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   Author  Topic: Horrible Experience  (Read 808 times)
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Horrible Experience
« on: Aug 30th, 2007, 1:27am »
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I have been suffering from Cluster Headache for the past 6 years.  I give up my ghost when i have an attach as i dont know what to do with myself.  I am convince this is mu uiltimate death tramp.
The longest i have been been without and episode was my 9months of pregnant with my daughter and i thought i was over it.  What in the world help this problem.  WHen my neutrologist diagnose me i was lost what in the world is this pain.  i can gurantee anyone its worse that childbearing.  
Someone help me.  I am just 33 years old and can understand this why i suffer this way.  My daughter is now 5 and cannot understand my i look like am crying and tears flow from my left eyes.  I feel like tension headache bearing on my neck and i just spend moments squeezing my temples.    I need a cure for this disease.
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Re: Horrible Experience
« Reply #1 on: Aug 30th, 2007, 2:28am »
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I'm sorry to hear you've been getting hit so badly.  After forty years of it, I still don't think it gets any easier.  
You're among friends here.  Among family.  We understand what you're feeling, and what you're going through.
If you don't mind--tell us a little about your headaches.  Let us know what you've tried in order to control them.  Tell us what your doctors have prescribed.  Perhaps we can point to some things you haven't tried yet.
Cluster headaches are terrible, but they can be controlled.  Sometimes it's only a matter of trying the right things, or the right combination of things.  
Wiser people than I will be along shortly to help--in the meantime, I want to welcome you to your new home.
Best wishes,
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
UN solved


Re: Horrible Experience
« Reply #2 on: Aug 30th, 2007, 3:01am »
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Hang in there. Although it does sometimes seem like a nasty curse placed upon us, it can be beat ... as long as you never give up hope. Have faith that there IS something out there that WILL help ease the pain. You MUST keep looking for that something that WILL help. It's out there waiting for you. Now start looking for it !!
Trust me, you're NOT alone in this thing. There ARE others, like me, that have the same problems with pain that you do. There's not many of us, but we are here. This is where we gather ... to speak to each other. To learn from each other. To lean on each other. To help each other.
Stay with us. Post on the boards anytime you feel like it. The light is always on.
Goodluck & Pain Free Wishes
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Re: Horrible Experience
« Reply #3 on: Aug 30th, 2007, 4:40am »
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it's horrible that you ch. It's terrying illness to have. hug  
But remember, you are NOT alone! You'll have lots of supporters right here, every single moment, day and night.
We're here for you, always.
I've had this beast since 2001, and I'm 27. If you want to talk about whatever, feel free to send me email/instant message, whatever.
Wishing you lots of PF time,
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CH happends, Live anyway! PF days to us all!

"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)

"No matter how far out your dreams are, it's possible" (Marketa Irglova)

Annette Alumnus
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Re: Horrible Experience
« Reply #4 on: Aug 30th, 2007, 6:33am »
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Hello Faith2 and welcome,
I am sorry to hear you are having a hard time, but you call yourself Faith for a reason, right ?
There are many many people dealing with this strange condition called clusterheadaches all over the world, some as young as a few years old !! We all struggle, fight and then learn to cope with it, in our own different ways, but together.
My husband started his first cycle last year and we thought we fell into hell. It was a very scary time for both of us, not knowing how to deal with it all. When we were told that there is no cure for this condition, we thought the world ended.
However, the world didnt end. In fact a whole new world opened up. Right here we met the most incredible people that we now call family, our brothers and sisters. Many of them are very very dear to my heart. We learnt everything we needed to know about how to deal with this, from here. The support is amazing and the knowledge available is fantastic. We did find the right med combo that worked well in the end and he is now out of cycle, painfree and carefree, as if nothing had ever happened.
Looking back, I realised that it wasnt the meds that made the most of the difference though. It was the attitude we developed with the help and guidance and support of the kind people here, who had walked the path before us. Finding the right meds is only part of the solution, developing an attitude that " this will NOT stop me living my life" is what carried us through.
Dear Faith2,
I am sure you can win this. I am sure you are stronger than CH. You are a mother ! You have the most valid reason not to give up, not to let this beast run your life: your 5 years old daughter. She might be scared now and not understanding because she feels that emotions from you. Once you have pulled yourself together, with the help and support of the wonderful family here, you will be walking tall, without fear and will be able to look the beast in the eyes and kick his a** to the kirb. You will see then how proud your daughter will be of you, and what an invaluable lesson it will be for her : that one never, ever gives up! That no matter how difficult the challenges are, one can overcome them all with determination.
Have faith in yourself, that you too will get this under control, like many people here who have gone before you. Have faith in your daughter, that she will be brave and strong enough to understand it all, despite her tender years. Have faith in life, that it goes on with all its beauty, and CH will not be able to change that.
Take the hands that are extending to you now. Draw on their strength and knowledge and support. Ask as many questions as you need to and you will for sure find the right weapons to chop CH to pieces.
Firstly share with us your story, your journey, the things you have tried and let us walk with you through this.
Painfree wishes and all the best.
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Re: Horrible Experience
« Reply #5 on: Aug 30th, 2007, 10:11am »
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Hey Faith,
Heard you needed a little help.  Im glad you're here...there is NO BETTER PLACE you could've come.
I have had CH's for fourteen years now, and Im chronic.  It may seem hopeless, but I assure you, it is not.
There are so many others here who suffer with the same thing..and you will see, we live our lives...have lives.  We also understand how helpless and hopeless you're feeling...but you're going to be ok...
As the others have said, please tell us about your journey.  And you are in my prayers as well as everyone else's here.  Glad you found us.
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein

"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot

"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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Re: Horrible Experience
« Reply #6 on: Aug 30th, 2007, 2:13pm »
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You have the most important reason to fight for: your little one.  
I have a 5 year old too and she knows that Mommy has a booboo on her head and when I cry is because the booboo hurts. Your baby will understand, our children are our best supporters.
You are not alone on this. We are here to help, to all times...
Hang on, be strong, your little princess needs you more that anything...
please come back and tell us what you are taking .
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Believing is just the beginning!
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