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Topic: ok troops, I need your help :) (Read 296 times) |
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PollyPocket
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ok troops, I need your help :)
« on: Sep 2nd, 2006, 9:07pm » |
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Y'all know I'm in cycle and the vrap is doin' its thing fairly ok-ish. Still getting some more difficult hits but I'm ok REALLY.
Sooooo, my husband Darryl, who has been a wonderful but pain-in-the-ass supporter still doesn't get it when I won't take anything at the first sign of a hit. Like right now, its like a thumb being pushed against my temple and some pressure around my eye but no big deal. I won't take any abortive till around a 6 or 7 depending on how its going. I mean, I can deal with being what to me is pretty uncomfortable but to him I must be ready to die. He says if it were him, he'd take something right away so that he wouldn't have to feel any pain at all, and I'm thinking, "I've faced a cycle of f'in 10's, this is a breeze!"
So help me out here folks, especially supporters please. Help me to help him understand that popping a pill at that first twinge is not only a waste of a pill, but not necessary until its NECESSARY. He won't get on here and get on the supporters page b/c he is not very puter savvy, but I sure can read your responses to him!
Thanks guys!
Jen
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Brew
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Re: ok troops, I need your help :)
« Reply #1 on: Sep 2nd, 2006, 9:21pm » |
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But in my experience, Jen, if I wait until it hits 6 or 7, it's too late for me. If it works for you, that's cool. But if it was me in your shoes (that doesn't make me gay, does it? not that there's anything wrong with that....) I'd be popping that pill as soon as I had any inkling that it was headed toward the 5+ region.
Now, if you can abort AFTER you've reached a 6 or 7 and you're comfortable waiting that long, then God love ya. Do it the way to which you've become accustomed. And Darryl, you should support her decision to deal with it this way. She's right, you know - those of us who've hit 9's and 10's have learned to deal with less. Not that it makes us heroes, it's just that we deal with these things differently.
Bill
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Mosaicwench
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Re: ok troops, I need your help :)
« Reply #2 on: Sep 2nd, 2006, 9:23pm » |
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I'm a supporter and I gotta tell you I kind of agree with him . . . .or perhaps more correctly, I see his logic from a supporter's point of view..
Why suffer through a 6-7 when an abortive will take it away or down to a 1 or 2? From this supporter's point of view NO PAIN is the only acceptable pain . . . . I hate to see any pain in my clusterhead hubby.
Just my opinion and probably not what you wanted to hear.
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Kevin_M
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Re: ok troops, I need your help :)
« Reply #3 on: Sep 2nd, 2006, 9:30pm » |
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I'm glad to hear the verap is working for you Jen. I only judge by experience with it. Heavy shadows and close breakthroughs are playing it close to the minimum with the dosage. Things can go either way there at vulnerable times but, yeah, when I alter the dosage, I see how the shadows develop or eventually subside before reupping or leaving it there.
Near breakthroughs take confidence in your prevent level to leave it there. Usually I'll play with that level if I find I'm going to the abortive a few times with breakthroughs. As long as a hit doesn't develop that requires an abortive, that's ok.
If I'm not near oxygen I use trex n/s, so judging them can be tricky. If it goes too far, I'm in for a bit of a ride before n/s can abort. Done a lot of pain level judging myself, especially at work, and usually judge right, but... mistakes are made there also. To do away with that, I up the verap a touch.
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| « Last Edit: Sep 2nd, 2006, 9:32pm by Kevin_M » |
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PollyPocket
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Re: ok troops, I need your help :)
« Reply #4 on: Sep 2nd, 2006, 9:35pm » |
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Thanks, and actually, I really do appreciate your opinion. I won't suffer thru a 6 or 7 if I am pretty sure its going to ramp up higher. Its when I'm at a 1-3 that he wants me to take something and that to me is a waste when I might need it when I'm hitting upward of a 5 and I know its gonna get worse.
And I do understand what you are saying about the only acceptable pain is no pain cuz that is exactly how Darryl is with me. I know its b/c he loves me, but he also has to understand that I know what level I can handle and I know hits at 5 or less suck, but it'll end and I'll be ok when its over. He has seen me at 8's and 9's and I think he worries they will all go like that. Tonight is a good example, the shadowing has lingered but no hit other than some droopage, a little sinus, eye and temple pressure.
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Dape
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Re: ok troops, I need your help :)
« Reply #5 on: Sep 2nd, 2006, 10:54pm » |
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Hi Jennifer & Darryl,
I certainly understand what you are saying Jennifer as i am exactly the same and my supporter sounds a bit like Darryl, as soon as she sees that the beast is there she is off to get me my O2, imi and icepack, which dont get me wrong is fantastic of her, but it just drives me crazy at times as it is though she is over compensating for the fact that there isnt really anything she can do.
I used to grab the full beast fighting kit at the first sign of him and for a while it worked for me but then i found that i was getting hit twice as much and twice as hard and also that the meds wernt doing the job for me.
I soon stopped doing this not only because i believe, (imho) it was causing rebounds, but also they are pretty strong meds and put quite a strain on our systems. So now i only grab the meds when i know that it is going to blow up and just tend to battle on with low kips.
I also know what it is like to watch a sufferer get hit as my younger sister has CH and i feel so useless because there isnt really anything i can do as i know that she will get on her O2 as soon as she knows she needs it.
I know that this isnt the same but as a sufferer when we see another getting hit we know 100% what they are going through and while supporters understand the natuer of the beast they can never understand fully what is going on inside our heads when we are getting hit as most of the time i dont even know what the beast is going to throw at me from 1 hit to the next.
I just try and remember that she is trying with the best intentions to do the thing that will take away my pain.
Dape
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E-Double
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Re: ok troops, I need your help :)
« Reply #6 on: Sep 2nd, 2006, 11:20pm » |
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I go through the samething and do the samething.
I will just c0ck my head to side and jam pressure points.
I might grab and icepack but tend to go about my business.
The thing is that what seems to be uncomfortable for us would probably lay somewhat out.
Those supporters who have tried to really educate themselves regarding CH realize how much pain we are in so they really do think we should wipe it out before the horror show begins
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Re: ok troops, I need your help :)
« Reply #7 on: Sep 2nd, 2006, 11:53pm » |
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Jen, I have had such a bad day today Ha wise that I have stayed away from the board.
As you know I have had such a great couple days news wise I can only be thankful to you and everyone else here. I am beside myself for being able to take so much pressure off of my main supporter (Linda), the love of my life.
I know that there is no hard and fast rule as to how to deal with this monster. We all use and try to share things that we hope will help each other.
I would love to talk to you and Darryl at any time if it would be of any help! I will Pm you my Phone# tomorrow, I Would do it right now but I am struggeling a bit just now.
BTW; have i told you that i love you lately? and that means you too Darryl!!
......tim
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maffumatt
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Re: ok troops, I need your help :)
« Reply #8 on: Sep 3rd, 2006, 12:04am » |
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Jenn I don't know what pill you take, but for me if I take a shot of trex on all my hits, the cycle won't quit. I only use it when I don't have access to O2, normaly at work. I know others have notised the same thing with Trex. Its a blessing and a curse at the same time.
Matt
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TxBasslady
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Re: ok troops, I need your help :)
« Reply #9 on: Sep 3rd, 2006, 12:29am » |
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Just as CH affects each of us differently, we tend to treat/medicate different.
I only use 02...and I hit that tank as soon as I feel the 1st twinge of pain. When I used to take triptans...I did tend to wait to see how bad I thought things were gonna get. I could bear the pain of a 4 or 5 with no meds...but if it started ramping I took the meds.
It's true that this causes us to endure more pain....but as individuals, we're the one who has to make the call.
Our supporters are angels...and God knows I love all the supporters.....but for me, my vote/decision on meds is all that counts. I have learned to deal with CH my own way....that's the way I prefer. Somethings...I just have to do by myself.
Jean
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Jonny
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Re: ok troops, I need your help :)
« Reply #10 on: Sep 3rd, 2006, 3:15am » |
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on Sep 2nd, 2006, 11:20pm, E-Double wrote:
I will just c0ck my head to side and jam pressure points.
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Holy shit!.....I do the same thing, I roll my head looking for that one position that will cut off the pain 
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BarbaraD
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Re: ok troops, I need your help :)
« Reply #11 on: Sep 3rd, 2006, 4:56am » |
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Jen,
down a can of Red Bull at the first sign of a shadow and then hit the O2. This will sometimes abort.
Hugs BD
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Fredmyyster
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Re: ok troops, I need your help :)
« Reply #12 on: Sep 3rd, 2006, 7:38am » |
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Im a firm believer in Better living through chemistry
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Charlotte
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Re: ok troops, I need your help :)
« Reply #13 on: Sep 3rd, 2006, 10:42am » |
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Jen, do you wait because the amount of medicine you get each month doesn't match the amount of headaches, or because there is one stage in the ramp up that works the best?
Also, after 8, 9, 10, then a 6 sometimes seems pf to us but still looks awful from the outside for our loved ones.
Joe has gout, so I have learned a lot from our supporters so I can be his - make sure everything he needs is available & keep out of his way when he's in pain unless he asks me to hand him someting, & love him when he's bitching, pacing, waddling, & screaming.
Charlotte
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| « Last Edit: Sep 3rd, 2006, 10:45am by Charlotte » |
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PollyPocket
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Re: ok troops, I need your help :)
« Reply #14 on: Sep 3rd, 2006, 11:13am » |
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g'morning Charlotte
Truthfully, my extremely tight budget limits me. But also, I got so sick of feeling sick from meds that I try to avoid unless absolutely necessary. Not playing martyr or anything, I guess we all just learn to deal with different levels of pain differently. When I absolutely know I need assistance if the vrap isn't keeping the hits low, then I know I have what I need.
And Eric and Jonny, I honestly thought we ALL did that head thing! LOL No shit. Thought pushing one side of my head into another is just the proper way one bangs one's head before needing to ram it into the floor or wall!
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
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lashultz
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Re: ok troops, I need your help :)
« Reply #15 on: Sep 3rd, 2006, 11:23am » |
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At the first sign, I hit the O2. If it keeps ramping up the pills will not work in time. The last resort at, home anyway, is the trex. When I am away from home things get a little tougher to call. But whatever works for you is what you need to do.
Lee
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Gator
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Re: ok troops, I need your help :)
« Reply #16 on: Sep 3rd, 2006, 3:25pm » |
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on Sep 2nd, 2006, 11:20pm, E-Double wrote:| I will just c0ck my head to side and jam pressure points. |
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I do this as well. If I am close to a Red Bull or other energy drink, I'll slam one. If that doesn't work, then I'll hit the O2. Trex is a last resort kind of thing.
It irritates my wife sometimes that I will hold off on hitting the trex, but she realizes that with what it costs, I have to save it for the bad times.
Sometimes I just refuse to acknowledge that a hit is coming. I guess it's one of those things where if you ignore it, it will go away. I've talked to others who do this as well. I suppose it's a way of trying to exert a little control over ch.
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Sandy_C
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Re: ok troops, I need your help :)
« Reply #17 on: Sep 3rd, 2006, 3:42pm » |
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I too use the pressure points - with both hands. I've got 10 fingers jammed in to various points around my head with my elbows sticking up in the air! I must really look charming. I also grab the ice packs, and down huge glass after glass of ice water. I didn't go for the trex until I knew the hit is going to continue to ramp up.
That was my routine for previous cycles. I'm now trying 02, Red Bull, melatonin, and seeds, and the trex will stay stashed away. From this board, and from my doc, I realized that with my family history of heart problems, strokes, blood clots - trex is not my friend, and neither are many of the prescription meds. So, when the beast returns, and he's been knocking at my door for about the last month, I'm going to battle him without meds. Wish me luck.
Sandy
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Re: ok troops, I need your help :)
« Reply #18 on: Sep 3rd, 2006, 4:03pm » |
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Good luck, Sandy.
love ya,
Charlotte
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Linda_Howell
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Re: ok troops, I need your help :)
« Reply #19 on: Sep 3rd, 2006, 4:24pm » |
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Sorry Jennifer. I totally agree with Brecrew. By the time it gets to a 6 or 7 it's wayyyyyyyyyyy to late.
02 won't even work for me if I wait.
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