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sharbare
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Just wanted to introduce myself
« on: Jan 31st, 2004, 4:23pm »
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I am brand new to this site and so thankful that I found it.  My name is Sharon.  I am 36 years old.  I have been suffering from episodic clusters for 18 years now. (half of my life!)  When I first started getting them I thought I was getting sinus infections to the 10th degree.  I would take sinutab like candy and I thought it was helping because after an hour my pain would go away.  This lasted for about  2 cycles (4years).  Seeking out doctor after doctor after doctor with no relief and no diagnosis, I was devastated.  At the age of 29 I was hospitalized for these terrible headaches.  A  nuerologist  at the hopital finally correctly diagnosed me with episodic clusters.  He then doped me up on several meds that didn't help at all.  Just made me feel like I was in a fog.  I heard about the Diamond Headache clinic from several people who said they had success with migranes. (of course no one I ever met had or even heard of clusters) so I thought I'd give them a try.  I saw Dr. Merle Diamond, founder of the clinic and he put me on prednisone for 3 weeks,  gave me a shot of some sort, along with oxygen therapy.  For the first time in 18 years I found relief!!  It is a miracle!!  My last cycle lasted 7 weeks and I pretty much skated through it.  If you live near the Chicago area please give the Diamond headace clinic a try. They are a God send to me and hopefully will be to others of you out there suffering.
« Last Edit: Jan 31st, 2004, 4:31pm by sharbare » IP Logged
jonny
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Re: Just wanted to introduce myself
« Reply #1 on: Jan 31st, 2004, 4:35pm »
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Glad to hear you had a good experience at diamond......I bet the pocketbook is alittle lighter Grin
 
..............................jony
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BlueMeanie
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Re: Just wanted to introduce myself
« Reply #2 on: Jan 31st, 2004, 5:01pm »
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Sharon,
 
Glad to hear you found relief for your Clusters. Most neuros nowadays will prescribe the same meds you received at Diamond. Just pointing that out because of the cost involved. Try Imitrex injections. You can get a script from your GP. O2 was a little harder to get for me through my GP, but I did get a script with no problems after seeing a neuro.
 
PF Vibes to you and hope your cycles are ALL short ones.
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Re: Just wanted to introduce myself
« Reply #3 on: Jan 31st, 2004, 5:39pm »
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Wouldn't ya know it......
 
A new lady signs in and jonny's the first to jump her string.  Cool
 
Welcome to the board Sharon.
« Last Edit: Jan 31st, 2004, 5:39pm by BobG » IP Logged

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Re: Just wanted to introduce myself
« Reply #4 on: Jan 31st, 2004, 10:59pm »
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Welcome aboard.  Check you IMs.  Sent  you one, but I may have goofed it. Sad  Let me know if I did and I'll resend.  Glad to meet another in Chicagoland.
 
Jerry
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Re: Just wanted to introduce myself
« Reply #5 on: Jan 31st, 2004, 11:13pm »
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Hi Sharon,
 
Welcome to the board.
 
Good to hear you have the meds to fight the beast.
 
Stick around and let us know how you are doing.
 
PF vibes,
 
Jean
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Re: Just wanted to introduce myself
« Reply #6 on: Jan 31st, 2004, 11:29pm »
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Welcome to the board Sharon,
 
Glad you found the board, hang in there
The BEAST will never win!!!!!!!!!! laugh
 
Neal
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Re: Just wanted to introduce myself
« Reply #7 on: Feb 1st, 2004, 1:06am »
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Glad you found us, especially as you have been dealing witht he beast for so long. Hope you find help easire then by having to head to a speciliazed clinic.
 
Tiannia
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Re: Just wanted to introduce myself
« Reply #8 on: Feb 1st, 2004, 1:15am »
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on Jan 31st, 2004, 5:39pm, BobG wrote:
Wouldn't ya know it......
 
A new lady signs in and jonny's the first to jump her string.  Cool.

 
Just expressing my hate for clinics that suck us dry of cash we dont have, Bob
 
................................jonny
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Re: Just wanted to introduce myself
« Reply #9 on: Feb 1st, 2004, 1:37am »
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welcome sharon
 
glad to here you are doing well Cheesy
     wishing you PF days
 
        tsays
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Re: Just wanted to introduce myself
« Reply #10 on: Feb 1st, 2004, 1:52am »
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on Jan 31st, 2004, 4:23pm, sharbare wrote:
 I saw Dr. Merle Diamond, founder of the clinic and he put me on prednisone for 3 weeks,  gave me a shot of some sort, along with oxygen therapy.

 
Glad they helped you out. I'm sure that after 18 years of no relief, I imagine you're not complaining about the cost after finally finding someone to help. How many thousands $$ and hours of pain had you spent until finding Diamond?
 
Anyway, if it was a Mr. Diamond you saw, it was Seymour Diamond, the founder. If you saw Merle Diamond, that was his daughter. Didn't want to nit-pick but you'll want the correct name when you call to speak to your doc or make future appointments.
 
Good luck
PF
 
 
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Re: Just wanted to introduce myself
« Reply #11 on: Feb 1st, 2004, 2:12am »
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welcome aboard.   Smiley I don't need diamond though, but if they can help someone more power to 'em.
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Re: Just wanted to introduce myself
« Reply #12 on: Feb 1st, 2004, 7:21am »
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on Feb 1st, 2004, 1:15am, jonny wrote:

 
Just expressing my hate for clinics that suck us dry of cash we dont have, Bob
 
................................jonny

 
That's what I was referring to. The Diamond Clinic has had a lot of negative remarks aimed at it here. Too bad the elder Diamond isn't there anymore. I think he actually cared about his ch sufferers. The young Diamond is interested in money.
But Sharon had good results and that is what counts.
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Re: Just wanted to introduce myself
« Reply #13 on: Feb 1st, 2004, 7:38am »
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Welcome to the Maelstrom. So glad you found some relief.
Stick around.
 
TTFN Cool
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Re: Just wanted to introduce myself
« Reply #14 on: Feb 1st, 2004, 8:15am »
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Hey Sharon.
 
Welcome to Clusterville.
 
Steve G
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sharbare
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Re: Just wanted to introduce myself
« Reply #15 on: Feb 1st, 2004, 5:11pm »
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Hi pf and everyone else out there,
Thank you for the name correction.  You are absolutely right, I saw Seymour, not Merle.  As for the cost only a $20.00 copay cuz they are in my insurance plan.  If they weren't I would still be SUFFERING!!!!
 
Sharbare
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sharbare
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Re: Just wanted to introduce myself
« Reply #16 on: Feb 1st, 2004, 5:17pm »
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Jerry,
Forgive me, but being new to this sight and the internet I'm not sure what the heck an IM is or how to receive it.  Sorry if I sound like an idiot, Please help.
 
sharbare
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Re: Just wanted to introduce myself
« Reply #17 on: Feb 1st, 2004, 8:50pm »
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Welcome!
 
 
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Re: Just wanted to introduce myself
« Reply #18 on: Feb 2nd, 2004, 12:40am »
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Hi Sharbare,
 
Apologies not needed.  I didn't know what an IM was till I came here either.  It's and instant message.  If you scroll up to the top of this page where it says Message Board to the right of the header it will say, "Hello Sharbare, you have ___ messages, ____ are new."  Click on "messages" and it will take you to the IMs page.
 
Give it just a little bit of time and you will be doing it without thinking about it, kind of like we post without thinking about it! Grin
 
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Re: Just wanted to introduce myself
« Reply #19 on: Feb 6th, 2004, 7:15am »
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Welcome to Clusterville Sharebare
 
Read all the stuff and see that you're n ot alone anymore. We're a great support group.
 
Go to the OUCH website and join up. We need all the help we can get - (Organization for Understanding Cluster Headaches). We're making a lot of progress in getting our disease out in the public.  
 
Hugs BD
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Re: Just wanted to introduce myself
« Reply #20 on: Feb 6th, 2004, 8:58am »
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Welcome! Smiley
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