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New Doc!! Relief (Read 1048 times)
plateglass
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New Doc!! Relief
Jun 21st, 2010 at 8:14pm
 
I was down to my last 2 Relpax and the O2 was just taking the edge off the last few days...I ended up getting an appt with a pain mgmnt doc as a last resort.  Ends up he was a neuro many yrs ago and has exp. with clusters.  He told me my old neuro was tiptoeing around a very serious condition and put me on a long treatment of predisone.  40mgs to start 3xs a day...WOW No pain!!!I will keep you all posted

Steve
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Wouldn't it be easier if we just cut off your head?
 
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Brew
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Re: New Doc!! Relief
Reply #1 - Jun 21st, 2010 at 8:43pm
 
Watch it with the long-term prednisone. It'll damage your internal organs and leech the strength out of your bones. It's the classic medical double-edged sword: both a miracle and a nightmare, all at the same time.

Prednisone for treatment of CH should only be transitional - that is, it bridges the gap from the time you start taking a long-term preventative until that preventative becomes effective. 10-14 days max.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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seaworthy
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Re: New Doc!! Relief
Reply #2 - Jun 21st, 2010 at 8:45pm
 
Quote:
Ends up he was a neuro many yrs ago and has exp. with clusters.


Then his experiance should dictate to him that you should be on a preventative as well.

Are you?
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Lettucehead
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Re: New Doc!! Relief
Reply #3 - Jun 21st, 2010 at 10:01pm
 
I very glad that you're getting relief, but I very much agree with the posts above - prednisone is a very much love/hate medication.  Fantastic short term - a week or two.  Awful effects on your body longer term.  Osteoporosis, diabetes, weight gain, mood swings, insomnia, etc etc.  Please please talk to your dr (if you haven't already) about a safe prophylactic medication...
God Bless and may you have many many more PF days!!!!
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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH
 
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Bob Johnson
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Re: New Doc!! Relief
Reply #4 - Jun 22nd, 2010 at 9:01am
 
I hope that your term, "long term", is not longer than the 10-14 days mentioned above.

Read the PDF article (below) and consider giving a copy to your doc--to use as discussion tool to review his plans re. meds.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (144 KB | 27 )

Bob Johnson
 
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Guiseppi
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Re: New Doc!! Relief
Reply #5 - Jun 22nd, 2010 at 9:32am
 
Great news that you have a doc experienced with CH. Saves the whole first 10 minutes of every appointment convincing someone it's NOT stress and it's NOT a migrain! Grin

But yeah, what the others have said. For a small percentage of people, a short burst of prednisone will actually break a cycle. My guess is he's trying that route first to see if you're one of the lucky ones....here's to hoping you are.

If not, and they come right back when the pred runs out, then he will hopefully start you on a solid prevent med, like Verapamil, Topomax or Lithium. Please let us know how it goes.

Joe

PS: Keep the 02 close when the pred runs out. Most find when the prednisone runs out, if it hasn't broken the cycle, the beast really comes back with a vengeance, make sure the tank is full! Wink
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plateglass
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Re: New Doc!! Relief
Reply #6 - Jun 22nd, 2010 at 3:45pm
 
Thank you all for your support and concerns.  I am on the Topamax, as a prevententive.  The O2 is stocked and ready.  Had a few shadows today, like the beast was trying to break through but was blocked somehow!  They were what I considered "baby HA's".  Next week I will be going to try the Ocular Nerve Block at the same doc for the first time ever.  I have heard mixed reviews on the board and I will let you all know my experience. 

Steve
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Wouldn't it be easier if we just cut off your head?
 
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plateglass
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Re: New Doc!! Relief
Reply #7 - Jun 22nd, 2010 at 6:17pm
 
Bob,
just printed the article thanks for the info...there was alot of info that I knew (and some I didn't) but I will be going over it with newdoc and see where we stand!

Steve Smiley
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Wouldn't it be easier if we just cut off your head?
 
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