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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Get me OFF the &#*%()@ Prednisone!
        
(Message started by: KillerQueen on Mar 27^th, 2007, 7:04am)

Title: Get me OFF the &#*%()@ Prednisone!
Post by KillerQueen on Mar 27^th, 2007, 7:04am

Okay, doc started me on Verapamil, told me to gradually taper off prednisone. I made it to two days pred and headache free (the word headache is lame, really...let's call them something that REALLY describes the agony, shall we?), and this morning, one hit. It was a kip-4, so for that I'm grateful, but will I EVER get off the fucking (sorry for the language, there) predisone? I tapered off for a week and a half. Was that too soon? It seems it's the only thing that's stopping these.

Good news is, I chugged a Red Bull and took one Excedrin (for the caffeine) and it aborted it in only 25 minutes, rather than my usual 60-90 minutes. Bad news is, I'm burping up that godawful Red Bull and I'm hyper as hell...

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by LeLimey on Mar 27^th, 2007, 7:17am

You get used to the caffeine LOL It should work faster so try taking it at the first twinge

To combat the burps let it go flat, I have opended cans and left them in the fridge before, still tastes vile but its not so hard to swallow in a hurry as when its gassy!

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by chrisw on Mar 27^th, 2007, 9:07am

I know its hard to get off the pred. I was on it for more than two months. After a while though, the docs wont let you stay on it anymore. It seems that when you first go off of it, things get pretty bad at first, then they may come down a bit. Sometimes I would say to myself, that I would rather stay on the pred forever and deal with the nasty side effects, than deal with ch., but sometimes I think there is a pre programmed amount of ha you are going to get and that is all there is to it.
so staying on the steroids is like prolonging the inevitable.

I know its scary, but you will feel better in other ways when you get off it. oh, and be sure to expect a bout of depression when you come off. steriods cause euphoria, and coming off them makes things seem very dark, but that will pass in a few days without the pred.

Good luck , and hang in there.
chrisw

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by KillerQueen on Mar 27^th, 2007, 9:21am

Thanks...for some reason I thought once the taper was done, I wouldn't "need" it but it's good to know that having a mild one is common. I did take the pred today in a moment of panic (it's hard to not grab whatever pills you have once the pain hits), but I'll try again...

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by Guiseppi on Mar 27^th, 2007, 10:05am

My pred tapers go about 2 weeks. I use lithium as a prevent and through many trials and errors...(errors, another polite way to say I get fu%$ing slammed!) I've learned it takes about 2 weeks for the lithium to build up to therapeudic levels. Even then it's not a guarantee. I keep my oxygen bottle, cafergot pills and as a last resort my imitrex jabs available for the ones that break thru the lithium. I learned there is NOTHING , (except staying on prednisone...which is bad ;;D) that guarantees you won't get hit. Always have back ups to your back ups! Good luck!!!

Guiseppi

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by Gator on Mar 27^th, 2007, 10:16am

What is common is that, on high doses the attacks either substantially or completely subside. As you taper off, the attacks gradually return. Once off the pred, the attacks usually return to full force and sometimes are worse than before you started the pred taper (or at least it seems that way) for a little while and then return to "normal."

Prednisone should not be taken willy nilly on a whim. To be effective for CH, it needs to be taken in regimented form as a taper starting high and gradually tapering off, while at the same time starting a preventative. It is also sometimes given alone as a taper to give a clusterhead a short break when nothing else is working, but these should be few and far between.

Popping one now and then won't do you any good. If it does, it is likely more a placebo effect than any actual medicine related relief.

Prednisone is one drug that, used properly, is a very effective tool. Used improperly it can range from useless to dangerous due to the side effects.

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by chewy on Mar 29^th, 2007, 8:07am

The key question is what dosage of verapamil are you on?

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by KillerQueen on Mar 30^th, 2007, 12:40pm

I take two 480 mg. every night about 2 hours before bed...does it take time before it starts working? It's been 2 weeks and I haven't noticed a thing...

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by Judge_Smails on Mar 30^th, 2007, 2:38pm

KQ - I'm also on Verapamil for the first time and I've been taking 280mg in the morning, 1/2 pill (140mg) in the early afternoon and then another 280mg pill at night. This has been working good for me. You might want to try to split up your dose. I know everyone is different, but it's worth a try.

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by ClusterChuck on Mar 30^th, 2007, 3:37pm

on 03/30/07 at 14:38:08, Judge_Smails wrote:

I was going to suggest the same thing .. Half in the morning, and the rest at night.

Chuck

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by KillerQueen on Mar 31^st, 2007, 9:18am

I'm a moron...the bottle says to take 1-240 mg. pill twice a day...However, he wrote out some additional instructions and there he said 1 or 2 in the evening before bed. I was only looking at the written instructions. Looks like I'm supposed to take one in the morning and one at night, but I can take two at night if one doesn't help. Maybe that's the problem! Yeah...I'm a blonde who dyes her hair red, but red hair dye doesn't cover up 35 years of blonde... :-[

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by Brewcrew on Mar 31^st, 2007, 9:35am

Careful drinking Red Bull while taking verapamil. I don't have the links handy, but it's been discussed on this site that the combination of the two can be very dangerous.

You might want to start searching around.

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by ClusterChuck on Mar 31^st, 2007, 9:42am

[quote author=KillerQueen link=board=meds;num=1174993499;start=0#10 date=03/31/07 at 09:18:30] Yeah...I'm a blonde who dyes her hair red, but red hair dye doesn't cover up 35 years of blonde... :-[/quote]

Artificial intelligence ??

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by chewy on Mar 31^st, 2007, 1:22pm

If thats the way he wrote it then I would up the dose to 1 in the morning and 2 at night.

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by Gator on Apr 4^th, 2007, 4:35am

Before making any dose changes, you should contact the doctor and verify what his intentions were. Did he want you to take 1 in the am and 1 in the pm OR was he giving you the option of splitting the dose or taking it all at once in the pm OR did he really mean to take 1 in the am and 1 in the pm and then 1 more in the pm if you felt like it. The latter doesn't sound like a very responsible way to script a medication like verapamil.

Besides that, you're at 480 mg. Technically, you should have an ECG before increasing the dosage to 720 mg. I don't know how many people actually have this done, but that is what is recommended.

Just my 2 cents.

Title: Re: Get me OFF the &#*%()@ Prednisone!
Post by UN solved on Apr 4^th, 2007, 4:17pm

on 04/04/07 at 04:35:31, Gator wrote:

Before making any dose changes, you should contact the doctor and verify what his intentions were.

Great advice Mike ! Keep up the good work !

I also wanted to stress another point that Mike made.... "Prednisone should not be taken willy nilly on a whim". You should take Prednisone exactly like your doc tells you to.

UNsolved