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Title: UPDATE! wasn't expecting this response... Post by Little Deb on Jan 7th, 2004, 4:26pm Debbie, it is ironic to receive an e-mail from you today. My husband committed suicide two years ago tomorrow. he had cluster headaches. Please take me off your list. I wish I had known about this support group before he died. It would have been so helpful. I knew of nowhere to go for help. No one knew how to treat them and he just suffered terribly. Mindy My response: Mindy, I am so sorry to hear about your husband. I hope I have not caused you too much pain. I will take you off my list. I sent out over 200 emails, not knowing if they would even reach anyone. I am sorry your husband suffered so. All of us clusterheads do. Some more than others. I am not sure when this support group started, but I found it by accident last year during my cycle. I have had CH for 25 years. This group of CHers we call our "family". It is wonderful to talk to others who understand our pain. And you are right, we are still treated terribly for the most part. The medical community and society are so undereducated on CH. We are trying to make a difference though. We are on the bandwagon! Please, please, if you ever want to talk or meet any of us, know we are here for you. There is a Supporters Board also. You are still part of our "family". www.clusterheadaches.com Debbie Hart aka: Little Deb Think I responded appropriately??? Hope so. Let us say a prayer for her today as she remembers her husband, our unknown cluster brother. May he rest in pain free peace. |
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Title: Re: wasn't expecting this response... Post by Lissa on Jan 7th, 2004, 4:29pm That is so sad. :( |
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Title: Re: wasn't expecting this response... Post by CHmess on Jan 7th, 2004, 4:29pm OMG - I have goose bumps all over and tears in my eyes....you couldn't have replied better to that!!!!!! I'm saying a prayer for her right now!!! |
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Title: Re: wasn't expecting this response... Post by ClusterChuck on Jan 7th, 2004, 4:30pm SHIT!!! That poor woman! I hope she comes, but I can fully understand her not wanting to go. Damn shame! I think you responded just fine. Chuck |
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Title: Re: wasn't expecting this response... Post by Paigelle on Jan 7th, 2004, 4:39pm Oh my goodness! I truly feel this shows the true pain of cluster headaches. How it not only affects the person suffering, but the ones around them also. The pain a damn headache can cause for so many people and the damn medical community neglects it for the most part. Now I am depressed and mad as hell. We should all pray for that family. |
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Title: Re: wasn't expecting this response... Post by Rick_K on Jan 7th, 2004, 4:45pm That was a great response |
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Title: Re: wasn't expecting this response... Post by Woobie on Jan 7th, 2004, 4:59pm SEE?? Clusterheadaches DO kill ~ directly or not, they do! :'( This pisses me off... I wish they would have found this site - he would be alive today - I'm almost 100% sure of that! Makes you wonder who's hurting out there.. alone. Deb - you did good! Man! ............ :-[ tina |
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Title: Re: wasn't expecting this response... Post by jflynn on Jan 7th, 2004, 5:02pm I saw a specialist yesterday and he said there is a very high incedence of suicide among cluster sufferers. In fact "suicide headache" is a common term for CH. |
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Title: Re: wasn't expecting this response... Post by Woobie on Jan 7th, 2004, 5:06pm Yep - that's true - but I know for a FACT that this site is responsible for saving lives.............. Im sure there are a lot of people that will testify to that! It's just a shame this guy suffered alone. |
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Title: Re: wasn't expecting this response... Post by Edna on Jan 7th, 2004, 5:08pm WOW Bring you back to the reality of what's important doesn't it? Deb, you did wonderful. Praying that our unknown cluster bud rest in peace not that his pain is finally gone. And may the good Lord keep his family close. EDNA |
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Title: Re: wasn't expecting this response... Post by jonny on Jan 7th, 2004, 5:11pm :'( |
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Title: Re: wasn't expecting this response... Post by miCHel on Jan 7th, 2004, 5:15pm I think I remember a thread when a lot of us mentioned that they had considered suicide at one point because of CH. It certainly was my case - every cycle. With this site and the people here, I now feel that I have so many more options before that final one. It is so sad to find out that some sufferers didn't get to reach this place in time. Deb, your answer was perfect. miCHel |
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Title: Re: wasn't expecting this response... Post by BlueMeanie on Jan 7th, 2004, 5:17pm OMG. I'm a guy and guys don't cry. As much pain as i've been in lately, that put a tear to my eye. So sad to hear that story. That's what makes this organization so great. Having people who understand makes such a big difference in our lives. PFDAN |
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Title: Re: wasn't expecting this response... Post by Tiannia on Jan 7th, 2004, 5:24pm Deb you did great. I was deffinatly not expecting to read that. That is so very very sad. I know that this site has changed me so much. THat is why it is so great that a couple of times a week we normally see at least one new person on the boards. Tia |
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Title: Re: wasn't expecting this response... Post by thomas on Jan 7th, 2004, 5:24pm :'( |
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Title: Re: wasn't expecting this response... Post by ShariRae on Jan 7th, 2004, 5:45pm Deb.. I think your response was perfect.. Nice job :) Shari (fighting back tears) |
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Title: Re: wasn't expecting this response... Post by Linda_Howell on Jan 7th, 2004, 5:52pm lil Deb, I'll say it too. Your words were just fine hon. BTW, this site started on April 11th. 1998...God I wish she had found us then. Linda :'( |
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Title: Re: wasn't expecting this response... Post by Charlie on Jan 7th, 2004, 5:58pm Good response Deb. What a true horror this thing is and what it can do to people. >:( :-/ Charlie |
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Title: Re: wasn't expecting this response... Post by grumpett on Jan 7th, 2004, 6:15pm That was a great reply Deb! I often thought that any body else who had this always did commit to suicide and that was why I didn't know of any one else with this condition! I know I did and still do! |
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Title: Re: wasn't expecting this response... Post by Jackie on Jan 7th, 2004, 6:20pm Very sad... :'( There are so many of us here helping each other. God only knows how many others are out there going it alone....wish there was a way to get to each and every one of them. Deb, your reply was good. Jacks 8) |
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Title: Re: wasn't expecting this response... Post by KingOfPain on Jan 7th, 2004, 6:50pm What comes to mind [after the sadness for her & the loss of her loved one :'( ] is maybe, just maybe if she ever encounters another CHer, she might just remember this site & your effort. It could save that life, &/or give support. I appreciate your trying. Way To Go Little Deb. |
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Title: Re: wasn't expecting this response... Post by t_h_b on Jan 7th, 2004, 6:58pm Mindy should be given an honorary lifetime supporter's membership from OUCH. |
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Title: Re: wasn't expecting this response... Post by Renee on Jan 7th, 2004, 7:12pm WOW!! This really hits home for me, in my heart and in my life. :'( Oh, how I wish they had found this "family" in time to save him. It hits home for me because only 4 months ago I was contemplating the same. I went to the e.r. and it was actually an e.r. doc that diagnosed what I'd been suffering for 7 years. I came home and immediately started researching and found my "family". NOW...I know I am no longer alone and if y'all can overcome, I CAN TOO, and I no longer feel all alone with noone to share this demon with. Thank you all for saving those, including me, that find this wonderful home. I'm staying and fighting for me and for you. tears for those not as lucky as myself, Renee |
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Title: Re: wasn't expecting this response... Post by ClusterChuck on Jan 7th, 2004, 7:17pm on 01/07/04 at 17:06:34, Woobie wrote:
Tina, I am still alive ONLY because of this site. It was a last straw when I did a search for CH. I am so glad I did! I know some will be very pissed to hear this, but I still think about it a LOT. The ONLY reason I have been able to bear this cycle, for so long, is the people here. I thank you all for that. And to the greatest one of all, DJ, what can I say, but a sincere thank you. Chuck, who has had his life saved by this site. |
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Title: Re: wasn't expecting this response... Post by stevegeebe on Jan 7th, 2004, 7:58pm Ironic...? Maybe. It'll have to play out. One never knows who controls these things. I wish he had found this place. Makes me sad to hear this. Ya did great LD. Steve G |
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Title: Re: wasn't expecting this response... Post by Roxy on Jan 7th, 2004, 8:08pm Deb, you did good. I don't think anyone could have said it any better. It's just such a shame he didn't find the board and help. :'( |
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Title: Re: wasn't expecting this response... Post by 9erfan on Jan 7th, 2004, 8:10pm Deb, You're response was definitely appropriate. That's a difficult thing to respond to. Her letter really hit home. I really believe that this site saved my life too. When I first went chronic back in 1998, my days were filled with thoughts of suicide. It was a dark, dark time in my life. Sometimes we forget how truly bad this disease gets for some. I lurked here for the LONGEST time just reading & reading. This site gave me hope. I wish Mindy's husband had found us and found hope too. V |
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Title: Re: wasn't expecting this response... Post by Mastifflvr28 on Jan 7th, 2004, 8:29pm Fuckeneh Lil Deb, You done GOOD. and Fuckeneh DJ!! And Fuckeneh to all you episodics that stick around when you are PF to give hope to the ones who aren't...YOU could be saving a life too. And Fuckeneh to all you Chronics that hang in with us all!! LOVE THIS FAMILY!!! Mast |
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Title: Re: wasn't expecting this response... Post by ClusterChuck on Jan 7th, 2004, 9:15pm Mast, quit holding back. How do you REALLY feel about it? Chuck |
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Title: Re: wasn't expecting this response... Post by 5-string on Jan 7th, 2004, 9:19pm This is a serious condition! Damn! >:( :'( You did good Deb. ..Mark.. |
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Title: Re: wasn't expecting this response... Post by Ree on Jan 7th, 2004, 11:44pm awwwwwwwwwwwww... really makes you sit and think. That was a great response Deb and you too Mast... I felt the hug in those replies........love ree |
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Title: Re: wasn't expecting this response... Post by cootie on Jan 7th, 2004, 11:52pm Yeah this place is a life saver even fora supporter like me.....good job Deb..........good response ! Pam with a passion for this place |
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Title: Re: wasn't expecting this response... Post by Patrick_A on Jan 8th, 2004, 12:56am I can honestly say....This site saved my life 4 years ago. I was tired and desperate when i ran across this site. I can comiserrate with anyone who has been there. Its tough when you run out of hope and support! Its the only reason i stay now, I think to myself there might be someone that will find some comfort in my words, just enough to live another day! Patrick |
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Title: Re: wasn't expecting this response... Post by nancyc on Jan 8th, 2004, 1:20am Deb, when i was sending out emails for the gathering at my house, I sent Mindy one...she wrote me back and told me about her husband...It was so sad to hear this...We know this is very possible but we dont like to really think it happens...My prayers go up for her.... :)nancyc |
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Title: Re: wasn't expecting this response... Post by Paigelle on Jan 8th, 2004, 8:41am It is amazing how much a website can help people who are in pain, not only the sufferer, but the supporters also. It goes back to if you can help one person, then you have done a good job. This site helps all of us and all of the others who will find this family. |
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Title: Re: UPDATE! wasn't expecting this response... Post by Little Deb on Jan 8th, 2004, 6:09pm I prayed last night in tears that this woman would somehow keep in touch. I received the following today, and replied. Just wanted to share with all of you... Thank you. I have finally gotten up enough nerve to give the autopsy report to a Dr to explain some things to me. My husband 's official cause of death was a subanachroid brain hemorrhage and the secondary was the gunshot. It haunts me to this day. Was it the pain from the clusters that drove him to suicide and the hemorrhage resulted from that or the sub came first? It is rare for women to get these headaches. I feel for you and appreciate your support. Mindy I replied: Mindy, You don't know how glad I am to hear from you again. I wanted to email you again, but was trying to respect your request. I want you to know, you have not been alone in your sadness. We all feel your loss. I cried in bed last night. And fight back tears as I type. I hope you don't mind, but I would like to share the following with you. I don't mean to make you any more sad, I just want you to know that we care. And re-emphasize that we are here for you, and that you are part of our family. I'm sorry that you don't have the answers you are looking for. I don't know if a doctor will be able to give you an answer. They are still so uninformed. It is very common for the medical community to say that women do not get cluster headaches. That just isn't true. There are a great many of us. If the doctors would just go to the clusterheadaches.com website or the OUCH website, they would see for themselves. And they could probably learn something. We have men, women and children who suffer from this horrible monster all over the world. We continue to try to educate society and the medical community and hope to one day get it listed as an actual "disease". And we continue to fight for better service from the insurance companies that won't pay for medications that do sometimes work. The emergency rooms treat us as drug seekers. The doctors, and our employers, and sometimes our family members ! do not understand. That is why clusterheades.com is so important to all of us. We understand, and are there for one another. I, like many others, did not know that others existed that suffered this pain. I was so excited when I found this site. And I met my first group of clusterheads last November. We are very excited about meeting again at the end of the month. You can't imagine how many of us have gone to doctors and just prayed that they would find some hemorrhage, or tumor or something. Just to find some reason for this pain. I wonder if it is possible to find out which came first for your husband. Either way, we have all lost one of us to the monster. We grieve for your loss, our loss. And we pray that you will find peace. Please, please, if you would like to write again, I would love to hear from you. I will not send you any more emails unless you say it is ok. And if you decide to come to our gathering as a supporter, we would all love to meet you. We understand if you don't. God Bless. Debbie her reply: Thank you, Debbie. I will keep you informed. It is a hard day for me today. Mindy Once again everyone....prayers and vibes to this heartbroken woman. Thanks. Deb |
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Title: Re: UPDATE! wasn't expecting this response... Post by Woobie on Jan 8th, 2004, 6:46pm WOW! :'( :'( :'( :'( |
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