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Topic: My other family (Read 393 times) |
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Samurai
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My other family
« on: Jan 23rd, 2008, 10:03pm » |
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I have really missed you guys, and especially the understanding that comes with dealing with something of this caliber. My wife and her family are experiencing my headaches for the first time, and they are trying very hard to be understanding and helpful. My poor wife wishes she could do something, and says she wants her Jason back... Her mom has helped out immensely, and I am going to thank her again the next time I see her. The Mother (we call her that) is a nurse, and she talked to one of the nicer doctors and got me prescriptions for Prednisone and Verapamil. I was really excited about it, especially after not sleeping for a week! Well, it turned out that the Pred. was only for a 48 hour burst, and I had specifically described the taper, and I made the mistake of wondering aloud whether or not it would make the transition. Fast forward to the third day and I got hit, while we were at their house. It was nasty too, like breaking the cycle just pissed it off, anyway, I went back to Prednisone, since I had only done it for two days and I had another two day script. I just did some reading and it turns out the Verap. takes a couple weeks to become effective as a preventative. I just hope it kicks in soon. I know it's not the mother's fault, that's what the doc was told by a neuro, and it was close, but I guess she thinks I was being pessimistic about the Prednisone not taking care of it, and the Verapamil working right away. There's just no way to explain the pain, the long nights wandering the house trying not to wake my wife up as I suffer, and the fear of trying to sleep only to be wrenched awake into that pain.....
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Jonny
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Re: My other family
« Reply #1 on: Jan 23rd, 2008, 10:25pm » |
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on Jan 23rd, 2008, 10:03pm, Samurai wrote:| There's just no way to explain the pain, the long nights wandering the house trying not to wake my wife up as I suffer, and the fear of trying to sleep only to be wrenched awake into that pain..... |
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You dont have to explain it to us, bro......we live it!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Samurai
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Re: My other family
« Reply #2 on: Jan 23rd, 2008, 10:45pm » |
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Sorry, I guess I was kinda venting there....
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vietvet2tours
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Re: My other family
« Reply #3 on: Jan 23rd, 2008, 10:48pm » |
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Pred. is supposed to ramp up and taper down.I never heard of a 48 hour burst.
Potter
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Kill em all let God sort em out
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Brew
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Re: My other family
« Reply #4 on: Jan 23rd, 2008, 10:54pm » |
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on Jan 23rd, 2008, 10:48pm, vietvet2tours wrote: Pred. is supposed to ramp up and taper down.I never heard of a 48 hour burst.
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Taper down, yes. Ramp up, no. I've always started at the maximum dosage then slowly tapered down from there.
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Always remember that you're unique, just like everyone else.
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Samurai
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Re: My other family
« Reply #5 on: Jan 23rd, 2008, 10:56pm » |
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I don't know where this neuro got his info, but he had me take 20mg four times a day and it shut the cycle down in one day, but I was expecting more so that I could taper off.
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Callico
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Re: My other family
« Reply #6 on: Jan 23rd, 2008, 11:01pm » |
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Vent on Bro.
That's what we are here for. There is a big difference between venting and whining. Venting is welcomed. 
Glad you are back, but wish you never needed us again.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Brew
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Re: My other family
« Reply #7 on: Jan 23rd, 2008, 11:05pm » |
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My doc always has me take the entire day's dosage first thing in the morning - something about mimicing the body's natural production of adrenaline or some such thing. But it's always been for about 10 days or so while the other preventatives (verapamil, lithium, etc.) time to become effective.
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Always remember that you're unique, just like everyone else.
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vietvet2tours
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Re: My other family
« Reply #8 on: Jan 23rd, 2008, 11:07pm » |
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on Jan 23rd, 2008, 10:56pm, Samurai wrote:| I don't know where this neuro got his info, but he had me take 20mg four times a day and it shut the cycle down in one day, but I was expecting more so that I could taper off. |
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Bummer dude that would make ya crazy.
potter
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Kill em all let God sort em out
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Samurai
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Re: My other family
« Reply #9 on: Jan 23rd, 2008, 11:13pm » |
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That's the hard part, trying to get the mother to understand that I wasn't being pessimistic, or ungrateful, I was just afraid what would happen if it wasn't long enough. Then when I got hit again it was like walking into the middle of a cycle, not cool.
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vietvet2tours
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Re: My other family
« Reply #10 on: Jan 23rd, 2008, 11:16pm » |
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Do ya have oxygen? If not get on the ball and giterdone.
potter
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Kill em all let God sort em out
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Sean_C
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on Jan 23rd, 2008, 10:25pm, Jonny wrote:| You dont have to explain it to us, bro......we live it! |
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Yes we do
Hang tough Samurai.
Sean...........................
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AlienSpaceGuy
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Re: My other family
« Reply #12 on: Jan 23rd, 2008, 11:41pm » |
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The usual prednisone treatment lasts for a week or so, followed by a taper down. Prednisone shuts down the body's adrenaline production and takes over its function. The taper is mandatory, to give the adrenalin production a chance to recover and take over again.
The Italians have developed a one or two dose treatment (with very large amounts). This burst is short enough, so that no tapering down is needed. So it would be interesting to know the dose of Samurai's 2-day treatment.
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AlienSpaceGuy believes only in scientifically sound methods and hates snake oil vendors.
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Samurai
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Re: My other family
« Reply #13 on: Jan 23rd, 2008, 11:56pm » |
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The dosage was to be 20 mg every 6 hours, for 48 hours. That ends up at 80mg a day, which doesn't sound much higher than what others are taking. Maybe he was using this theory and had the numbers wrong?
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vietvet2tours
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Re: My other family
« Reply #14 on: Jan 24th, 2008, 12:06am » |
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How bout that oxygen troop. I hate bein ignored.
Potter
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Kill em all let God sort em out
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Samurai
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Re: My other family
« Reply #15 on: Jan 24th, 2008, 12:07am » |
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I'm on that one as we speak, just sent an email to Batch.
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nani
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Re: My other family
« Reply #16 on: Jan 24th, 2008, 12:09am » |
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on Jan 23rd, 2008, 11:05pm, brewcrew wrote:| My doc always has me take the entire day's dosage first thing in the morning - something about mimicing the body's natural production of adrenaline or some such thing. But it's always been for about 10 days or so while the other preventatives (verapamil, lithium, etc.) time to become effective. |
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Same for me, except the doc prefers an 8 day taper.
The whole dose in the AM, tapering down by 20 mgs every 2 days
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Others may come and go, but MY power is MINE.
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George_J
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Re: My other family
« Reply #17 on: Jan 24th, 2008, 12:23am » |
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on Jan 23rd, 2008, 10:25pm, Jonny wrote:
You dont have to explain it to us, bro......we live it!
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Couldn't have said it better.
Hang in there--sounds like you're on the track to kick it to the curb.
All the best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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sandie99
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Re: My other family
« Reply #18 on: Jan 24th, 2008, 2:56am » |
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Feel free to vent any time you'll need it. Lots of understanding folkes are always here to listen.
If you worry about your supporters, why not give them a hint about ther supporters board right here? They could find other supporters to talk to. 
Lots of PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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DennisM1045
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Re: My other family
« Reply #19 on: Jan 24th, 2008, 12:19pm » |
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Vent away Jason. No appologies necessary. This what we do. This is how we live.
I hope the verapamil gives you some relief soon.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Charlie
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Re: My other family
« Reply #20 on: Jan 24th, 2008, 8:37pm » |
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I hope we get to meet you and I hope you get some relief.
They're right about living it. I'll never forget seeing a lot of other people with this same horror. It was wonderful...and sad...knowing that everyone there knew exactly what to say and not to say.
Good luck.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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