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        Cluster Headache Help and Support >> Cluster Headache Specific >> The miracle drug
        
(Message started by: chiaspet on Mar 24^th, 2006, 4:15pm)

Title: The miracle drug
Post by chiaspet on Mar 24^th, 2006, 4:15pm

I have suffered for twenty years, being misdiagnosed as well as mistreated. For me, I finally found the miracle drug. I started getting shadows about two weeks ago, knowing the beast was right around the corner, I went to see my doc to load up on drugs. I already had my oxygen tank delivered to the house and was preparing to give him my "list" of must need drugs to get me through the next 2-3 months. My first question to him was "have you ever treated someone with CH's" Of course I did not believe him when he said yes, but after 30 minutes of me picking his brain and discussing drugs, he convinced me to try Prednisone. The whole while he was telling me that I would not need my Imitrex, pain pills OR my oxygen. Not believing that a mere steriod could fix my problem, I told him to write me the scripts for the pain pills and the Imitrex, JUST IN CASE.
WELL....I have been on the Prednisone for 3 days and have not the faintest shadows. It brings me to tears of joy to think that FINALLY there may be something that is not as dangerous to my body that works. My treatment is for 1 month. I am still alittle apprehensive that this will keep the CH's at bay, but for now I am loving life.
I would love to hear from anyone who has tried Prednisone and see what it did for them.
Renee ;;D

Title: Re: The miracle drug
Post by Melissa on Mar 24^th, 2006, 4:24pm

Predisone only rendered me PF for 2 days. That's it. It is a quick fix, one that is given while waiting for a preventative medication to kick in.

It is definately something to not stay on long term as the side effects are horrendous.

I will say though, that over the years I have seen a few people (not many, but a few), end a cycle with pred.

Also, what are the other "drugs" you mentioned? I notice you mentioned Imitrex and O2 and something about pain pills? What kind were you prescribed and was there any discussion about preventative medication?

:)mel

Title: Re: The miracle drug
Post by vietvet2tours on Mar 24^th, 2006, 4:25pm

on 03/24/06 at 16:15:33, chiaspet wrote:

I would love to hear from anyone who has tried Prednisone and see what it did for them.
Renee ;;D

It made my dog crazy so I guess I wouldn't be using it. Potter

Title: Re: The miracle drug
Post by unsolved1 on Mar 24^th, 2006, 5:06pm

Prednisone is great to use every now and then. If you take it for too long or take too high of doses, you'll see some significant side effects. Steriods are NOT good for your body or your immune system. Get all the facts if you take this drug. Side effects on all steriods can be "horrendous" !!

UNsolved

Title: Re: The miracle drug
Post by thenucman on Mar 24^th, 2006, 5:15pm

Renee,

Prednisone tapers are prescribed for many, many things - including cluster headaches. When I was diagnosed with an auto-immune disease called Alopecia (I lost all my hair), it was one of my choices. I turned it down due to the long term side effects. Besides, being bald is cool ::)
I have used prednisone effectively several times in the past to end cycles. Now that I am chronic, they don't work that way. I rebound from pred within a week or two and I usually pay a heavy headache price for the indulgence.

I, too, felt prednisone was a miracle drug when I first used it for my Clusters. I am happy for you that you are getting relief. Just remember that what works for you this cycle, may not work next time.
Dave

Title: Re: The miracle drug
Post by thenucman on Mar 24^th, 2006, 5:18pm

I forgot to mention ... when I go on Pred tapers ... I have to start shaving again .... there is a price to pay for everything, it seems. [smiley=laugh.gif]

Title: Re: The miracle drug
Post by Melissa on Mar 24^th, 2006, 5:48pm

Renee, please post here what you wrote to me in a PM, so others can read it and understand.

Thanks!
:)mel

Title: Re: The miracle drug
Post by Guiseppi on Mar 24^th, 2006, 6:09pm

I use prednisone for the first week or two of a cycle while I wait for my lithium levels to build up. It provides 100% relief after being on it for one day.

I agree with the others it's really only a short term drug as long term usage can mess with your body in many ways. We're all hoping for the miracle pill, 100% relief with no side effects!! Hoping you find relief soon.

Guiseppi

Title: Re: The miracle drug
Post by carriefu on Mar 24^th, 2006, 6:32pm

Ree-Pred worked for my 3rd cycle....enjoy!!!

Title: Re: The miracle drug
Post by rapunzel on Mar 24^th, 2006, 9:48pm

Prednisone taper worked for my cycle ten years ago, however this time around when they gave it to me-it didnt work. I was convinced it would, and it worked for one night I believe then the clusters were back full force.

I hope it really lasts for you, Good luck.

Kim

Title: Re: The miracle drug
Post by chiaspet on Mar 24^th, 2006, 10:02pm

Can you guys be more specific on the side effects. My doc has me on it for 4 weeks. They are 10 mg pills and i take them as follows:

2 tabs 2x's 1 week
3 tabs daily for 1 week
2 tabs daily for 1 week
1 tab daily for 1 week

I found the IM I sent to Mel...she says to post for all you to see...here it is.

Hey Mel, just read your response to predisone. No my doc did not recommend a preventative. My usual mode was oxygen, Imitrex and if need be pain pills. So far I feel GREAT. I get a little tingly in the face and have a nice flushed appearence. It is so frustrating finding the RIGHT drugs. I am just so happy that I do not have a CH right now.

Title: Re: The miracle drug
Post by Melissa on Mar 24^th, 2006, 10:11pm

Thank you Renee. I wanted you to post it not only for you, but for any new person coming to the boards.

Your doc rx'd the pred. for you without rx'ing any preventative med. I am just very worried that the pred. might wear off and you won't have anything else to take as a back up. Usually when predisone is rx'd, it is done very short term, to give a preventative med time to kick in.

You may want to ask your doctor about this.

Also, here is a link with loads of information on medications http://www.ouch-us.org/medications/medications.htm

hugs,
mel

Title: Re: The miracle drug
Post by chiaspet on Mar 24^th, 2006, 10:24pm

I go to see my doc next week so he can see how I am doing on the Pred. I have some Imitrex nasal sprays for back-up.
I plan to print out all the VERY helpful info you all have posted for me to bring to my appointment!!!

THANK YOU ALL. Life with CH's would be rough without you guys!!!!

Title: Re: The miracle drug
Post by kcopelin on Mar 24^th, 2006, 11:01pm

Renee,
It's called a pred holiday by some-that hopefully pain-free week or so that it takes for the preventative to kick in-but ya gotta have a preventative. Also, I can't stress enough that the side effects are real. I have done probably 10-12 tapers in the past 5 years. I now have osteopenia (pre-osteporosis) thanks to pred. Don't get me wrong, I really needed the break it gave me. But now, I have to take lots of calcium and my doc wants me to take fosamax. I'm really too young to have to worry about breaking a hip. Just be careful, k?
kathy

Title: Re: The miracle drug
Post by chewy on Mar 24^th, 2006, 11:02pm

Hate to burst your bubble but without a preventative it is very likely the attacks will return at the lower doses of the pred.

I've ended numerous cycles using pred but never without a prevent.

Title: Re: The miracle drug
Post by Richr8 on Mar 25^th, 2006, 12:15am

on 03/24/06 at 16:24:50, Melissa wrote:

It is a quick fix, one that is given while waiting for a preventative medication to kick in.

It works for me until the Verapamil kicks in. I'll stay on Verapamil for months afterward, but the Pred will knock it down initially.

pf wishes,

rich

Title: Re: The miracle drug
Post by _Lee_ on Mar 25^th, 2006, 1:19am

on 03/24/06 at 23:02:43, chewy wrote:

Hate to burst your bubble but without a preventative it is very likely the attacks will return at the lower doses of the pred.

I've ended numerous cycles using pred but never without a prevent.

Remember two words, Verapamil & Lithobid, has worked for many.

Title: Re: The miracle drug
Post by zwibbs/Scott on Mar 25^th, 2006, 2:37am

Lee is right---Verapamil and Pred worked for me, but it took 10 solid days before I experienced PF times.....Also Prednisone can rip your stomach apart---ask the doctor for a script on PROTONIX...Expensive, but will protect your stomach

Title: Re: The miracle drug
Post by PL259 on Mar 25^th, 2006, 6:49pm

Pred bursts work great as a short term intervention. You need a good preventive. I stay on verapamil year round due to wild uncontrolled cycles. Works for me. I avoid prednisone for to long or to often. Good luck. Get them to try some of the preventivies!

Title: Re: The miracle drug
Post by mynm156 on Mar 26^th, 2006, 12:02am

Yeah, I am glad that your are living large right now but the side effects of long term exposure to corticosteroids is very very bad. It might help break a cycle or help ease one but you need to find a better cobination of abortive meds. GOOD VIBES!!!

MYNM156

Title: Re: The miracle drug
Post by chiaspet on Mar 26^th, 2006, 8:37pm

Please help to clarify something with me!!! All of you talk about a preventitive. I was under the assumtion that the pred would end my cycle all together. I have had clusters for 20 years with skipping a year for the last 4. My cycles last anywhere from 3 weeks to 3 months. I told my doc this and he said it would end my cycle. I had a doc (not my current doc) suggest beta-blockers to take year round, but I dont know how I feel about taking something for the rest of my life when it is only (I say that very lightly) 3 months that I have to deal with this. I really need some advice from all of you who are episodic like me. I am confused when everyone talks about preventitive. Is that short term or daily?
THANKS!!!!!!!!!!!!!!!
Renee

Title: Re: The miracle drug
Post by Mr. Happy on Mar 26^th, 2006, 8:58pm

The 3 modalities of treatment encompass Acute, Transitional, and Preventative. Imitrex is used as an acute treatment to abort individual attacks. Prednisone is used as a transitional treatment to gain relief while waiting for a preventative treatment to take effect. Verapamil is a preventative treatment that hopefully would allow prevention of the CH cycle. (http://www.ouch-us.org/gatherings/03.htm)

Once in a while, Pred may break a cycle, but don't count on it. The basic idea is for it to keep the nasties at bay until a longer term preventative has time to kick in.

Title: Re: The miracle drug
Post by mynm156 on Mar 27^th, 2006, 12:52am

When Ihaad cycles I never had anything end my scycle they just kinda went away. Now being chronicmy preventative meds just seem to help keep mine from running amuck. I still get hit 3-4 days a weeks and several times on those days.

Hope you get your break soon

MYNM156

Title: Re: The miracle drug
Post by sandie99 on Mar 27^th, 2006, 2:20am

Prednisone, I remember that one. I've taken it twice. The last time I took it was back in fall 2004 for 4 weeks together with verpamil. Pred made me over evergetic, bit manic and I slept only 5 hours. It didn't do that much for the pain, but I sure was one HAPPY person... ;;D And when I say "happy", I mean someone who's living in an illution. Pred did that to me on the first time I took it, too.

Best wishes,
Sanna

Title: Re: The miracle drug
Post by seccsij on Mar 27^th, 2006, 3:34pm

I had a well-meaning Dr give me pred once and it did less than nothing for my CH bu he made me stay on it for 4 weeks to give it a chance!!!!!!!I have since found out that I have become allergic to it. Last time I took it, my face and lips swelled up and I spent 2 days in hospital on O2. If it works for you, good luck. Now, besides the incredulous looks from medical staff when I describe CH, they sneer when I tell them I have a pred allergy!!!! Apparently it is so rare they don't believe it is possible. That's me, thru & thru, ----RARE!!!!!!------

LOLLOLLOLLOLLOL:))

Title: Re: The miracle drug
Post by wing_nut on Mar 27^th, 2006, 5:06pm

Isn't anyone going chiaspet about the weight gain? Prednisone & Verap. a lovely cocktail indeed, but beware........I am still trying to lose the 40lbs from the last episode.

Title: Re: The miracle drug
Post by chewy on Mar 27^th, 2006, 5:06pm

Quote:

I was under the assumtion that the pred would end my cycle all together.

Wrong assumption. Chances are it will only be a brief vacation from the attacks. Get a preventative that you can stop using when the cycle finally breaks.

I use 480mg verapamil until I have have had 2 PF weeks with good sleep then I taper off until the next cycle.

Title: Re: The miracle drug
Post by superhawk2300 on Mar 28^th, 2006, 4:49pm

I have used prednisone twicw - once to terminate a cluster cycle, and the other time it did diddly squat.

And it tastes like poo.

Title: Re: The miracle drug
Post by mischki on Apr 6^th, 2006, 11:18pm

I hadn't posted on this site in a while, and just happened to come on tonight to see what other folks' experiences with steroids were when I saw this post.

But most of what I've read sounds like the meds are in pill form and being taken for an extended period of time. So has anyone tried the shots? Here's what happened to us:

Last cycle Richard had, we were at wits' end, so I mentioned to the doc that I'd read something about steroids. He said, "we can try it." So he gave him a shot. He was PF for 3 days. Then just a few small hits and done. We couldn't decide if it killed the cycle, or just made him PF for the last few days of it.

So here comes Spring and with it another cycle. And it started 2 days before Richard had a tour of 5 gigs in 3 days! I said, "remember that shot? It lasted 3 days. It might get us through these gigs!" So we did it. PF for 3 days and then one or two small hits afterwards, and he's out of cycle. This time I think it was the shot, because his cycles usually last a couple of months.

I don't know if this is helpful for anyone out there, but for now it's working. So next cycle, I'm calling the doc for another shot. He said he's not really giving him enough or often enough for any side effects.

The only side effect I saw was that, right after the shot, he's really tired (about 5 or 6 hours). Then he "wakes up" and is really happy and bouncy. Even more than normal. He's that way for about two days. On the third day he starts "coming down" and then the fourth day after his shots, he's kinda weepy. Doing the "I love you, man" line and kinda mushy. Then he's back to normal.

mischki