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New CH.com Forum › Daily Chat › General Posts › newbies

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newbies (Read 1234 times)

johnnysrock

CH.com Newbie

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I Love CH.com!

Posts: 17
Santa Rosa CA
Gender: female

newbies
Jun 16^th, 2012 at 3:17pm

I am so grateful to have found this website, my husband Johnny was just formally diagnosed with CH after 10 years of bull crap. Sinus infection medications, pulled teeth, useless pain meds, numerous x rays, ct scans, MRI's eye x rays, blood tests, steroid inhalers, steroid pills, over and over again. This episode which has lasted for the past 40 days was my last straw, here we go again I told myself, the same BS from the doctors, sinuses, I was not going to allow them to misdiagnose this again. I started my research and came across CH on the Mayo clinic website, and low and behold this sounded exactly like what Johnny is going through. I started to make demands in the ER this week, yes we were there twice, the first visit they gave Johnny enough Dilodid to stop an elephant in his tracks and he got no relief from his headache. Our second trip to the ER consisted of a MRI, blood work and a spinal tap, with no findings, I insisted they call a neuro. We spent 10 hours in the ER when the neuro finally made it in to see him, Johnny was half out of it so I spent the time discussing all Johnnys symptoms. Finally someone who knew what I was talking about. I felt a glimmer of hope and then I found you all Grin

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BarbaraD

CH.com Alumnus

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: newbies
Reply #1 - Jun 18^th, 2012 at 7:29am

Welcome to Clusterville. Sorry you had to find us, but glad you're here. Now pull up a chair and read read read..

The first thing you'll hear from us around here is that you must be your own advovant when dealing with docs. You are the one hurting (or in this case your hubby) and they're only "practicing".

Most of us have gone thru several neuros until we finally found the "one" who would listen to "us" and treat us correctly (and believe me they are few and far between). We have a list of "recommended docs, so if you have a problem finding one that actually knows something about CH - ASK and someone in your area just might have a recommendation for you.

Nuther thing... and the most important thing... we UNDERSTAND what hubby is going thru cause most of us here are going thru the same thing. We're the best supporters around. And NOTHING ya'll can say (and feel free to say about anything) can shock us or ain't something that someone hasn't already gone thru.

Get hubby on here and let him talk to us. We're here (or someone is - me I go to bed at night, but I'm OLD) 24/7, so someone will be around to help when you need it.

Again welcome to your new home and all the kinfolks (and we ARE a big family as you'll see). Now tell us all about yourself as we're a nosey bunch also.. Kiss

What don't kill ya, Makes ya stronger!

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umma23 CH.com Newbie Offline I Love CH.com! Posts: 3	Re: newbies Reply #2 - Jun 22^nd, 2012 at 5:09pm this forum rock's, but so many people with headaches
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: newbies Reply #3 - Jun 23^rd, 2012 at 2:43pm That's what this forum is all about Umma. People with headaches. Cluster headaches to be exact.
Back to top	Hurt people.....hurt people. Think about it. IP Logged

seaworthy CH.com Hall of Famer Offline Posts: 706	Re: newbies Reply #4 - Jun 24^th, 2012 at 6:49pm umma23 wrote on Jun 22^nd, 2012 at 5:09pm: this forum rock's, but so many people with headaches A few. Here and there.
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Tara Ann CH.com Alumnus Offline It's always darkest before the dawn. Posts: 2719 North Carolina, USA Gender:	Re: newbies Reply #5 - Jun 25^th, 2012 at 9:10am Hiya, welcome to the nuthouse..
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