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Topic: So this is where we go . . . (Read 462 times) |
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Splitten
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So this is where we go . . .
« on: Apr 28th, 2007, 1:39am » |
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Hello everyone! I'm Splitten, 45yo M, Episodic, CH since I was 18 years old in the US Navy.
This is my first cluster in just shy of 10 years! (Thought I had them beat . . )
My Mother also had CH and oddly enough we both started getting them around the same time. I mean, in 1980.
Currently I am on O2, Prednisone, and Maxalt.
Has anyone had any luck with the Maxalt? Either MLT (Melt) or regular? They seem to work most times but they, like Imetrex, can be very expensive.
Anyway, I am very glad I found you and look forward to hearing from you!
Thanks!
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Guiseppi
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Re: So this is where we go . . .
« Reply #1 on: Apr 28th, 2007, 1:46am » |
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A strong vote for the oxygen, still my first line abortive when I'm on cycle. I've never tried maxalt. I use lithium as my prevent, with 02, cafergot and the occasional imitrex jab as my abortives when I'm getting beat down.
Welcome to the board, some of the maxalts will be along shortly I'm sure!!! The longest remission I've had was 2 years, and I started to convince myself they were gone too..............the disappointment of it all!!!
Guiseppi
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Linda_Howell
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Re: So this is where we go . . .
« Reply #2 on: Apr 28th, 2007, 10:53pm » |
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Maxalt "melts" The kind you put under your tongue work fine.
HOWEVER...I am one also who would reccomend oxygen. It is safe, it's cheap, it works for about 75% of us and is the 1st. abortive for us to use.
Please ask you DR to precribe it.
in the meantime try strong coffee or a Red Bull.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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TonyG1
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Re: So this is where we go . . .
« Reply #3 on: Apr 28th, 2007, 11:10pm » |
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Maxalt MLT works fine provided you take it before the hit has a chance to ramp up to an unmanagable level.
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Splitten
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Re: So this is where we go . . .
« Reply #4 on: Apr 29th, 2007, 12:26am » |
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Thanks, just have heard so little about the Maxalt.
I do have Oxygen, thank God! Most times it works however this mornig I woke around 5:30am with about a 5, sucked down some oxygen for about 15min, fekt better if not somewhat "bruised". About 20 in later had a rebound headache tht completely closed my eye, shot to about a 8 and stayed there for 4 hours! Not my normal cluster. I am a little be lucky when it comes to my clusters. Usually they last for about 90 min untreated. Finally at the 4 hour mark I cried "Uncle" and took a Vicaden. ( I hate taking pain pills!!!)
THen headache nver really wnet away, just dulled. So here I sit, 9:25PM, and I still have that nasty rebound headache!
Thanks again for the replies and for being here. This is day 21 of my latest cluster and I am starting to let it get to me . . . .
God Bless
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Cathi04
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Re: So this is where we go . . .
« Reply #5 on: Apr 29th, 2007, 1:34am » |
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Welcome, Splitten! You have found the very best place for a CH'er...EVER! Tons of support, info and understanding.
The beast is one cantankerous curmudgeon. He left you alone for 10 years?? Congrats on that, but ohh, how it sucks that he found your address again!
Someone's gonna come in and talk to you about the Vicodin....I'll leave that alone.......
One thing I want you to remember...
The Beast NEVER gets to win! You are stronger than he is!
Now, hoping you wake up PF.please keep us posted.......
PFDAN to you!
Cathi
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Rosybabe
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Re: So this is where we go . . .
« Reply #6 on: Apr 29th, 2007, 8:41pm » |
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Hi!
Welcome aboad!!
I have tried Maxalt and it does work, but yes it is expensive. Cafergot its cheaper but you have to take it earlier to give it time to work. O2 is the way to go, maybe you are not having the proper mask or the right flow. Check that out.
About Vicodin, narcotics do not work well with CH, they do cause rebounds and of course addiction.
Hope you are able to talk to your Dr, about some Imitrex in shots, they work faster and then you will not need narcotics for the pain. Red Bull and very strong coffee works sometimes.
Wish you cycle comes to an end pretty soon.
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Guiseppi
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Re: So this is where we go . . .
« Reply #7 on: Apr 29th, 2007, 10:46pm » |
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One more thing to try! If I use only the oxygen I always get the CH back within 20 minutes of shutting off the 02. Now I pop a cafergot when I start up the oxygen. The 02 beats it down, the cafergot buys me up to 12 hours.
Careful with the vicodin! I started to like it a lot!!!! In hindsight it really didn't do much except for the shadows, and once I got good with the oxygen and cafergot I didn't require the vicodain anymore. Hope you have the shortest cycle ever!
Guiseppi
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Splitten
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Re: So this is where we go . . .
« Reply #8 on: Apr 30th, 2007, 2:04am » |
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I like the idea of the Red Bull. I will have to stock up . .
. . as for the Vic . . .In 27 years of living with CH (albeit with a long and wonderful remission) I have only used a narcotic twice. I get it. They really don't work. When in a full blown Cluster, the stongest pain killer just won't touch 'em. And after the headache is gone you get to live in a funky haze for hours. No thanks. That said, I do appreciate the concern and care. Thank you!
Now, Caffergot. I tried those during my last cluster back in 97. THey didn't do a thing for me. Maybe they have found new dosing or timing. Aa s I recall the doctor was using it as preventive or a cycle stopper. Just as with the Prednisone, I get a couple of days of relief then the cycle comes on stronger. Almost as if the beast is smarter than the meds.
The Oxegen is still my best friend, (that and the people who deliver those wonderful E cyliders).
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Guiseppi
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Re: So this is where we go . . .
« Reply #9 on: Apr 30th, 2007, 11:54am » |
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In the early 80's I was given cafergot as an abortive. It never worked because my HA's ramp from 0-6 thru 8 in less then 10 minutes. Now I use it with the oxygen for a one two punch.
And my wife does get nervous over the long, loving stares I throw to the APRIA guy when he swaps my empty E's for fulls! 
Guiseppi
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Linda_Howell
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Re: So this is where we go . . .
« Reply #10 on: Apr 30th, 2007, 3:34pm » |
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Loving looks at the Apria MAN Guiseppi? (no wonder Cristy is concerned)
I too, however have a love/hate relationship with those very ugly bottles I keep in the bedroom, car, and garage. They do nothing for the decor of my house however and have considered asking Mel to knit me a cozy to hide them. lol
Splitten....that is a wonderfully long time between cycles and I am so happy that occured. May this just be a rogue phase for you and that you have another 10 years of being PF. I'll cross my fingers and toes for you.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Guiseppi
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Re: So this is where we go . . .
« Reply #11 on: Apr 30th, 2007, 3:40pm » |
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They do nothing for the decor of my house however and have considered asking Mel to knit me a cozy to hide them. lol
Okay ladies....(or guys if you knit)....I so see the potential for a booming market here. Cozies in various sizes for E, M ,etc. tanks!!!!
Guiseppi
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Rosybabe
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Re: So this is where we go . . .
« Reply #13 on: Apr 30th, 2007, 3:58pm » |
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That is a good idea Linda! I had mine covered with a blanket. I thoink I am going to get one of those but with an angel figure. I like angels.
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| « Last Edit: Apr 30th, 2007, 3:59pm by Rosybabe » |
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MaxPayne
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Re: So this is where we go . . .
« Reply #14 on: Apr 30th, 2007, 8:13pm » |
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Hey don't ever let the beast get to you. Just know that it's a cycle and that it will end. Mine ended 6 weeks ago after 13 weeks of the beast pounding on the walls I put up. Keep your spirit up brother, we're all with you here.
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Kontrolr
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Re: So this is where we go . . .
« Reply #15 on: May 5th, 2007, 12:35pm » |
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hi Splittin....hoping your finding something that has started working for you....i still kind of new to the meds thing myself being a long time sufferer and have just been recently diagnosed....so im not going to offer an opinon yet as im am still trying to figure out my cocktail, but i will swear by the o2 and the imitrex injections and prednisone thus far......and whats with all the loving looks to the apria guy??? is now a bad time to say i too drive for a gas and oxygen company!!!
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Rosybabe
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Re: So this is where we go . . .
« Reply #16 on: May 5th, 2007, 1:27pm » |
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on May 5th, 2007, 12:35pm, Kontrolr wrote:| and whats with all the loving looks to the apria guy??? is now a bad time to say i too drive for a gas and oxygen company!!! |
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Get us a discount!!!!
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