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The color purple


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I don't want to sound crass, but a migrane is NOT a cluster headache.  It's a Suicide Headache. 

I interpreted the article to sound like oh yea,,, and cluster headaches are like migrains...  but Migrains are the worse of the head conditions represented....

I feel like we've just been further pulled into "oh you just have a headache" kind of cr@p.....

CH should be completely separated from Migraine or other headaches... :(  Colors and ALL.  (ok I'll stop now)  ;)

Jeff

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Black... 

If Cluster Headache needs a color it should be BLACK.  In memory of those that decided to end the pain.  No doubt there are many that took that action, were never properly diagnosed nor ever told friends or family what was wrong before they did it.

Purple is a happy (Rainbow) color, not at all representative of Cluster Headache...  Just my 2c...

PFW,

Jeff

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The purple thingy sounds well intentioned and all, but I'm with you Jeff, let it stand specifically for migraine, let's not go lumpin' the CH and the migraines together too much.

Black arm bands are for general mourning, so that's already taken.

Hey maybe we should go for black headbands. OK maybe this ain't the best time even for gallows humor, but they would look pretty cool - I would've liked to have seen Dan sportin' one on his Nat Geo show.  :D

OR you know what else is newly considered cool in the Jeebs universe? Black Bowler hats like ya see 'em donning in Downton Abbey, and in the René Magritte paintings with the dudes with apples in front of their faces. ;D

Let's all wear those 24/7. Or at least to the Clusterbuster conference.  :D

image2xl.jpg

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let's not go lumpin' the CH and the migraines together too much.

I know how you feel, Jeff & bejeeber, but remember: there's about half a million clusterheads in the US, if that many, and eleventy-trillion migraineurs...

Clusterheads alone will get very little attention with any color.

Also remember our little tryptamine trick just might work on migraines too...and development depends on market here in the Western World.

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Tommyd,

Actually I would suspect directly lumping CH together with migrain would lessen our chances of getting proper treatment.  FACT 1:  There are already a gazzilion (is that really a number?) medicines developed and used for Migraine.  FACT 2: NONE of those medicines really work on clusters (ok maybe imitrex, but on label no one can take 8 shots a day for 4 months)...  On label I think you can only take something like 4 shots every 3 days if I remember correctly, and then you get rebounds.  Developing more treatments for migraine isn't likely to help Cluster Heads.

I completely agree with awareness and (a gazillion) other efforts those on this board and elsewhere are doing to further helping those with CH.. :)

BUT I have to say that article about MIGRAINE and 'other' headaches, struck a nerve.  I've been told "oh just take a tylenol and get back to your desk" cr@p.  Putting us in a SUB catagory of migraine is demeaning...

I'm not trying to down play migraine here.  But, let's be honest that article is similar to saying "Stomach Ache, and other stomach related issues, (sub paragraph Stomach Cancer, like the two are even related.  They're only related because of the part of the body they affect). 

Jeff

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Bringing a tryptamine treatment like BOL 148 to market for migraineurs would very likely help clusterheads.

And Teri Robert is writing in a blog targeted at migraineurs and doing what she has often done - increase awareness of cluster headache to migraineurs and their supporters, as well as the public in general. When I said she was an old friend, I meant it. Did you miss this part of the article?

"The following nonprofit organizations agreed and have endorsed purple as the awareness color for Migraine and all headache disorders:

The American Headache Society (AHS)

Clusterbusters

MAGNUM (The National Migraine Association)

The Migraine Research Foundation (MRF)

The National Headache Foundation (NHF)

O.U.C.H (The Organization for Understanding Cluster Headache)

The PFO Research Foundation."

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Did you miss this part of the article?

"The following nonprofit organizations agreed and have endorsed purple as the awareness color for Migraine and all headache disorders:

The American Headache Society (AHS)

Clusterbusters

O.U.C.H (The Organization for Understanding Cluster Headache).....

Oh. Woopsy. I missed that part.  :-[ Purple bowler hats for everyone!?  :o:D

image4xl.jpg

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How cool  :D

Found on the Web:

In parts of East Asian countries such as Japan, purple is known as the color of death.

In general, the meanings of Violet / Purple signify spirituality and contemplation.

I think for so many reasons, Purple should be the colour of cluster headaches

and I also agree with this:

Clusterheads alone will get very little attention with any color.

Also remember our little tryptamine trick just might work on migraines too...and development depends on market here in the Western World

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Then I am 'styling'! 8-)

Back in 'the day' good girls did not wear purple - for any occasion.  ::)

But, there is an old poem/story written by a lady who said that 'I am old enough to wear Purple'. Being in that over 50 category now, I wear purple often.   :o

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Back in 'the day' good girls did not wear purple - for any occasion.  ::)

Yes I remember when purple became the new red. My Dad wouldnt let my mother wear red.....EVER.

Look people.....First of all, yes, Teri is an old friend and does a LOT for cluster people and has for years. She advocates for cluster headache research in all the important areas and has for years.

The purple ribbon is for headache disorders. If you dont have a headache disorder, don't wear one!! I promise, wearing a purple ribbon will NOT give you a migraine.

All colors are used by multiple groups.

If you're wearing a purple ribbion and someone asks you what its for, you're going to tell them it's for cluster headaches and other headache disorders. Right?

The colors dont matter. The associations do matter.

Bob

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My favorite line from "The Color Purple"...

I think it pisses God off when you walk by the color purple in a field and don't notice it

Shug Avery

And then there's my favorite line from "Shawshank Redemption".....

Andy Dufresne... who crawled through a river of shit and came out clean on the other side.

Red

Purple & Red....makes perfect sense to me!  If we're talking, that means others are talking, if others are talking hopefully, someone is listening.  

:)

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I haven't read the article yet (just logged on while my bath water was running). Will throw out a couple thoughts though, and read the article this weekend.

There is advantage in numbers. Being Transsexual has nothing, absolutely nothing, to do with being homosexual. But yet, there are LGBT lobbying groups (lesbian, gay, bi, transsexual, if you didn't know). Why do we throw our hat in with the homosexual community when we aren't (necessarily) gay? Because it gives us a loud voice when otherwise we'd have a squeak. I would go so far to argue that Transsexuals experience many equal rights in the UK because we were included in with LGBs.

So, standing on our own won't give us much of a voice. And even if we aren't even remotely close to headaches or migraines, at least we can jump on their coat tail.

I think we should be more focused on changing the name of cluster headache, to cluster attack, or some other appropriately hellish name that has come up threads time and time again. I think our greatest downfall is the 'headache' in cluster headache, not what colour we pin on our jackets.

If I were picking a colour, I'd say red. Simply because cluster attacks feel like a red hot poker to the eyeball.

Anyway, that was my 2 cents on the subject.

MG

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I think we should be more focused on changing the name of cluster headache, to cluster attack, or some other appropriately hellish name that has come up threads time and time again. I think our greatest downfall is the 'headache' in cluster headache, not what colour we pin on our jackets

AGREED, with several exclamation points!!!

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  • 2 weeks later...

Since some aren't in clusters, a la Chronics like me, I'd say drop cluster as that term really doesn't apply unless we are all episodic.

Take  away cluster and take away headache and that leaves me at ....uh

Cranial attack,  acute brain attack...somethIng that sounds frightening and intense :o

All I know is it damn sure isn't a headache and it damn sure isn't in clusters >:(

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Coming up with just the right term does seem to be a bonafide McTuffy indeed.  :-?

I think a lot of us would agree w/ya Hipshot that neither cluster nor headache are all that fittin'.

I was thinking 'suicide headache' would be more accurate, and the suicide part could sorta cancel out the otherwise misleading headache part, but still it ain't ideal IMO.

I'm hoping at one point we can find something accurate that would do the job for us, the general public, and the medical establishment, and will be adopted.

It wouldn't fit that criteria, but I think my favorite so far is one I saw offered up by a CH'er: Nuclear pinging behind the eye

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Cluster Bomb, as in a REAL bomb that covers a lot of territory with one explosion

Neurological Shit Storm (what I currently use)

Brain Explosion

Evil monkey, like Family Guy

Hypothalamus IED

Biologic Miss-Fire

If I had a beer in hand I am sure I could think of some more. 8-)

Maybe later!

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;)

I know. Maybe I am not 'the proper lady' my father tried so desperately to raise. :-[

American Dad: The best was when he took his pistol for a ride in the car and played gitchi, gitchi, goo and pulled the trigger. ;D And, Roger rocks.   8-)

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