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Topic: Light At the End of The Tunnel (Read 523 times) |
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BB
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Light At the End of The Tunnel
« on: Feb 10th, 2007, 3:14pm » |
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I am doing the happy dance now. I believe Daniels cycle is finally comming to the end. It has been 6 long months ( It seemed like forever ! ). As this is his first diagnosed cycle, we had no idea how long it would last for.
He has had 4 days of complete pain free, no attack, no shadow. 5 days ago he had a massive KIP10 that went on for nearly 2 hours, but since then it was a complete stop. During the cycle, Daniel had at least one minor hit a day. There wasnt a single day during those long 6 months that he didnt get hit, regardless of what med he was on, so 4 days with nothing is absolutely wonderful.
I read on the Board that some people experience the same thing at the end of their cycle: one really really bad hit then it stops.
However, we knew that the beast is still lingering as one sip of alcohol last night and he had some pain in his left eye and felt sweaty. Nothing bad but enough to let us know that the medication will need to be continued longer and that we cant quite let go of our guard as yet.
I really hope and pray to God that this is it. If it is then Daniel should have a 2-3 years remission based on his previous experience.
Just want to share the good news. Hang in there guys, things will and do get better.
Lotsaluv and painfree wishes to you all. 
Annette
PS: even if Daniel is out of cycle, I will be here everyday to give support to those who are still in pain.
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George_J
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Re: Light At the End of The Tunnel
« Reply #1 on: Feb 10th, 2007, 3:18pm » |
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Annette, this is the best news I've heard all week.
Sounds very promising.
 
Best always,
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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BB
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Re: Light At the End of The Tunnel
« Reply #2 on: Feb 10th, 2007, 3:34pm » |
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Thanks George for your kind words and for all your support and advices. We definitely wouldnt have made it without you .
The support and advices and love we received from the Board here helped us both to survive and grew strong enough to kick the beast to the kerb 
Hugs
Annette
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Kevin_M
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Re: Light At the End of The Tunnel
« Reply #3 on: Feb 10th, 2007, 6:06pm » |
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I'm proud of you for battling this so diligently with him, Annette, getting tossed in the fire for a perhaps first supporting role dealing with this bitch and not ever giving up. Happy for Daniel, and you, and thank you for your contributions here too.
Stay prepared and keep absorbing for this hell on wheels. 
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duckie
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Re: Light At the End of The Tunnel
« Reply #4 on: Feb 10th, 2007, 6:12pm » |
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I'm so glad for you and Daniel that the beast is going into hibernation. Keep doing the happy dance!! Lii
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Ob1kanobee
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Re: Light At the End of The Tunnel
« Reply #5 on: Feb 10th, 2007, 7:42pm » |
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I hope it's gone too! It sounds like he deserves some time away from the Beast. Make sure you check in every now and then. It looks like I'm good myself until next year. Maybe it will skip a year like it did last year. Better yet, maybe it will never come back! Good luck!
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andrewjb
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Re: Light At the End of The Tunnel
« Reply #6 on: Feb 10th, 2007, 8:15pm » |
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this is great news, slowly-slowly, one day at a time. andrew.
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tanner
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Re: Light At the End of The Tunnel
« Reply #7 on: Feb 11th, 2007, 2:13am » |
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I am so happy for you Hun You and Daniel deserve a long (how about permanent break), but I will hold you too the sticking around part
Don't make me swim over there and find your new house 
Hugz all around......Tim
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
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BB
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Re: Light At the End of The Tunnel
« Reply #8 on: Feb 11th, 2007, 8:33am » |
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Thanks everyone for your kind and encouraging words
One thing I notice that Daniel is sleeping a lot more now. I guess it is to make up for all those sleepless nights. He can sleep 12-14 hrs a day now  . Hopefully another week of no pain and plenty of sleep will see my man emerged strong and healthy again.
I pray that all those who are still in cycle will come out of it very very very soon.
Hugs and painfree wishes to all.
Annette
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Kevin_M
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Re: Light At the End of The Tunnel
« Reply #9 on: Feb 11th, 2007, 10:48am » |
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on Feb 11th, 2007, 8:33am, BB wrote:| One thing I notice that Daniel is sleeping a lot more now. |
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When cycles used to end, I remember indulging there whenever possible, but still waking feeling fine for months later even getting a consistent five hours finally.
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Redd
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Re: Light At the End of The Tunnel
« Reply #10 on: Feb 11th, 2007, 12:02pm » |
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This is terrific news Annette. Maybe in another 2 weeks or so you and Daniel can try a glass of wine (or whatever he prefers) again as sort of a litmus test to see if the Beast is gone for good.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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George_J
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Re: Light At the End of The Tunnel
« Reply #11 on: Feb 11th, 2007, 12:13pm » |
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on Feb 11th, 2007, 8:33am, BB wrote:
One thing I notice that Daniel is sleeping a lot more now. I guess it is to make up for all those sleepless nights. He can sleep 12-14 hrs a day now . Hopefully another week of no pain and plenty of sleep will see my man emerged strong and healthy again. |
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Sounds very, very encouraging.
I usually end up doing the same thing for a week or two after a cycle ends.
Nothing is sweeter than sleep uninterrupted--sleep without fear is a gift.
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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Chillrmn1
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Re: Light At the End of The Tunnel
« Reply #12 on: Feb 11th, 2007, 1:14pm » |
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This is great news Annette. My hope is Daniel's remission lasts a long time and hopefully forever.
PF wishes,
Bob
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sandie99
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Re: Light At the End of The Tunnel
« Reply #13 on: Feb 11th, 2007, 1:38pm » |
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Annette,
thanks for letting us know the good news! I hope that Daniel's cycle is indeed coming to its end. And I wish lots of PF days for Daniel.
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)
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kayarr
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Re: Light At the End of The Tunnel
« Reply #14 on: Feb 11th, 2007, 2:02pm » |
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Hope you two get a long remission! It would be unnerving to wonder if it was going to end or not. (at least we expect it everyday)
PFDAN
Kimberly and Jeff
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Nothing is impossible! Just believe!!!!!
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5yearsteve
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Re: Light At the End of The Tunnel
« Reply #15 on: Feb 11th, 2007, 3:15pm » |
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Seems like quite a few people are at their cycle end right now. I am also. A few days ago I ended a 15 day pred taper. I have not had a CH in over 20 days now. I am also on 600 mg of lithium daily. I am going to call the doc and see if I can drop it to 300 to see what happens. Seems like I am still getting slight shadows though.
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BB
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Re: Light At the End of The Tunnel
« Reply #16 on: Feb 11th, 2007, 3:57pm » |
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Thanks everyone
Now this is really interesting!
Daniel remembers that 3 and 6 years ago, around the same time, he would have a period where he would work very very very long hours because he couldnt sleep. If he slept he would wake up with a headache ( not as bad as now ) so he avoided sleep by working. It would go on for a few months followed by a period where he would feel exhausted and falling asleep at any time, sleeping 12-14 hrs/day. That was why he was diagnosed with chronic fatigue syndrome. The specialist he saw then told him it was chronic fatigue caused by stress at work and physical exhaustion.
Looking back, I would say that they were his 1st and 2nd CH cycles. The only difference is that the headache wasnt as bad. There was pain and pressure behind the eye but no drilling, no hot torch burning. Daniel said it would have been maybe a KIP3 at worst. He used to eat OTC pain killers by the handful to get rid of them.
Has anyone else had similar experiences at the beginning of their CH career?
Painfree wishes and prayers to all.
Annette
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daniel96
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Re: Light At the End of The Tunnel
« Reply #17 on: Feb 12th, 2007, 5:55am » |
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Hi Annette, glad to hear daniel is getting out of his cycle. I am happy for him. For my CH experience, initially when I was having alot of mild headaches for the start and was popping pain-killers everyday trying to stop the headaches. Each headache lasts for 1 hr at least and suddenly the first CH cycle hit me badly till I got no way to carry on my daily routine. So I guess CH is hard to determine at first, cause we have the mis-conception of normal headaches or migraines. The only way to differentiate is when I came upon CH and read up about the symptoms and realized what I have is CH.
My first cycle was very bad. 2 - 3 times per day. Based on a regular timing. Each attack lasts for 1-2hrs at least. The whole cycle lasts for 2 - 3 months.
My Second cycle is almost the same as the first cycle.
Currently I am having my 3th cycle. Just started this Spring. Still monitoring it. Normally CH will give u some small headaches and small triggers first before the big wave kicks in. Thats the warning sign given.
I read about the red bull issue , going to try it tomorrow morning when my headaches come.
Cheers.
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BB
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Re: Light At the End of The Tunnel
« Reply #18 on: Feb 16th, 2007, 8:05am » |
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Hello all,
Happy to update that its now 10 days since the last cluster attack and Daniel is still enjoying painfree time. No hit at all, just one small shadow at about a kip5 which he got rid of with a Red Bull.
After a week sleeping 14+ hrs a day, he is feeling so much better. Its great to see him smiling and laughing now instead of frowning and grimacing.
Life is beautiful !
I pray every day that all of us here will enjoy many many many painfree days and nights.
Annette
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Spoticus
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Re: Light At the End of The Tunnel
« Reply #19 on: Feb 16th, 2007, 8:09am » |
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Fantastic news BB. I know there is still the slight chance its premature but it certainly sounds promising 
Sounds like its time for you and Daniel to go cash in all of those PF wishes you must have banked
May the PF times keep on rolling,
James
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George_J
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Re: Light At the End of The Tunnel
« Reply #20 on: Feb 16th, 2007, 8:48am » |
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Everybody's different, Annette, but I've always been able to count a cycle as finished if I go seven days without a hit or a shadow.
If he is at all like me, he may have some tendency to have fleeting shadows or little stabs once in awhile, and the location where his cluster lump forms may remain tender for a bit. Then those symptoms disappear as well, and it's as if he's never had them.
Fingers crossed, he sounds as if he's good to go. Might be time for the beer test shortly.
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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TonyG1
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Re: Light At the End of The Tunnel
« Reply #21 on: Feb 17th, 2007, 4:22pm » |
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Thats great news Annette !!! 
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