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Suicide Hotline


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Cluster headaches are called suicide headaches for a reason; every year we lose several sufferers who just can't take the pain anymore. I wonder if a telephone number or even several numbers, prominently displayed on the front page, available 24 hours a day to any CH'er contemplating suicide, would be a good idea. Regular suicide  hotlines, like those in the front of our telephone books, don't really address this very specific kind of pain. Is this a dumb idea or what?

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Glad you're still with us and found the website. [smiley=thumbsup.gif]  My moment a few years ago was with a 9. 

Hotline:  While I think it's a great idea even if it only saves one person with CH.., but have to say in my situation I don't think I would have called anyone even if they understood my situation.  Only because I wanted the pain to stop and a phone call certainly wasn't going to help end the pain. 

Now a positive note.  I definitely think if someone were to call a hotline they would be MUCH better off if the person on the other end had an understanding of CH and didn't try to treat the CH'er like he was doing it out of depression. 

2c  Jeff ;)

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I definitely think if someone were to call a hotline they would be MUCH better off if the person on the other end had an understanding of CH and didn't try to treat the CH'er like he was doing it out of depression
Very true, and I guess what we should work on are press kits, information kits, easy to understand, and we could supply any of such hotline with the kits, so they know... and while we're at it, why not a wide media information campaign to get (and keep) CH and CB in the medias... yea lots of work though
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I think setting up a CH suicide hotline would be too costly and time consuming to set up then run and manage.

But a good information campaign could cover both medias and existing suicide hotlines, plus a number of other services, hospitals... so these services could relate to the symptoms they recall seing in the folder they had received when they are confronted to a case of CH.

And nowadays, this can all be done virtually (so at a very low cost), so the main thing is gathering the basic info and formating it in an eye catching format, plus a press release, plus a few info sheets, plus links to our Web sites.

Plus every say... 3-4 times a year, we publish a press release with a few recent findings, present a case (human interest), send it directly to tons of medias, big and small... Medias are often (if not always) looking for stories. If they have something at hand while out of other news to fill the page or out of inspiration, they often will just copy-paste it there, especially some small medias like local weekly papers. So we can either release press releases or pre-written papers to be published or both... also it works with logos or small ads like Support CH, whathever, a link for the Web with a logo, and many small papers will publish this when they have a hole they have to fill last minute (and this happens often). Plus, a reporter or newsroom head could find it interesting and contact us to write a paper of their own.

The biggest part of the job would be gathering the media contacts (their email), but probably that can be bought for not too expensive, or through a news service.

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I guess the first part of the job would be for us to produce the communications material, press releases, information kits... You could maybe help gathering media contact infos.

You could say to whoever from the Newsroom (maybe start with a reporter) that we're thinking about setting up a communications strategy and eventually will need to send press releases and other material to medias around the world (well you could start with around USA I guess). They maybe could supply you with hopefully an extended list of email addresses from big and small medias, TV, Radio, Papers...

We could use your info to build our own list of media addresses, I could work on a Canadian list...

As for the material, I certainly could work on it, the first one should be a communication plan, or strategy... I've drafted such documents in the past, and implemented others' plans. I'm used to work in French so we'd need people to re-arrange my sometimes twisted English. I have some skills to do that (maybe not all, I'm mostly a reporter), but I'm supposed to be looking for a job right now, and if I jump in that project now, I would be doing mostly that, so maybe in a few weeks...

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I think this would be something OUCH should look at doing. We know there are people who kill themselves over this.

I think the head of OUCH should see if they could talk to some of the heads/owners of free hotlines. It wouldn't take much for them to get a memo out to the volunteers "If the person wants to commit suicide due to head pain get them in contact with ouch. If that's not an option send them to the ER" etc...

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I think this would be something OUCH should look at doing.

I must say when one gets to these boards and Web sites, the focus is not on understanding the hierarchy, who is who...

I must admit I still don't know exactly who is who and... the OUCH Web site wasn't much of a resource for me... Is it the same people members here and at OUCH?

Are the conventions referred to organized by OUCH? or by ClusterBusters?

Thinking about an eventual communications strategy, I have been pondering how about I would deal with both triptan and psilocybin advocation... and the invasive surgeries...

What do you say to a CH sufferer calling a suicide hotline when he says he's tried all possible meds in the world for the past 20 years and nothing works and...

sounds to me the only thing to say then is: have you heard of ClusterBusters?

Isn't ClusterBusters usually the last resort?

Personnaly, I can't see myself promoting verapamil or Imitrex... so I cannot see myself promoting any neuro either.

Hey the OUCH Web site doesn't even mention ClusterBusters, only the survey study done on psilo and LSD users.

I think I certainly have to get to know this community better, and maybe before working on anything relating to hotline or communications plans, a certain reflexion has to be done ... or maybe this was done before and I'm just not aware of what's going on

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Well here's the thing. The suicide hotline probably legally can't go around saying try Clusterbusters, as, it's illegal. I'm thinking OUCH because we're not trying just to reach the people who've had CH for 20 years. We're trying to reach EVERYONE suicidal with it, and trust me... I was pretty damned suicidal at the start!

Also, how do they know if the person is a schizophrenic, if they actually have cluster headaches, and not an aneurysm, etc? There are lots of things that cause cluster-LIKE headaches and you NEED a diagnosis before we can really suggest busting. There is a LOT to think about before suggesting busting to just any person who logs on.

I'm all for advocating our cause, but not at the cost of making us liable for someone's death because they were too gung ho about it to get real treatment. If they're someone who has tried everything, the people over at the regular CH.com board will send 'em over here. And they're involved in OUCH. Pretty sure there are several members over here involved with OUCH.

I'm also betting that a LOT of people go un-diagnosed and kill themselves because of that. They don't know what they have, except it's driving them nuts. This might just be a wild guess on my part, but had I not found out what CH was, I wouldn't be here.

Just knowing what the hell you're fighting gives you a bit of strength... You know you have something medical, and there are treatments for it. I learned very quickly about busting, but chose to save it. If you're already diagnosed and learn there's a few more options well... that may save your life too. I've also seen plenty of busters, and non-busters suggest people come check out our message board.

I think it should be a joint effort, precisely because people from both OUCH and CB could create a post / page about what people need to do when it's been suggested by one of these hotlines to check them out.

Already been through a lifetime of treatments, or just tired of it? Proceed to cluster busters.

New person, undiagnosed, going through the indo test, or just got your diagnosis? A page outlining all of your options. Including CB.

I'm someone who HAS had the radio frequency ablation surgery. Never again. It did horrible shit to me. But I feel like everyone should get to examine all of their options before deciding what path to go down... and that includes Busting.

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Pixie, lots of wisdom in what you say.

I hadn't thought about the fact a hotline cannot lead people to us as we deal with illegal stuff  :-? 8-) I forgot ::).

... it makes sense the way you say it, but I'm for a communication strategy to get busting in the medias anyways. In order to make people change their perception of psilocybin, LSA and LSD, little by little. See how many people found relief coming here after seeing the National Geographic mushroom episode...

Think that's pretty much what I had in mind... demystify psilocybin and LSA LSD.

I need to think about it.

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Rest assured that this subject is near and dear to the Clusterbuster Board.

As stated, there are problems with a hotline but there is much to be done.

We are meeting with additional agencies in DC next weekend and this subject will be an important one.

Much more on this later but the first thing some of you can do to help us out is to help with what is being asked for in the thread "Help us out in DC and in the future" which I will be posting as soon as I get done posting THIS one ;-)


Thanks for a great thread

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Didnt mean to be a thread killer.

As far as a hotline, it isnt something that CB will be doing. There are lots of reasons why and some have been mentioned here.

That is not to say we arent very interested in going about suicide prevention on orther ways.

One example would be training the existing hotlines on cluster headaches. Then, just as cluster orgs refer people to preferred provider doctors, we can refer people to hotlines that KNOW what they are dealing with.

These are things that we are working on and will be talking with agencies regarding these issues, in DC next weekend. This trip is not only about cluster advocacy but also our goals regarding education.


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Uhhh... I'm sorry, I have no idea what is the Washington meeting next week end. I didn't pay any attention to this since I joined (I'm not American, that's mainly why).

I can't see myself advocating anything other than busting, now. It's illegal, so...

Well I still think a communications strategy would be good to have the busting method and agents (psilo, seeds, LSD...) demystified in the general public.

I cannot see how busting could be linked in any way with suicide hotline, at least directly... It's not important

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I'm still up for spreading info and helping everyone understand better.

The importance and vakue of education and advocacy is getting help to people before they feel the need to pick up a phone, and to help people that never decide to pick up a phone.

There is a lot of work to be done.


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