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        New Message Board Archives >> 2006 General Board Posts >> CH without any help
        
(Message started by: barry_sword on Dec 19^th, 2006, 7:05am)

Title: CH without any help
Post by barry_sword on Dec 19^th, 2006, 7:05am

Hello. I was just wondering how many CH were out there without info on this condition. I have found through my nero and all of you's some comfort and lots of knowledge about our condition.

I am in cycle right now but thxs for knowing about Varapamil I am getting shadows only right now.

I know what it was like before I knew what these HA were and sure felt alone with the suffering, and was thinking about all the people out there that do not have computers or even doctors to help them.

I just want to thank everyone for being there and many prayers for those less fortunate and are all alone with this. :(

Barry

Title: Re: CH without any help
Post by georgej on Dec 19^th, 2006, 9:57am

on 12/19/06 at 07:05:00, barry_sword wrote:

I often wonder about this myself, Barry.

I suspect that there are a very great many of us who deal with this alone and in silence, whether undiagnosed, misdiagnosed, or simply uninformed. There are a number of very fine people here who've made it their business to get the word out about CH to the medical community--my hat is off to them. They've been doing a wonderful thing.

Perhaps being married to a historian has made me more cogniscent that people who lived in the past were real people who lived real lives in a different time. CH has undoubtedly existed for thousands of years--who can say how many lived and died with this condition when no one knew that it was real, and when no more-or-less effective treatments existed? How many of them dealt with it alone in any way they could? It's painful to think of this.

As for the living, I think we might--and ought to--search out as many as we can find and try to steer them, as individuals, to some sort of help. I know that when I run across blogs, or posts in other places, or personal websites where people talk about head pain (familiar-sounding head pain) I try to send a note suggesting CH.com to them as a place to explore what their pain might mean. It's not diagnosis or treatment, but perhaps its a starting place for a few people here and there. As more and more people gain access to computing and the net, more and more people who might benefit from effective help and this community will come to be known.

May it continue.

Best wishes,

George

Title: Re: CH without any help
Post by E-Double on Dec 19^th, 2006, 10:48am

I had these "allergies" for over a decade consistently.

Just used, steam, ice, bandanas wrenched around the skull and the night air.

Many go mis/undiagnosed for years.

My wife found this place and soon after I went to a neurologist and finally a proper diagnosis

Title: Re: CH without any help
Post by nosnowmen on Dec 19^th, 2006, 10:59am

I was one of those people that was alone in my pain. I have delt with HA from the time I was 7. When I was 18 I got my first CH. I emediatly knew there was a difference. It seemed that nobody understood. I have battled this for 11 years now, and this is the first cycle that I have been through that I could do something about. I would like to thank all the peolpe here for theinfo and support. For with knowledge come power. I can fight back now. Thank you all again.

Title: Re: CH without any help
Post by barry_sword on Dec 19^th, 2006, 6:23pm

Thxs. I did not have a computer until one year ago, and when my cycle came back this time my wife Angie told me she found a CH site and typed it in. Here I am, everyday day, and any spare time I have I am here reading, learning and talking.

Angie is dusting the cobwebs off me so I will end this for now.

Barry

Title: Re: CH without any help
Post by kcopelin on Dec 19^th, 2006, 6:52pm

I was thinking the same thing last night. If a certain percentage of people have clusters-does that mean people everywhere, in every conceivable situation? Guess it does. And here I sit, in the USA, with modern meds and alternative treatments and a working husband, whining about the ineptitude of my neurologist (don't get me started :-/) when there may be, in fact probably is, some 17 year old boy in Pakistan getting slammed with these. No access to health care, or proper nutrition or the Internet so he can find out what he has....just unrelenting excruciating pain. Imagine, we only reach those with computer access and Internet....that's why those little brochures that OUCH has out are so helpful. Tell ya what, if each one of us took a handful of those brochures to our local neurologist or primary care physician it would help spread the word a bit more.
Thank God for y'all!
PFDAN
kathy

Title: Re: CH without any help
Post by barry_sword on Dec 19^th, 2006, 7:10pm

Here I sit also with modern everything and can't help but think some-one some-where is suffering alone and no meds, no help.

That really hurts me.

Barry

Title: Re: CH without any help
Post by Richr8 on Dec 19^th, 2006, 7:22pm

on 12/19/06 at 10:48:48, E-Double wrote:

and soon after I went to a neurologist and finally a proper diagnosis

same here, but I can't say that, other than the support here. it has helped me. Please don't get me wrong, the support is priceless and of more value than all of the meds on earth. I'm really beginning to wonder if all the meds really do anything other than to distract you whike the beast runs it's course. The only thing that seems to work for me are the pred tapers and as I get older, the effects seem to take more and more of a toll. I have a very long recovery period after each season mainly, I think, due to the meds.
Please don't hold this against me when in two weeks I'm dropping prednisone by the handful. :)