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(Message started by: little2late on Apr 12th, 2003, 6:14pm)

Title: Hi, I am new to the board
Post by little2late on Apr 12th, 2003, 6:14pm
Hello,
I found this board while researching cluster headaches.
My husband suffered from them through-out our marriage. He was a gentle giant. I never realized how severe the pain was....I new it was bad as this was the only thing that ever brought him down, incapacitated, but he kept all the pain inside.....Only until reading some of the introduction e-mails have i really and truly understood the pain.....I never experienced that kind of pain and feel like I have now discovered truely what he was going through alittle2late. I guess I have come here to listen and understand more as someone who lived with a sufferer......Thanks for listening ???

Title: Re: Hi, I am new to the board
Post by suzy617 on Apr 12th, 2003, 6:23pm
Welcome to the board. Stick around, we have many wonderful supporters in here.
Sorry you could not have found us earlier before it was too late but its never too late to help others. So once again, welcome....

suzy

Title: Re: Hi, I am new to the board
Post by don on Apr 12th, 2003, 7:14pm
Hey there!

You are welcome to pull up a log and stick your head in the campfire with the rest of us'

You may want to check out the supporters corner. Their heads are in flames to for differant reasons. Dealing with us!

You will learn a lot about the clinical aspects of CH here but more 9importantly you will learn what happens to quality of life for a sufferer and his supproters. It's not pretty.

Title: Re: Hi, I am new to the board
Post by little2late on Apr 12th, 2003, 10:35pm
thanks for the welcome, and I have visited and posted at the supporter board.......I'm not sure where I belong so I posted to both....I'm sorry to say that I lost my husband in March of 01......and just connected it with his cluster headaches......I just didn't realize how severe this condition is......I mean I did take him to a specialist (neurologist)it's the pain I didn't realize or understand the extent of.....I have been researching all night and heard it described as bad as giving birth 3 times in one day.......WOW......what an eye-opener...

I hope this doesn't upset anyone but I just feel that now I need to hear from those of you who do suffer still and try to understand even more as I had been guilt ridden for 2yrs.  thinking it was me and never realizing it was the headaches he was escaping from..

I wish I was less ignorant 2yrs. ago.....I don't know anyone else who suffered from them other than my husband.....Hope you all understand why I have come.
Thanks for listening..... :'(URL

Title: Re: Hi, I am new to the board
Post by Frank on Apr 12th, 2003, 10:53pm
I am sorry that you lost your husband. I hope I am not reading more into your post than what you wrote, but are you saying that you think your husband took his life because of his cluster headaches? :'(

Title: Re: Hi, I am new to the board
Post by cluster0557 on Apr 13th, 2003, 1:05am
Frank, I read the same thing into it that you did.

I sure hope not for little2lates sake. I know it does cross the minds of ones who find little relief from the monster month after month year after year.

If he did I wish little2late  my deepest sympathies.  :'(
Please do not blame yourself if so. Seek support and help for your pain.

Title: Re: Hi, I am new to the board
Post by Charlie on Apr 13th, 2003, 5:20am
Welcome to our little world. I found this a great place to listen, ask questions and contribute when you feel you can. Actually, we want to hear from you anyway. New blood is needed here from time to time.  You are welcome and supporters post all over this site.  

I know these things can take an awful toll on marriages and friendships. We're here for you and feel free to join in.

Charlie

Title: Re: Hi, I am new to the board
Post by catlind on Apr 13th, 2003, 7:41pm
Little2late,

I read your words and I cried  :'( :'( :'( :'(

I really don't know what to say to you.  I do want you to stay, and learn, and understand, and hopefully exorcise some demons of your own.  I have been to that place myself, many of us on here have even tried.  I can only thank god I failed.  When you are alone with this demon, the pain, so pure, so unrelenting.  Years of trying to find out what's wrong, and being accused of being a junkie, or faking it, or being weak.  It's not easy to live with this.  When the pain is around, escaping it is all you can think of.  It consumes you.  This place literally saved my life.  I'm not the only one.  

I am so sorry that you have had to suffer this hell.  Please do not blame yourself.  I love my family, and I love life, but this is all consuming and takes every ounce of your soul to fight.  I wish you peaceful days and nights.

Cat   :'( :'( :'( :'( :'( :'( :'(

Title: Re: Hi, I am new to the board
Post by don on Apr 13th, 2003, 8:00pm
You have voluntarily entered the belly of the beast. Chosen to confront your fears head on. It would have been easier for you to deny and move on. You have Ch'er courage!

I commend you and think it is fair to say that you belong here wheter you choose to come to this forum,  the supporters forum, or both.

I have suffered for 26 years. Approximately 20 of them not knowing what I had. For you not to understand is completely acceptable as many of us suffers haven't understood either. I think you will discover in time that there was absolutely nothing you could have done to relieve your hubands pain. Unfortunately, that is the cross that our loving supporters must bear. Relieving the pain is something only the sufferer can and must learn to do.

You will get all the support, understanding and information you need to come to terms with your ordeal. We have all gone through it in one form or another.

Do not hesitate to post a question, vent, cry, or ask for help. You have earned your place with us.

Title: Re: Hi, I am new to the board
Post by cootie on Apr 13th, 2003, 9:48pm
alittle2late......geeze that's a sad story bout yer hubby.....I'm sorry.....don't feel guilty.....hope this place helps you......sad sad story Pam

Title: Re: Hi, I am new to the board
Post by Drk^Angel on Apr 15th, 2003, 4:20pm
Welcome to the board!  Sorry to hear that the beast rode your husband like a sick race horse, diggin' it's spurs into his cranium to make him dance faster and faster.  Welcome to the family!  Good luck!

PFDAN................................... Drk^Angel

Title: Re: Hi, I am new to the board
Post by Bob P on Apr 15th, 2003, 4:48pm
2late,

Cluster headaches are also know as suicide headaches.  Believe me when I say that almost every sufferer has considered the solution your husband decided on.  All of us have prayed for God or someone else to end it for us.  When the pain of one of these attacks hits, it's anything goes to escape it.

I hope you'll find comfort in these pages and these people.  Understand that it isn't you and, as a supporter, there really isn't much you could have done.  It's just the nature of the disease.

Truely sorry for your loss.

Title: Re: Hi, I am new to the board
Post by Not4Hire on Apr 15th, 2003, 6:16pm

on 04/13/03 at 20:00:41, don wrote:
You have voluntarily entered the belly of the beast. Chosen to confront your fears head on. It would have been easier for you to deny and move on. You have Ch'er courage!

I commend you and think it is fair to say that you belong here wheter you choose to come to this forum,  the supporters forum, or both.

I have suffered for 26 years. Approximately 20 of them not knowing what I had. For you not to understand is completely acceptable as many of us suffers haven't understood either. I think you will discover in time that there was absolutely nothing you could have done to relieve your hubands pain. Unfortunately, that is the cross that our loving supporters must bear. Relieving the pain is something only the sufferer can and must learn to do.

You will get all the support, understanding and information you need to come to terms with your ordeal. We have all gone through it in one form or another.

Do not hesitate to post a question, vent, cry, or ask for help. You have earned your place with us.


dat's OUR president talkin'....quite eloquently too....hmmm
....kinda SAYS it...like the Gettysburg address.....THIS THREAD NEEDS A BUTTON

PS...don: bite ME.......(N4H)

Title: Re: Hi, I am new to the board
Post by Roxy on Apr 15th, 2003, 7:10pm
I am so sorry for your loss.  There are no words to take away your pain, but maybe the people and information here can help you learn and understand, it is just devastating that it is too late for your husband.  

If this board and the OUCH site can just keep one person from this option, it has served a purpose that is beyond words.  If we can work together to spread information to fellow sufferers and doctors about this beast that haunts us, there is the chance that someone who thinks they are alone in their pain, will find us...and realize that they are not alone.  Sometimes that, or a correct diagnoses, is all it takes to make a difference.

I hope you can find some solace from your pain, my thoughts are with you.

Tracey

Title: Re: Hi, I am new to the board
Post by Callico_Kid on Apr 15th, 2003, 11:47pm
I'm so glad you found us, and I hope you will stick around long enough to really come to know there was no fault on your end for your husband's death.  Unfortunatly when we go through such a loss we tent to look at ourselves to try and find where we failed and try to take on ourselves the responsibility for what happened.  You must not do so.  As you will find here the role of the supporter is a difficult role to fill, but in the end it is the sufferer who must make the decisions as to how to deal with this beast. I, too, am new here, having only recently registered, although I have suffered episodically for twenty five years and chronic since March 02.  I am so gratefull for this site and what I learned here in the months before I did register.  you will find a more caring group nowhere, nor will you find anyone else who can understand the pain both you and your husband have gone through.  My prayers will be with you.  PLEASE keep us posted on your progress.

jc

Title: Re: Hi, I am new to the board
Post by little2late on Apr 18th, 2003, 10:20am
THANK YOU ALL FOR YOUR RESPONSES:

Frank and cluster0557, no you are not reading into my post, I have searched for 2yrs. to find out why my husband took his own life, no warning signs or note.. Are you saying this is not the norm for cluster headache sufferers??

catlind, thank you for your words as it does ease my guilt..

drk angel, the way you described them "race horse" really caught my attention, i feel so sorry for those of you who suffer..along with my husband who did.

Bob P., yes, suicide headaches.......after i posted i went onto the web and printed out so much info. on cluster headaches and saw that they are also known as suicide headaches.......I had no idea.....I wish i had......also i had no idea about the oxygen working.....never heard of it from any of the doctors that my husband went to.
Do people check out of life due to these headaches?? Is this possible or am i on the wrong track thinking this is why he did this as he also not only left me but 4 children, his parents and brothers, and lots of friends...

Everyone who posted touched me deeply, i was shocked to see so many responses and thought it was wonderful for each and everyone of you to respond to me.......thank you all and i hope to continue to be here.

Title: Re: Hi, I am new to the board
Post by jonny on Apr 18th, 2003, 12:08pm

on 04/18/03 at 10:20:04, little2late wrote:
Everyone who posted touched me deeply, i was shocked to see so many responses and thought it was wonderful for each and everyone of you to respond to me.......thank you all and i hope to continue to be here.


We are a family, and now we are your family for as long as you want us.

...............................jonny

Title: Re: Hi, I am new to the board
Post by tanner on Apr 18th, 2003, 12:25pm
oh my god! i wondered why this thread got bumped to the top and how i missed it the first time.

little2late, i am so sorry for your loss and for what the wondering has put you through. i am just now at the suicide stage of chronic ch's, where i am fighting to want to keep on fighting. i keep stopping in here to tap into this reserve of strength because i know from these friends that it is possible to live with/through this and i don't want to leave my loved ones wondering.

i wish that your husband had found this place so that i could have known him.

i'm very glad that you found us, and thanks for giving me the inspiration to get past this next day......

                                      tim

Title: Re: Hi, I am new to the board
Post by echo on Apr 18th, 2003, 12:25pm
Sorry to read of your loss.  This site has been a life saver for many of us.  Welcome to the family.


Title: Re: Hi, I am new to the board
Post by Peppermint on Apr 18th, 2003, 1:09pm
(Replying here since this is a double post :) )
I saw this post earlier and I've been thinking about how I could reply.  

First, I'm so very sorry that you lost your husband to this, it sure sounds like the beast finally took a hold of him and wouldn't let go.  One of these days that animal will bite the dust for good.  

Secondly, I'm glad you found this board, betterlatethannever should be your name, because though it is little consolation, at least now you may be able to have some understanding of what your husband went through.  Lots of ch'ers are probably never diagnosed, and never knowing, well that's another ball game.  How did they deal with their pain, how did their families deal with such a thing, neither having the ANY information, or armor to fight.  

Lastly, I don't think you should feel guilty for not knowing the extent of his battle.  Even knowing, trying to understand, it would have been difficult for you to do anything but to give your support in the best way you know how, which is what you were doing, right?
There's always an ear here.  I hope you find peace in your heart, and in the knowledge that this terrible disease is to blame, not you.  

Peace & Love,
Peppermint ;)

Title: Re: Hi, I am new to the board
Post by cluster0557 on Apr 18th, 2003, 1:13pm
littel2late:

When I read you first post I was unsure if you husband took his life or not. After I posted and re-read what you wrote I understood that to be the case and I was so very sorry for you and your family.

Clusters are called suicide headaches for that reason. When mine where completely out of control it also crossed my mind. I went so far one night 4 years ago to smash my head through our family room wall to escape the pain.  It was in my second year of clusters and desperation set in badly. That night I lost the ability to cope and was willing to do anything to get away from the endless pain.

I truly consider myself lucky because of that incident. It made my recognize I needed more help. My wife was doing her best to help me but when the pain set in nothing got through to me until I hurt myself.  

I am very sorry for your loss but can tell you that you cannot blame yourself no more than my wife can blame herself for not being able to help me thru the pain that I still go thru now.  

As I said I was lucky. I found help in getting the pain controlled to a point where I am able to deal with it now.

Use this forum as your support group. It can truly help you in the healing process that you are undertaking.
Allow us to help you as one of our own.

Jim

Title: Re: Hi, I am new to the board
Post by miCHel on Apr 18th, 2003, 2:22pm
Suicide headaches?  Strangely, I had never heard the term.  But it has my vote if somebody would like to make it the official name.

Little2Late, all the previous posts I have read telling you not to blame yourself are so true.  I also have a great girlfriend, two wonderful kids and a good life and still I don't know how many times I wished I could put a gun on my head and just pull the trigger to "kill that beast".  And if I had one (a gun not a head) I would have most probably done it.  It"s just that way with the beast.

So here's my advice for you:

1) Don't blame yourself.
2) Stick around for all the support you need.
3) And finally, take Peppermint's great advice and come back to us with a new nickname.  It's going to be a first great step...

miCHel

Title: Re: Hi, I am new to the board
Post by little2late on Apr 18th, 2003, 10:42pm
Jonny: thank you for including me "family" as this is such a warm bunch of people and I am sooooo happy to have found you all...

Tanner: I am glad I inspired you, how i am not sure but am glad to hear i may have helped someone as i can't tell you how all your encouragement has helped me.. I feel like bricks have been lifted off my shoulders some-what thinking that this could possible be the cause for his suicide....and how long he wondered or even planned or just couldn't find the strength anymore as my husband was the strongest man physically that i have ever known......Please hang in there as you all seem to find something that works,  even the support you all get and give each other here.

Peppermint: thanks for all your support and I probably should change my name but little2late IS how i feel right now and wish, well you know what i wish.....

Cluster0557: I sort of wondered if you had thought about suicide from asking me if that's what i had meant about my husband......I wish he could have known their was support out here and also i wish i had......It's ironic to find it after the fact, don't you think?? From someone who is now surviving a suicide, i would give anything to extensively help or do anything i could to make his pain go away so please no, through your pain that you can make it, you have support and the pain of losing you would devestate many..

I am so thankful for all your support as you'd be surprised at the treatment most of us who are survives are treated.......someone must be blamed and it's always the spouse first......so big (((((((()))))))))) to you.

Title: Re: Hi, I am new to the board
Post by Callico_Kid on Apr 18th, 2003, 11:06pm
Dear Little2Late,

You mentioned that none of the Drs your husband saw told him about Oxygen.  I am not surprised.  I was lucky twenty five years ago when I was first diagnosed.  My Dr told me the only reason he knew what clusters were is that his sister has them.  When I moved north several years back and went to see a Doc to get a scrip refilled he said, "Cluster Headaches?  Never heard of them."

Once again, you cannot hold yourself in any way responsible, but I hope we can help in the healing process for you.  As Jonny said we are now your family.  We are sometimes noisy, raucous, crude, rude, and ill-bred, but still family.  Pull up a chair and feel the love.
jc

Title: Re: Hi, I am new to the board
Post by Frank on Apr 18th, 2003, 11:12pm
I wish there were some reliable statistics on how often this happens. I know the suicide rate among the general population in the U.S. is around 12 per 100,000... but what about the rate among cluster headache sufferers? I bet it is MUCH, MUCH higher... hence, the nickname. Meanwhile, the FDA, the drug companies, insurance companies, and doctors continue to ignore us... ???

At least I know that this website has saved a few. :D

Title: Re: Hi, I am new to the board
Post by cluster0557 on Apr 19th, 2003, 12:00am
I saw some statistics somewhere. Once i beat back the beast I will search for them.

Right now my beast is awake so I gotta go off to fight  the bastard  along with my broken butt (long story). ;D

Till later.....OUCh :'( :'(

1:37 am could not find statistics that made sense. Of course drugs may have affected search  8)

Title: Re: Hi, I am new to the board
Post by catlind on Apr 19th, 2003, 10:17am

on 04/18/03 at 10:20:04, little2late wrote:
Do people check out of life due to these headaches?? Is this possible or am i on the wrong track thinking this is why he did this as he also not only left me but 4 children, his parents and brothers, and lots of friends...


L2L, I'm no expert, I have no training, I only have experience and an understanding of people.  Yes, people check out because of these headaches.  All too often unfortunately.  

You said your husband left no note.  He didn't leave you and your children, his family or his friends.  He left his suffering.  How do I know this?  Like I said experience.  You leave a note when you want attention.  You leave a note if you believe you can be helped.  You just do it when you want out.  I lived, I was lucky.  No note, no notice, not a word to anyone.  Someone caught on and saved me.  I was DOA.  I got a second chance.  Your husband didn't want to hurt you, I'd be willing to bet he didn't want to leave you.  He most likely didn't want to hurt you anymore with his suffering.  I'm guessing at this, based on personal experience.  This affliction is so misunderstood.  Not just the pain, but the doctors, the fighting to find help.  No one understanding, accusations from people who don't know us, it truly does consume you.  I can, and have, justified why my kids and husband are better off without this hell in their life.  This is a subject that has had much discussion here.  We all face it, and some of us don't make it.  I didn't want to hurt my family.  I wanted to help them.  I know that sounds twisted, I'm just trying to give you the picture from the other side of the fence.  It's not about not loving you enough to let you help.  There is no help.  We have to do it for ourselves.  There is nothing you could have done to make it better for him.  We try to include our families, let them in, and let them help.  It's harder to do that than it is to deal with the pain.  

Don was so right.  You have courage beyond normal.  To face this, to learn, to fight, to understand....man that's moxie.  You are strong, and as much as I know you wanted to help him, he had to do it himself.  Even if you knew it was also called a suicide headache, there is nothing you could have done.  He had to do it for himself.  Most of us who have come here, knew little to nothing until we got here.  The only way to know this is to be with others that have it.  You are in the right place to understand and exorcise your guilt.  Stay with the family and gain the support you deserve.  You will be able to see without exception, that you are in no way responsible, and that you couldn't have done anything even if you did know.  

Your husband wasn't weak, he wasn't a coward, and he wasn't trying to hurt his loved ones.  He did what he had to do to deal with this.  It was a permanent solution to a temporary problem, but he didn't know it was temporary.  

Cat

Title: Re: Hi, I am new to the board
Post by catlind on Apr 19th, 2003, 10:25am
I'm glad you came here.  We found out we lost one of the family.  I think we all will mourn his loss even though none of use knew him.  You have given us a gift. The most expensive one there is.

You have shown us the other side.  We can and will use that information to save every clusterhead we can.  To show them the other side of the story.  I hurt for you so deeply, and I would take on multiple kip 10's to be able to change things for you, for you not to have to be the one that we learn from.  But I can't change reality, all I can do is take it and make sure I do everything in my power as a human being to make sure we lose no more family members.

Please stay with us.  You can give us something no one else can.  You can show us what lies on the other side of that threshold that we can't come back from.  In doing so, we can stop ourselves and fellow family members from crossing it.

:'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(

Cat

Title: Re: Hi, I am new to the board
Post by little2late on Apr 19th, 2003, 4:26pm
Cat, and every other wonderful person i have come to know here, i wasn't sure how you all would feel about me posting and sharing my story.....I wasn't sure if it would be welcomed or if anyone wanted to hear it....I'm not sure if I would have, and i  am living it.....You feel like you received a gift from me sharing my story.......I am shocked and overwhelmed at the same time....I guess I thought it would upset some and was going to just give one post a try and if i didn't get a good or positive response or found it upset anyone i would have just left.

I feel so lucky to listen and read and give anything i can to help anyone even if it is telling the other side of this experience ....who am i to tell someone who is sufferering so "hang in there" as what do I know about that kind of pain, BUT, i can say fight for yourself, your loved ones and for the help that i know has to be out there to cure these....Suicide IS forever and i wonder if my Bob really new that or just couldn't see past the pain.......

You see here's alittle bit more of the story, since you are so receptive to me i will share more with you....
We were going through a brief bad period in our marriage (nothing to do with the headaches ) the headaches seemed to come on during this period... When that happens you tend to what's important which was his attacks......I was picking him up from work as he couldn't work.....taking him to doctors but, feel that i wasn't there enough for him as i had moved out of our bedroom a couple of months prior to the attacks and he had mentioned to me several times that he had been up all night......but never ever said anything about this awful pain.......i knew he was up because of the headaches but I just didn't know how bad it was.He was sooooooooo silent and just took what came his way, excepted things.......I regret not patching things up sooner and maybe i could have saved him... maybe me not being very close at the time made him give up that much more.......

If I can tell any of you something it would be that life is so short and when all is said and done at the end of the day the only thing that counts and matters is FAMILY....
Lesson learned little2late. I miss him so and yours would miss you awful, everyday, every minute......I now have to live with this forever and noone could ever replace him......His parents don't speak to me, little do they know as they think he did this because we were not communicating......UNBELIVABLE.....they never even tried to search for any kind of truth......My daughter told me i should send what i have found from the internet to them.....Give them a wake-up call.....maybe i will, not sure yet.....as they dont' even care about what is going on in there granddaughters lives....they have ignored them since the death and never looked back......It's very sad for them and his parents as they are missing so much in there life....now i have rambled on long enough..
Bye for now
Love
Diane

Title: Re: Hi, I am new to the board
Post by jonny on Apr 19th, 2003, 4:49pm
Hmmmmmm!!!

just Hmmmm

................................jonny

Title: Re: Hi, I am new to the board
Post by little2late on Apr 19th, 2003, 5:34pm
Jonny: You gotta give me more than Hmmmmmmmm
I've done that for 2yrs. it's like a ???????????? never getting answered......Please speak your mind...I would welcome anything you would like to share with me.
thanks
Diane
Happy Easter all: I am off to church

Title: Re: Hi, I am new to the board
Post by andy on Apr 19th, 2003, 6:20pm
Diane, Im so sorry for your loss. I cried today after re-reading your post. I lost one of my best friends 8 years ago. I  wondered if there was something more i could have done to save him, but i  finally realized that i had no control of his fate. It was all up to him. Maybe if i had gotten there sooner i could have saved him.  I dont know, i did try but i was too late. He was gone when i got there. He had moved back down here from Mass and we started working together again. We were making some good money and we were really busy.   He was a great dude and he taught me almost everything i know about my trade. We did some awesome work together. I still miss him. I know he didnt mean to hurt me, but he did, and it took me a while to finally get over the pain i felt. He is the reason that im so against suicide. Im going to live on and keep teaching others the skill that ive learned from him .........................andy

Title: Re: Hi, I am new to the board
Post by little2late on Apr 19th, 2003, 9:17pm
Andy: I'm also sorry for your loss :'(

How are you turning your experience into a positive?

Yes, it's utlimately their decision unfornately.....it took me a while to understand and let some of the guilt i feel go, but some will always remain......

Thanks for your response as it's always nice to hear from someone else who has gone through the same thing.......I'm still hoping to find a way to turn cluster headaches and suicide into the forefront somehow and do something to avoid this pain for those who suffer and those who live with a sufferer.......

Bless you for sharing with me
Diane


Title: Re: Hi, I am new to the board
Post by andy on Apr 19th, 2003, 10:00pm
Diane,   My friend didnt have CH. But i guess he suffered from something  that he couldnt deal with. Alcohol was probably the main cause. I dont know what to say to you to make it a positive expierience. All i know is i want to live life to its fullest and be as happy as possible despite this horrible condition that so many of us have been subjected to. And im going to fight this beast untill i win. Feel free to e-mail me anytime you want since ive become dependant on this wonderful message board so much. Im not new here, ive been lurking here for years. i just started posting lately though. Thank you so much for your support, it really means a lot to me and others too. Your new friend................. andy

Title: Re: Hi, I am new to the board
Post by andy on Apr 19th, 2003, 10:09pm
Oh yeah, i forgot to tell you to have a Happy Easter and i think you should change your name also.  I vote for diane, thats a beautiful name.  bye,.............andy

Title: Re: Hi, I am new to the board
Post by cluster0557 on Apr 20th, 2003, 12:04am
[quote ..Suicide IS forever and i wonder if my Bob really new that or just couldn't see past the pain.......

If I can tell any of you something it would be that life is so short and when all is said and done at the end of the day the only thing that counts and matters is FAMILY....
[/quote]

Diane,
A couple of items quoted above made me think about when I could not cope. The first one had to do with suicide being forever. My family went thru one 12 years ago with my grandfather. He could not cope with the loss of his wife, alcoholism and refused to communicate to any one what was going on.

When I ran into my real bad period I thought about the devastation to my parents and the rest of the family and became determined to as I say push thru the damn pain.

The second quote Life is so short is o so true. Family is my numero uno priority since this has all started. But it does not work with any family if the person suffering does not open up to the help extended to them.

I suspect no matter what you did, your husband decided to fight the demon alone. As we all know on this board we collectively cannot fight the demon alone.

It is too big a battle and can be lost. I am grateful for the support not only on this board but another board I am on also. Between the two the advice and suppport just plain helps.Ii offers along with my family the support that I need to cope and handle the issues each and every day.

From what I read you where there. That counted more than you give yourself credit for. Please forgive yourself. The more you know about this disease the more you will know that you could not be the only part of the prevention or the solution.

You take care now and have one Happy Easter.

Jim


Title: Re: Hi, I am new to the board
Post by BillyJ. on Apr 20th, 2003, 10:39am
Hi Diane,
        My name is Minnie and my husband Billy suffers from these horrible clusters. Unfortunately many doctors misdiagnose clusters leaving many to suffer alone wondering whats happening to them.I am so sorry your husband was one.you and your family have our condolences.
        I don't know how old your children are but I hope one day you can share this site and it's knowledge with them. Try to show it to his family it may help/may not.If he didn't let them know how devastatingly severe his pain was  they may never understand.I'm sorry they have turned their sorrow and lost into blame on you.One day they will relize they are wrong no one but the beast is to blame for your loss.
        Keep coming back to this family we truely care about  clusterheads and their families.Billy and I have recieved so much love and support from eveyone on this board and so will you and your family.sorry I'm rambling I hope something I've said may help.Just KNow your not alone.
                                 Minnie      

Title: Re: Hi, I am new to the board
Post by little2late on Apr 20th, 2003, 10:42am
Andy: So Sorry for your loss of your friend.......I feel like I have known your forever, isn't that strange?? Just from your words....Hang in there with your pain that you endure with the headaches.......It sounds like you have family that you can lean on and count on, it's so important.......My family has been there for me since I lost my husband, i wouldn't know what i would have done without them......OK I am considering changing my name now with so many insisting......thanks for the compliment on liking my name......Bless you

Jim: Your grandfather is not the first i have heard of after losing a spouse........Very sorry for you and your family, it's an awful thing to go through........If you need any support i have many connections to give you, let me know. Bob didn't open up as he was a very quiet closed mouth soul.....Never complained about much and was extremely stubborn......wouldn't budge.....He was a tough cookie with that at times, so i am not so shocked that i wasn't let in with what he was going through..he didn't let anyone in on his feelings........One of his friends said to me at the funeral "I worked with Bob for 13 yrs. and i really didn't know him, he never shared anything".........Happy Easter and I am glad i connected with you on this board......
Love
Diane

Title: Re: Hi, I am new to the board
Post by cluster0557 on Apr 20th, 2003, 12:43pm
Diane,

Thanks for mentioning a support group. As a family we have dealt with the issue of my grandfather.

I used to also try to hold all the pain to myself. I learned a couple of years ago (head thru wall) that I could not survive doing that so now I talk it out with family and friends.

It has helped and will continue to do so.

To you I wish you a very Happy Easter.
Things do get better in our little world.
Jim



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