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Supporter's Corner >> Supporter's Corner >> Hello
(Message started by: Dfanch1 on Mar 6th, 2007, 12:47am)

Title: Hello
Post by Dfanch1 on Mar 6th, 2007, 12:47am
Hi folks. I am a newbie poster but have been checking in here on this website for about four years. My wife suffers from these horrible headaches and is in the beginning of a new cycle.

I have been trying to find ways to cope with her having cluster headaches for our entire time together (we dated for three years and were married in September). I have gone to therapy for a whole year and have come a long way in how much I allow it to affect me psychologically, but it's still hard to watch someone you love scream in agony like that day and night, as you know.

I'm not really going to talk about any specific issues I have right now, as I just wanted to say hello and take this first step towards a greater understanding of these headaches and how they affect the sufferer and those around them.  I only recently discovered this "support" section of the website and am encouraged that I can learn from so many other people like myself who watch helplessly as their loved ones suffer.

My kind regards to all of you.
Dennis

Title: Re: Hello
Post by daniel96 on Mar 6th, 2007, 1:37am
yeah your wife will need your fullest support. do read up more on the current CH's situations and how they cope maybe its do helps you in someway. If you have any questions feel free to ask. We are all part of a family here.  :)

Title: Re: Hello
Post by Dfanch1 on Mar 12th, 2007, 12:40am
Thanks very much! It's nice to know we're not alone when dealing with these seemingly rare things.  Take Care.

Title: Re: Hello
Post by BB on Mar 12th, 2007, 1:08am

Hello Dennis and welcome.

My name is Annette and I support my husband Daniel who has CH. He just finished his first diagnosed cycle of CH which lasted more than 6 months. He is still getting some migraines but they are a far cry from the CH  hits.

Being a supporter can be really tough and lonely at times. Please do not hesitate to PM or email me anytime you want to talk. There is a famous saying here that only a CHer really understand what a CHer goes through, I would also say that only a supporter understands that another supporter has to cope with.

Concentrate on the two of you and on the painfree time, hard as it is, try not to let the CH hits get to you. Just walk away when its too much, throw it to the wind. Its there and its a physical thing, but it will go, it always does. Life goes on and life can be as beautiful, if not more , than ever.

Take care of yourself and your wife. Painfree wishes to both of you.

Hugs

Annette

Title: Re: Hello
Post by Dfanch1 on Mar 12th, 2007, 10:22am
Hi Annette. It IS lonely, but I will never forget that it is always worse for her.

Sometimes I wish they would change the name away from Cluster "HEADACHES", because when I try to talk about it, and explain them to people who never heard of them, they hear "headache" the always go "oh like migranes? Have you tried Excedrine Migrane"?........ When the cycles are bad and I'm more edgy than usual, I want to strangle these people for their ignorance, and then I realize that only four years ago I had never heard of these things either.

The main problem I'm having is that I'm still learning to cope with these things. She has been suffering from them for over ten years, and has gotten quite good at snapping out of it when they are over, but sometimes I'm still traumatized for hours afterwards,  all day at times.

Not what she needs, I know. Over the years I have learned to disassociate, and will usually sit there with her and rub her back or let her squeeze my hand while entering an almost catatonic state of emotionlessness. I used to cry and get angry at God or whoever. It sounds cruel and heartless but It's the only way I can cope and not let it hold us prisoner. As it is they are life altering enough.

I can think of some terrible people in the world that I wouldn't wish these headaches on.

Title: Re: Hello
Post by Margi on Mar 12th, 2007, 10:54am
Hi Dennis, I'm so sorry to hear that you are one of us...it's not an easy life, is it?  But...it IS survivable - never forget that!

I have to comment on something you said here:


on 03/12/07 at 10:22:39, Dfanch1 wrote:
She has been suffering from them for over ten years, and has gotten quite good at snapping out of it when they are over, but sometimes I'm still traumatized for hours afterwards,  all day at times.


That's something you're really going to have to try to work on, ok?  Think how it's making your wife feel, if nothing else.  She's most likely feeling consumed with guilt that she's traumatizing you.  She doesn't need that added on top of all else that she's going through.  You've seen a lot of cluster attacks - you know that they DO end.  In order to survive life in Clusteropolis, you have to learn to live life to the fullest in between attacks.  Put the beast away in a closet until he gets out the next time and don't even let yourself think about it until you have to.  Sometimes we supporters HAVE to put on a brave face when all we really want to do is just sit down and cry.  No time for that, Dennis - it's taking away the pain free moments you could be sharing with your wife.  Please try, ok?

My heart is with you - believe me, I'm not criticizing you.  Just offering you a survival tip, ok?  Honest.  

Hugs to you - I've been where you are.



Title: Re: Hello
Post by BB on Mar 12th, 2007, 2:43pm

My heart goes out to you Dennis. I know what you mean when you said its traumatising. Yes it can be. I remember the times and days when I couldnt deal with it anymore and wandered the streets for hours or sitting in my car wailing my eyes out.

I have asked God too what have we done to deserve it. We are both loving, caring people who have always try to do the right thing by everyone. It doesnt seem fair at all. I have driven down the streets looking at people walking by and wanting to scream at them to wake them up to the fact that some of us are suffering this much. Yup, I have been in your shoes Dennis.

But guess what? I learnt how to cope! I talked day in day out with people here. I talk to them on MSN, on Skype, on the phone, emails, messages .... I asked everyone lots of questions about their conditions and how they coped. With time, I learnt 3 very important things:

1- Pain in life is inevitable. There are always people who are worse off than us. Even people without CH have their own set of pain. BUT suffering is optional! We all have some type of pain, but we dont all need to suffer. Suffer is a state of mind and you can change the state of mind to stop the suffering.

2- Life goes on. Regardless of how terrible the pain is, or how long it goes on for, it will stop. Whats the point of us deliberately dragging the pain on? By allowing yourself to be traumatised for hours afterwards, you are dragging the pain on. Its all a matter of mind over matter. A thought can be changed in a heartbeat, suffering can also be stopped in a heartbeat. You just need to decide that you wont be suffering anymore.

3- Be a warrior, not a victim. Fight not give up. Allowing the despair to well up inside means that you have given up. Its only a condition, a physical phenomenon, it can be controlled by medications and determination. There are many many people here who have had the condition for 30-40 years, they live a pretty normal life, because they have decided to live life regardless of the pain. They have CH, CH doesnt "have" them. Model their thoughts.

Often we suffer because we are moaning some losses. The loss of our intimate time together, the loss of certain freedom and autonomy, the loss of an innocent view of the world that everything should be the way we want it to be ... Let them go Dennis, let go of what you think should be and embrace what you have.

You have a wonderful wife who appreciates you, you have  marriage built on love, support and understanding, you have a level of closeness and intimacy that not many couples have ... CH sorts of put things into perspective .... Petty things in life dont have any meaning to you now, you and your wife have reached a higher level of connection ...

Believe it or not Dennis, how much you will or will not suffer lies only in a thought and you do have total control over your thoughts. Choose the ones that you want.

Hugs


Annette

PS: talk to as many people here as you can spare the time, its life saving and soul opening to see into others pain and suffering too, suddenly our own pain and suffering pale by comparison ....

Title: Re: Hello
Post by Dfanch1 on Mar 13th, 2007, 12:38am
I appreciate all the responses.

Unfortunately I feel in that "catching up" and shedding a little light on my own situation with my wife, I have misled people into thinking I am "suffering" and am in the throes of trauma right now. I have learned a lot in the last 3-4 years about the nature of these headaches and how much and how little I can allow them to affect me.

I am not on the defensive here, so don't get me wrong. I completely understand that my wife is the one with the headaches, and in my role as a supporter it is vital that I do not make it worse for her.  There was a time when the whole thing was new to me and I DID react the wrong way. Two years of therapy helped a great deal. To make matters worse I was diagnosed with severe clinical depression and I had a lot of work to do on myself and undoing a lot of behavioral patterns that had been controling my life since I was a teenager. In a way, her headaches were the catalyst for me to get a handle on my long lived depression, and learning to love myself more, and to get a better perspective on the important things in life. It was only then that I could truly take on what was happening to her and be the "supporter" she needs. I didn't even discuss marriage until I had control of that. It was kind of like selling someone a car that doesn't run right, if you know what I mean.

I simply was very to happy to see that there is a place on this website for people like me who live with people with these headaches, and felt like maybe I should talk a little about it here.

My post was a sort of "nutshell" of what it's been like for me in a three or four year period, and wasn't too chronological or very revealing about where I am actually at with all this.  I truly understand how defensive people can be for those who are actually suffering from these headaches, and if I came off like I am worrying a little too much about "me", I am truly sorry. Hopefully I have clarified my situation a little better, even if it involved me revealing more about my own life than I intended. God knows none of us wants to feel alone in this, and that's pretty much all I was trying to accomplish by making myself known as yet another supporter of someone suffering from Cluster Headaches. My wife knows I am not going anywhere, and it doesn't in the least change one bit of how I feel about her! That's enough for me.

Again, thanks for the responses and your time. I really do appreciate it!




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