or whoever that gets "really bad" headaches....... I consider them to be blithering idiots and unable to hold a discussion with some one of my advanced intelligence and dismiss them as having any worth as a human being whatsoever.
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Jeepgun
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Re: Migraines are Worse than Clusters...
« Reply #9 on: Dec 7th, 2004, 1:50pm » |
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*standing ovation* BRAVO!!
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TomM
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Re: Migraines are Worse than Clusters...
« Reply #10 on: Dec 7th, 2004, 1:57pm » |
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Excellent descpription.
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echo
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Re: Migraines are Worse than Clusters...
« Reply #11 on: Dec 7th, 2004, 2:02pm » |
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Time will tell if she's stupid enough to open that can up again.
Excellent description.
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Leesa
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Re: Migraines are Worse than Clusters...
« Reply #12 on: Dec 7th, 2004, 2:25pm » |
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VERY well said!!! It dont get any better then this!!! Gotta love it!!! One more person out there that got "bitey end" of a CHer and got some learnin!!
Leesa
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marlin
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Re: Migraines are Worse than Clusters...
« Reply #13 on: Dec 7th, 2004, 2:28pm » |
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Nice description.
I always get a little ticked when I get that slack-jawed dopey look in response to my admittedly short lament about CHs. Invariably I also get an unsolicited presciption for Exedrin Migraine, "I really works for me, You should try it".
That's when I let loose with "There's NO FUKCEN PAIN MEDICATION INCLUDING MORPHINE THAT CAN STOP A CH IN ITS TRACKS!!! IF MY ARM WAS CHOPPED OFF WITH A DULL CHAIN SAW I WOULDN'T NOTICE BECAUSE A CH IS ALL THE PAIN MY BRAIN CAN HANDLE AT ONE TIME - GET IT??????"
geeze, I really like the idea of calling a CH by a more uncurable and debilitating sounding purely medical latin name.
But hey, it's still a HA. At the very bottom, usually in mid cycle when I'm doing the "WHY ME" dance, I try and think of a 10 year old kid with terminal cancer or a quadriplegic. That's usually when my cycle winds down...
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kimh
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Re: Migraines are Worse than Clusters...
« Reply #14 on: Dec 7th, 2004, 2:34pm » |
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Hey Marlin,
We are the "monkey in the middle", ehh?
We are faced with choices and most of the time frustration and futility win. But reality is that what we go through really is an insult piled on top of an injury that cannot kill us, but nevertheless DEBILITATES us and keeps us outside the gates of what makes all the difference = empathy and recognition.....
How will that goal be achieved for kids in the future????
I read and relate to this all the time. IT needs to change because kids are getting clusters and being misdiagnosed as we speak.
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Ruth
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Re: Migraines are Worse than Clusters...
« Reply #15 on: Dec 7th, 2004, 3:22pm » |
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Langa,
That was wonderful, what you said.
I am very proud of you for standing up to that idiot.
Also glad to hear you are out of cycle. Me too now for about a month.
Take care, happy holidays.
Ruth
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karma
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Re: Migraines are Worse than Clusters...
« Reply #16 on: Dec 7th, 2004, 3:22pm » |
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Great description I hope it made you feel better because thats all it probably did.
You can't blame a person that has been raised to believe that there is a magic pill for everything to not understand.
Just remember that the worse pain a person has experienced is all they can relate to hence the 10 on the kip scale. There is nothing higher than a 10 but my 10 may be your 8 or you may experience a new level of 10 on any given day.
In the long run its just not worth getting bothered if someone that doesn't matter in your life understands or not.
Be happy for them that they don't understand.
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Jeepgun
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Re: Migraines are Worse than Clusters...
« Reply #17 on: Dec 7th, 2004, 3:25pm » |
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It's a lot easier to just kill and eat them. 
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marlin
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Re: Migraines are Worse than Clusters...
« Reply #18 on: Dec 7th, 2004, 3:32pm » |
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on Dec 7th, 2004, 2:34pm, kimh wrote:Hey Marlin,
But reality is that what we go through really is an insult piled on top of an injury that cannot kill us, but nevertheless DEBILITATES us and keeps us outside the gates of what makes all the difference = empathy and recognition.....
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It's not likely that empathy from strangers will cure your CHs. You'll still get the pain. Focus on what might make a difference in your life and screw anyone that doesn't want to understand.
I focus on my boss understanding and of course my family knows what I go through. I rarely complain about pain other than CHs (and I've got a few others) so those that know me accept that CHs are pure hell.
I sure do feel for those that lose their jobs over CHs though. There should be some way to prevent that from happening...
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Langa
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Re: Migraines are Worse than Clusters...
« Reply #19 on: Dec 7th, 2004, 3:33pm » |
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on Dec 7th, 2004, 3:25pm, Jeepgun wrote:| It's a lot easier to just kill and eat them. |
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cootie
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Re: Migraines are Worse than Clusters...
« Reply #20 on: Dec 7th, 2004, 3:38pm » |
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As in nature we 'LEARN' from our mistakes......that other girl is probly goin to be afraid to talk to you again.....you either scared her into THINKING or lunatic came to her mind first. I have found out that useing the comparasin to 'amuptation without anisthtetic' gets a GREAT bit of attention....a real show stopper and most the time the people shut the hell up and get quiet. I 'can feel' that they no longer have anything to say as far as advice. I have just TOPPED them off. But yeah like Kim said people that have never went thru it or had to live with it do NOT have a real clue. It's the same with alot of pain accurances.....amazes me how some people who have never had to visit the House of Pain for anything cept a tooth pulled or stoved toe. Maybe a cramp or sinus headache here and there. Even with back issues I get the same CRAP......yeah my back hurts to so I just take it easy a day or take some advils.....tylonal is wonderful and even the hospitals use it. (liver killers) Try a massage.....touch me and yer dead meat Pam
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Jonny
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Re: Migraines are Worse than Clusters...
« Reply #21 on: Dec 7th, 2004, 4:12pm » |
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Outstanding post, Langa!
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...................................King jonny
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| « Last Edit: Dec 7th, 2004, 4:12pm by jonny » |
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Tiannia
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Re: Migraines are Worse than Clusters...
« Reply #22 on: Dec 7th, 2004, 4:15pm » |
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That was great langa...
Friday, I was getting shadows bad and felt he sweats coming so I knew I was in for a big one. So I decided to stop at Mc Donalds to get the kids fed so I could suffer wthout feeling like a bad mom for not cooking dinner and the order guys says. "Well you are just a ray of sunshine tonight. Arnt you?" Not trying to be an ass I said sorry I am getting a HA. So he finished my order and as I drive up to get my food he says/ "Go home and take some advil or something. " Concidering I was at about a K6 and ramping at that moment, I figure I did good to have on the news "McDonalds Window worker murdered by having the 2 happy meal toys shoved up his ass and down his throat."
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Jeepgun
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Re: Migraines are Worse than Clusters...
« Reply #23 on: Dec 7th, 2004, 4:17pm » |
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God.... What a fuckin' azzhole... I would have replied, "Fuck you. Fuck you very much."
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kimh
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Re: Migraines are Worse than Clusters...
« Reply #24 on: Dec 7th, 2004, 4:17pm » |
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No . ...
Empathy will surely NOT provide what we are all looking for but surely on a larger scale would help????
Recognition of an injury for exactly what it IZ helps folks to treat it faster and with a motivation for effectiveness???
IF no one knows what the hell is huring you how can they relate at awl? Understanding is step 1. Treating is step 2. We still have not arrived at 1's door.
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