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Topic: What is with everyone Comparing CH to Migraines? (Read 745 times) |
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JohnMcCloy
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What is with everyone Comparing CH to Migraines?
« on: Sep 7th, 2006, 11:12pm » |
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I finally decided to print out about 10 copies of the O.U.C.H explanation Of Clusters.Trying to explain it to people is like trying to teach Calculus to 2nd graders..Its pointless.
All anyone ever says is
"That Like a Migraine"
"My wife gets bad Migraines"
"Are those like Super Migraines?"
"Are those Like Migraines in different parts of your head is that why they are called Cluster"
I have been trying to explain to people for years and 1 in 50 ppl take the time to listen and just shutup.Sometimes i just shake my head.
I wish I could give every single person who asks me if it is like a Migraine and looks at me like I need to just toughen up a Cluster Headache just once for 45 mins.
And say to them no actually its like that.Picture 3+ of those a day at the most inconvenient times.Now Picture the poor people who are Chronic and do not even get temporarily get Relief for 6months to a year like us episodic.
Sorry Just had to vent.I have heard that word 98 times in the last month.
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| « Last Edit: Sep 7th, 2006, 11:13pm by JohnMcCloy » |
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BigCoffinHunter
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Re: What is with everyone Comparing CH to Migraine
« Reply #1 on: Sep 8th, 2006, 12:32am » |
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Yeah, you really can't make someone understand that they are different. I don't even like calling them headaches, it's not even the right word. If they see you have one however, they usually can tell something is horribly wrong. The first time they see a 6' 220lb guy rolling on floor whimpering, they usually get the point.
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bothofus
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Re: What is with everyone Comparing CH to Migraine
« Reply #2 on: Sep 8th, 2006, 4:47am » |
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Most don't understand at all.
Some don't care to understand.
A few are sympathetic and supportive.
But if I show them the shots I take to kill it, their eyes open a little wider. Not many people I talk to about them have ever heard of giving yourself a shot to kill a headache. So I think they start, just barely, to realize you're not talking just about some bad-ass headache.
They just think a doc should be able to "fix it"
Carl
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LeLimey
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Re: What is with everyone Comparing CH to Migraine
« Reply #3 on: Sep 8th, 2006, 5:11am » |
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Migraine is a recognised headache condition. People are often only trying to empathise when they say stuff like that but I do know how frustrating it is!
I usually tell them that in a migraine the blood vessels on the affected side of your head can swell by up to twice their normal size which is what causes the pain. I then go on to say that in a cluster attack the blood vessels on the affected side of your brain swell by up to TWENTY times their normal size which is why they are so excruciating. If you can demonstrate both using pencils or fingers or whatever as a visual it can be very dramatic. People can relate to that then.
I make sure I do not denigrate migraines in any way. They are a painful and debilitating condition which cause untold misery and I wouldn't wish them on anyone but it does help explain the difference between the two conditions.
Hope that helps you!
Helen
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BB
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Re: What is with everyone Comparing CH to Migraine
« Reply #4 on: Sep 8th, 2006, 5:22am » |
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I dont like the name cluster headaches either, its so misleading, I think it should be called cluster attacks !
Just like how people can distinguish between chest pain and heart attack, one really means something is much more severe.
Annette
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| « Last Edit: Sep 8th, 2006, 5:24am by BB » |
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starlight
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Re: What is with everyone Comparing CH to Migraine
« Reply #5 on: Sep 8th, 2006, 9:32am » |
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Sometimes you will get really lucky and tell someone who has actually heard of clusters and knows something about them--like someone I told recently suffered themselves from severe migraines and had to go to a headache support group where there were some cluster heads (so it was cool they said "OOOHHHH, I know all about those.".
Otherwise, if they have not heard of them forget it. The other day I tried to explain to a neighbor about these HAs cause she had seen the O2 truck come to my house and she said "well, it is kind of hard to breath when you are in pain".
after I had tried to explain the oxygen was to get rid of the HAs and explained what they were--not to help me breath--but it is like--I think people don't believe it--that the HAs are that bad and that they are hitting you every nightt for months (or years in the case of chronics).
So be choosey about who you tell or just get ready to laugh at some very strange comments! Take care, Star
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| « Last Edit: Sep 8th, 2006, 9:33am by starlight » |
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Jobette
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Re: What is with everyone Comparing CH to Migraine
« Reply #6 on: Sep 9th, 2006, 6:21am » |
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 Hey I like the "cluster attack" part. It is really an attack.
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burnt-toast
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Re: What is with everyone Comparing CH to Migraine
« Reply #7 on: Sep 9th, 2006, 7:51am » |
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Its human nature to attempt to understand things by connecting things we don't understand to things we (somewhat) understand.
Prior to having Cluster Headaches I had never heard of the syndrone. Its rareity makes most people immediately associate it with the more common recurring headaches - Migranes. 12 or so years ago, I would have most likely done the same.
Even worse is having to deal with those who immediately associate Cluster Headaches with the plain old headaches everyone gets.
A name is everything and this one ends in "headache"
Tom
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Katherinecm
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Re: What is with everyone Comparing CH to Migraine
« Reply #8 on: Sep 9th, 2006, 12:27pm » |
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How would we go about changing the name? Who decides those things?
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thebbz
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Re: What is with everyone Comparing CH to Migraine
« Reply #9 on: Sep 9th, 2006, 3:29pm » |
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Good topic,
Goadsby say's "pain worse than natural child birth". I like the quote," pain comparable with amputation without anesthesia".
I get both,migraine and CH. There is no comparison in my opinion.
I recently spoke with one person that told me ,"those headaches you get are bad &^^&, I talked to some other people and they told me they are the most terrible thing". I almost fell over.
jb
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Chillrmn1
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Re: What is with everyone Comparing CH to Migraine
« Reply #10 on: Sep 9th, 2006, 5:43pm » |
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on Sep 8th, 2006, 5:22am, BB wrote:| I dont like the name cluster headaches either, its so misleading, I think it should be called cluster attacks ! Just like how people can distinguish between chest pain and heart attack, one really means something is much more severe. |
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Agree 100%. Headache is entirely the wrong word in my book. I always refer to these as "cluster attacks."
Bob
Edited to add: JohnMcCloy - I know your frustration on this issue but I've come to realize that others who don't have clusters could never possibly imagine the pain we experience when having an attack.
PFDANs To All
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| « Last Edit: Sep 9th, 2006, 6:01pm by Chillrmn1 » |
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paulc
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Re: What is with everyone Comparing CH to Migraine
« Reply #11 on: Sep 9th, 2006, 6:47pm » |
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on Sep 8th, 2006, 12:32am, BigCoffinHunter wrote:| Yeah, you really can't make someone understand that they are different. I don't even like calling them headaches, it's not even the right word. If they see you have one however, they usually can tell something is horribly wrong. The first time they see a 6' 220lb guy rolling on floor whimpering, they usually get the point. |
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Hey BigCoffinHunter: I've been meaning to write to you and ask you what is the meaning of your screen name here  . Are you in the funeral business? I'm just wonder-ing because you have such an unusual name. Thanks.
Paulc
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Paul C
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BigCoffinHunter
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Re: What is with everyone Comparing CH to Migraine
« Reply #12 on: Sep 9th, 2006, 8:22pm » |
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Nothing so exciting, it's just the name of a group of outlaws from one of Steven King's Dark Tower books. Just always thought it sounded cool.
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maffumatt
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Re: What is with everyone Comparing CH to Migraine
« Reply #13 on: Sep 9th, 2006, 8:28pm » |
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oy.......Blaine's a pain.......
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wam
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Re: What is with everyone Comparing CH to Migraine
« Reply #14 on: Sep 9th, 2006, 11:12pm » |
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A migraine is a walk in the park compared to a CH.People who dont suffer from CH just dont understand the pain we go through.
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kcakebread
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Re: What is with everyone Comparing CH to Migraine
« Reply #15 on: Sep 10th, 2006, 3:06pm » |
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I understand your "pain." I've taken to using one of the more technical terms to refer to the disease. "I have a neurological disorder: Trigeminal Autonomic Cephalalgia. It's most likely caused by a malfunction of the hypothalamus."
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Charlotte
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Re: What is with everyone Comparing CH to Migraine
« Reply #16 on: Sep 10th, 2006, 3:20pm » |
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on Sep 10th, 2006, 3:06pm, kcakebread wrote:I understand your "pain." I've taken to using one of the more technical terms to refer to the disease. "I have a neurological disorder: Trigeminal Autonomic Cephalalgia. It's most likely caused by a malfunction of the hypothalamus."
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This is a good answer. Then they won't automatically say, oh is it like a migraine. They won't know what it is, and if they care, then you can explain.
Charlotte
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