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        Cluster Headache Help and Support >> Cluster Headache Specific >> What is with everyone Comparing CH to Migraines?
        
(Message started by: JohnMcCloy on Sep 7^th, 2006, 11:12pm)

Title: What is with everyone Comparing CH to Migraines?
Post by JohnMcCloy on Sep 7^th, 2006, 11:12pm

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.

Title: Re: What is with everyone Comparing CH to Migraine
Post by BigCoffinHunter on Sep 8^th, 2006, 12:32am

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.

Title: Re: What is with everyone Comparing CH to Migraine
Post by bothofus on Sep 8^th, 2006, 4:47am

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by LeLimey on Sep 8^th, 2006, 5:11am

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by BB on Sep 8^th, 2006, 5:22am

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by starlight on Sep 8^th, 2006, 9:32am

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by Jobette on Sep 9^th, 2006, 6:21am

[smiley=laugh.gif]Hey I like the "cluster attack" part. It is really an attack.

Title: Re: What is with everyone Comparing CH to Migraine
Post by burnt-toast on Sep 9^th, 2006, 7:51am

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by Katherinecm on Sep 9^th, 2006, 12:27pm

How would we go about changing the name? Who decides those things?

Title: Re: What is with everyone Comparing CH to Migraine
Post by thebbz on Sep 9^th, 2006, 3:29pm

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by Chillrmn1 on Sep 9^th, 2006, 5:43pm

on 09/08/06 at 05:22:44, 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.

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

Title: Re: What is with everyone Comparing CH to Migraine
Post by paulc on Sep 9^th, 2006, 6:47pm

on 09/08/06 at 00:32:37, BigCoffinHunter wrote:

Hey BigCoffinHunter: I've been meaning to write to you and ask you what is the meaning of your screen name here [smiley=huh.gif]. Are you in the funeral business? I'm just wonder-ing because you have such an unusual name. Thanks.
Paulc

Title: Re: What is with everyone Comparing CH to Migraine
Post by BigCoffinHunter on Sep 9^th, 2006, 8:22pm

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.

Title: Re: What is with everyone Comparing CH to Migraine
Post by maffumatt on Sep 9^th, 2006, 8:28pm

oy.......Blaine's a pain.......

Title: Re: What is with everyone Comparing CH to Migraine
Post by wam on Sep 9^th, 2006, 11:12pm

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.

Title: Re: What is with everyone Comparing CH to Migraine
Post by kcakebread on Sep 10^th, 2006, 3:06pm

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."

;)

Title: Re: What is with everyone Comparing CH to Migraine
Post by Charlotte on Sep 10^th, 2006, 3:20pm

on 09/10/06 at 15:06:48, kcakebread wrote:

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