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   Author  Topic: newbie to the beast, prednisone ?'s?  (Read 724 times)
debOUCH
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newbie to the beast, prednisone ?'s?
« on: Mar 7th, 2008, 10:13am »
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first cycle, 38 days, started prednisone 2 days ago, no attacks, finally today head not sore.............feeling kinda "teary'...........cried for 2 days, normal? also feel as if i am on some sort of speed, like those black beautys from yrs ago!!!!!!!!!! in my research, seems like ths is the "norm".....still afraid to go to sleep, as my biggies were at night, and seem to be waking "afraid"...............any thoughts would be great!!  
thanks
deb Roll Eyes
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Guiseppi
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Re: newbie to the beast, prednisone ?'s?
« Reply #1 on: Mar 7th, 2008, 10:21am »
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Prednisone at doses as low as 30 mg a day provides 100% relief for me. I get the "I'm on meth/speed" effect too. I don't get the emotional response, (a guy thing? Wink)
 
The problem with prednisone is it  shouldn't be used long term as it's very destructive to your body. We use it primarily as a transitional drug while we are waiting for our preventative medication to take effect. I go on a 2 week prednisone run while I start my lithium.
 
I hope you are also starting some sort of a preventative medication while you are on the prdnsone. My experience was if I took only prednisone, when I went off of it, I got creamed.  
 
For the bad night time hits try taking melatonin before going to sleep at night. It's an over the counter supplement available at whole food and vitamin stores, I think even Wal Mart carries it. 9-15 mg before going to sleep keeps the nite time hits away for many.
 
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Re: newbie to the beast, prednisone ?'s?
« Reply #2 on: Mar 7th, 2008, 10:32am »
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http://www.plainboard.com/ch/chtherapy.pdf
 
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
   
 
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Re: newbie to the beast, prednisone ?'s?
« Reply #3 on: Mar 7th, 2008, 10:49am »
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Pred does those things to me, too. It also make me eat lots more.
 
Are you starting any other preventatives? The pred is supposed to tide you over until the other meds build up in your system. If you aren't... the attacks will return with a vengeance when you finish the taper.
 
Have you tried melatonin before bed?  
 
pf wishes, nani
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Re: newbie to the beast, prednisone ?'s?
« Reply #4 on: Mar 7th, 2008, 10:49am »
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thanks for the info all! since i am new to this, i didnt have my brain scan yet, hopefully next week, gotta wait for that ----insurance approval!!! doc gave me a 3 wk script, starting  40mg for 4 days, and tapering off..............this site is the best thing ! grin2 so disgusted with trying to explain this to friends/fam, actually emailed them the description from OUCH, and i believe they are on the road to understanding....tho, no one understands better than those going through the same.....like everything else in life!!! I thought 50 was the "magical age"!!!! LMAO.............first a separation after 27 yrs of marriage, then the BEAST!!! the separation is a piece of cake!!!! thanks again! Smiley
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Re: newbie to the beast, prednisone ?'s?
« Reply #5 on: Mar 7th, 2008, 11:00am »
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I turned 50 in August. Besides the ability of my body temperature to fluctuate to extremes in minutes...  I haven't seen any "magic".   Wink
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Re: newbie to the beast, prednisone ?'s?
« Reply #6 on: Mar 7th, 2008, 11:03am »
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I have learned to hate the Pred each cycle because it leaves me feeling very irritable and buzzy, but I continue because sometimes it helps.
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debOUCH
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Re: newbie to the beast, prednisone ?'s?
« Reply #7 on: Mar 7th, 2008, 11:49am »
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ah nani! i also turned 50 in august! the 21st!! a leo i am....i ROAR with the best of them.................and  girlflash take those heat surges as power surges!!!! been going thru that for 11 yrs!!!!!!!!!!!!!1
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debOUCH
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Re: newbie to the beast, prednisone ?'s?
« Reply #8 on: Mar 7th, 2008, 1:26pm »
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ugggggggggggggggggggggggggggggggg...........why cant i stop crying???????????????????????/ & pacing??/worried     pred??????????????/
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Re: newbie to the beast, prednisone ?'s?
« Reply #9 on: Mar 7th, 2008, 2:38pm »
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Deb I think it's likely to be the pred (((HUG))) hang in there, talk to us. We'll help all we can
 
lots of love
Helen
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Re: newbie to the beast, prednisone ?'s?
« Reply #10 on: Mar 7th, 2008, 4:13pm »
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Ditto to what Helen said.
 
I went through much of the same.  Instead of pacing, I cleaned.  Washing the rug in the laundry room turned into removing everything from the room and cleaning it completely, including cabinets.  Never did get teary, instead my temper was more on a hairtrigger.  Hubby and kids kept their distance.......I think they were kinda afraid of me  Undecided
 
Once you taper off the pred you should be feeling more like yourself.  Hope the pred breaks your cycle and brings you some pf time.  Does the Dr. have you on any prevents to build up while you are taking the pred?  
 
Beth
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Re: newbie to the beast, prednisone ?'s?
« Reply #11 on: Mar 7th, 2008, 4:29pm »
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Hey Deb I just noticed you share a birthday, 21st Aug, with my youngest son Jasper. He was six last birthday and he's a ch'er like us.
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debOUCH
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Re: newbie to the beast, prednisone ?'s?
« Reply #12 on: Mar 7th, 2008, 6:34pm »
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LeLimey...............a child with CH................makes me cry............ Cry.....but wonderful we share a b'day!!!! i am sure he is the bestest ever!!! give him a hug for me................no other meds yet, beth, as i need to do the scan first, so the doc says.....................oh, yeah i cleaned the clean stuff.....then i paced.........feeling calm now.................maybe time for that shower!!!!!....actually just watched a movie, mystic river.took my mind away for a bit.....head still sore to touch..................... tks for your words all........................
 Cry
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Re: newbie to the beast, prednisone ?'s?
« Reply #13 on: Mar 8th, 2008, 5:19am »
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Maybe turning 50 is the key to clusters , atleast for some of us. I also turned 50 in July.  Didn't bother me one bit or atleast I thought.  Now I feel like I have aged 10 years after this most recent bout.
As I mentioned in my pm I am very sensitive to all meds and the melatonin gave me hives.  This may be unusal but just in case you also have a problem and  are having trouble sleeping due to the prednisone get some other type of sleep meds.  Doctor should help you out with this.  Good luck!  Mary Ann
 
And to Guiseppi   ~~~    It's not fair!!!     "I don't get the emotional response, (a guy thing? )"     Cry    Just Kidding
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debOUCH
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Re: newbie to the beast, prednisone ?'s?
« Reply #14 on: Mar 10th, 2008, 10:39am »
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5 days pred, 40mg per day, today i go down to 30mg, 5 days..................only shadows and small attacks the past 5 days,but speeding my butt off!!!!  but upon awakening today, got a pretty fierce one, downed strong black coffee amid tears, and kinda alleviated pain a bit, prob about an 9, for about 45 minutes..................ugggggggggg.....................also seems like i am sweating alot more on the pred.............. confused.........any thoughts?
deb
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Re: newbie to the beast, prednisone ?'s?
« Reply #15 on: Mar 10th, 2008, 10:47am »
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my thoughts are that the crying and the sweating are most certainly from the prednisone!!!!    
That medicine is just very very rough.
As for the ch continuing, I guess I don't know enough about prednisone tapers to answer that.  Someone else should pipe up though.  Best of luck and just try to hang in there.
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Re: newbie to the beast, prednisone ?'s?
« Reply #16 on: Mar 10th, 2008, 11:22am »
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A prednisone taper has always put the brakes on regular hits for me by the 2nd day. As to the emotion, the best way I can describe my experience is that I don't suffer whiners gladly whilst on the stuff. In fact, I want to rip off their heads and shit down their necks. Temperature fluctuation? Yeah, I remember feeling more temperature extremes while taking prednisone. Best thing I can say is alter the temperature of your home, or wear more or less clothing.
 
Keep in mind that a prednisone taper is designed to stop the headaches quickly while you get onto a regimen of preventatives, like verapamil, lithium, methysergide, or whatever. As the amount of the taper decreases, the other stuff should be building up in your system. This can take 10-14 days.
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Re: newbie to the beast, prednisone ?'s?
« Reply #17 on: Mar 10th, 2008, 11:28am »
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oh brewcrew!!!! thanks for my first LMAO of the day!!!!!!!! i guess it's a woman thing vs a guy thing!!!!!  laugh
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debOUCH
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Re: newbie to the beast, prednisone ?'s?
« Reply #18 on: Mar 10th, 2008, 11:44am »
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since i havent had brain scan yet, on no other meds yet....guess they wanna rule out crap first............bloodwork fine, trying to get a scan appt 2day or 2moro, then maybe other meds........................starting to speed again!!! 2 bad i'm not a teenager lookin for a damn high!!!!! guess i'll throw out more of my feh's(future ex husbands) crap......................i think i may blame him for these BEASTS.................................sounds good to me!!!!  finger
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debOUCH
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Re: newbie to the beast, prednisone ?'s?
« Reply #19 on: Mar 10th, 2008, 12:13pm »
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tks bob!!! printing article right now! grin2
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Re: newbie to the beast, prednisone ?'s?
« Reply #20 on: Mar 10th, 2008, 9:23pm »
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Hey Deb,
 
I'm @ exit 53....Commack.
 
If you need ANYTHING drop me a pm and I will give yo my #
 
Always good to meet another headcase  Wink
 
Seriously, there are a couple of us right around the corner so please do not hesitate.
 
What doctor ar eyou seeing?
What other treatments are you using?
Have you gotten Oxygen?
trex?
 
Let me know and I will be sure to help you with anything you need.
 
Coffee, a shoulder or an ear.
 
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