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        Daily Chat >> General Posts >> My other family
        
(Message started by: Samurai on Jan 23^rd, 2008, 10:03pm)

Title: My other family
Post by Samurai on Jan 23^rd, 2008, 10:03pm

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.....

Title: Re: My other family
Post by Jonny on Jan 23^rd, 2008, 10:25pm

on 01/23/08 at 22:03:00, 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.....

You dont have to explain it to us, bro......we live it!

Title: Re: My other family
Post by Samurai on Jan 23^rd, 2008, 10:45pm

Sorry, I guess I was kinda venting there....

Title: Re: My other family
Post by vietvet2tours on Jan 23^rd, 2008, 10:48pm

Pred. is supposed to ramp up and taper down.I never heard of a 48 hour burst.

Potter

Title: Re: My other family
Post by brewcrew on Jan 23^rd, 2008, 10:54pm

on 01/23/08 at 22:48:50, vietvet2tours wrote:

Pred. is supposed to ramp up and taper down.I never heard of a 48 hour burst.

Taper down, yes. Ramp up, no. I've always started at the maximum dosage then slowly tapered down from there.

Title: Re: My other family
Post by Samurai on Jan 23^rd, 2008, 10:56pm

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.

Title: Re: My other family
Post by Callico on Jan 23^rd, 2008, 11:01pm

Vent on Bro.

That's what we are here for. There is a big difference between venting and whining. Venting is welcomed. ;;D

Glad you are back, but wish you never needed us again.

Jerry

Title: Re: My other family
Post by brewcrew on Jan 23^rd, 2008, 11:05pm

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.

Title: Re: My other family
Post by vietvet2tours on Jan 23^rd, 2008, 11:07pm

on 01/23/08 at 22:56:40, 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.

Bummer dude that would make ya crazy.

potter

Title: Re: My other family
Post by Samurai on Jan 23^rd, 2008, 11:13pm

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.

Title: Re: My other family
Post by vietvet2tours on Jan 23^rd, 2008, 11:16pm

Do ya have oxygen? If not get on the ball and giterdone.

potter

Title: Re: My other family
Post by Sean_C on Jan 23^rd, 2008, 11:18pm

on 01/23/08 at 22:25:42, Jonny wrote:

You dont have to explain it to us, bro......we live it!

Yes we do ;;D

Hang tough Samurai.

Sean...........................

Title: Re: My other family
Post by AlienSpaceGuy on Jan 23^rd, 2008, 11:41pm

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.

[smiley=smokin.gif]

Title: Re: My other family
Post by Samurai on Jan 23^rd, 2008, 11:56pm

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?

Title: Re: My other family
Post by vietvet2tours on Jan 24^th, 2008, 12:06am

How bout that oxygen troop. I hate bein ignored.

Potter

Title: Re: My other family
Post by Samurai on Jan 24^th, 2008, 12:07am

I'm on that one as we speak, just sent an email to Batch.

Title: Re: My other family
Post by nani on Jan 24^th, 2008, 12:09am

on 01/23/08 at 23:05:36, brewcrew wrote:

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

Title: Re: My other family
Post by George_J on Jan 24^th, 2008, 12:23am

on 01/23/08 at 22:25:42, Jonny wrote:

You dont have to explain it to us, bro......we live it!

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

Title: Re: My other family
Post by sandie99 on Jan 24^th, 2008, 2:56am

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

Title: Re: My other family
Post by DennisM1045 on Jan 24^th, 2008, 12:19pm

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-

Title: Re: My other family
Post by Charlie on Jan 24^th, 2008, 8:37pm

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