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Topic: Ok, Now lets talk CH.COM...... (Read 1750 times) |
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Mastifflvr28
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Re: Ok, Now lets talk CH.COM......
« Reply #25 on: Dec 11th, 2003, 11:59pm » |
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dang...read this after I posted in E's thread.
I'll answer the questions, then I'll paste what I posted in Elaine's thread.
**********************
What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed? yes
Did you have a Neuro? no
Did you have meds? yes, fiorecet (good for puking and sleeping afterwords
Did you think you were alone in this pain? yes
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? yes, ones that work
Got a Doc? yes
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? bought a computer, searched for clusterheadaches
And now here's how I REALLY feel 
Pasted:
Someone asked a while ago...where would we be without this board? Is the reason I have clusterheadaches was to MEET all of you great people??
I ponder that...
I'm not a social person, in person. I really don't have any best friends. I don't go do anything with anyone on the weekends...except for Kaleb, and he's turning into a teenager and he's a totally different person now.
You guys ARE my best friends. You guys are the people I spend my time with. I consider this as much "quality time" as I do in physical form.
I feel I know the inside and outside of a lot of you...and I'm not sure I could feel that if I just knew you in person...and not online.
Just some random thoughts,
damn I do love this family!!!!
Mast
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sherryberry
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Re: Ok, Now lets talk CH.COM......
« Reply #26 on: Dec 12th, 2003, 12:33am » |
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I started this ride around age 10 or 11 which would have been '71 or '72.
Was not diagnosed until around '87 or '88 (never kept notes) Once diagnosed, and once I had internet, I did a search with the old search engine that started with an "I" (infosomething?? It was the best until Google) and found this place, I think in '98 or '99.
I have never had a neuro. I was put on a lot of the old migraine meds without ever being diagnosed as migraine. (They could tell it wasn't migraine, but didn't know what it was. But since it was "kind of" like migraine, I was put on Elavil, Inderal, Ergostat, etc)
Once I found this place, I found out about Imitrex (tried, didn't work) Verapamil, Prednisone (tried worked while using only) and O2 (going to try).
But the most amazing thing I found here was other people who shared this very rare (my doctor's words) disease. I thought since I was in the "rare" category and then because I was a woman, the "extremely rare" category, that I would never know anyone else with this.
Interestingly enough, one of the first people I met was Elaine. A woman with CH. Not only did she have CH, she was Chronic!! I didn't even know at that time that there were people who were chronic. This woman suffered from this horrible pain.... ALL THE TIME!!!
Right then and there, without even knowing it, I became attached to CH.com and the people who populated it.
I may never get a neuro. I may never do the meds (until they find some without horrible side effects) But, I will never feel as isolated and as alone as I felt before I found this site.
Even though I might not come here every day... I still know that, here, on this site, I can alway find people who truly KNOW what the doctors say is the worst pain ever endured by man.
Love you guys!
Thanks Jonny.
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zenerzoo
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Re: Ok, Now lets talk CH.COM......
« Reply #27 on: Dec 12th, 2003, 12:37am » |
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Here we go:
Part 1.
Diagnosed: Yes by an er doc no less. This is my first cycle and I only went 1 Week without a diagnoses. Had to wait another week without any preventive meds in order to find a gp.
Neuro: No , My gp doesn't think it would do any good.
( can't seem to find one to see me without a referall and I have no insurance)
Med's : Found ch .com before going to my first appointment with the gp. I pretty much knew what should be tried and what wouldn't work. I got verampamil and indo. She wouldn't give me o2.
Alone?: The first week before going to the er I was sure I was dying. A person couldn't possably have this much pain and still be healthy. I already knew that narcs wouldn't work because I had some off my worst attach taking vicaden for a tooth that had to be extracted. I was sure that I would go to sleepone night and my brain or eye would explode instead of me waking up in the worst pain I have ever felt. I felt guilty for putting the people close to me through the pain I was feeling it hurt to just look at the hopelessness on the faces of people who love and care about you and to think that that look is there because of you. Alone and scared doesn't come close to explaining that feeling of total isolation.
part 3 :
How ch.com has helped me :
After the trip to the er I spent a lot of time reading about ch. I knew than that there was meds that could help and that there is many people who has suffered this for many many years. I read in disbelieve of people who have suffered this pain for 20-30 years took courage in the fact that life could be good again and though the medical world isn't a lot of help they do try . I think most medical people just can't grasp the amout of pain we endure.
Got med :
I knew for reading on ch.com the meds I was willing to try I learn of lots of things to help make it more bareable. And alternative treatments to try. Ch.com has been a valueable source for all this imformation.
got doc:
Found one.
Part 3 :
How I found ch.com :
After my er visit I told my best friend that I had clusters and the next morning I had this site the O.U.C.H site and a lot of other imformation in my e-mail. She had stayed up half the night doing all this research for me so I could start learning right away. She has been one of my biggest supporter's and without her I would still not have any o2.
I hope this is what you were looking for Johnny It;s the I can do with a ha.
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Unsolved
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Re: Ok, Now lets talk CH.COM......
« Reply #28 on: Dec 12th, 2003, 1:09am » |
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Were you diagnosed? Yes...During my 3rd cycle
Did you have a Neuro? Yes...still the same doctor for over 10 years. Probably saved my life. Super doc !
Did you have meds? Yes
Did you think you were alone in this pain? *YES* .. I still find it hard to believe that anyone else goes through what I do (sorry).
Part two:
How has CH.COM helped you, by this I mean:
Got meds? No
Got a Doc? No
But...I'm glad CH.COM is here !!
Part three:
How did you find CH.COM? Actually...A neurlogists from U of L gave me this address
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brain_cramps
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Re: Ok, Now lets talk CH.COM......
« Reply #29 on: Dec 12th, 2003, 1:16am » |
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on Dec 11th, 2003, 6:22pm, jonny wrote:What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed? YES - 1983
Did you have a Neuro? at one time, but not for 5 years
Did you have meds? at one time, but not for 5 years
Did you think you were alone in this pain? NO - had been to a seminar for a test-study
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? med-free
Got a Doc? NO - but going to see one in 2 weeks - hopefully getting o2
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? google
And you lurkers out there....you could at least answer part three.
Thank you for your time
..........................jonny
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Charlie
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Re: Ok, Now lets talk CH.COM......
« Reply #30 on: Dec 12th, 2003, 1:17am » |
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Were you diagnosed? Yes
Did you have a Neuro? Yes
Did you have meds? Yes but not for CH at the time
Did you think you were alone in this pain? Oh yeah. Thought it was a stroke or malignancy for a few days.
2
How has CH.COM helped you, by this I mean: I was dumbfounded to find so many. Tons of information. For the first time I met someone who knew WTF I was talking about aside from creepy neurologists.
Got meds? Not needed
Got a Doc? Had 8 altogether. 2 for ch
Part three: (Easy)
How did you find CH.COM? Curious about CH and can‘t leave. Clusterheads need all the support they can get. Amazing place..
Charlie
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Darleen
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Re: Ok, Now lets talk CH.COM......
« Reply #31 on: Dec 12th, 2003, 8:00am » |
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Ask and ye shall receive:
Were you diagnosed? Yes John was
Did you have a Neuro? Yes
Did you have meds? Yes
Did you think you were alone in this pain? For sure
How has CH.COM helped you, by this I mean:
Got meds? Luckily we had them
Got a Doc? Had one already
How did you find CH.COM? Surfin the net when John was having a really bad episode.
CH.COM has helped us with simply knowing that we are not alone in the pain. There are actually other who suffer like John does and also support like I do. It still amazes me every time I read the posts that there are so many people out there like us.
Thanks to all who are here.
D
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jadedgazer
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Re: Ok, Now lets talk CH.COM......
« Reply #32 on: Dec 12th, 2003, 8:49am » |
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Were you diagnosed? yes (a few times, with a few things, before they got it right)
Did you have a Neuro? yes
Did you have meds? yes
Did you think you were alone in this pain? yes
Part two:
How has CH.COM helped you, by this I mean: This site, all of the information here, all of the support that can be found here is so wonderful. I AM NOT ALONE! I want to thank each and every one of you for being here because it has meant the world to me. It has lifted me at my lowest moments just to be able to visit here and know that there are people here who truly understand where I am coming from. All of the advice about treatments is invaluable to those of us who are still learning about what it is that we are dealing with. Some of you "old timers"  simply have no idea how much it means to us to be able to turn to you for advice. Thank you for being here.
Got meds? yes, have O2 now 
Got a Doc? a smarter one
Part three: (Easy)
How did you find CH.COM? cruisin' the net (most likely surfing Yahoo!)
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| « Last Edit: Dec 12th, 2003, 8:57am by jadedgazer » |
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sandie99
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Re: Ok, Now lets talk CH.COM......
« Reply #33 on: Dec 12th, 2003, 9:22am » |
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Ok, wanna talk? You got it, Jonny....
Were you diagnosed? January 2003.
Did you have a Neuro? Yep, ans saw another one yesterday.
Did you have meds? I have tried vermin, relert (used to help), zomig nasal spray, predisolon, maxalt (helps), pizotifen ja next one, starts with i, idotrimen or something like that is yet to be tried (I start on Sunday)
Did you think you were alone in this pain? Absolutely! Until I found ch.com, that is.
Part two:
How has CH.COM helped you, by this I mean:
Got meds? no at the moment, but lots of good advice and tips I am going to try
Got a Doc? nope
Part three: (Easy)
How did you find CH.COM? If I recall correctly, this site appeared to my screen after typing "clusterheadaches" to Google search
And I am not leaving this lot that quickly! I do hope that my headaches will...
Best wishes & PFdays,
sandie99
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ozzman
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Re: Ok, Now lets talk CH.COM......
« Reply #34 on: Dec 12th, 2003, 11:04am » |
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on Dec 11th, 2003, 6:28pm, BobG wrote:What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed? Yes
Did you have a Neuro? Yes
Did you have meds? yes
Did you think you were alone in this pain? Yes
Part two:
How has CH.COM helped you, by this I mean:
I have learned many things. I am not alone. I am not a freak of nature. I now know ALOT more about drugs, O2 and alternative treatments for clusters.
Got meds? Already had some.
Got a Doc? Already had one.
Part three: (Easy)
How did you find CH.COM? Surfin'
Thank you for your time.
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What Bob said...
How did it changed me? Not only am I still around, but decided to get involved started the PANJ OUCH Chapter and have continued to be involved with OUCH in different capacities. Oh and yah I *do* have a life ouside CH.com and OUCH /OUCH PANJ, quite busy actually.
Ozzy
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Killroy 2.0
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Re: Ok, Now lets talk CH.COM......
« Reply #35 on: Dec 12th, 2003, 11:17am » |
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Were you diagnosed? Just diagnosed after 12 years of thinking I was a wack job!!!
Did you have a Neuro? NO
Did you have meds? All kinds but none that helped
Did you think you were alone in this pain? Yes!!!! 
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean: Had I not found this sight, I would have thought my new doc nutzzzz  , O2 who Knew??? (not me) and she took away all the pills I was popin'
Got meds? No
Got a Doc? Yes
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Yahoo.com
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athos
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Re: Ok, Now lets talk CH.COM......
« Reply #36 on: Dec 12th, 2003, 11:30am » |
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Were you diagnosed? I was diagnosed with many different things until I finally found this place, learned what I was out there, and armed with the info worked with the doctors on what was happening.. Then I met the folks at Mayo and the keyed right in.
Did you have a Neuro? Yes
Did you have meds? Yes
Did you think you were alone in this pain? I knew there were others, others in my extended family have have migraines etc, but early on I did not think that anyone could understand what was happening... It was not until I found CH.com that I felt that there were others that know what the hell is going on.
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? It has helped to find other resources
Got a Doc? no
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Researching headache symptoms on google, and then presto... then I was here, the guy that does not like to do dishes..
Athos
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Roxy
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Re: Ok, Now lets talk CH.COM......
« Reply #37 on: Dec 12th, 2003, 11:37am » |
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Ok,....Enough of the fun stuff....sex, war, religion Come on jonny....please....let me talk about sex
What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed? Not for a year or so
Did you have a Neuro? Went through some real dumbass's
Did you have meds? Nope
Did you think you were alone in this pain? Yep, thought that there was really something weird going on with me (ok....weirder than normal)
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? Being chronic, I can literally say ch saved my skin.
Got a Doc? Yep
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Got the diagnosis, sat down and typed in clusterheadaches. Then the most wonderful thing happened......I started meeting people, who in the last year, have literally changed, enriched and fulfilled my life in ways I can't begin to describe. I always had a pretty busy and full life before ch, but the friends I have made here, I can't imagine not having met them or not having them in my life from now on.
CH.com is now part of my life, a damn good part, and it always will be. I just love you guys too much.
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BillyJ.
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Re: Ok, Now lets talk CH.COM......
« Reply #38 on: Dec 12th, 2003, 1:05pm » |
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Were you diagnosed? NO
Did you have a Neuro? Yes,but for migraines not CH.I didn't
know what they were or that they'd be back
Did you have meds? none for CH
Did you think you were alone in this pain?Yes.
it's nice to know that I'm not alone,but it is sad that there
are so many others in this CH hell.
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:Saved my life
and whats left of my sanity.I'll never be able to express
my grattitude to DJ for starting this site,and to all of you
for being here
Got meds? YES
Got a Doc? yes
Add inGot friends who understand the beast?Got support?
More than I ever could have hoped for!
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? I typed "Suicide+headache"
in the search bar.(at that time I had a loaded 44 setting
on top of my monitor just waiting for the next hit)
The 1st posts I read said"suicide doesn't stop the beast
it just keeps us from dancin" that made me think again.
The 2nd post was about O2!!!! O2 is the'silver bullet'
for my beast.I had been seeing my neuro for about a
year for migraines when that cycle started,the day after
finding this site I walked into her office while geetind hit
and managed two words (Oxygen,clusters!)She hooked
me up on the spot.After the hit she asked me why I never
told her I had CH,I said until last night I didn't know that
they had a name or that they would keep coming back!
Enough rambling from me.
Pain Free Wishes To ALL,
Billy
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ZAIRA
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Re: Ok, Now lets talk CH.COM......
« Reply #39 on: Dec 12th, 2003, 2:53pm » |
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What I want to know is where were you before you found CH.COM, by this I mean:
Were you diagnosed?
Yes...
Did you have a Neuro?
Yes... he is my second dad...
Did you have meds?
Yes...
Did you think you were alone in this pain?
NO! I've ever thought that in the world there is someone like me "unlucky"...
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds?
Yes...
Got a Doc?
No...
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM?
By Riccardo...
Thank you for your time
Thank you to be here... I love you all... 
..........................jonny............... Zazi
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echo
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Re: Ok, Now lets talk CH.COM......
« Reply #40 on: Dec 12th, 2003, 3:02pm » |
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Were you diagnosed? 1985/86
Did you have a Neuro? Three over the years. The one I have now actually knows what he's doing.
Did you have meds? I've run the gammet. Dosage alterations, combo platters, but presently using none. Everything and combination of were not doing the trick any more. The side effects were killing me and my marriage.
Did you think you were alone in this pain? Yes - years ago -- no one could relate to what I was dealing with.
Part two:
How has CH.COM helped you, by this I mean: Friendships, phone calls. Knowing I'm not playing this game alone
Got meds? abortives only
Got a Doc? Yes. GP and Neuro are great.
Part three: (Easy)
How did you find CH.COM? Some search engine before the site changed.
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JDH
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Re: Ok, Now lets talk CH.COM......
« Reply #41 on: Dec 12th, 2003, 3:19pm » |
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Were you diagnosed? yes in '85
Did you have a Neuro? Yes...at least he said he was.
Did you have meds? Various meds over the years w/out much success.
Did you think you were alone in this pain? oh yeah, for about 12 years I always figured I was the only one going through this madness.
You get where im going with this.................................................................... .. ummm, no
Part two:
How has CH.COM helped you: it keeps me off the streets at night.
Got meds? I found out about Imitrex, o2, and 'shrooms through some of the people here.
Got a Doc? a GP a Neuro and a headache specialist.
Again, you know where im going with this.................................................................... .nope
Part three: (Easy)...that's what you think.
How did you find CH.COM? through a search engine...prolly Alta Vista or Yahoo.
Jim
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| « Last Edit: Dec 12th, 2003, 3:27pm by JDH » |
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cathy
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Re: Ok, Now lets talk CH.COM......
« Reply #42 on: Dec 12th, 2003, 3:22pm » |
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Answering for Wes...
Were you diagnosed? Just....after 4 years of hell..
Did you have a Neuro? Yes
Did you have meds? Imitrex Just
Did you think you were alone in this pain? Yes
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? Yes O2 and lots of info.
Got a Doc? For what he's worth yes
the emotional support and the friends I have made are the icing on the cake, no other family like this on the net!!
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Yahoo search
the emotional support and the friends we have made are the icing on the cake, no other family like this on the net!!
Jonny.... 
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Re: Ok, Now lets talk CH.COM......
« Reply #43 on: Dec 12th, 2003, 5:30pm » |
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Were you diagnosed? Yes, at age 17 by my GP. He told me I had 'classic clusters' and that they could be a bear to treat.
Did you have a Neuro? I couldn't afford to go to a neuro.
Did you have meds? Tried various meds with some success until I became chronic in '98 - then I seemed to be unresponsive to most meds.
Did you think you were alone in this pain? Completely! Nobody understood what I was going through. I felt lost.
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? I learned alot about meds and alternative treatments.
Got a Doc? Still trying to find a good neuro. It is almost like trying to find a needle in a haystack.
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? A friend of mine did a search one day and found this site. He turned me on to it - and it blew my mind when I read some of the posts. Yes, other people DO have this. My sis in law read some posts and said "If I didn't know any better, I would swear you wrote these." as the posts echo'd what I had been trying to tell people all along.
I found that not only am I not alone, but also am not the only one whose life has been devastated and thrown off-course due to CH. Before finding this site, I had lost everything, including the will to live. This site gave me something back that, without it - I would be dead by now. It gave me hope. It still gives me hope. It proves to me that something good can come out of something this horrible.
Peace,
Carl D
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Cerberus
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Re: Ok, Now lets talk CH.COM......
« Reply #44 on: Dec 12th, 2003, 9:16pm » |
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were you diagnosed? YES, with everything BUT CH.
Did You have a neuro? NO
Did you have meds? YES, but none that worked worth a shit.
Did you think you were alone in this pain? OH YEAH DEFINATELY!
Part 2:
YES AND YES
Part 3:
we came home from the docs after the "O2 experiment" and Woobie went to work searching the web for info. Landed here and been here since.
Peace,
Rainman
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| « Last Edit: Dec 12th, 2003, 9:17pm by Cerberus » |
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Lori
New Board Hall of Famer
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Posts: 526
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Re: Ok, Now lets talk CH.COM......
« Reply #45 on: Dec 13th, 2003, 12:58am » |
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Were you diagnosed? No
Did you have a Neuro? No
Did you have meds? No
Did you think you were alone in this pain? Yes
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? Yes
Got a Doc? Yes, but moved so now looking for a new and knowledgable doc..first prospect wasn't what I want in a doc
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Did a Search on Cluster headaches.
I am truly thankful to DJ for having this site exist and to all who contribute here to help newcomers get the information they (I ) so need! I would have been tortured again my last cycle if I wouldn't have found this site. So, thank you!
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| « Last Edit: Dec 13th, 2003, 1:04am by Lori » |
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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mikeyd
New Board Veteran
 
Gender:
Posts: 102
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Re: Ok, Now lets talk CH.COM......
« Reply #46 on: Dec 13th, 2003, 9:32am » |
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Were you diagnosed? Yes
Did you have a Neuro? No.
Did you have meds? Yes
Did you think you were alone in this pain? Oh yeah!
Part two:
How has CH.COM helped you, by this I mean:
Got meds? good info - esp oxygen
Got a Doc? already had one
Part three: (Easy)
How did you find CH.COM?
Coppernic search engine
Always ahve a minute for a buddy jonny!
^5 Bro!
PFDAN
Mikeyd
P.S.
Thanks DJ, you da mannnnn!!!! 
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| « Last Edit: Dec 13th, 2003, 9:34am by mikeyd » |
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Waging war with the beast is tiresome & painful but never boring ;-D
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kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
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Re: Ok, Now lets talk CH.COM......
« Reply #47 on: Dec 13th, 2003, 9:46am » |
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Were you diagnosed? Yes, began suffering as a teenager and diagnosed in early 20's. I'm 42 now.
Did you have a Neuro? Yes
Did you have meds? Yes
Did you think you were alone in this pain? YES
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? Yes
Got a Doc? Yes
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? internet search
Finding other people like me and FINALLY being able to talk to people who completely understood what i was going through - PRICELESS
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jonny
Guest
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Re: Ok, Now lets talk CH.COM......
« Reply #48 on: Dec 13th, 2003, 1:23pm » |
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Now see how much more you know about each other?
Way to go folks!!, I know first hand that reading this thread has made DJ smile
Thanks for all the replies.
............................jonny
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t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender:
Posts: 527
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Re: Ok, Now lets talk CH.COM......
« Reply #49 on: Dec 13th, 2003, 1:50pm » |
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Were you diagnosed? Yes
Did you have a Neuro? No
Did you have meds? Yes, but inadequate
Did you think you were alone in this pain? YES!! I cried when I first found this site.
You get where im going with this.................................................................... ..
Part two:
How has CH.COM helped you, by this I mean:
Got meds? Yes, Yes, Yes
Got a Doc? Yes, a neuro
Again, you know where im going with this.................................................................... .
Part three: (Easy)
How did you find CH.COM? Google
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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