Welcome to our home. Your new home

Im writing this to you to give you some encouragement.

I started my "official" journey with ch in Oct 1985 and for the first few years it was an unpredictable hell..........9 years of misdiagnosis, many years of fearing the night, afraid to sleep, afraid of the hammer bashing into my skull shortly after I went to bed and waking screaming, "WTF??"  and wondering what I had done to deserve the beating I was getting.

The night hits stopped for me, for whatever blessed reason, 11 years ago, and my ch settled into an annual routine of October thru January's end.

What I have learned is that, once you think you have your ch figured out, it morphs (thanks for the explanation Guiseppi). So now I face ch in July instead of October. I think I have about  3  weeks before the beast attacks with full force.

What I want you to KNOW WITHOUT A SHADOW OF A DOUBT, is that after all these years, I no longer fear it. I used to sob into my pillow and wonder, 'why?" and beg God to give me a reason I had to face this hell.

Thru ch.com, I have learned in so many ways how to not only deal with ch, but to FIGHT BACK,  How I can prepare myself for what is coming, with information, with meds, alternatives, o2, and whachagotonhand weapons such as caffeine, ice, Red Bull, all the things you'll read about on here. Trust me, my sweet new friends, they work. You just need to find what works for you. You will find it.

Don't give up to dispair. Dont fear. Strengthen yourselves with information and the knowledge of those who have fought this fight for many years. We CAN and WILL beat this bitch.

I see so many new faces and I am so glad you are here, that you have researched your ch and found us, and in that you have found many who truly understand what you are now dealing with: the uncertainty, the realization that you are not alone,  the many questions, the feeling that once your ch is gone, then you will just "disappear and forget you have this" till the next time the beast comes calling. Those of you who will leave,  you will come back again and want/need us to comfort and be here for you. We will be. To those who leave, Godspeed and pf time to you.

To those who stay, grow strong, learn, and know that life will never be the same. Here you are understood, here you are famly and will never have to explain again. Life may never be the same as before ch, but by God, YOU will never be the same: YOU WILL BE STRONGER. . And that is the blessing I wish for you.

PFDAN to you, our newest family members. Welcome, be comforted, feel safe again, BE empowered and know that you CAN live your life again..

With all that I have,
Jen

Thank you!

ninja mom wrote on Jul 5^th, 2008 at 1:00am:

I think that would make a great T-shirt!!

Great post Jenn!!  Welcome newbies!!  Read all the info, ask questions, and make yourself at home.   

Beth

Hey there. This post is more towards the teens who suffer/support on the site. I'm Felicia and my dad has been suffering since I was about 7. I'm now 16. It's been a long hard road for both of us and it's one we're still on. Anyways, I just want to tell the teens that if they want some one to talk to their own age (which is some times easier) then I'm your girl. I'm here if you want to cry, rant, bitch, or just talk. Feel free to PM me any time. I don't know much about the meds but if you listen to the people here I'm sure you can find what you're looking for. I've said many times before and I will say it undoubtedly again: Hang tough, smile at death, fight hell, and refuse to go down anything other than hitting hard and still swingin'. Much love and vibes to you all.

Broken(aka Felicia)

This thread needs a bump.

Yup, that would be the ultimate solution.

Replying to a thread to get it back to the top.

O okay, didn't know that.
Thanx for explaining.

i am not only new to this site . i have never written on=line ever. i use the internet to read and learn. so you have to excuse me if i don't understand how to use this or if i don't understand abbreviations.since my wife found this site about a week ago i have read through it and most of it's links and feel compelled to write and become part of your family( you have already read my mind or have been in the room with me all these years). i am so excited to have found that i am not alone anymore. i have had CH for 27 years and have tried just about every treatment i have read here (ergotamines,indocin,imitrex,painkillers,ice packs,and much more)usually with not very satisfactory results.i just ordered oxygen and pray that it will provide some relief. i know from all my years of experience that nothing will  completely cure or fix this curse as it continually evolves and what slightly works one cycle/episode does not always help the next. what is very exciting is that i now have a place to come to where i am understood( doctors are just practising).i have not found a doctor in all these years that i would recommend.i have tried prescription drugs and have suffered their side effects i now try and control my CH with food supplements and proper eating habits. it has been through trial and error that i have learned many of the insights that are contained on this and other sites, but i did not have the benifit of the web.what i want to say is that if i can help any of you through my experiences please let me.if i can help raise awareness or help raise monies please contact me. i do have many contacts and have raised money for many charities and organisations over the years. it certanly would be pleasing to help with something that i am so familiar with and i know would provide relief for so many. it's amazing that i did not realize all these years that i am not alone. thank you. my name is christopher wallace and my e-mail is achille062@aol.com

Hey there, I'm absolutely delighted to find this site. I don't really want to go over everything that's been said already but it's fantastic to have others to chat to that have the same shite going on in their poor wee heads. I'm fairly lucky to have found you all so soon after being hit by CH. I've only had them for about a year. My boyfriend tries his best to get out of my way when it gets bad but sometimes I want him to stay with me. Not typical I understand, but ya know....just sometimes. I've also had the list of rubbish, stop drinking coffee, stop smoking, just lie down and have a sleep, why don't you stop walking around the garden at 3 in the morning, if you wrap up warm it'll help etc.

My doc is wonderful, she understood what I was trying to tell her straight off. I was sent for a CAT scan to rule out a tumor etc but she was the one who said CH. I never even heard of them before. So far it's been cronic, I'm hoping for episodic, that way I might even be able to go back to work. I had to leave the job I loved because of my stupid head. I was a bar tender, and a damn good one. Low paid but it was a great laugh!! My boss was great too, he said that the job was there for me when I wanted it, but since then I haven't even been able to go out for the night without wanting to kill the entire drinking population I can't see that happening too soon

Anyway, that's all for now. Again, great to find you lot. Chin up lads!!

Yeah, cheers mate! Thanks for the great welcome!

I am so new to all of this.  My husband has just been diagnosed after 5 1/2 weeks of mind numbing pain.  I am coming to grips with this as much as he is being his caretaker and all.  It is so hard to watch a healthy man go from being happy and full of fire to crying and begging to me to help him end the pain in his head.  I am so glad to see there is a support website for me (us) and yes, you were right - this IS my new home...

Hi helpless.  Welcome to the family.  We're glad you found us, but sorry that you had too.  I am a proud supporter too.  I've had that helpless feeling many times.  It's not easy to watch the one you love suffer so.   

Ditto what Linda said.  Get on supporters corner.  More people will see your post and we can get to know you and your hubby better.  Also, get him on the boards too.  It took me a while to get my husband on the boards and he is so happy that he is.

Your not in the fight alone.  There are many CH sufferers and supporters here.  We will all try to help you as much as possible.

Hugs,

Jen