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Title: Another thing..... Post by DonnaHar on Oct 8th, 2006, 11:21am Another thing.....What about a memorial page in memory of our fallen sufferers? Not for us to dwell over, but for non-sufferers to appreciate the seriousness of the cluster head pain, and show the world just how many of our fellow sufferers have chosen this avenue. If the number was to be known by the outside world, especially all M.D.'s, perhaps they would realize that cluster headaches (wrong name) are life threatening and treat them as such. |
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Title: Re: Another thing..... Post by Yorky on Oct 8th, 2006, 12:09pm Another thing.....What about a memorial page in memory of our fallen sufferers? lee's page just pray no one else gets added :'( |
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Title: Re: Another thing..... Post by chewy on Oct 8th, 2006, 1:17pm Hey Deej. Thats not a bad idea. |
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Title: Re: Another thing..... Post by Jonny on Oct 8th, 2006, 1:25pm on 10/08/06 at 11:21:00, DonnaHar wrote:
Just how many have?. |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 1:29pm on 10/08/06 at 13:25:52, Jonny wrote:
I guess we'll never know until we start keeping track, huh? |
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Title: Re: Another thing..... Post by sandie99 on Oct 8th, 2006, 1:31pm I think that it's a wonderful idea! :) I was wondering myself that how many brothers and sisters we have already lost... I have heard that Lee is not the first, but I can't name names. I sure wish, hope and pray that there won't be too many names to add to the list, though. :'( Best wishes, Sanna |
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Title: Re: Another thing..... Post by Jonny on Oct 8th, 2006, 1:37pm on 10/08/06 at 13:29:07, Melissa wrote:
I guess we will never know about Lee either, can you imagine pulling the trigger after a good day? How do we determine who died because of CH, or is this page just going to be of those friends that died for any reason?......People die everyday, but this thread links all to CH....Is that right? |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 1:41pm Jonny, we obviously can't determine just WHAT caused them to pull the trigger, but it just might be that CH sufferers have a higher rate of sucide than the norm. They were coined "sucicide headaches" for a reason. No one dies from CH, but having it, you would think, elevates the possibility. I almost drowned myself the day before I found this website. It wouldn't of been hard to become another statistic. And yes, the clusters would have been the cause. As for an "In Memoriam" page, it wouldn't be hard to list either "Nautral" or "Suicide" as cause of death next to the name...or username even. BTW, that night in the bathtub, I had had a great day earlier, but after I was woken with an attack that escalated quick to a kip 10 (to which I can only count twice that I've had 10's), all I wanted to do was end the pain. :( |
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Title: Re: Another thing..... Post by Jonny on Oct 8th, 2006, 1:48pm on 10/08/06 at 13:41:15, Melissa wrote:
Where do we list Cazman and athos? I dont think we have to list how any of them died, but thats just me. More have died in their sleep than anything else.....why list it? |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 1:52pm on 10/08/06 at 13:48:32, Jonny wrote:
"Other" comes to mind. Why list it? Maybe in honor of our friends that are now gone? |
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Title: Re: Another thing..... Post by Redd715 on Oct 8th, 2006, 1:54pm I can't remember which of the doctors said it, but didn't a coworker of theirs commit suicide over clusters? (at the convention during one of the speaches?) |
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Title: Re: Another thing..... Post by DonnaHar on Oct 8th, 2006, 1:54pm I guess there's no way to really know, is there? It's just that this is about the 5th person that I know of within our group who has, and that seems kind of high to me. I remember thinking back to about the time of that girl whose twin sister took this route, that there were three or so back then...about the year 2001? I go back and forth with this.....it is called a suicide headache for a reason, but we don't really know if that is why they took this action when they did. You've made a good point, Jonny. |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 1:55pm I know what you're getting at Jonny, but unless someone wants to write down the cause of death behind the scenes, we'll never really know just how much of a cause clusters are for suicides. :-/ |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 1:58pm Pegg, it was Brian Y. He was on the boards here, that's all I know. |
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Title: Re: Another thing..... Post by The mad viking on Oct 8th, 2006, 1:58pm Melissa dear Have to admit that i have 1 leg in both camp "yess & no"here We have to step REALLY careful forward on this subject Who and how will a page like this be administrated? What about those left behind? Svenn |
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Title: Re: Another thing..... Post by Jonny on Oct 8th, 2006, 2:00pm All im saying is that we dont need a suicide page....."Welcome newbie, be sure to click on the suicide page" A page to remember family that has past on is a great idea!!! |
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Title: Re: Another thing..... Post by chewy on Oct 8th, 2006, 2:00pm Quote:
Thats the answer. Just a "Nice to have known you" type page. Doesn't need to attribute someones death to anything. |
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Title: Re: Another thing..... Post by maffumatt on Oct 8th, 2006, 2:04pm I don't think posting a list of those of us who take their lives is a good idea. It would be a reminder of just how easy it would be to take the easy way out. I can just see some desperate suffer at home getting hit hard or dreading that next 10, looking at a list of those that decided to end it permanently, thinking "if they could do it, so could I." Just my thought on it. |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 2:09pm Look everyone, a memoriam page would be awesome, I've PM'd Deej about it a few times in the past, but haven't heard anything back. The cause of death doesn't have to be listed, that was the last thing on my mind, but I understood what Donna was trying to say, to get the numbers of those who have gone by way of suicide. I guess that here at home, I'll start keeping the names of those who have chosen this option. I pray to God that I don't need to write down more names from this day forward. :(mel |
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Title: Re: Another thing..... Post by Redd715 on Oct 8th, 2006, 2:10pm on 10/08/06 at 13:58:00, Melissa wrote:
Thank you for clearing up my brain fart. |
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Title: Re: Another thing..... Post by The mad viking on Oct 8th, 2006, 2:14pm I think there are issues here that we should think both 3 and 4 times before we do anything.We cant rush this Just my 2 cent worth Svenn |
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Title: Re: Another thing..... Post by chewy on Oct 8th, 2006, 2:15pm Quote:
There is no way you could definitively determine that someone's suicide was triggered by CH and CH only once a person is gone. |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 2:19pm on 10/08/06 at 14:15:06, chewy wrote:
I know that. This is just a gathering of data. I hope ya'll can understand that obviously, NO ONE can determine the exact cause of a suicide unless they tell someone just before they commit it, or leave a note as to the reason. I'm not trying to prove anything here. Look, if everyone has a problem with me keeping a list, then I'll forget about it. :-/ |
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Title: Re: Another thing..... Post by chewy on Oct 8th, 2006, 2:22pm Keeping a list of sufferers AND SUPPORTERS we have lost and memorializing their life in some way is a great idea. Memorialize their life, not their death. |
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Title: Re: Another thing..... Post by sandie99 on Oct 8th, 2006, 2:27pm I understand both sides, but to be honest, if I had decided to kill myself, it would be because the pain inside my head had become too emormous to bare - not because I had read a "in memoriam" site. Most of us are aware that there's always that ultimate way out, some of us have considered it, luckily only few have tried... Every year there's in memorian section at the Academy Awards - it's there to celebrate those peoples' life and work, not their death. if we want someone to take ch seriously, it would be fair that we will not - as a ch community - forget that there are clusterheads who have taken their own lives. I understand very well that there are their families to consider (I for one would like others to mention what it was my illness which caused myself to end it). I bet that many of us have dealed with hits,which take us so down and desperate that death seems the only option... in my book, if a clusterhead took his/her own life while in cycle/chronic, I would not have too many thought why. Those who wonder... I was close to killing myself in spring 2004. Sanna |
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Title: Re: Another thing..... Post by wildhaus on Oct 8th, 2006, 2:44pm A page listing names…. a noble idea But if we would like to do something to honour the ones taken the way they took….. Why don’t we set up an intervention system, where we could try and prevent it from ever happening again! If we can help, and only one of us from taking this venue we like saved the world And commemorate and honour them by setting up something constructive “AND IN THERE DEATH THEY COMMENDED US TO LIFE” (I do not know just yet how to do it….. it just came to me this afternoon… I have to let it “mature” in my head…. and come with a constructive plan, I am commited….) Michael |
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Title: Re: Another thing..... Post by maffumatt on Oct 8th, 2006, 2:48pm this board is my intervention system. |
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Title: Re: Another thing..... Post by wildhaus on Oct 8th, 2006, 2:52pm on 10/08/06 at 14:48:07, maffumatt wrote:
for me as well!!!!!! |
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Title: Re: Another thing..... Post by Jackie on Oct 8th, 2006, 2:53pm on 10/08/06 at 14:48:07, maffumatt wrote:
Well said, Matt......You are exactly correct. It is for many. Love to you all... Jackie |
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Title: Re: Another thing..... Post by purpleydog on Oct 8th, 2006, 3:02pm I think it's a great idea to have a memorial page to members of this site who have died. Anyone can be added to it, along with any comments, or tributes anyone may want to add. It wouldn't matter how they died. They would be remembered. If they die of suicide, then we will all speculate, and when the death is announced, such as Lee, that's when it will be known. But after it's announced, is when a post to the fact of their death could be made on the memorial page. It is true, we will never know the reason, or maybe even the real truth. But to remember them would be a good thing. |
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Title: Re: Another thing..... Post by maffumatt on Oct 8th, 2006, 3:09pm a memorial page is one thing and I support it, but a martyrdom page is another story. |
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Title: Re: Another thing..... Post by Jonny on Oct 8th, 2006, 3:18pm on 10/08/06 at 15:09:18, maffumatt wrote:
BINGO!!!!!!!! |
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Title: Re: Another thing..... Post by Melissa on Oct 8th, 2006, 3:31pm How did this thread get to be about Martydom?? I'm all for a memorial page, and forget about me keeping track of anything. I think it'd just depress me more than I already am. I'm out of this thread. |
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Title: Re: Another thing..... Post by maffumatt on Oct 8th, 2006, 3:50pm on 10/08/06 at 15:31:19, Melissa wrote:
on 10/08/06 at 11:21:00, DonnaHar wrote:
Didn't mean to upset anyone. Sorry. |
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Title: Re: Another thing..... Post by DonnaHar on Oct 8th, 2006, 4:16pm Edited due to post being an emotional, non-constructive response. |
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Title: Re: Another thing..... Post by JenniferD on Oct 8th, 2006, 4:17pm You didn't, so don't sweat it Matt. I think we're all just a little raw right now. edit: removed so noone gets upset |
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Title: Re: Another thing..... Post by Jonny on Oct 8th, 2006, 4:30pm on 10/08/06 at 16:17:41, JenniferD wrote:
No, how do you know he lost the battle to the beast? How?.......please dont lump in all problems with CH.....Christ!!! |
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Title: Re: Another thing..... Post by JenniferD on Oct 8th, 2006, 4:37pm I didn't Jonny. Please don't misunderstand. I was thinking broad and generally, not specifically to this situation. I didn't mean to lump all situations together either. I just thought a general tribute might also bring some awareness. |
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Title: Re: Another thing..... Post by Carl_D on Oct 8th, 2006, 4:39pm I think a simple memorial to those who have gone on (both sufferers and supporters) and to honor them is a great idea. However, I don't think we need to list the cause of death. I would much rather remember how these people lived, instead of reminded how they died. [smiley=twocents.gif] |
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Title: Re: Another thing..... Post by TxBasslady on Oct 8th, 2006, 4:47pm Not meaning to get too involved on this subject...or upset anyone. Fact is....without viewing a death certificate, we have no idea when CH is/is not a factor, in someone's passing. Only the certificates that state Clusterheadaches as a cause of death, could/should be stated as such. Let's realize that many have other problems other than CH. To link any passing from this family to CH, should be based on fact..and not assumption. The idea of a memorial page is a very good one. Consideration as to how it's done, should be well thought out. This is JMHO. Respectfully, Jean |
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Title: Re: Another thing..... Post by no-one on Oct 8th, 2006, 4:48pm How about In loving Memory of our Famlly and Friends with the OUCH logo That says it all IMHO PF wishes to all b |
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Title: Re: Another thing..... Post by Jimi on Oct 8th, 2006, 4:52pm Slow down folks. Let's not personalize this debate. It appears those that have posted, feel strongly that we need to have a type of recognition of those ch sufferer's that have past on. I view the discussions as brainstorming on the best way to go about this. This is a day of thin skins and high emotions due to this tragedy. But we WILL make this a positive thing and come together on the best way to start this page. Because we all want the same thing. A memorium to our fallen hero's and friends. Cause of death need not be included is my opinion. |
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Title: Re: Another thing..... Post by JenniferD on Oct 8th, 2006, 5:03pm I apologize if I offended as well, it certainly wasn't my intention. There is no need to take anything said personally and I don't. There is a good and decent way to memorialize our friends and family, and we will find the right way. Love to all, Jen |
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Title: Re: Another thing..... Post by brewcrew on Oct 8th, 2006, 5:06pm on 10/08/06 at 16:52:21, Jimi wrote:
Jimi, I agree with all of this 100%. Therefore I won't restate what you've so eloquently stated. Except this: Listing the cause of death goes beyond tacky - in many cases in will be hurtful. That's not what any of us want. |
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Title: Re: Another thing..... Post by andrewjb on Oct 8th, 2006, 5:29pm on 10/08/06 at 14:00:51, chewy wrote:
would surley bring loads of art/poetry, and some strong sentiment. andrew. modified to add. " a lovely idea " . |
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Title: Re: Another thing..... Post by LadyElaine1 on Oct 8th, 2006, 5:51pm I agree with Jimi! Well said Jimi. |
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Title: Re: Another thing..... Post by chewy on Oct 8th, 2006, 5:55pm Quote:
A picture if there is one, a thank you for being our friend, and dates. Thats really all that needs to be said. |
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Title: Re: Another thing..... Post by BB on Oct 8th, 2006, 9:23pm Hello all May I venture my opinion as a doctor and a supporter please? Firstly as a doctor I knew that this is a very serious condition and I was well aware of the term suicide headache and what it meant. I didnt know all the aspects of it until I married a clusterhead and got myself educated quick smart though. But then many other conditions also are at risk of suicide. Although this is the only head pain that is bad enough to make people think of suicide, the actual rate is lower when compared with say cancer or depression. Highlighting the suicide part to an average doctor and one may get the wrong approach, in the sense that the doctor may focus on it and overtreat with antidepressants and narcotics. When facing with a potentially suicidal patient the doctor is forced to look first at crisis intervention rather than managing the condition. It would be more beneficial to most CH to educate the doctors that this is a MANAGEABLE condition and what are the RIGHT treatments for it, ie oxygen, verapamil, lithium, imitrex etc., more than stressing to the doctors and to the world that CH is a mental illness. Although I would say all CH sufferers have thought about this as the only way out while in severe pain, most stops thinking about it when they are painfree. To actually act on it is another big step. A persons psyche must cross over a barrier to get to this point, into the realm of mental instability which is NOT part of normal CH. A CHer who is adequately treated with the right medications, who is surrounded by love and support, who has enough strength to deal with other lifes issues ... does not seriously think of death as the only way out, much less likely to actually carry out this thought. The human psyche and body can cope with a lot of pain. Its when too many other problems piling on top that the person becomes overwhelmed. I dont know the statistics of how many CH related deaths actually occured while the person took a hit. Its more likely to happen while they are not hit. When the depression associated with CH sinks in deep and engulfs the person thats when real suicide plan tends to get carried out. Secondly as a supporter, I NEED to know that the risk of suicide is there but CAN be avoided, that it does NOT have to be the only answer. It would be totally unbearable for a supporter to continually fear that your loved one is going to kill him/herself! When first comming here, I was scared to see how much pain and how difficult it is to cope with cluster. It was the support I received from people here and the positive threads where people say that they feel better, that the cycle has stopped, that they have a normal life, that it can be lived with ... that got us going. Imagine getting on the board and find out how many it has killed! That may make already vulnerable people more likely to give up! I believe that if any tragedy occurs, and I pray to God no more, then we would have a dedicated thread where people can express their feelings but as time passes and the wound heals, life goes on and the thread can drop out of sight. One can always do a search if one wants to know. Personally I feel that a locked or pinned thread dedicated to people who have taken the desperate way out, although shows our compassion, does not reflect the purpose of the Board, which is to FIGHT AND TO SURVIVE CH AND STILL LIVE LIFE TO THE FULLEST. JMHO. I hope I wont upset anyone, its purely my personal view. Take care all and painfree wishes to all of us. Hugs and lots of love. Annette |
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Title: Re: Another thing..... Post by chewy on Oct 8th, 2006, 10:15pm Thank you Annette. One of the most informed and insightful posts I have seen on this site. |
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Title: Re: Another thing..... Post by Kevin_M on Oct 8th, 2006, 10:17pm I agree Annette, all said with good reason. "In memory of friends" has respectful considerations, for perhaps silent reasons afloat also, of which I can't speak for many. I don't know. |
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Title: Re: Another thing..... Post by Charlie on Oct 8th, 2006, 10:31pm Yuck. Jonny is right. It's impossible to know the reasons. Surely more is involved.....however; a big fat hit might be one of a dozen perceived reasons for someone to go off the deep end. Memorial page is fine; suicide page? http://www.kolobok.wrg.ru/smiles/standart/punish2.gif?SSImageQuality=Full Charlie |
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Title: Re: Another thing..... Post by georgej on Oct 8th, 2006, 10:36pm Well said, Annette. For what it's worth, right now I'm inclined toward Jimi's view of things. I like the idea of a memorial page--to remember and honor the people we've known--but I believe that cause of death need not be mentioned. However, as Jimi has said, I'm not sure that this is the right time to try to hammer this out--let a bit of time go by, and let our immediate emotional reactions subside before we try to acheive some sort of consensus. I have confidence in the wisdom and maturity of those people here that I've gotten to know, and I'm sure that the same is true for the ones I do not know well. I believe that any memorial link or thread that may eventually appear will be well thought out, and will do credit to those we intend to honor. That is what it seems to me that we wish to do. My best to all of you--my family. George |
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Title: Re: Another thing..... Post by ClusterChuck on Oct 9th, 2006, 12:31am A memorial is DEFINATELY appropriate. Some names that instantly come to my mind, is Kip and his wife, and Athos. Possibly Kip or Atho's name could be in the title of the section, to honor them. The cause of death is not needed. ESPECIALLY mentioning suicide!! Remember how upset BrianY's wife was when she found his name listed on that site that listed all suicides. She did NOT want his name on that list, where members of the family, mainly his children, would be constantly reminded of how he died. --- Something for us to heed and remember. Chuck |
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Title: Re: Another thing..... Post by Bob P on Oct 9th, 2006, 7:58am Piera |
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Title: Re: Another thing..... Post by chewy on Oct 9th, 2006, 8:01am TonyG |
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