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I'm back again. (Read 596 times)
Tuxguy
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I'm back again.
Nov 8th, 2011 at 3:07am
 
Hello fellow CH mates.
   I return once again as you know who is back. I 'll give a little of my history info, I had brain surgery back in Dec. 2007 ( do most people with CH have some sort of past head trauma?). All went well, my pituitary doesn't work so Im on a ton of meds, hormones, etc.
  Around Oct 2008 I started my first Clusters, amazing enough  was diagnosed with CH in late Nov '08, From being here in the past and reading from others, finding a Dr. who knows about Clusters Headaches can be a crap shoot. It was actually a Dr.'s assistant and then confirmed by the Dr. Any way, My first series lasted from Nov to early March '09.  Anyone who deals with this beast knows what a great day it is when you realize he isn't coming tonight.
  Since then they like to come 2 times a year, during the seasonal changes......I just reread the post from Jennifer from '08 and reminded me what a weird condition this is as each person will have many of the same symptoms but have some of their own.
   I see the beast every night from 2 to 5 weeks at about 4am like clock work, plus  one other that follows ( sometimes), but not multiple ones like many..They start with  about 15min of warm up and then to a pain level of 11 to 15 ..( Kip goes to 10) I now have the Tuxguy scale which goes to 20. Each time they stay from 15min to an hr. the longest has been just over an Hr. ( that pushes the limit of my being able to cope.) I'm back, and hoping by this some will learn from my experiences and I hope too learn from others again. I need to pop in more often but want to say Thank you to this site as it give me a place to vent, ask, and listen.....
  You can't just talk with a friend about this , first I wont let any body watch as i fight the beast, my wife and  a few others have seen me deal with him but that's it. I use Oxygen and it makes things tolerable, and sometimes an injection of More later,....By the way, I don't smoke!   Thank you for  your time,
Tim, the Tuxguy
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wimsey1
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Re: I'm back again.
Reply #1 - Nov 9th, 2011 at 8:13am
 
Welcome back, Tim. Sometimes I think seasonal, or episodic, clusters are worse than chronic. Sometimes. I would actually trade places with you just to find out. The KIP scale gives us a common description of the pain we experience, and is reaction, or behaviorally, based instead of subjective feeling based. Anyone watching us, and like you we don't like that, could describe our KIP levels. If your scale helps you, that's great. KIP 10, by definition, has us screaming in the dark, helpless in an ER, as they try to strap us down cuz they don't know what they're doin'. I pray that is not where you are. Let us know how it's going. God bless. lance
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Guiseppi
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Re: I'm back again.
Reply #2 - Nov 9th, 2011 at 8:56am
 
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Welcome back, sorry the beasty felt it necassary to dial you up again. Take a few minutes and read the oxygen link above. We've made several minor changes in HOW we use it, mostly flow rates, that's produced dramatic changes in speed of abort. Worth a read.

Then go to the medications section, and check out the thread, "123 pain free days and I think I know why." A daily over the counter, anti inflammatory regimen that's producing some great results for many. Long read but worth the time.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Tuxguy
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Re: I'm back again.
Reply #3 - Nov 12th, 2011 at 11:29am
 
Thank you lance and joe.
I will check out the reads.
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