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Trying to sort it all out. (Read 624 times)
Kat
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Trying to sort it all out.
May 20th, 2010 at 6:35pm
 
  I am so grateful I have found this site.  You all have been a blessing to me; I thought I was alone and that nobody understood, until I found all of you.  I have chronic CH and they come and go all the time.  I don't know much about CH but I do know that the pain is real; its there, every day, without fail.  My family thinks I'v lost my mind; I'm making all this up and my doctors are lying to me.  I'm not sure how long I have suffered with CH, at least 2 yrs. and last week was the first time a doctor recognized it for what it is and diagnosed me with CH.  He has put me on O2 and  Verapamil; not sure what they are or what they are supposed to do (I keep forgetting to ask).
  Everyday I have the stuffy nose, runny eye, and when I am having a CH my ear even seems to drip.  Sometimes the CH last 90 min. other times they can last as long 7 or 8 hrs.    Shocked   No wonder my family thinks I'm crazy!!   Sometimes, I think I'm getting a CH because my nose is stuffy or my eyes leak; I feel pain in my eyes and forehead and think, "Here it comes!"  but it doesn't. Those pain slowly disappears and soon will reappear again.  This continues until finally, as you would say, the beast has arrived.  I don't go out much anymore and prefer if ppl don't come over.  I'm tired of them seeing me this way. 
   I take comfort in coming here and reading how you are all doing and I hope that you are having a great day when you read this!  Cool   I have read many of your posts; they are comforting and enlightning.  I don't feel so alone anymore.  Thank you.
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Dallas Denny 62
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Re: Trying to sort it all out.
Reply #1 - May 20th, 2010 at 7:18pm
 
Hi Kat!!

Sorry you had the need to find us but Welcome to the community!!

Have you tried the O2 yet and how was it prescribed?  Read the oxygen info on the left nav bar for all the latest and greatest techniques.

Sending PF thoughts and wishes!!

Dallas Denny
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I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!
 
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bejeeber
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Re: Trying to sort it all out.
Reply #2 - May 20th, 2010 at 7:40pm
 
Hey Kat!

Ditto on what Dallas Denny said in the above post. Smiley

You came to the right place alright ! There are so many ways to fight off this beast, and the advice and info here is generally top notch.

Apparently it is just human nature for others, including family, not to want to understand what a CH sufferer is experiencing. So many of us encounter this same phenomenon.

There's this colleague's letter that attempts to bridge the gap, but I guess it's really aimed more at co-workers than family. Oh well, might be worth a look:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Kat
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Re: Trying to sort it all out.
Reply #3 - May 20th, 2010 at 7:45pm
 
Thank you for the link.  I was prescribed O2 to be opened up completely for 15 - 20 min.
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shaggyparasol
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Re: Trying to sort it all out.
Reply #4 - May 21st, 2010 at 2:11am
 
Hi Kat. Sad  I'm sure some of my friends think I lost my mind a long time ago and I like it!  More of a quirky, eccentric losing of ones mind, it's more fun that way. 

Well, welcome to the club, sorry you have to be here, but we are pretty fun so hang around.  Since you are new, there is only one way to go....up!  I sensed despair in your post??  When you are ready I bet we can get you back to your old self or at least functional and interested in getting out occassionally.

Your doctor seems like he/she has you headed the right direction.  Also look into Caffeine/taurine or if you are a night time sufferer check out the melatonin/kudzu stuff.  I am a psilocybe mushroom guy myself and all things mushroom can be found on Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; another great website.

So hang in there, welcome to the cluster family, we are mostly functional and super helpful. Cheesy

--Shaggy

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