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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> We are not alone :)
        
(Message started by: Eric1977 on Sep 21^st, 2006, 8:40pm)

Title: We are not alone :)
Post by Eric1977 on Sep 21^st, 2006, 8:40pm

:) Where to begin...what a relief to see that there are more people than we think suffering from these "evil headaches". My boyfriend Eric has suffered from CH since he was 18 and wasn't diagnosed until he was 21. Well he will tell you his story better than I can. I have been with my wonderful boyfriend for a little over a year. He had mentionned his condition a few times but until I witnessed it, I never realized how bad it was. He gets his seasons every year. This year it started around july and boy I cannot describe the horror. Nights and days of screaming, banging....and obviously you all know better than I what he goes through. We live in Arizona and sadly CH are not recognized as a disability. What a shame! I'd love to see doctors and employers stay over for a weekend and see what happens. I wish everyone we know would come to this site and educate themselves instead of criticizing. Many of my friends don't understand why my boyfriend can't go clubbing, can't go out, can't work..."oh, it's just a headache and he's just a lazy bum". I don't think so. People have no clue what is going on. Even myself who lives with a Ch sufferer has no idea of what pain can possibly be. I must say that Oxygen is doing well but doesn't stop them from coming. Every day we live in fear and never know what to expect. Before we had the oxygen or meds, the headaches woud pop. I felt so helpless, nothing I could do or say to make him feel better. He had always warned me that when it comes it's scary but the best thing I can do is to stay away. As hard as it is I did. I'd see him trying to get comfortable on the cold tile smacking his fist on the other side of his head hoping to distract with a different pain. Or he would bruise his legs. I'd go in a different room and cry and sometimes pray hoping it would help. Many people would be scared and run away but his will to live only brought me closer to him and love him more. I will fight with him as long as it takes and never walk away. I'm so glad we found this site and reading people's statements brought many tears to our eyes but it's good to know we are not alone.

Title: Re: We are not alone :)
Post by thebbz on Sep 21^st, 2006, 9:05pm

Sorry you have to be here. Your brief explanation is familiar. Hang in there. Lots of things you can do to help.
Just being there for him is helping. Stay out of the way and do as asked. There is more than O2 out there. You will need a prevent as well as an abortive. Try researching the links on the left and dont be afraid to ask ????, by far the best weapon is knowledge
all the best
jb

Title: Re: We are not alone :)
Post by Richr8 on Sep 21^st, 2006, 9:10pm

Glad that you found us. Hopefully Eric will be along to meet us soon. Is he taking any meds or treatments? There are many things available which can help during a cycle, so be sure to read all that you can on this site and here:
http://www.brightok.net/~mnjday/chtherapy.pdf

I look forwrad to hearing more about Eric's situation, treatments, etc. and hope he joins us soon. If nothing else, here is a safe haven for all of your CH needs, whether it be advice, questions, are just an ear. People here really get it and someone is alway's here to lend support. advice, or just listen.

Title: Re: We are not alone :)
Post by Charlotte on Sep 21^st, 2006, 9:34pm

We have a section for supporters (that's what we call the people who love us) and you can get advice & sympathy there.

You are welcome here, you & Eric. It does feel like you are alone, but now you have us. We all seem to have better days & worse days. It's quite a ride.

Charlotte

Title: Re: We are not alone :)
Post by Eric1977 on Sep 21^st, 2006, 11:11pm

Thank you all for all the support and love...we sure need it. And yes he was on prednosone and verapamil but this year it seems like they haven't really worked though he has been taking them religiously. The O2 is working great, keeps him from screaming, hurting himself and so on. And we just bought the Kudzu today. I think I will also buy the roots and make the tea. We are hopeful and willing to try whatever it takes, besides the lithium...too scary it seems.
It's very difficult to deal with for he is stuck at home all the time and feels useless and depressed. I try to comfort him as much as I can, but he gets very depressed and sometimes no words can ease the pain. But thank you for the replies and we will be on here often. He really wants to write but I kind of took over the computer today...lol! He had no severe attack today which is a true blessing... I wish he could share some of his pain with me sometimes though he confirms he doesn't wish this to anyone and would trade for a missing arm or leg any time! Well....until next time :)

Title: Re: We are not alone :)
Post by Callico_Kid on Sep 25^th, 2006, 8:46pm

Welcome to you both. Wish you weren't here! :) But I am glad you found us. As someone already said, read all you can of the information and ask questions. There are folks here who have become quite knowledgeable about our malady because they had to.
The rest of us kind of lean on them for info.

I understand fully people's reactions to Eric and his inability to work, party, communicate, etc. There is an excellent letter on one of the posts at the top of this section that explains CH to friends, family, coworkers the best of anything I have seen. I tried for years to make folks understand, but couldn't until I printed off that letter and shared it. Those who cared understood and the rest don't matter very much anymore.

Jerry

Title: Re: We are not alone :)
Post by BB on Sep 25^th, 2006, 11:52pm

on 09/25/06 at 20:46:36, Callico_Kid wrote:

Those who cared understood and the rest don't matter very much anymore.

Jerry

Exactly !

And welcome to the family, I am a supporter for my DH so I have done all the things you have done , from crying to feeling despair to praying , so I understand.

Hang in there though, it will pass and then life is beautiful again once more.

Painfree wishes to you both.

Annette

Title: Re: We are not alone :)
Post by MJ on Sep 26^th, 2006, 2:27am

Welcome Home.