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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › new/ on prednisone now what HELP

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new/ on prednisone now what HELP (Read 3174 times)

saxman

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new/ on prednisone now what HELP
Dec 21^st, 2009 at 2:34am

hey everyone. I was on the site years ago, and you all saved me from literally dozens (maybe hundreds) of HITS!! 10 plus years of unmedicated cycles every year/ Dec 15thish to end of Jan...6-8 kip7s thru 10sper day (started in college about 1970. I forget when it was (mid 80s?) at an er they said hey, try this new drug (shot of imitrex) and kip 10 was gone in 3/4 minutes. Of course they prescribed 2 shots per day which didn't help the other 6 hits per day. So I simply endured the torture!! For years!!! Then one night in between hits I searched the web under cluster headaches and found you.
The first life saving info was prednisone, the next day at the er again I asked about it..The Dr. looked at me like I had 2 heads? Prednisone? he said, then he called upstairs for the on call neuro and he confirmed and prescribed my first taper. I took the first 60 mg and continued the taper. So long hits and cycle. Completely gone untilthe following year.
I have had less success every year since, last year I went to different Drs and continued with the pred 3 tapers with hits sneaking through, the cycle finally ended on its own.
My cycle started 4 days ago and the pred is doing the trick so far, I of course pray that the taper works again, but now I'm reading about the preventative for the first time. So makes sense. What do periodics (is that the term for me?) do with regard to preventatives? It seems to me that the one time I actually was with a neuro, They didn't want to prescribe blood pressure drugs because mine is unusually low.
Also, any success with actually getting imitrix generics cheaper? The last time I bought (no insurance for 6 months now) they were $280 per shot!!
Thanks everyone

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Guiseppi

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Re: new/ on prednisone now what HELP
Reply #1 - Dec 21^st, 2009 at 2:55am

A couple of things. First, read the oxygen link on the left, and get oxygen prescribed. A 31 year episodic here, 02 is still my front line and most effective abortive, typically killing an attack in 8-10 minutes.

The keys, get on it at the first sign of an attack...that's why you have to have it at home ...by the time you drove to a hospital, the attack is well established and oxygen loses it's effectiveness. Your lungs must get only 02, no exhaled air, no outside air, accomplished using a Non Re Breather Mask and a high flow regulator, at LEAST 15LPM.

I do a pred taper at the start of a cycle, while ramping up on lithium. (Lithium being my prevent) At 1200 mg a day it'll block 70-80% of my hits. Takes about 2 weeks for it to reach a therapeudic level in my system. First time you go on lithium they do a lot of blood draws while they establish what an appropriate level is for you.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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saxman

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Re: new/ on prednisone now what HELP
Reply #2 - Dec 21^st, 2009 at 3:08am

Thanks, Joe, I have had them give me 02 in the er with a little plastic nose coverthing,didn't noticeanything, but obviouslynot doing it right. It seems like alot of th posts suggests that the hit comes back quickly after going away w the o2?
I'm very curious about another periodic. One cycle a year? when/ how long/ how many hits per day/ daytime nite time/ Mine have morphed now to having the wake ups 3 -4 times per nite... never had that for the first million years.
Do you take the preventative all year even when not in a cycle?
What about work, when in a cycle.. great to chat with a ch brother!!

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bejeeber

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Re: new/ on prednisone now what HELP
Reply #3 - Dec 22^nd, 2009 at 11:24am

saxman wrote on Dec 21^st, 2009 at 2:34am:

....any success with actually getting imitrix generics cheaper?

Check out the "imitrex tip" amongst the links on the left here (if they're showing up in your web page view). It details how to use 1/3 to 1/2 dose injections - they're as effective as full doses and certainly cut your price/risk per injection way down.

As you well know from experience, this CH beast is a dodgy and evil one, and something that sends him away (eg; prednisone) one cycle may not phase him too much the next cycle. Lots of other stuff to hit him with though, so I'd recommend hanging out here aplenty and reading/asking all about 'em for your back up plan(s). Cool

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Guiseppi

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Re: new/ on prednisone now what HELP
Reply #4 - Dec 23^rd, 2009 at 2:04am

For the first 20 or so years, I had 2 cycles a year, spring and fall, 8-12 weeks, typically 2 hits a day, late morning and early evening. Hit my 40's and they've gone all over the board. An 8 month cycle followed by almost 2 years pain free. They do like to morph on you!!! Wink

I do not take my prevent meds off cycle. When the cycle starts I do the pred taper while I ramp back up on the lithium.

That "nasal canula" they tried on you at the er is worthless. It's critical your lungs get ONLY pure 02. Using the "nose tubes" I doubt you were hitting 10%!! As far as the hits coming right back, for some of us, myself included, yes! I have been popping 1-2 oral cafergot when I started the 02, 02 stopped them, cafergot would buy me up to 12 hours pain free time, prevent the rebounders. Others on the board have chugged an energy drink as they start the 02 and have similar results to mine. I intend to start that the next cycle.....which sadly seems to be ramping up! (3 hits today...damnit anyways!!! Thank God I keep an e-tank in my car!!!) So I was at work today when the hits started, closed the office door and me and the 02 had a meeting of the minds!

Like you, for the first 20 years I NEVER had a night hit. Once I got to sleep, I was safe. In my 40's I learned why many on the board call them the night terrors! You dream a hit is starting, dream you start the 02, by the time you wake up it's already ramping up big time!!!

Keep the questions coming, knowledge is power against the beast!

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: new/ on prednisone now what HELP Reply #5 - Dec 23^rd, 2009 at 6:57pm Quote: Using the "nose tubes" I doubt you were hitting 10%!! Joe - Plain old room air is 21% O₂.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: new/ on prednisone now what HELP Reply #6 - Dec 23^rd, 2009 at 8:06pm Oh sure...bring up my C- in Chemistry!!!!
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jon019

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Re: new/ on prednisone now what HELP
Reply #7 - Dec 23^rd, 2009 at 9:12pm

saxman wrote on Dec 21^st, 2009 at 2:34am:

The first life saving info was prednisone, the next day at the er again I asked about it..The Dr. looked at me like I had 2 heads? Prednisone? he said, then he called upstairs for the on call neuro and he confirmed and prescribed my first taper. I took the first 60 mg and continued the taper. So long hits and cycle. Completely gone untilthe following year.
I have had less success every year since, last year I went to different Drs and continued with the pred 3 tapers with hits sneaking through, the cycle finally ended on its own.
My cycle started 4 days ago and the pred is doing the trick so far, I of course pray that the taper works again, but now I'm reading about the preventative for the first time. So makes sense. What do periodics (is that the term for me?) do with regard to preventatives? It seems to me that the one time I actually was with a neuro, They didn't want to prescribe blood pressure drugs because mine is unusually low.

Welcome back,

For me, Medrol (methlyprednisolone) first as an IV then a taper worked like a miracle the first time...cycle gone first day.....subsequent IV's and taper didn't work...sigh...works for many...definitely worth the effort....

Re prevents, when episodic (6-8 weeks on/off) I took verapamil (480 mg/dy in divided doses)....since the cycle length was so short ....tapering off and then back on was worse than just staying on full time. Was 70% effective. Now chronic, using 960 mg/dy for same 70% (with O2, which also takes care of another 20%). Some believe this med prolongs or extends cycles...sometimes I think so too....

Guiseppi wrote on Dec 23^rd, 2009 at 2:04am:

Like you, for the first 20 years I NEVER had a night hit. Once I got to sleep, I was safe. In my 40's I learned why many on the board call them the night terrors! You dream a hit is starting, dream you start the 02, by the time you wake up it's already ramping up big time!!!
Joe

Oh man, that is bang on EXACTLY what happened to me...for 20 yrs, if I could get to sleep through the pain...I was SAFE...wish I had known about melatonin. View it as a particularly cruel trick of the beast...when all you desperately want is sleep...and that becomes almost impossible....melatonin doesn't prevent the night hits, but it does help keep me groggy enough to go back to sleep immediately after O2 abort (btw...O2 works 98% of time on night hits).That is a puzzler....

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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saxman

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Reply #8 - Dec 24^th, 2009 at 12:31am

I'm about a week into the cycle and pred taper #2 started today. So far only 1 hit a few nights ago. I was terrified that the pred stopped working, but I was lucky, a single hit. I didn't get a cycle last year after a particularly brutal 2 cycles the year before, so I'm hoping the pred kills the cycle this time! no insurance so I'm also going to have to be creative with the meds..
I had insurance a few months ago but no cycle so STUPIDLY i didn't stockpile!! This crap is so horrible, I'm always in denial out of cycle hoping the beast is gone forever.. I won't make that mistake again!!
Anyone have the "cheap" prescription for after pred?

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: new/ on prednisone now what HELP Reply #9 - Dec 24^th, 2009 at 7:04am Quote: Anyone have the "cheap" prescription for after pred? Verapamil and/or Lithium Carbonate are both generic and relatively inexpensive.
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saxman CH.com Junior Offline I Love CH.com! Posts: 80 portland or Gender:	Re: new/ on prednisone now what HELP Reply #10 - Dec 24^th, 2009 at 9:06am doont those two drugs require thes multiple blood test things?
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: new/ on prednisone now what HELP Reply #11 - Dec 24^th, 2009 at 10:02am saxman wrote on Dec 24^th, 2009 at 9:06am: doont those two drugs require thes multiple blood test things? No blood test to monitor verapamil. Periodic blood tests (probably every 6 months) to monitor lithium and creatnine levels and kidney function.
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saxman

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Re: new/ on prednisone now what HELP
Reply #12 - Dec 24^th, 2009 at 11:01pm

Onmy 2nd pred taper, only one hit in 8 days snuck through! I'll be done weiththe pred in a few days. If the cycle is still alive am I okay for a third, a fourth? payday in2 weeks and I'll get on the 02, I guess after xmas I'll gobackto the er and get a rx for the Verapor Lithium,
Thankseveryone PF Holiday wishes!!

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Brew

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Re: new/ on prednisone now what HELP
Reply #13 - Dec 24^th, 2009 at 11:10pm

The less prednisone you can take, the better off you'll be. It can leave you with lifelong problems if you take too much, and you need to talk to a doctor about it.

I would never take taper after taper like that. Every time you do, it virtually shuts down your adrenal glands. They start back up slowly as you taper down.

"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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saxman

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Re: new/ on prednisone now what HELP
Reply #14 - Dec 24^th, 2009 at 11:24pm

Jeez, whoknew? last cycle 2 years ago I think I did 4 tapers? I'm in sales and movearound often without healthinsurance, going to ERs and day clinics in strip malls. These Doc's just end up doing what I askthem too, they don't know. I never get in front of a Neuro. I will get seriousthe day after Christmas and get an appt somehowwitha neuro.anbody know a good one in PortlandOr?
Ohboy I'm getting a Christmas Eve hit, just starting, got the iced peas between my head (leftside) andshoulder asItype.
By the way I'mnot a complete moron, my space bar is sticking on my keyboard, (ok so maybe a partialmoron for not stockpiling when I had insurance 3 months agoatthe last job) When I'm out of a cycle Igo intodenial and think I'll never haveanother..I won't EVER make that mistake again, Icould have had a stash of imitrex, 02 etc..
Whydidn't you guys tell me?
Merry Christmas everyone

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: new/ on prednisone now what HELP Reply #15 - Dec 25^th, 2009 at 10:18am Priority list for 2010: 1. Get to a neurologist 2. Stop taking so much prednisone 3. Pop $10 for a new keyboard Merry Christmas to you, too!
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saxman CH.com Junior Offline I Love CH.com! Posts: 80 portland or Gender:	Re: new/ on prednisone now what HELP Reply #16 - Dec 25^th, 2009 at 12:07pm I've got a laptop! very rough nite last nite 1 hit was a kip 10 for almost an hour and a half!! trying to reach a dr. now ho ho ho
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Marc

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Re: new/ on prednisone now what HELP
Reply #17 - Dec 25^th, 2009 at 3:51pm

Sorry you're getting hit like this, but I will echo what Brew said - watch it with the Pred!

My Doc limits me to a maximum of 3 tapers per year, with months between them. I have a standing script for Medrol dose packs because my Doc knows that I realize just how dangerous it can be.

The key to using a Pred taper is to start taking a preventative like Verapamil or Lithium to give it time to work while the Pred holds the hits back. When the Pred is gone, the pain comes back.

Marc

« Last Edit: Dec 25^th, 2009 at 3:55pm by Marc »

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saxman

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Re: new/ on prednisone now what HELP
Reply #18 - Dec 25^th, 2009 at 4:36pm

I'm on it tomorrow! truth be told tho/// that kip 9 that followed a kip 5 that I shook off with ice and shower in 20 minutes,, (followedin10minutes)I couldn't shake for an hour and a half,was too much!! times like that begging for god to take it away/ I'm not thinking much about side effects of pred, I'd pretty much do whateverit took. I am a little encouraged that everything you guys tell me to try has worked! starting with the pred several years ago.

honestly, I used to think ofmyself as in good health. now i'm realizing that I/we have the worst disease malady, there is! sorry, not having much of a Christmas... boo hoo poor poor me

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: new/ on prednisone now what HELP Reply #19 - Dec 25^th, 2009 at 5:21pm Quote: now i'm realizing that I/we have the worst disease malady, there is! Gotta disagree with you there, brother. This one won't kill you. Have you thought about going the clusterbuster.com route?
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saxman CH.com Junior Offline I Love CH.com! Posts: 80 portland or Gender:	Re: new/ on prednisone now what HELP Reply #20 - Dec 25^th, 2009 at 6:56pm i know i'm just a mess, no sleep in 3 days got to work tomorrow
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