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Topic: CH without any help (Read 385 times) |
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barry_sword
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CH without any help
« on: Dec 19th, 2006, 7:05am » |
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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
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George_J
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White-Breasted Nuthatch
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Re: CH without any help
« Reply #1 on: Dec 19th, 2006, 9:57am » |
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on Dec 19th, 2006, 7:05am, barry_sword wrote: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 |
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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
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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
Debonair.
(Ellen)
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E-Double
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Are we ourselves?
  
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Re: CH without any help
« Reply #2 on: Dec 19th, 2006, 10:48am » |
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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
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Josh W
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Love your neighbor as you love yourself.
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Re: CH without any help
« Reply #3 on: Dec 19th, 2006, 10:59am » |
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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.
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barry_sword
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Re: CH without any help
« Reply #4 on: Dec 19th, 2006, 6:23pm » |
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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
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kcopelin
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good grief
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Re: CH without any help
« Reply #5 on: Dec 19th, 2006, 6:52pm » |
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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
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Words count, chose carefully.
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barry_sword
CH.com Alumnus
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Mountain Biking Keeps Me Sane
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Re: CH without any help
« Reply #6 on: Dec 19th, 2006, 7:10pm » |
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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
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Richr8
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Re: CH without any help
« Reply #7 on: Dec 19th, 2006, 7:22pm » |
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on Dec 19th, 2006, 10:48am, E-Double wrote:| and soon after I went to a neurologist and finally a proper diagnosis |
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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. 
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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