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Message started by Shawn on Jun 8th, 2009 at 12:28pm

Title: Sad news
Post by Shawn on Jun 8th, 2009 at 12:28pm
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Title: Re: Sad news
Post by Lefty on Jun 8th, 2009 at 12:32pm
So sad....!

It just reinforces how important this site is to all of us. :)


lefty..

Title: Re: Sad news
Post by DennisM1045 on Jun 8th, 2009 at 12:46pm
R.I.P. Trevor.  I'm sorry we never got the chance to know you or help you. :'(

-Dennis-

Title: Re: Sad news
Post by Jimi on Jun 8th, 2009 at 1:21pm
:'(

Title: Re: Sad news
Post by Mosaicwench on Jun 8th, 2009 at 2:20pm
That just breaks my heart.

Title: Re: Sad news
Post by Melissa on Jun 8th, 2009 at 2:31pm
I feel for the wife he left behind. :(

The only thing that bothers me about this, is the mention of the "suicidal ideations" as a rare possibility due to the Topomax he was taking.  Like whoever wrote the article inserted a small subliminal suggestion that it was due to the meds which caused him to do what he did.

Sorry, it just bothers me. :-/

Title: Re: Sad news
Post by Linda_Howell on Jun 8th, 2009 at 2:33pm

 If only he had typed 'cluster headaches' in a search engine.  He'd have found us here or at OUCH.  This is a good example of why we need to get the word out that there is help.  Not just for Physicians, Ins. Co's. and Pharmaceutical co.s but to the general public.

No one has to become so desperate that their only recourse is to take their life.   :'(

Title: Re: Sad news
Post by just-squiggles on Jun 8th, 2009 at 3:00pm
"If only he had typed 'cluster headaches' in a search engine. "
That's how I found this place,excepet I typed 'suicide+headaches' Because I wanted to leave some explination why I did what I was about to do.

"No one has to become so desperate that their only recourse is to take their life"
I would like to add that it doesn't matter weather it is
med related,pain related or depresion on it's own .please read the 'crissis link' thread at the top of the page.And then reach out!!!! MOST of us have had to deal with one type or more.To quote the first post I ever read here "Suicide doesn't stop the pain,it just keeps us from dancin".

Title: Re: Sad news
Post by midwestbeth on Jun 8th, 2009 at 3:00pm
:'(

Condolences to his family.  

Title: Re: Sad news
Post by LeLimey on Jun 8th, 2009 at 3:10pm
I don't like the inferrence it was Topiramate either - that's not helpful to anyone BUT - I do have to say the only time I've ever considered it was on that med myself.

God rest his soul. He's out of pain now.

Title: Re: Sad news
Post by Melissa on Jun 8th, 2009 at 3:17pm
I just hope that those who are still here, keep aware of how you feel when you're on all these RX medications.

I don't want to see one more leave us!!

:'(

Title: Re: Sad news
Post by The Mad Viking on Jun 8th, 2009 at 3:39pm
:'(

Title: Re: Sad news
Post by Charlie on Jun 8th, 2009 at 4:44pm
It never seems to end. What a horror story.  :'(

Charlie


Title: Re: Sad news
Post by BMoneeTheMoneeMan on Jun 8th, 2009 at 5:01pm

Linda_Howell wrote on Jun 8th, 2009 at 2:33pm:
 
No one has to become so desperate that their only recourse is to take their life.  


I like that quote, Doll.  

:'(

Title: Re: Sad news
Post by Callico on Jun 8th, 2009 at 6:09pm
The ignorance displayed by the writer that, "a football injury and a car crash" caused them to return "with a vengance" is not helpful either.  I guess we should expect no better, but a little diligence on the writer's part would have been good.

Linda, you are so correct that no one should have to come to that point, but the fact is that many, if not most of us have made that consideration at one point or another.  This story reinforces once again the need for us to get the word out.  THere but for the grace of God and DJ am I.

Jerry

Title: Re: Sad news
Post by Slammy on Jun 8th, 2009 at 6:31pm
I don't know why they keep prescribing topomax!


Slammy 8-)

Title: Re: Sad news
Post by cavalier on Jun 8th, 2009 at 6:59pm
Tir'd with all these, for restful death I cry,

Tir'd with all these, from these would I be gone,
Save that, to die, I leave my love alone.



Title: Re: Sad news
Post by Shawn on Jun 8th, 2009 at 7:14pm

Callico wrote on Jun 8th, 2009 at 6:09pm:
The ignorance displayed by the writer that, "a football injury and a car crash" caused them to return "with a vengance" is not helpful either.  I guess we should expect no better, but a little diligence on the writer's part would have been good.

Linda, you are so correct that no one should have to come to that point, but the fact is that many, if not most of us have made that consideration at one point or another.  This story reinforces once again the need for us to get the word out.  THere but for the grace of God and DJ am I.

Jerry



I hear ya Jerry, but I suppose it's possible that the reporter was told that by the family or friends.  I could see how an injury, which likely resulted in the dispensing of pain pills which are known to be a trigger for many, could cause a return of a cycle.

-Shawn

Title: Re: Sad news
Post by barry_sword on Jun 8th, 2009 at 8:05pm
How terribly sad :'( RIP Trevor. Sorry it came to this for you.

Title: Re: Sad news
Post by HappyElaine on Jun 8th, 2009 at 10:47pm
:'( so so sad for everyone ! Him and his family to feel that that is the only way out and I have felt it don't feel good.
When you feel like that reach out Please.

Title: Re: Sad news
Post by E-Double on Jun 8th, 2009 at 11:06pm
I get it but I just dont get it...know what i mean

Title: Re: Sad news
Post by Lenny on Jun 8th, 2009 at 11:34pm
very,very sad :'( :'( :'( :'( :'(.....Lenny

Title: Re: Sad news
Post by FrankF on Jun 8th, 2009 at 11:45pm
It is sad. Maybe if he got help that worked, he might still be around.

The article sucks too:

Quote:
Mr Payne had been taking Topamax migraine relief ‘sprinkle capsules’ in the days leading up to his death.

Manufacturers Janssen-Cilag Ltd acknowledge in the leaflet accompanying the tablets that, in rare cases, patients can experience ‘suicidal ideations’.


It alludes to the possibility that Topamax could be responsible. I think it more likely the Topamax wasn't helping, not that it was a possible cause.

Title: Re: Sad news
Post by B14CK5H33P on Jun 9th, 2009 at 4:12am
At least the article dosn't just come out and say 'cause of the Topamax' but does refer to CH as suicide headaches several times. Just think of how many people have cluster headaches, but don't have the internet. As backward as this newspaper article reads, I wonder if Trevor even got on a computer. In any case, it is very sad news.

I got lucky when a friend found this site 10 years ago, almost a year after I went chronic and was confused as to why they weren't going away. Since 1987 I had always had episodes, with the longest being about 9 months - which wiped me out the first time. But when they started in '98 and didn't stop, I got really scared.
Had I not found this site when I did, I might've offed myself within a few more months after losing everything including my dignity.

R.I.P. Trevor

Title: Re: Sad news
Post by BarbaraD on Jun 9th, 2009 at 6:19am

Slammy wrote on Jun 8th, 2009 at 6:31pm:
I don't know why they keep prescribing topomax!


Slammy 8-)

Because for some of us it works...

Title: Re: Sad news
Post by Grandma_Sweet_Boy on Jun 9th, 2009 at 7:15am
How very sad that this poor soul didn't find help.  Condolences to his family and friends.

Carol

Title: Re: Sad news
Post by black on Jun 9th, 2009 at 7:19am
R.I.P.


Quote:
Manufacturers Janssen-Cilag Ltd acknowledge in the leaflet accompanying the tablets that, in rare cases, patients can experience ‘suicidal ideations’.


Don't know if ch or the med lead the poor man..But DAMN!
this isn't side effect!IT 'S AN EFFECT!!!!!

R.I.P. :'(

Title: Re: Sad news
Post by deltadarlin on Jun 9th, 2009 at 8:15am
"Mr Bedford took this into account and recorded the verdict: “Trevor took his own life while suffering from and receiving treatment for cluster headaches.”

This statement is what really bothers me.  This article is bad journalism at the very least.  There are a lot of questions that are not answered.  There is a comment section on that article, folks.  Post your response!

Title: Re: Sad news
Post by LeLimey on Jun 9th, 2009 at 8:42am
If posting comments please be respectful, bear his family in mind.
They've suffered enough.

Title: Re: Sad news
Post by Jackie on Jun 9th, 2009 at 1:04pm
That is pitiful... :'(

Wish he would have found this family....things might have turned out much differently.

Title: Re: Sad news
Post by slhaas on Jun 9th, 2009 at 4:45pm


This just shouldn't be happening anymore.  We've gotten too far with treatment and at least abortive therapy.  I feel so very much for his family and their second guessings of what could have been done.  

Title: Re: Sad news
Post by Chappy on Jun 10th, 2009 at 6:23pm
I found this site within 24 hours of being diagnosed (only 8 years after they started).  I think anyone searching for "cluster headaches" will end up here and quickly find that this is the source for CH info.

When my wife read about the nickname "suicide headaches," she sat me down and said, "However bad things get, I want you to remember that I cannot do this without you, and that your kids cannot grow up without you.  No matter how you feel, that will always be true."

Since then, I've often felt not only worthless, but that I was a burden and my family would be better off without me.  It was her words that brought me back to sanity whenever my mind would wander down that path.  So to all of you supporters out there: If you ever worry about this, just remember that affirming words can make the difference.

As for treatments, those that worked all failed for me after days or weeks, except for triptans.  But with 9-16 hrs/day in pain imitrex and zomig aren't much help, and demand-valve O2 only worked while I was sucking on it.  Once my medical bills reached $40k I couldn't afford to go back to a neuro for the "next" pill to try.

Luckily, I lost all remnants of pride through the first year of daily back-to-back attacks, and was willing to try busting.  That has brought me at least back to the land of the living, though I'm still hoping for more.

Title: Re: Sad news
Post by Linda_Howell on Jun 10th, 2009 at 7:42pm
The question has always risen..."what about those who do not have computers"

That is why in getting the word out to the general public, someone w/o a computer could always go to a library, or a friends house.   They won't know we're here to help unless Cluster headaches are as well known as Migraines.

Title: Re: Sad news
Post by Iddy on Jun 10th, 2009 at 8:17pm
Chappy, don't lose that hope.

There are those that need you.

All of us.

Title: Re: Sad news
Post by Brew on Jun 10th, 2009 at 10:58pm

Quote:
No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.

--John Donne


This guy wasn't just whistlin' Dixie.

Title: Re: Sad news
Post by [joHnny]w_ an_h on Jun 11th, 2009 at 1:21am

Linda_Howell wrote on Jun 10th, 2009 at 7:42pm:
The question has always risen..."what about those who do not have computers"

That is why in getting the word out to the general public, someone w/o a computer could always go to a library, or a friends house.   They won't know we're here to help unless Cluster headaches are as well known as Migraines.


that was my thought. many of my friends seldom get on the computer. i will say this. ive been pretty close to that edge before i had anybody that could identify with scaring the hell out of co-workers and losing a job. anybody remember what is was like before we all had each other let alone before we knew what a cluster headache was?

Title: Re: Sad news
Post by Callico on Jun 11th, 2009 at 5:18pm
Johnny, I remember very well!  I was in the same place as Chappy, but was losing ground quickly.  That is why I included this in a previous post:  
Callico wrote on Jun 8th, 2009 at 6:09pm:
injury  THere but for the grace of God and DJ am I.

Jerry


I am not equating them, but God definitely use DJ in my life.  We've got to keep getting the word out there.

Jerry

Title: Re: Sad news
Post by monty on Jun 11th, 2009 at 5:56pm
Whether topomax increases the risk of suicide is an open question that is being debated ... I think mentioning it is valid.  There is some evidence to suggest it does (in a small subset of people), although the evidence is not iron clad.  Even drugs to treat depression can have such a paradoxical reaction in a few cases.  And topomax does not generally have positive effects on mood, although if it gives relief from clusters and merely makes one a bit grumbly (or forgetful), that is a good trade off.


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