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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Where were you?

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Where were you? (Read 1183 times)

TheGuy

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Where were you?
May 18^th, 2009 at 6:34pm

25 years ago when I thought I was going to die, and wished I would? Since that time I found a Dr. who bothered to do the research and gave me prednisone, which worked. Now I have to explain the terror every time I get a new Dr. I actually had one tell me I knew more than he ever would about CH and took out his scrip book. He then wrote me the scrip for the prednisone; however, he couldn't fathom why I wanted (5) 60s, (5) 30s, (5) 15s, and (10) 10s (which I cut in half at the end). He actually didn't know I had to step down the dosage. Anyway I am thrilled to know there are others out there who understand the demon, but I wish they didn't have to live with it.

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Lottie CH.com Veteran Offline Posts: 112 Gender:	Re: Where were you? Reply #1 - May 18^th, 2009 at 6:57pm Welcome! Does the pred actually break your cycle or do you also use a preventative, such as Verapamil? And what about abortives? I hope you have an O2 setup, because it's a lifesaver for most around here. Lottie
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Linda_Howell

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Re: Where were you?
Reply #2 - May 18^th, 2009 at 6:57pm

Welcome Guy,

Yep, yep yep....in order for us to be taken seriously we have to be informed as you have found out. lol

My Dr. has also said Linda , you know more about this condition than I do, What would you like to try next.?

I hope you stick around here, even if you don't have any more questions...we can all help the newcomers and believe me, they come in here at an alarming rate each day. Us old-timers to this site can't keep up and you are an important resource for us.

Linda

P.S. To answer your question of where we all were 25 yrs. ago.

DJ started this site 11 yr. ago. just for this reason. Bbefore that all of us were in our own little world of pain and isolation. DJ gave us back our life and now we pass that, as well as all the information we have researched... on to others searching for answers, support and someone to understand us.

« Last Edit: May 18^th, 2009 at 7:02pm by Linda_Howell »

Hurt people.....hurt people. Think about it.

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Guiseppi

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Re: Where were you?
Reply #3 - May 18^th, 2009 at 8:21pm

DJ started this site 11 yr. ago. just for this reason. Bbefore that all of us were in our own little world of pain and isolation. DJ gave us back our life and now we pass that, as well as all the information we have researched... on to others searching for answers, support and someone to understand us.

That's why we love the man. Wink

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Where were you? Reply #4 - May 20^th, 2009 at 6:23pm Guiseppi wrote on May 18^th, 2009 at 8:21pm: That's why we love the man. SOME love him ... The others LUST him ... (And, of course, I would never mention any names ...)
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TheGuy

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Re: Where were you?
Reply #5 - May 26^th, 2009 at 2:24pm

Lottie, I don't know what you mean by, "break your cycle." What the pred does is make it like I am not in a cycle. Once I start the pred, it's like I never had a CH. I slowly step down until I get another CH, then bump up to the level just before that. I stay on that and every other week I try to step down. Kinda like finding your own maintenance level, then every two weeks check to see if you can do with less. Then I start the step downs to zero. Pred is awful (side effects), but it's heaven compared with the CH.

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TheGuy CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Where were you? Reply #6 - May 26^th, 2009 at 2:27pm No Oxygen...I wasn't aware it had any effect. I tough em out until I can get on the prednisone.
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Guiseppi

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Re: Where were you?
Reply #7 - May 27^th, 2009 at 10:02am

Oxygen will have me pain free in as little as 6-8 minutes. That's compared to the usual 90 minute attack followed by the 10-12 hour "CH hangover" that leaves me all but worthless. If you haven't tried oxygen yet, you gotta look into it. A 31 year sufferer here, when I'm on cycle, there's always a little green tank within arms reach! Take a minute and read the oxygen info link on the left as it must be used correctly or it's ineffective.

And prednisone is usually used only as a transitional drug while a preventative drug gets working for you.....verepamil, lithium, topomax etc. Prednisone has a laundry list of nasty potential side effects...especially if used long term. Be really careful with that stuff.

Joe

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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