Hi everyone.  I am a returning member from about 10 years ago.  At that time i was fighting the pain and confusion of being diagnosed with CH.  I received tons of support - that helped me from putting my head thru that "one last wall"

My doc finally found what worked for me - verapamil and prednisone with the Maxalt backup.  And it did work.  For years.  And then the prednisone shut my body down.  I got a flesh eating bacterial infection and almost died.  I am now recovering from that and OFF the prednisone.  And the beast decided i should start a cycle.  Currently 6 weeks in on 4-5 per day.  Happy to be alive only takes you so far at 2 am.
Anyway - happy to be back on this site - like i said it saved me once.

Welcome back, Matt.  Sorry to hear the beast is back, especially after all you have been through.  Scary stuff!!! 

Check out the oxygen info link on the left and start reading.  Lots of updated info since you were here last.

What she said. A bunch of people for whom oxygen"didn't work" are now discovering abort times of less then 10 minutes. The HOW is critical, read the  02 link and fire away with the questions. Hang in there.

Joe

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And these.  As per Marc.

               Potter

Potter wrote on Dec 22^nd, 2010 at 5:04pm:

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Thanks for posting that Potter, that's the first I've seen Marc's 4 step program (great info Marc!)

Hi Matt, I'm sorry you are suffering so.  That many hits a day sucks to but it mildly.  I'm glad you're recovering from the bacterial infection.   I'm a supporter for my hubby and we had a scary incident with continual pred use as well, and you're so right when you say it's extremely hard on the body.  In his case, it's like the necessary of two evils (pred or cluster).  Hoping to go a different route, or at least not so long, next time around. 

I'm sure much has changed in the ole prevents & aborts arsenal since you were here 10 years ago, and you're in good hands.  Read all you can, ask questions, and listen to the advice you'll be offered.  This group is the best.   If you have a supporter, send them this way too.  The site is for your support system as well.  Take care and wishing you some painfree time very soon.   :)

Hi Matt,

If you get up to speed with conventional meds and are sure that you're using O2 correctly, if in doing that you still haven't found satisfactory relief, please check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. A couple of videos to provide an introduction: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. The ClusterBuster website has a forum much like this one. Many folks are members of both forums. Good luck.

Ron

Yep, it's true the newer method of O2 use is so much more effective for most of us.

Sorry to hear about your prednisone disaster. That happens a LOT. :( :'(

Good 'ol Bonkers/Ron has brought up "busting" in the post above. It's something that many with stubborn cases are turning to lately due to the fact that it's a natural, non toxic preventative approach (even if not entirely legal) that for 75 - 80% or so of those who have tried it has been shown to be more effective than our arsenals of drugs.

Here's a good Newsweek article on the subject, if you'd like some reading along with the fine videos Ron offered up.  :)
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Sitting on the porch waiting for my O2!  Yeah - cause i'm afraid to get behind the wheel right now.  Bout due for my 10:30 appt with the MF.  After my 2:00am and 4:00am appts, i'm a little tired of hearing from him.  6 weeks in, 6 to go!  What doesn't kill me.......really pisses me off (is that how that saying goes??)

What doesn't kill me.......really pisses me off (is that how that saying goes??)

I go with what doesn't kill ya just hurts like hell!!! ;D

Joe

"MF".... Hmmm I kinda like that - might adopt it's use instead of "the beast" myself.  :o :D

bejeeber wrote on Dec 23^rd, 2010 at 5:39pm:

"MF".... Hmmm I kinda like that - might adopt it's use instead of "the beast" myself.  :o :D

That's short for "my friend" right?   :D

of course it is.... ;)

his wife wrote on Dec 23^rd, 2010 at 6:20pm:

bejeeber wrote on Dec 23rd, 2010 at 5:39pm: "MF".... Hmmm I kinda like that - might adopt it's use instead of "the beast" myself.  :o :D That's short for "my friend" right?   :D

You can pick your own friends so it doesn't quite apply.

Mike NZ wrote on Dec 23^rd, 2010 at 10:53pm:

his wife wrote on Dec 23rd, 2010 at 6:20pm: bejeeber wrote on Dec 23rd, 2010 at 5:39pm: "MF".... Hmmm I kinda like that - might adopt it's use instead of "the beast" myself.  :o :D That's short for "my friend" right?   :D You can pick your own friends so it doesn't quite apply.

Well I'm certain it's not short for "my family" and we all know you can't pick them.  Gotta love 'em anyway.

I think I know what he really meant and it's a pretty accurate description  ;)

Got my O2 and MF (my friend....) showed up to help me test it - God Love Him!  Little did he know i was in for a 5 min abort!  Hell to the Yeah!!!!!!!!!!

Great news Matt!!  Glad to hear it!  Hope you have a great holiday!

MattB mercilessly treating the MF to a knockout punch with O2!

Now THAT"S some great holiday news.  ;D :)

To Matt and to the title of your thread:

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MattB wrote on Dec 24^th, 2010 at 1:48pm:

Got my O2 and MF (my friend....) showed up to help me test it - God Love Him!  Little did he know i was in for a 5 min abort!  Hell to the Yeah!!!!!!!!!!

You now know why we rave about oxygen and tell people to just get it!

So glad it's proved the silver bullet for you! The beast has lost a lot of his fear factor for me since I found Oxygen. He's still a pain, but not the terror he once was. Congrats, great Christmas present! :)

Joe

now i remember why i loved this website.  You guys are great.  I hope everyone has a PF holiday!

wow - gonna use 3 tanks in 2 days.    Seriously???  Who the hell invited the MF for Christmas? >:(

Armed with 5 O2 tanks, a full script of verapamil and maxalt and a case of red bull and  I'VE BEEN PF FOR 4 DAYS!!!!!!!!!!!

at least i'll be ready for the next round.....

[smiley=me&mb.gif]

Here's hoping your glass at midnight is full of something other than red bull!  To a pf new year!

Please read up on drinking Red Bull while taking verapamil. It can be done, however you should proceed with extreme caution. Overdoing it with the Red Bull can cause problems with the ticker.

Brew wrote on Dec 31^st, 2010 at 5:49pm:

Please read up on drinking Red Bull while taking verapamil. It can be done, however you should proceed with extreme caution. Overdoing it with the Red Bull can cause problems with the ticker.

Brew, is that because of the caffine or taurine or something else?  Is there a better alternative energy drink other than red bull for those on high doses of verap?   Don't want the ole ticker to give out  :o

It's because of the taurine. And any energy drink without taurine would be worthless in my book.

I know Amp has very little taurine.

his wife wrote on Dec 31^st, 2010 at 5:52pm:

Is there a better alternative energy drink other than red bull for those on high doses of verap?

Espresso, double shots.  Don't know if better, but it works.

Good to know guys, thanks for the info.  I really do learn something new here everyday!   :)