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Topic: While not in cycle... (Read 403 times) |
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Chonas
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While not in cycle...
« on: Sep 20th, 2006, 11:25am » |
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While not in cycle, which are those things, if any, that you suspect or think that should be done to keep the beast some extra time away?.
In my case, I consider very important to keep a rather precise sleep pattern and try to avoid unusual stress.
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Guiseppi
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othing seems to start a cRe: While not in cycle...
« Reply #1 on: Sep 20th, 2006, 1:44pm » |
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After 25 years of episodic I've learned when I'm off cycle, nothing seems to act as a trigger. I can drink my blended whiskies, (A HUGE TRIGGER for me when on cycle), go from days to graves and back to days again, go from a desk assignement to a high risk high stress assignment, I have never been able to equate any of those on cycle triggers, with the beginning of a cycle. Enjoy the off cycles, always be armed for the beast when he returns...........it seems it always does!
Guiseppi
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BlueMeanie
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Re: While not in cycle...
« Reply #2 on: Sep 20th, 2006, 1:50pm » |
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It really suprises me to see people who are worried when not in cycle. I could care less about sleeping, eating, drinking or anything else as I'm PF and don't get CH's. Even when I get occasional shadow I really make no attempts to change anything. Of course stockpiling meds is about it until the BIG ONE hits.
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TxBasslady
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Re: While not in cycle...
« Reply #3 on: Sep 20th, 2006, 2:36pm » |
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The best thing....is just to forget about it.
Live!!! Enjoy life...and don't even think about the next "time". 
Jean
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Sandy_C
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Re: While not in cycle...
« Reply #4 on: Sep 20th, 2006, 5:32pm » |
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LIVE LIFE, AND ENJOY.
Nuff said
Sandy
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Chonas
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Re: While not in cycle...
« Reply #5 on: Sep 20th, 2006, 6:05pm » |
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Thanks to all of you. I always thought it had to be that way, if I'm not in pain I better enjoy it as much as I can.
It is not easy for me to get rid off this monster even when I'm feeling fine.
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eyepopper
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Re: While not in cycle...
« Reply #6 on: Sep 20th, 2006, 7:07pm » |
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on Sep 20th, 2006, 6:05pm, Chonas wrote:
It is not easy for me to get rid off this monster even when I'm feeling fine.
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I understand. When I'm CH free, sometime I get a twinge of anxiety thinking about when it's going to hit again. Then, I just stop and really savor the fact that I have no pain at all in my face. . . . and then I think how wonderful it must be to never even know that you have a trigeminal nerve! (Like non-CHer's.) I think about how wonderful "normal" feels, and I go on to enjoy the time I have.
Those times that I do get hit, I try to remind myself that there will PF times, and that the bad times will end. It's the only way I can get through this.
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BigCoffinHunter
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Re: While not in cycle...
« Reply #7 on: Sep 20th, 2006, 7:54pm » |
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When I'm out of cycle, I can almost forget I get these things. Sometimes I feel a little twinge back there, and although nothing comes of it, my heart starts pounding, and get this feeling of utter terror "oh no it's back". Ignore it, enjoy life when you are PF.
One thing these things do is make you appreciate stuff more. I swear nothing is more beautiful than looking up at a blue sky when a hit has ebbed. It's a euphoric feeling.
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George_J
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Re: While not in cycle...
« Reply #8 on: Sep 20th, 2006, 11:58pm » |
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One day at a time, one hit at a time.
When it's gone, I don't worry about it--I've never been able to peg anything that brings them on, other than the period of daylight, and the passage of time. Thinking about them does no harm, talking about them has no effect, avoiding things that "might" be a trigger when I'm out of cycle does nothing. They just happen.
So what's the use?
Life's between the cycles and the hits--to be savored more fully, more intensely than would, perhaps, be the case if I was not a clusterhead.
Best,
George
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| « Last Edit: Sep 21st, 2006, 12:00am by George_J » |
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chewy
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Re: While not in cycle...
« Reply #9 on: Sep 21st, 2006, 8:20am » |
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Consistant sleep, no long drives, loose Speedos.
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marlinsfan
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Re: While not in cycle...
« Reply #10 on: Sep 26th, 2006, 5:30pm » |
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Avoid Vicadin
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sandie99
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Re: While not in cycle...
« Reply #11 on: Sep 27th, 2006, 5:32am » |
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Personally, I stay away from the alcohol as much as I can. It gives me shadows within minutes even on PF time.
BUT you're the expert of your ch. You'll figure out what works for you and what kind of things to avoid even when off cycle.
It's a wise advice not to think about the beast while you're PF. I know that it can be hard, but do your best. Enjoy life! 
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
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chopmyheadoff
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Re: While not in cycle...
« Reply #12 on: Sep 27th, 2006, 6:34am » |
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on Sep 21st, 2006, 8:20am, chewy wrote:
loflmao
NO SPEEDOS
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| « Last Edit: Sep 27th, 2006, 6:35am by chopmyheadoff » |
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LeLimey
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Re: While not in cycle...
« Reply #13 on: Sep 27th, 2006, 8:09am » |
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on Sep 27th, 2006, 6:34am, chopmyheadoff wrote:
Don't worry Chop, no one'll notice 
Chronos, I know how you feel, I'm chronic so I never have to worry about it for myself but I continuously watch my son for "signs".. I'm missing out because I dread it so much. I'm terrified of his next cycle and I get tearful just thinking about it. I know I can't change anything and I need to just enjoy what day's I can but its easier said than done.
I think the main thing is to do your best, a positive mental attitude is worth equally as much as meds and if you find that maintaining ANY sort of a pattern helps you cope then by goodness you do it!
Helen
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Chonas
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Re: While not in cycle...
« Reply #14 on: Sep 27th, 2006, 10:14am » |
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Thanks LeLimey, and the rest of the team.
This last cycle has been such a bad one that it's taking me a lot of extra PF time to recover, much more than I was used to.
It's been already more than 2 months PF, and I didn't have a beer, or chocolate, etc., because I'm still afraid of the beast. 
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LeLimey
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Re: While not in cycle...
« Reply #15 on: Sep 27th, 2006, 10:17am » |
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 you'll get there hon, just take one day at a time and if that looks too much then just go for the morning and then the afternoon
We'll all get through this, together - and one step at a time
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Barry_T_Coles
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Re: While not in cycle...
« Reply #16 on: Sep 29th, 2006, 2:49am » |
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on Sep 20th, 2006, 11:58pm, georgej wrote:
Life's between the cycles and the hits--to be savored more fully, more intensely than would, perhaps, be the case if I was not a clusterhead.
Best,
George
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Ditto
I'm chronic but I'm enjoying the 38th day without a hit, the best 38 days in the last 2 years.
Still getting shadows of varying degrees but I can live with that, when am I going to get hit again who knows, the beast will make its own mind up with that but I’m ready whenever.
Kind Regards
Barry
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wam
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Re: While not in cycle...
« Reply #17 on: Sep 30th, 2006, 8:57pm » |
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Exactly...live life and enjoy the off cycle.But keep in mind that no matter how long you go......it always comes back.
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