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   Author  Topic: Met another CHer by chance!  (Read 208 times)
EmpressJMB
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Met another CHer by chance!
« on: Oct 6th, 2004, 10:30am »
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I just want to relay what happened to me last night.  One of my jobs (I have 3) is a bartender.  Last night,  a couple at the bar kept on insisting on buying me a drink. I politely refused several times.  I finally told them I can't drink right now due to headaches.  The woman said, "Oh, I used to get really bad headaches called cluster ha's."  I was surprised to say the least since I never met anyone else with CH.  I told her that's what I have.  She was very sympathetic.  She hasn't had one in 13 years and thinks their gone. (I hope they are, but I didn't have the heart to tell her they might not be.) I did tell her however, that I found this great website with great info, just so it's in the back of her mind if she ever gets hit again.  Amazing how we, in an instant, had a bond and tons of things to talk about!  When I got home, I got a really bad hit.  Jabbed myself with trex for the first time and it worked great! HA gone in 5 minutes!  What a relief. Cheesy  PFDAN to all. Janet
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
vig
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Re: Met another CHer by chance!
« Reply #1 on: Oct 6th, 2004, 10:41am »
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Way to go Janet!
Spread the word.
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Re: Met another CHer by chance!
« Reply #2 on: Oct 6th, 2004, 10:43am »
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WHOO-HOO!! Good job! Smiley
 
-Frank
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don
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Re: Met another CHer by chance!
« Reply #3 on: Oct 6th, 2004, 11:35am »
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Amazing she got a CH diagnosis 13 years ago.
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EmpressJMB
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Re: Met another CHer by chance!
« Reply #4 on: Oct 6th, 2004, 1:24pm »
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Don,  FYI:  My first neuro dx me 12 years ago. He said at the time the only treatments they were having any success with was Sansert and 02...only he didn't mention any psi (?) or nonrebreather mask. So 02 didn't work for me back then.  Sansert helped but gave me a strange "trippy feeling" that wasn't too cool to function in the real world with.  Have great and PF day!  
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
Leesa
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Re: Met another CHer by chance!
« Reply #5 on: Oct 6th, 2004, 1:40pm »
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Way to go girl friend!! Glad to hear the Trex worked for ya hun.  
PF wishes, Leesa  Grin
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"The truth of the matter is that you always know the right thing to do. The hard part is doing it." General H. Norman Schwarzkopf Smiley
don
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Re: Met another CHer by chance!
« Reply #6 on: Oct 6th, 2004, 2:41pm »
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13 years ago I was 14 years into CH and they were still telling me I had bad sinusus and bad teeth.
 
Ah the good old days;acupuncture, dentist, chiro, biofeedback, and a whacko therapist who told me to be one with the pain. Lock and load.
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Jimi
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Re: Met another CHer by chance!
« Reply #7 on: Oct 6th, 2004, 2:51pm »
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   I was diagnosed with Clusters in 1971 by a GP. My dad actually saw me have one and got scared and called a doctor friend of his. He had me admitted in the hospital and put me on the 6th floor (mental ward). When I asked him why, he said there are no visitors and no noise. He told me that when I feel one coming on to tell the nurse who in turn would call him.
     After observing me have one he said, You have Cluster Headaches. Well after the obligatory other tests of course. He called down to the hospital library and had them print out everything that they could find on clusters and gave me copies. I still have them. The only med he gave me was Cafergot Suppositories and told me to take one as SOON as I felt a twinge and he said the race would be on. That is all I had to fight with for years and it worked much of the time but still took 20-25 min to go away. I was very fortunate to find such a good Doctor. His name was Dr. Gardner, may he rest in peace.
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EmpressJMB
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Re: Met another CHer by chance!
« Reply #8 on: Oct 6th, 2004, 4:15pm »
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Hey Don, You forgot ENT doctor. Grin J.
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
Ruth
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Re: Met another CHer by chance!
« Reply #9 on: Oct 7th, 2004, 9:30am »
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I too was diagnosed with CH in the 70's, tried cafergot, and other meds, didn't work well for me, went years with no meds, was in remission for over 9 years and got hit this August.
I found out about imterex and this site.  
I am making it through this time fairly well.  
On a recent visit to the ER room, I had a male nurse there that also has clusters. I didn't get to talk with him for long though so I don't no what he does for his.
Good luck to you and wishing you PFDN's
 
Ruth
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Donna_H
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Re: Met another CHer by chance!
« Reply #10 on: Oct 7th, 2004, 12:13pm »
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Wow.......It's a surprise that several of you were diagnosed in the '70s.  
 
Mine started in the late 50's, stopped in 1986 and haven't returned.......but no one ever gave me anything but Tylonol with Codeine, which of course did nothing.
 
Oh, a neuro did put me on Sansert for my "allergy headaches" , but even back then the library had info about how bad Sansert was, so I didn't take them.
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Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.

One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
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