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If the following link doesn't explain why we need to push for more effective treatments, nothing will.

I spoke with Will several times. I wish he'd called me Sunday.

I dislike so much about the new direction and focus of conventional medicine being surgery. They tell the patient that "this is your last option, we have nothing else."

When that doesn't work, what is a 24 year old kid to think? That he can wait until he's in his 50s and maybe grow out of them?

What the medical community had to offer was an occipital nerve stimulator and high doses of oxycontin. As you all know, that regimen doesn't lend itself to being able to try our methods successfully.

will took his own life on Sunday. The rest of the details I'll leave out with due respect to the family.

http://www.legacy.com/obituaries/houstonchronicle/obituary.aspx?n=will-erwin&pid=142883042

:(

Bob

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I dislike so much about the new direction and focus of conventional medicine being surgery.

What the medical community had to offer was an occipital nerve stimulator

Bob

This is so, so sad Bob.

24, what a waste :'( but what more can we do.

You yourself no how long, & hard we fought at OUCH(UK) to get this type of medication pushed to the forefront.

To give new sufferers a choice.

Look at the OUCH(UK) forums today. There is not one mention of Alternatives, & those of us who dared to stand up to the Trustees there were banned.

I cannot believe the amount of sufferers who are actively seeking ONSI, before being told about Alt's. It's criminal.

OUCH(UK) has become a breeding ground for ONSI Lab Rats.

I'm sorry for turning such a sad thread into a CArl rant, but what a waste. What a waste of a young life.

How many more will it take before our treatment is offered as an Alternative to surgery. How many more.

My sincerest condolence's to Will's family.

CArl...

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This is so sad :'(

My prayers are with Will's family and friends and all those who suffer this horrible disease.

This pushed me to make the reservations to Portland.  I hope to see you all there.  United we Stand.

Lee Ann

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I cried too, Christy. I'm sure we're not the only ones. We've GOT to at least try to do something to assure that that doesn't happen again. Damn!

Btw, Christy: I'm on your "ignore list." I can't reply to your last PM.

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i never got involved with OUCH much but i can't they don't present clusterbusting as an option. seems to be allot of turmoil among its existing members and quite a few really pissed off exmembers.

our primary purpose for these groups is to help each other cope with this right? so we don't have to rely solely a doctor to give us our information.

i really don't know what to say about will. every once in a while you'll see some desperate person posting on the boards. best you can do is send them your phone #. sometimes they call sometimes they don't.

theres allot of things i could say but i'll leave it at that.

what happened to will was horrific.  :'(

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i never got involved with OUCH much but i can't they don't present clusterbusting as an option.

From their website:  "Mushrooms (psilocybin)

This treatment, although very controversial and illegal in most areas, has been the singularly most effective treatment we have found to date.  To read more about it, go here:  http://www.clusterbusters.com"

http://www.ouch-us.org/chgeneral/nonmed.htm

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Hi

My condolances.

This is so so sad.

This gets me so angry!! Sad and frustrated!!!

Sitting in a internet kafee crying.

Makes me think, what can we do? How much does it take, to make the industri understand? Why, and how can they NOT understand? What is the problem? Is|nt this intelligent people with a intelligence, that make them able to understand this? And that every medicine is a "drug"?

Where in the process does it stop?

What is there to do about this? It|s not allowed, it|s a crime to the one who suffer, and their families.

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My condolances aswell.

It is so saddening and depressing to hear of such tragedy, I must say it did impact my mood greately and gave me some thoughts I did not wish to ever have :(

Was he resistant to all meds? And busting didnt work for him? I am scared to be frank, right now, sorry for being such a wuss...

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It is such an outrage! Doctors will give you all the hope in the world, then as quick as they give it they take it away. Of course, I don't know all the details but, when you've had enough of all the bullshit and some bullshitter tells you that there's nothing else they can do and you think these people are the only hope of making it stop, THIS HAPPENS!! I'll keep this family in my prayers. I think this should be a HUGE reason for us all to keep fighting the good fight. Will is no less of a man for his decision. He let's us know we need to fight harder to educate and reach out. My love goes to everybody on this site. Keep on keeping on.

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To be fair, like all of us, I had also suicice thoughts, just I would rather go rob bank and make policeman shoot me than take my own life myself, I am in pain atm... sorry I speak bullshit, but in pain...

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A terrible thing - we feel his pain and that of the family and I know our fearless leader suffers mightily when this occurs. 

  There but for the Grace of God...

I will now try LSA after giving up on conventional meds. 

Sandi

   P.S.  they don't stop at age 50...  :(

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  • 2 weeks later...

They don't stop at 50...I'm 56 and 9 days into my first CH. Araid to go to sleep again tonight. I spent the whole day on the web watching depressing videos and realizing my life will never be the same and for the first time thought why bother. Will, I'm sorry for your family but you are at peace. I can't see living like this either but will try unconventional treatments as soon as I can get my hands on them.  :-[

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They don't stop at 50...I'm 56 and 9 days into my first CH. Araid to go to sleep again tonight. I spent the whole day on the web watching depressing videos and realizing my life will never be the same and for the first time thought why bother. Will, I'm sorry for your family but you are at peace. I can't see living like this either but will try unconventional treatments as soon as I can get my hands on them.  :-[

Jay, did ya ever get any oxygen to huff? That shit works my brother.

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