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Topic: Hi, I am new to the board (Read 804 times) |
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little2late
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Hi, I am new to the board
« on: Apr 12th, 2003, 6:14pm » |
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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 ???
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suzy617
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Re: Hi, I am new to the board
« Reply #1 on: Apr 12th, 2003, 6:23pm » |
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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
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When God measures men, He puts the tape around the heart, not the head.
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don
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Re: Hi, I am new to the board
« Reply #2 on: Apr 12th, 2003, 7:14pm » |
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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.
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little2late
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Re: Hi, I am new to the board
« Reply #3 on: Apr 12th, 2003, 10:35pm » |
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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..... :'([flash=200,200]URL[/flash]
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Frank
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Re: Hi, I am new to the board
« Reply #4 on: Apr 12th, 2003, 10:53pm » |
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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? 
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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Re: Hi, I am new to the board
« Reply #5 on: Apr 13th, 2003, 1:05am » |
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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.
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
Jim
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Charlie
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Re: Hi, I am new to the board
« Reply #6 on: Apr 13th, 2003, 5:20am » |
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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
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catlind
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Re: Hi, I am new to the board
« Reply #7 on: Apr 13th, 2003, 7:41pm » |
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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
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don
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Re: Hi, I am new to the board
« Reply #8 on: Apr 13th, 2003, 8:00pm » |
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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.
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| « Last Edit: Apr 13th, 2003, 8:11pm by don » |
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cootie
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Re: Hi, I am new to the board
« Reply #9 on: Apr 13th, 2003, 9:48pm » |
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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
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Azrael
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Re: Hi, I am new to the board
« Reply #10 on: Apr 15th, 2003, 4:20pm » |
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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
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Bob P
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Re: Hi, I am new to the board
« Reply #11 on: Apr 15th, 2003, 4:48pm » |
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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.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Not4Hire
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Re: Hi, I am new to the board
« Reply #12 on: Apr 15th, 2003, 6:16pm » |
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on Apr 13th, 2003, 8:00pm, 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. |
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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)
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Roxy
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Re: Hi, I am new to the board
« Reply #13 on: Apr 15th, 2003, 7:10pm » |
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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
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Callico
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Re: Hi, I am new to the board
« Reply #14 on: Apr 15th, 2003, 11:47pm » |
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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
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little2late
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Re: Hi, I am new to the board
« Reply #15 on: Apr 18th, 2003, 10:20am » |
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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.
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jonny
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Re: Hi, I am new to the board
« Reply #16 on: Apr 18th, 2003, 12:08pm » |
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on Apr 18th, 2003, 10:20am, 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. |
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We are a family, and now we are your family for as long as you want us.
...............................jonny
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tanner
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Re: Hi, I am new to the board
« Reply #17 on: Apr 18th, 2003, 12:25pm » |
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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
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echo
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Re: Hi, I am new to the board
« Reply #18 on: Apr 18th, 2003, 12:25pm » |
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Sorry to read of your loss. This site has been a life saver for many of us. Welcome to the family.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Peppermint
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Re: Hi, I am new to the board
« Reply #19 on: Apr 18th, 2003, 1:09pm » |
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(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 
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When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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Re: Hi, I am new to the board
« Reply #20 on: Apr 18th, 2003, 1:13pm » |
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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
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
Jim
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miCHel
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Re: Hi, I am new to the board
« Reply #21 on: Apr 18th, 2003, 2:22pm » |
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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
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little2late
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Re: Hi, I am new to the board
« Reply #22 on: Apr 18th, 2003, 10:42pm » |
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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.
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Callico
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Re: Hi, I am new to the board
« Reply #23 on: Apr 18th, 2003, 11:06pm » |
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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
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Frank
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Re: Hi, I am new to the board
« Reply #24 on: Apr 18th, 2003, 11:12pm » |
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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. 
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