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sheepdog

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CH. They couldn't think of a better name?
Nov 4^th, 2009 at 10:28pm

Hello everyone,
   In the 20 years that I have been Living with CH I think that I have my meds pretty well regulated and my life back in order. One of the most difficult things about CH to me is dealing with people. I know you've all had the abrupt unexplained exits from social situations only to return minutes later appearing like nothing ever happened. Or, have had to take injections or nasal sprays(or god help you-02) in front of someone.
   Obviously people are going to ask you what you're doing? What is that for? What do you tell them? Couldn't they have thought of a better name than Cluster Headache?
The name just seems to bring on the unintentionally ignorant comments like; I once had a headache so bad I had to lay down or Do you want some tylenol?
      I recently did a Google search for "Most Painful Condition Known to Man" I found two conditions reapeatedly given this title; Trigeminal Neuralgia and Cluster Headache. Amazingly I found that they had two things in common. One was called the suicide disease and the other was called the suicide headache. The second was because they both affect the trigeminal nerve(largest nerve in the head). I really think we arent going to get any real understanding or recognition for what this really is(a neurological disorder) until people stop associating it with the headache they got rid of with 2 Aleve last night. The word headache just doesn't seem to fit.
   Id welcome any feedback on how anyone here handles these types of situations.

   Sheepdog

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Skyhawk5

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Re: CH. They couldn't think of a better name?
Reply #1 - Nov 4^th, 2009 at 10:53pm

This is a very difficult thing for us that suffer CH. Even if you say it's a suicide headache, the computer in their brain says, 'you're still here' so it can't be that bad.

I and others have said, how can others imagine this pain when I can't myself? It is beyond the average persons concept of pain, including me.

After years of trying to make my family understand and thinking they did, only to find they didn't. I gave up.

The thing is, if it's really that bad we are either mental or we should die from it. That's what the average person thinks. Of course it's been found that we with CH are not average. In fact above. Strange but true.

Shoot me, Don

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« Last Edit: Nov 4^th, 2009 at 10:54pm by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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thebbz Ex Member	Re: CH. They couldn't think of a better name? Reply #2 - Nov 4^th, 2009 at 11:00pm Quote: The word headache just doesn't seem to fit. I surely agree with that. I have a dont ask dont tell policy with CH, they just wouldn't understand. the bb
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: CH. They couldn't think of a better name? Reply #3 - Nov 5^th, 2009 at 7:41am I just call mine "Ralph."
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

bejeeber

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Re: CH. They couldn't think of a better name?
Reply #4 - Nov 5^th, 2009 at 11:53am

"Headache". The H word. That was a very bad choice for a name, and I'm sure the name effects the way people perceive CH.

I know I cringe a little inside every time I have to call it that.

It's as if you had to describe your leg amputation sans anesthesia as a "pedicure". Cheesy

Who was it here that described CH as something like "Nuclear pinging behind the eye ball"? That works better for me.

"Ralph" ain't bad either. Wink

I also subscribe to bbz's don't ask don't tell policy, although that's not always so practical with family or employers or co-workers, hence the pesky conundrum.

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« Last Edit: Nov 5^th, 2009 at 9:10pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Martin CH.com Veteran Offline Ready for anything this world can dish! Posts: 101 Ottawa, Ontario Gender:	Re: CH. They couldn't think of a better name? Reply #5 - Nov 5^th, 2009 at 12:22pm I once told someone my brain tumour was acting up.... they took that pretty seriously. you all stated the very reasons why i dont tell people its a headache. ever.
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catlind

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Re: CH. They couldn't think of a better name?
Reply #6 - Nov 5^th, 2009 at 3:45pm

How about this, I have trigeminal autonomic cephalgia known as Clusters, they are a debilitating neurological condition that has led some sufferers to take their lives. Leave out the headache word altogether.

Just a thought. I once told Justin Ott that I believed a name should be devised for CH that invoked the same kind of sympathetic and cognitive connection to cancer. It's that fearful, it's that debilitating, and while the disease itself doesn't kill us, the resulting factors of suffering can and have killed too many. We are a group that chooses to stand up and spit in the eye of the beast, just as some cancer sufferers refuse to give up.

Just my opinion.

Cat

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A true friend is someone who reaches for your hand and touches your heart.

If yer gonna be stupid, ya gotta be tough

Who is John Galt?

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Solen

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Re: CH. They couldn't think of a better name?
Reply #7 - Nov 5^th, 2009 at 6:06pm

Actually the headache in my circles mainly causes the free thoughts of migraine. That makes me sick and mad as hell, but I act human and smile and I try not to bother.

I will never manage to convince anybody that it really hurts that much. It is just a failure we cannot avoid. I think this was the main cause I came here. That one in three people from the small group surrounding me that I told about my illness started talking about the family's migraine problems. And here people know that it is a demon. Ugh.

Maybe it should be just a Cluster. No headache names around.

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And, when I shall die,
Take him and cut him out in little stars,
And he will make the face of heaven so fine
That all the world will be in love with night
And pay no worship to the garish sun.

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FramCire

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must be humored a little

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Re: CH. They couldn't think of a better name?
Reply #8 - Nov 7^th, 2009 at 6:40pm

Honestly, I don't really want anyone to understand the pain I am in when I get hit. Maybe if I had to miss work I would try to explain it to my boss. The only person I need to have some understanding for my sanity and support is my wife and she has seen me get hit and that was all she needed. I honestly would rather call it cluster minor irritation than have people suffer with me.

Now, that is just me and I haven't needed to deal with an employer, gf/bf, or anyone else who really needed to know.

As for people who don't understand, I kinda now enjoy the remarks. Always fun to hear their remedies/cures.... gives me a giggle.

I'm sure glad I didn't name my kids Ralph...... I hate Ralph now!!

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: CH. They couldn't think of a better name? Reply #9 - Nov 7^th, 2009 at 8:17pm If you had named your kid Ralph, I would have picked something else.
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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: CH. They couldn't think of a better name? Reply #10 - Nov 8^th, 2009 at 8:11pm Brew wrote on Nov 7^th, 2009 at 8:17pm: If you had named your kid Ralph, I would have picked something else. Either that or the paddle would have "O2" on one side and "Trex" on the other!
Back to top	You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: CH. They couldn't think of a better name? Reply #11 - Nov 8^th, 2009 at 8:15pm
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

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