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I think I'm glad I found all y'all... (Read 940 times)
outontheair
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I think I'm glad I found all y'all...
Feb 21st, 2011 at 1:06am
 
'98's when these things hit me.  More correctly, '98's when this was diagnosed.  I am fortunate (or maybe stubborn), but I manage to outrun the Demon after only a several weeks when he's around, and he stays away for a few years at a time before checking in again. 

I swear.  I thought I was nuts before a new doc started laughing when I was BEGGING him to fix this "sinus" infection I thought I had.  Wigraine?  I think that's what he gave me.   They don't make it anymore...$12 for 2 weeks.  i think the margin wasn't enough for the manufacturer.  Immitrex is up to $100/pill.  I carry a script for Relpax now.  Not as good as immitrex, but it works, and is a HELL of lot cheaper!

I've tried the gamut of meds when these things hit.  I've tried many mentioned "non-traditional" therapies as well (lock the door, close the shades, hide the car keys/cell phone, brew the "tea" therapies).  That didn't go over too well with my family though...

I've provoked known short-fused people when the first aura of the first headach of a new cycle came on and I didn't have the pill on me and gotten into knockdown fights to distract from the pain because I didn't have the immitrex on me.  NOBODY has been able to inflict enough pain to distract me from those headaches. I don't do that anymore. The immitrix/relpax is ALWAYS on me now.  I don't heal from fisticuffs as quickly as I used to.

The Net has made this SOOOO much more bearable.  I chuckle, respectfully, at the stories I read.  It is SO NICE to run into people who appreciate how freaking BIZZARE these things are!  THANK YOU!

I'm enjoying reading thru the posts. 
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« Last Edit: Feb 21st, 2011 at 1:32am by outontheair »  
 
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wimsey1
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Re: I think I'm glad I found all y'all...
Reply #1 - Feb 21st, 2011 at 8:22am
 
Uhm...there are much better ways of aborting a hit than hitting someone else, or yourself for that matter. The pills are very slow. Why not try injectables? Or nasal sprays? I'm not clear, though, on whether you're in cycle now or not? If you have the beast managed, what prompted you to write? Please do be aware they morph and can take us by surprise. Share some more of what you have used effectively, or discarded as useless. And stick around. Blessings. lance
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Guiseppi
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Re: I think I'm glad I found all y'all...
Reply #2 - Feb 21st, 2011 at 11:31am
 
I'm damned glad you found us! CH'ers on or off cycle need to spend time reading the boards just to keep up to speed on the effective treatments, old and new!

Please read this link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

33 year sufferer here and NOTHING compares to the speed, ease of use, lack of side effects and COST per abort of oxygen. I average about 6-8 minute aborts. It certainly has changed my outlook towards the beast. Welcome to the board.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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outontheair
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Re: I think I'm glad I found all y'all...
Reply #3 - Feb 21st, 2011 at 12:58pm
 
Hey wims...yeah.  I know there are better ways to manage 'em then a bar fight!  Was in a pinch that day, and didn't want to be sprawled on the floor wailing in front of that group of friends because of a headache. That group of guys wouldn't get it.  Yes...bar's are bad when in a cycle.  AMAZING how easy it is to pass on a beer during a cycle.

What prompted me to write:

Ok-I was surfing for updated info on treatments/therapies/etc/studies the other night because it was warm.  Am in VA.  The topic of the day was "spring is coming".  For me, spring is a game of Russian Roulette, but it's not my finger on the trigger.   So I said hit the net...get the current info on hand, and brace...just in case the band starts warming up in VA this time! (LOVE "the devil" section on the site).

Off cycle, but on edge (am due). 

Prednisolone!  It has always worked proactively.  Immitrex reactively.  Pills.  They work for me.  Quickly.   4-7 weeks low dose step down bubble pack on the prednisolone, immitrex in my pocket just in case.  Last spring prednisolone made me REALLY JIGGY.  WIGGED my (then) roomate out.  (She was thinking of psyche wards). So I just went into hiding, and hit the house (very very remote/secluded) in the woods of CT (nobody can hear you scream...)

I am looking for new proactive info/recomendations.

Reactive-the immitrex works fast.  I chew em.  Dont' know if it really makes a difference but they hit fast.  Maybe 15 min after taking 'em I'm fit to be out in public again.  But I take em 1) when i know I'm in a cycle 2) at the first nasal twitch or first pluck on the optic nerve!

The Relpax knocks the headaches out, but I feel kinda beat up for a while afterward.  Don't know if it's just that it's not immitrex or that it's a significantly lower dose.  (100mg immitrex vs 40mg Relpax).

Injectables...

I passed out when they pierced my ear.  If doc wants blood work at a checkup and didn't tell me in advance he doesn't get it if someone didn't drive me to the appt.  Needles are a HARD limit.  Funny, no?  Can take a headache (so far) but I turn green at the THOUGHT of a needle!  Can't watch med shows on TV.  I wake up with "lost time" if I don't turn my head quickly enough during and ER scene!

Nasal Sprays:

Got the steroid spray once.  Eh.  Didn't work so well for me.

Morphing?  That's what I'm truly afraid of.  Upside to this site is the "it's not just me" factor.  Downside-scares the S*** outta'me even IMAGINING they could get worse!

Yet.  I KNOW I'm lucky...just episodic...

I want to know about the start of a cycle.  Does the alarm clock just go off one day?  I get warned over the course of 3-6 days beforehand.

Spring...ya think it's sinus at first...then you start paying attention (and make a Dr. appt real fast).  Mine "try to find a time".  The cycle starts with the aura (light sinus/eye on one side).  The auras swing each day, but get closer together (and I check back with the Dr. to be sure he knows if he gets a cancellation to call me and I'll be right in).  But once they go full blown they've settled on their time slot and are no doubt alarm clocks.  Former regular Dr. would just phone in the scripts and get me in earlier.  Had moved, and last cycle had to find a new Dr.


That's all of it in a nutshell for now...

Peace.  Seriously.




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Karla
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Re: I think I'm glad I found all y'all...
Reply #4 - Feb 21st, 2011 at 1:20pm
 
I dont think you understood.  Imitrex comes in nasal spray now.  It kicks in in less than 10 min.  Is fast acting like the injections only without the needles!  Much faster than the pills.  Try it you may find you like it much better than the pills. 

Also read up on oxygen and try using it.  It helps almost 100% of the time for most people if used correctly.
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« Last Edit: Feb 21st, 2011 at 1:21pm by Karla »  

Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi
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Guiseppi
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Re: I think I'm glad I found all y'all...
Reply #5 - Feb 21st, 2011 at 1:39pm
 
Careful with the pred, most of us stay with about a 10-14 day taper when our cycles first start. There are some horror stories on the board from people who stayed on pred too long. Ruins your joints and plays havoc with yoru internal organs. Are you working with a headache specialist neuro? Your current regimen tells me probably not.

Verapamil is a common first line prevent. We use it at doses higher then it's blood pressure regulating common useage, some go as high as 960 mg a day to get relief. Takes up to 2 weeks to become effective, that's when most of us do the pred taper, get us over the first hump.

I use lithium on cycle, at 1200 mg a day it blocks 60-70% of my attacks. At that dose if I didn't tell you I was on it you'd never know. Topomax is a prevent used by many on the board, I've never tried it. A small percentage combine the verapamil and the lithium to get decent relief, sometimes called the "chronic cocktail.

The imitrex injectable comes in a stat pen. You never see the needle. looks like a ball point pen you push against your leg or butt and press a button. Attack is gone in minutes.

Going chronic. yeah, it will happen or it won't! 33 years episodic, my cycles are getting farther apart as I get older, still haven't gone chronic. Worrying about it just makes your tummy hurt!

My cycles start slowly with mild attacks and gently ramp up to full force within a couple of months. They kind of fade outt he same way. Others just get creamed outta the blue and they know it's back on again! Then their cycles end with a huge fourth of July grand finale. The most common characteristic of CH is how different we all seem to be! Grin

Do look into the oxygen, almost as past as the imitrex and no "hangover" side effects.

Keep reading, a knowledgeable CH'er hurts a hell of a lot less!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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outontheair
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Re: I think I'm glad I found all y'all...
Reply #6 - Feb 22nd, 2011 at 2:11pm
 
Yup.  Prednisolone is weird in itself.  Have had more than one Doc be VERY careful with it.  And last time the first week on it really made me weird.  Am familiar with the O2 idea, but haven't tried.  Was in Western NY and there weren't any oxygen bars to try before committing to buying it.

Am intrigued by the Verapamil vs prednisolone info I've been reading.  Only real concern about it was, what, calcium leeching?  Sounds like maybe just a supplement when on it, no?  Verapamil looks like the next thing to talk to the Doc about beforehand for me. 

Hangover effect?  First time I heard it described that way, but it's appropriate.  More like a New Years Eve hangover...but a hangover none the less (without the pleasant nite-b4 memories)!

Thnx... Wink
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« Last Edit: Feb 22nd, 2011 at 2:12pm by outontheair »  
 
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BarbaraD
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Re: I think I'm glad I found all y'all...
Reply #7 - Feb 22nd, 2011 at 4:12pm
 
O2 bars are NOT where you need to start with the oxygen...

We use it in HIGH liter doses (15-25 liters per minute) with a NON-rebreater mask (look on the left at the oxygen info -- it explains it better than I can).

I use a Demand Valve and swear by it (it's more expensive, but I'm chronic and LOVE it).

I'm on topamx for prevent - it doesn't STOP the CH, but allows me to live half sane most of the time. I use O2 as an abort and very seldom have to go to any other meds. It just kills the headache like a miracle.

BUT you HAVE to do it RIGHT or it won't work at all.... Trust me on that one... (And I'm OLD - you can trust me!)

Welcome to the family in Clusterville. Read read read... We're here to help and answer questions. I doubt you can come up with anything that hasn't happened to some of us at one time or another... I've been here since 98 and have heard some pretty wild things (and told a few on myself during that time). Heck, I wore banana peels around my head all day one day (my husband heard that would help). Didn't do much for the CH, but the fruit flies loved me... Smiley

A good neuro and a big bottle of O2 and what most of us suggest on the front...

And spring is not real good for any of us... Hope your cycle is short and not too bad... But we're here for you... You're not alone anymore... Kiss
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