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Title: Keeping a CH diary? Anyone? Post by sandie99 on Oct 27th, 2004, 7:07am 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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Title: Re: Keeping a CH diary? Anyone? Post by Ree on Oct 27th, 2004, 8:03am 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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Title: Re: Keeping a CH diary? Anyone? Post by sandie99 on Oct 27th, 2004, 8:29am 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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Title: Re: Keeping a CH diary? Anyone? Post by Svenn on Oct 27th, 2004, 8:50am « 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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Title: Re: Keeping a CH diary? Anyone? Post by vig on Oct 27th, 2004, 9:42am I do regret that I did NOT start keeping a headaCHe diary from the start. :-/ |
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Title: Re: Keeping a CH diary? Anyone? Post by E-Double on Oct 27th, 2004, 9:58am 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 [smiley=laugh.gif] :( 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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Title: Re: Keeping a CH diary? Anyone? Post by unsolved1 on Oct 27th, 2004, 10:20am 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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Title: Re: Keeping a CH diary? Anyone? Post by TomM on Oct 27th, 2004, 12:53pm Track mine on my Palm Pilot...OK, I'm a geek! 8) TomM |
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Title: Re: Keeping a CH diary? Anyone? Post by becky8 on Oct 27th, 2004, 12:54pm 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!!!! ::) [smiley=laugh.gif] |
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Title: Re: Keeping a CH diary? Anyone? Post by Magman on Oct 27th, 2004, 2:02pm on 10/27/04 at 12:53:26, TomM wrote:
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. [smiley=deal2.gif] Regards, -dan edited for clarity |
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Title: Re: Keeping a CH diary? Anyone? Post by Carl_D on Oct 27th, 2004, 2:34pm on 10/27/04 at 12:54:29, becky8 wrote:
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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Title: Re: Keeping a CH diary? Anyone? Post by Jeepgun on Oct 27th, 2004, 2:53pm "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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Title: Re: Keeping a CH diary? Anyone? Post by Leesa on Oct 27th, 2004, 2:59pm 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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Title: Re: Keeping a CH diary? Anyone? Post by echo on Oct 27th, 2004, 3:52pm Used to keep one in the past for my begining dealings with GPs and Neuros. I don't anymore. |
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Title: Re: Keeping a CH diary? Anyone? Post by becky8 on Oct 27th, 2004, 4:35pm 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. [smiley=huh.gif] [smiley=confused2.gif] |
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Title: Re: Keeping a CH diary? Anyone? Post by TomM on Oct 27th, 2004, 4:41pm 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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Title: Re: Keeping a CH diary? Anyone? Post by becky8 on Oct 27th, 2004, 4:44pm 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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Title: Re: Keeping a CH diary? Anyone? Post by E-Double on Oct 27th, 2004, 4:51pm on 10/27/04 at 14:59:22, Leesa wrote:
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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Title: Re: Keeping a CH diary? Anyone? Post by TomM on Oct 27th, 2004, 4:56pm on 10/27/04 at 16:44:57, 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 10/27/04 at 16:44:57, becky8 wrote:
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Title: Re: Keeping a CH diary? Anyone? Post by E-Double on Oct 27th, 2004, 5:00pm on 10/27/04 at 16:44:57, becky8 wrote:
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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Title: Re: Keeping a CH diary? Anyone? Post by Magman on Oct 27th, 2004, 5:01pm on 10/27/04 at 16:35:36, becky8 wrote:
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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Title: Re: Keeping a CH diary? Anyone? Post by vig on Oct 27th, 2004, 5:01pm 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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Title: Re: Keeping a CH diary? Anyone? Post by BlueMeanie on Oct 27th, 2004, 5:15pm 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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Title: Re: Keeping a CH diary? Anyone? Post by Ronny on Oct 27th, 2004, 5:19pm on 10/27/04 at 14:53:48, Jeepgun wrote:
LMAO, Jeep you're killing me. |
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Title: Re: Keeping a CH diary? Anyone? Post by Ronny on Oct 27th, 2004, 5:20pm on 10/27/04 at 17:01:34, vig wrote:
Hehe, i have a little book with pages full of the exact same information, no dates, no times, nothing. |
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Title: Re: Keeping a CH diary? Anyone? Post by TomM on Oct 27th, 2004, 5:44pm on 10/27/04 at 17:15:45, BlueMeanie wrote:
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Title: Re: Keeping a CH diary? Anyone? Post by Carl_D on Oct 27th, 2004, 6:04pm I have pages from a journal I kept back in '93 when my life spiraled out of control due to CH, and it is some of the darkest, most depressing shit in the world. Only reason I kept it was to remind myself at times that, it isn't as bad as it used to be. Unfortunately, right now my life makes that journal look like Dr Seuss. Attempted suicide twice, and how or why I lived past January of 2003 I will never, ever know. Peace, Carl D P.S. - I can't wait for C.H.A.T.S. to be available. |
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Title: Re: Keeping a CH diary? Anyone? Post by alleyoop on Oct 27th, 2004, 8:01pm on 10/27/04 at 17:01:15, Magman wrote:
I'm with you all the way Dan! Do you have a date yet on the beta release? ................alley [smiley=huh.gif] |
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Title: Re: Keeping a CH diary? Anyone? Post by Gator on Oct 27th, 2004, 9:46pm My 1st neuro suggested I keep a diary. I made one up in Excel. It was a substantial little spreadsheet with fields for date, weather, time of attack, time attack ended, pain level, activicty just prior to attack, food eaten prior to attack, What meds taken, how long for meds to work and comments. Anyways, at the time, I had near constant shadows and was getting hit so often, I found myself either suffering an attack or entering attack info in the stupid diary. Stupid neuro never did ask to see the diary. I decided I had better things to do with my time between attacks than to sit and write about them. Now when CHATS comes online, I know the info will be used for something other than to fill my free time between hits, so I'll use it. It'll be interesting to see how well this works and what the medical community does with it. Gator |
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Title: Re: Keeping a CH diary? Anyone? Post by Svenn on Oct 28th, 2004, 5:16am on 10/27/04 at 12:54:29, becky8 wrote:
First let me say that i do understand you well becky8. Second The arguement could not be more wrong the way i read it Its when you are cronic i say the diary is really importent to do.its a lots of IF,WHY some meds does work and suddenly stops working and those kind of things.A diary in detail can MAYBE give the doc an idea what happend or did not happend with your meds or what ever Example. sometimes trex or O2 works and the day after it does not.? what did you do that maybe caused this to happend.Perhaps a neuro can analyze that and still might help you Not sure if you understand my way of thinking but there it is the very best from Svenn |
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Title: Re: Keeping a CH diary? Anyone? Post by becky8 on Oct 28th, 2004, 10:52am Maybe you're right Sevnn, but how I look at it as it consumes my life now. I think that what you're saying is an excellent idea, but I think that would be someone who wants to be in a study for CH. I am SICK of it and don't want to think about it (which I pretty much do )24/7 and thats what it would be at this point in time. I am SICK of how much I talk and think about it now. I am sure everyone around me is sick of hearing it!!! Guess I am too new to being chronic and I was such an active person and now I just want to take all the PF time I can get and enjoy. But I do get totally what you're saying, do you me???? |
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Title: Re: Keeping a CH diary? Anyone? Post by Magman on Oct 28th, 2004, 11:50am on 10/28/04 at 10:52:01, becky8 wrote:
I dont think it is due to being new to chronic. I know there are alot of people here that feel the same way...chronic or EPI. Yes, Becky, I do get what you are saying. I understand and appreciate your 'take' on it. We will be offering up this tool for those that wish to use it. Of course, we would hope to have vast numbers participating simply because larger numbers will provide more concrete analysis. Having said that, we know that reality will provide smaller numbers of participants. As long as those that participate, do so with earnest and as much factual and correct data as possible, we will glean usefull information. Kind regrads, -dan |
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Title: Re: Keeping a CH diary? Anyone? Post by Jeepgun on Oct 28th, 2004, 12:05pm Dan, Svenn: Lemme know when it goes live. I'll be glad to participate. |
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