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sandie99
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Keeping a CH diary? Anyone?
« on: Oct 27th, 2004, 7:07am » |
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Hi guys!
I was just wondering that do you keep a CH diary?
You know, write down how many attacks, what time, what medication you used...
I know I do. I have since November 19, 2002. I just hope that my diary would get more of those precious "PFs"...
Anyways, wishing you many PFdays as always,
sandie99
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| « Last Edit: Oct 27th, 2004, 7:07am by sandie99 » |
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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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Ree
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Re: Keeping a CH diary? Anyone?
« Reply #1 on: Oct 27th, 2004, 8:03am » |
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Hi Sandie... all I have to say is Dave is lucky to have me...LOL! When he is in cycle, yes I do keep a diary for him... His cycle he is told is classic when it occurs. He will get hit and a week later he gets hit again.Then he gets hit every few days. Then they get closer and closer with more hits every day and night.... they peak (the suicide watch), then work downward almost exactly the way they came. It is a most bizarre phenomenon... that his body knows exactly when to decide to start torturing the poor man in a way that I can only say brings him down to someone walking in fear of his next attack. Depending on how long his cycle is and whether he tells me about every attack(he hates to talk about it) will let me know how accurate the log is that I keep. Sometimes I log meds. Sometimes not. It is a very good idea because if you have something to go by you can be ready. Many individuals here get hit at the same time every day. Dave is one of those guys...I have been his secretary for the past 17 years. That is why I'm here for those that wonder why Dave doesn't post often. He doesn't type well. He also thinks he jinxes himself to talk about CH out of cycle. This was (coincedentally or ironically) proven when he got HIT BIGTIME at the CH convention and was thrown into cycle in 2003, after having prevented them for 6 months with Neurontin. Love to you Ree
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| « Last Edit: Oct 27th, 2004, 8:04am by Ree » |
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sandie99
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Re: Keeping a CH diary? Anyone?
« Reply #2 on: Oct 27th, 2004, 8:29am » |
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Ree,
I started the diary once I noticed that I keep on having different HAs than usually ever so often. And ever since neuros have been telling me to keep on writing it. It's always a useful point of reference. 
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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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The mad viking
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Re: Keeping a CH diary? Anyone?
« Reply #3 on: Oct 27th, 2004, 8:50am » |
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« C.H.A.T.S. Overview - Ed. 8/18 »
Sandie and all others.
Check c.h.a.t.s thread.we are about ready to go beta there now.
Svenn
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vig
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Re: Keeping a CH diary? Anyone?
« Reply #4 on: Oct 27th, 2004, 9:42am » |
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I do regret that I did NOT start keeping a headaCHe diary from the start. 
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E-Double
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Re: Keeping a CH diary? Anyone?
« Reply #5 on: Oct 27th, 2004, 9:58am » |
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I have a "Scatter Plot" (broken into 15 minute across 24hr. periodsintervals) which I have color coded CH levels similar to the kip scale that accounts for all the variables that I can think of that may effect the CH...
Been keeping this since beginning of June after a kick in the Arse by the little lady. She also got me to finally go to a neuro.
I only recently started slacking off and only note major changes....Been Five months as of yesterday Happy Anniversary to me  
A great idea that should be used by all. Very helpful in determining that my CH had no patterns lol but the Doctors liked it.
E.
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unsolved1
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Re: Keeping a CH diary? Anyone?
« Reply #6 on: Oct 27th, 2004, 10:20am » |
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I did one in Excel about 2 months ago. (Should've started about 15 yrs ago)
Unsolved > C.H.A.T.S. will be interesting  I think everyone should get in on it.
Unsolved
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TomM
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Re: Keeping a CH diary? Anyone?
« Reply #7 on: Oct 27th, 2004, 12:53pm » |
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Track mine on my Palm Pilot...OK, I'm a geek! 
TomM
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becky8
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Re: Keeping a CH diary? Anyone?
« Reply #8 on: Oct 27th, 2004, 12:54pm » |
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Keeping a Diary? I guess being chronic, there's no point. I have thought it for about 1 minute and then I thought better. PF time is my time and in NO-WAY am I gonna let CH have that!!!I know its probably the best thing to do, but I would ALWAYS be writting in that dam thing. Diarys for me would be about the last hot time I had. Not CH!!! LOL!!!! 
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magman
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Re: Keeping a CH diary? Anyone?
« Reply #9 on: Oct 27th, 2004, 2:02pm » |
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on Oct 27th, 2004, 12:53pm, TomM wrote:Track mine on my Palm Pilot...OK, I'm a geek!
TomM |
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We intend to have PDA compatibility built into C.H.A.T.S. so that data can be uploaded from your personal units. I cannot say that this feature will be available immediately, but its rollout is certainly expected within 2 to 4 months of the initial system.
Regards,
-dan
edited for clarity
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| « Last Edit: Oct 27th, 2004, 2:06pm by magman » |
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Carl_D
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Re: Keeping a CH diary? Anyone?
« Reply #10 on: Oct 27th, 2004, 2:34pm » |
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on Oct 27th, 2004, 12:54pm, becky8 wrote:| Keeping a Diary? I guess being chronic, there's no point. |
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I've kept diaries at various points. Haven't in awhile, though trying to right now with the CH and everything else going on. Only consistency with me and CH is when I sleep - it will come.
Peace,
Carl D
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Jeepgun
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Re: Keeping a CH diary? Anyone?
« Reply #11 on: Oct 27th, 2004, 2:53pm » |
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"Dear CH Diary,
Today, I got hit at work. One of my coworkers suggested that I take a couple of aspirin and lie down in a dark, quiet room. It took me quite a while to mop up all of his blood, but by the time I was done, my CH was gone!
Another coworker came by my desk, and was wonderfully sympathetic, but then went on to say, 'Sometimes, my aunt gets MIGRAINES!' as if I was supposed to be horrified or impressed or something. I looked at her with my bloodshot eye and hanging eyelid, and briefly contemplated bludgeoning her with my Swingline stapler, but I resisted the urge.
This afternoon, I received a phone call from a fellow who was selling a sea-salt/kelp remedy, and told me that it would cure my CH, because they were likely due to my compromised immune system and eating greasy food. I used Information to find out his home address and phone number. I have a baseball bat with all of that information engraved into it, now."
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Leesa
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Re: Keeping a CH diary? Anyone?
« Reply #12 on: Oct 27th, 2004, 2:59pm » |
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Kept one on Dave since 01' take it with me where ever we go not matter what. Just in case. OMG is thing BIG now!! Its my "bible" so to speak.
Leesa
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echo
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Re: Keeping a CH diary? Anyone?
« Reply #13 on: Oct 27th, 2004, 3:52pm » |
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Used to keep one in the past for my begining dealings with GPs and Neuros.
I don't anymore.
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becky8
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Re: Keeping a CH diary? Anyone?
« Reply #14 on: Oct 27th, 2004, 4:35pm » |
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Not to offend anyone, and the Dr.s always say write it down. I guess I don't understand the point in it really. I do believe in knowing your symptoms real well. Like knowing when I get hit 8 times today and 18 tomorrow is going to change anything they can do for me???? Sorry, I know if your NOT chronic it probably helps you, but useless to me.  
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TomM
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Re: Keeping a CH diary? Anyone?
« Reply #15 on: Oct 27th, 2004, 4:41pm » |
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I'm not chronic and it helps me mentally cope with what I'm facing in the present by knowing how I dealt with it in the past. MHO.
TomM
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becky8
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Re: Keeping a CH diary? Anyone?
« Reply #16 on: Oct 27th, 2004, 4:44pm » |
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How could you forget?? I guess if you're lucky enough to have it not come around for a few years, you could forget ALITTLE.
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E-Double
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Re: Keeping a CH diary? Anyone?
« Reply #17 on: Oct 27th, 2004, 4:51pm » |
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on Oct 27th, 2004, 2:59pm, Leesa wrote:Kept one on Dave since 01' take it with me where ever we go not matter what. Just in case. OMG is thing BIG now!! Its my "bible" so to speak.
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I do that too. Funny...mine looks like I'm carrying architectural blueprints. But has alll the info for the docs.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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TomM
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Re: Keeping a CH diary? Anyone?
« Reply #18 on: Oct 27th, 2004, 4:56pm » |
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on Oct 27th, 2004, 4:44pm, becky8 wrote:
I block out a lot of things when in cycle and try not to dwell on it and claim no responsibilty for my actions. One of the great things about 'only' being episodic, I presume.
on Oct 27th, 2004, 4:44pm, becky8 wrote:| I guess if you're lucky enough to have it not come around for a few years, you could forget ALITTLE. |
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Not anymore. I get hit every winter.
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E-Double
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Re: Keeping a CH diary? Anyone?
« Reply #19 on: Oct 27th, 2004, 5:00pm » |
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on Oct 27th, 2004, 4:44pm, becky8 wrote:| How could you forget?? I guess if you're lucky enough to have it not come around for a few years, you could forget ALITTLE. |
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No disrespect whatsoever but the lucky enough to have it not come around is really double-edged...
mine come 2x a year historically yet there was ALWAYS that tremendous amount of anxiety built up for the entire time I had a break. "When are they going to come back???" Living in fear as opposed to Living...
Anyway I'm in the midst of what to me is a long cycle. 5 months and though not chronic yet (god willing) It is not until recently the past couple of months maybe (if that) that my attitude has changed to the point that I don't question when they will end.
IT SUCKS PERIOD
but I don't pray for the end or the break anymore. I just live.
IT IS WHAT IT IS!!!
and if it ends great but if it doesn't I think I've learned the coping mechanisms to endure in a positive fashion.
Just my two cents.
Hope you all feel better with everything in life!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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magman
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Re: Keeping a CH diary? Anyone?
« Reply #20 on: Oct 27th, 2004, 5:01pm » |
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on Oct 27th, 2004, 4:35pm, becky8 wrote:| Not to offend anyone, and the Dr.s always say write it down. I guess I don't understand the point in it really. I do believe in knowing your symptoms real well. Like knowing when I get hit 8 times today and 18 tomorrow is going to change anything they can do for me???? Sorry, I know if your NOT chronic it probably helps you, but useless to me. |
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Granted, if all one tracks is the number of hits and possibly duration and Kip level, not much will be gleaned from that info.
However, when dealing with a disease that even the Neuro’s and other Medical professionals are unsure of, keeping track of everything can help us all. Just imagine the amount of data we can pass along to not only our own Dr’s, but Doctors world-wide if we would each take a few moments each day to ‘write it all down’. If anyone is following the news, procedures, and data-gathering taking place now for the ClusterBuster/Harvard study, the need for detailed info is readily evident.
We [Grant, Svenn and I] have put a lot of effort, money and sweat into providing an all-encompassing, easy-to-use, on-line CH diary system. This fact certainly bears heavy on my opinion expressed here. What does not change, and is unaffected by outside influences is the fact that data, when gathered in a central location is very valuable in determining approaches to treatment, meds to stay away from, those that may be beneficial, and opening the doors to new ways to help lower our suffering.
Taking a few moments each day to enter your statistics in C.H.A.T.S. [once we have it available to the public], is just as important as posting here in support of our brothers and sisters.
Kind regards,
-dan
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vig
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Re: Keeping a CH diary? Anyone?
« Reply #21 on: Oct 27th, 2004, 5:01pm » |
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Dear Diary,
My head hurts. Please stop it now, I've had enough. I've lost track of time and wasn't paying attention when this thing started, so I have no idea how long it's been going on. I've had a few today, but I lost track of how many. There are many open pill bottles in my room, but I don't remember whiCH ones I took and whiCH ones I just laughed at. I'm not sure whiCH month this is anymore. I hope it all goes away soon. Ow,... Ow,... Stop,... Ow,... Ow,... 'F',... Ow,... Please stop now,... Ow,... Ow,... 'F' me,... Ow,... Ow,...
Thanks,
Paul
(that's as far as I ever get anyhow)
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BlueMeanie
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Re: Keeping a CH diary? Anyone?
« Reply #22 on: Oct 27th, 2004, 5:15pm » |
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I diary is a good idea for people who have not been dealing with CH's for decades. It will help the docs determine weather they will commit to saying you DO have Clusters.
If you are into trigger and prevent approaches to minimizing the amount of attacks it just may help.
Unfortunately for me, I have learned that a diary doesn't matter one iota. Episodic periods come and go when they want. 
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Ronny
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Re: Keeping a CH diary? Anyone?
« Reply #23 on: Oct 27th, 2004, 5:19pm » |
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on Oct 27th, 2004, 2:53pm, Jeepgun wrote:| I have a baseball bat with all of that information engraved into it, now." |
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LMAO, Jeep you're killing me.
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Ronny
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Re: Keeping a CH diary? Anyone?
« Reply #24 on: Oct 27th, 2004, 5:20pm » |
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on Oct 27th, 2004, 5:01pm, vig wrote:Dear Diary,
My head hurts. Please stop it now, I've had enough. I've lost track of time and wasn't paying attention when this thing started, so I have no idea how long it's been going on. I've had a few today, but I lost track of how many. There are many open pill bottles in my room, but I don't remember whiCH ones I took and whiCH ones I just laughed at. I'm not sure whiCH month this is anymore. I hope it all goes away soon. Ow,... Ow,... Stop,... Ow,... Ow,... 'F',... Ow,... Please stop now,... Ow,... Ow,... 'F' me,... Ow,... Ow,...
Thanks,
Paul
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Hehe, i have a little book with pages full of the exact same information, no dates, no times, nothing.
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