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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Does anyone keep a CH journal?
        
(Message started by: BMoneeTheMoneeMan on Jan 29^th, 2005, 12:35pm)

Title: Does anyone keep a CH journal?
Post by BMoneeTheMoneeMan on Jan 29^th, 2005, 12:35pm

I have had 2 docs tell me to keep a CH journal and write down the date, time, level and duration. Does anyone here do that?
What is that useful for?
Thanks and PF wishes
BMonee

Title: Re: Does anyone keep a CH journal?
Post by yikes-another-one on Jan 29^th, 2005, 12:42pm

It does help as our memory of extreme pain
disappears and we mitigate it downward
thinking it couldn't have possibly hurt that bad...

Also if you have more than one type of headache, the journal will illuminate it. It is possible that stress
or food allergies are causing some of the pains....

No one seems to really want to read it,
not one doc ever did more than peruse it,
but after fighting this for 6 years without a journal,
now I have better amo for the docts who want to
prescribe Tylenol-3 and send me home.... lol ;) [smiley=laugh.gif]

Title: Re: Does anyone keep a CH journal?
Post by nani on Jan 29^th, 2005, 12:49pm

It's a good idea to do so, Brian. Not just a CH journal, a headache journal. Like TJ said, it helps you see if you have specific triggers and to see if you may suffer from more than one type of headache.

Title: Re: Does anyone keep a CH journal?
Post by bigred on Jan 29^th, 2005, 1:03pm

I have kept a notebook with every pill or headache Ive had since last october. It was scary to look back and see how desperate I was in using over the counter meds. It made me realize I needed help. I went to my first neuro doc on 1-28 and it did help him get up to date on the frequacy and high leval of pain I was in.
It saved time in his evauluation of where my cycle was at. Also in his prescription for fast action.
I highly recomend good record keeping on your meds and dont forget to kip-scale your HA with time of day and leval of pain.
Good luck,
BIGRED 8)

Title: Re: Does anyone keep a CH journal?
Post by E-Double on Jan 29^th, 2005, 1:04pm

I have a scatter plot developed that accounts for all variable (pre-meds, meds, times, duration, pain levels etc............) that I have been able to think of..

I kept it for many months and literally prints out over 10ft. long and near 3ft high........

Too be honest once I came to "grips" I started slacking......

I can send you my template if you like.....

I think I stopped taking data in September to be honest after starting cycle Full Blown in MAY but according to my wife getting brief wake me ups ...shadows...premonitions of what were to come in April. Who knows...I never new it would last this long.(Not complaining..)

Point : It is good to try to find patterns in your heads behavior ;) and to see if meds are actually working .
Sometimes when you put it in a visual display you can see the patterns.....changes, etc.

Good practice.

Be well,

E

Title: Re: Does anyone keep a CH journal?
Post by Kris_in_SJ on Jan 29^th, 2005, 8:21pm

Yes, yes, yes!

My journal is vital to both me and my doc. By noting the times of day, duration, intensity, what works and what doesn't, med doses, etc., you and your doctor get a pretty clear picture of your cycles and what works best for you.

For newbies who might still be undiagnosed, it can be especially helpful, since there's nothing quite as distinct as the pattern(s) of a CH sufferer.

After my last cycle ended, I kept my journal as I slowly weaned off all meds - noting shadows, twinges, etc.

Hugs,

Kris

Title: Re: Does anyone keep a CH journal?
Post by 1MajorPain on Jan 30^th, 2005, 8:55am

I have always had a journal, among other things it gives me something to do to take my mind off the pain of the beast. Once I started using mushrooms it gave me a clear view if things were improving and the direction I needed for futher dosing.

Major

Title: Re: Does anyone keep a CH journal?
Post by mynm156 on Jan 30^th, 2005, 10:09am

I have used one in the past it helped me identify the fact the I have CHRONIC UNPROVOCTED (except by alcohol) CLUSTER HEADACHES.
However I could see thet it might be of some benefit.
MYNM156

Title: Re: Does anyone keep a CH journal?
Post by Jayne on Jan 30^th, 2005, 7:45pm

I did, let me show you an excerpt.

Monday Jan 1st 1999. "Fuck"

Tuesday Jan 2nd "shit shit shit shit"

Wednesday Jan 3rd "Bollocks"

Thursday Jan 4th " Sweet Jesus"

Friday Jan 5th " You gotta be shittin' me"

Sat Jan 6th " Mother F........"

Sun Jan 7th " HAELP"

Title: Re: Does anyone keep a CH journal?
Post by PrettyH8Machine on Jan 30^th, 2005, 7:54pm

on 01/30/05 at 19:45:11, Jayne wrote:

That pretty much sums up my book too. ;;D

Though the last 2 days have been 'different' since my first dose of the alternative cluster treatment as referred to at Clusterbusters.com. I have only had 2 attacks the last 2 days, and right now am very lightly shadowing which, being chronic, is not the norm for me. I usually shadow from heavy most of the time to 'oh fuck' kip3-4 at other times. I still have a tender & sore temple, but its not burning like normal while feeling that pulling in the back of my eye.

Phase II of the alternative treatment will be Wednesday with part III the following monday.

Wish me lucky charms,
CD

Title: Re: Does anyone keep a CH journal?
Post by sandie99 on Feb 1^st, 2005, 3:43am

I do. But, in my case, my CH diary consists of how many times I have it daily, in what side (usually right) and what medication I have used, both preventatives and painkillers.

The biggest advantages have been that my docs can see what meds & doses have already been used. It also reminds me when was the last time I had a PF day, which is, of course, rare.

Best wishes & PFdays,
Sandie

Title: Re: Does anyone keep a CH journal?
Post by lionsound on Feb 1^st, 2005, 9:06am

I've found my journal extremely useful when I've gone to the ER.

It's hard for me to communicate while in pain so it shows pretty much what's going on and what meds I've taken. It helps them not to give me drugs that will collide with what I've taken for prevents or abortives. Last time I was there they just copied it and put it with my chart.

The chart or journal can never tell the entire story of your HA's (unless it looks like Eric's ;)that is one amazing chart), but it is very helpful to have as a base to start from with yourself and the docs.

Be well,
lionsound

If you go here there is a simple calendar from NECH you can download. It's a good one to start with:
http://www.headachenech.com/patients/

Title: Re: Does anyone keep a CH journal?
Post by Ruth on Feb 3^rd, 2005, 4:22pm

For some reason, long before I found this site, I kept a journal of the Clusters, when they came, how long between cycles etc, meds I took, pain level. I used color pencils and had a code as to what each color ment.
I never took it to a Doctor, I never had one ask, but then for several years I gave up going to Doctors, I had made up my mind that they couldn't help me.
When I found this site, I tried Doctors and medication again. I have had very good luck.
I agree with the others keeping a journal is a good point of reference to you and your Doc, if he asks, or not!

Ruth
+

Title: Re: Does anyone keep a CH journal?
Post by Rock_Lobster on Feb 3^rd, 2005, 10:42pm

I keep a log of everything...
shadows
CH's
drugs taken

As the others have mentioned... I still cannot believe how many meds I was taking and how frequently I was being slammed as recently as last episode.

Title: Re: Does anyone keep a CH journal?
Post by vig on Feb 4^th, 2005, 11:04am

Don't forget CHATS up top there.
It's an online journal tool.
in Beta, but needing testers.
go on... jump right in.

Title: Re: Does anyone keep a CH journal?
Post by miapet on Feb 4^th, 2005, 11:46am

We second what Major said . . .we keep a h/a journal . . .and used it to determine when to dose & how it was working . . .. . .it really sucked writing down the h/as but it totally ROCKED when we realized that we had the beast all kinds of phucked up . . .and then could watch (and feel) as it faded away . . .
*positive light and energy*
miapet

Title: Re: Does anyone keep a CH journal?
Post by Damon on Feb 8^th, 2005, 12:50am

I used to until it depressed me.......decided that I already took enough meds, didn't need to add Zoloft or Abilify.

Title: Re: Does anyone keep a CH journal?
Post by Mr.YL on Feb 8^th, 2005, 1:15am

YUP and the test Dr. snagged a copy without my permission once. Oh well stats show that ole Jorge didn't get any use out of it nor asked me for my opinon.
Hay...KEEP a JOURNAL...
Mr.YL

Title: Re: Does anyone keep a CH journal?
Post by Mr.YL on Feb 8^th, 2005, 1:23am

Also when we slip out of cycle we can look back and see what we went through. Knowing we made it and will be stronger the next round. Our memory may slip so we can look back during the good times and rflol at the beast knowing it did not get the best of this epishode... Mr.YL... Heck just as Elain, I have wondered back to this site just to see what it was I was goin through and alot of my Journal from time to time is posted right here. again thanks DJ

Title: Re: Does anyone keep a CH journal?
Post by Gator on Feb 8^th, 2005, 12:49pm

My second neuro asked me to keep a journal. I tracked date, time, intensity, duration, medication, what I was doing and what I had eaten, then the ba$tard never asked to see it. I was getting hit so much that it seemed all I did was bang my head or write about it, so I stopped. It's been going for 16 months now. The crap ain't going away and I have better things to do with my life than to relive every ache and pain.

Title: Re: Does anyone keep a CH journal?
Post by Ree on Feb 8^th, 2005, 1:30pm

When Dave goes into cycle we keep a journal... The docs say he is a text book case...His cycle always goes like this....

He will get hit............... about 1-2 weeks later he gets hit again. Then they get closer like every couple of days rapidly closing in on him. Then he gets like one a day, two a day, etc. Then he gets more and more per day usually around the same time every day and night. The intensity gets worse and worse and worse and worse and he gets more and more and more and more...til he thinks he is going to die..........we call this his "peak" time. This is when he abuses his meds and takes too much imatrex and I'm on suicide watch....
Then the cycle that it is... it gradually goes the other way...as if leaving us... spacing out in the same manner.

We wouldnt know this unless........... we journaled it... Im sure there are times when Im not there. When he is at work and Im away from home and he gets hit etc... but the last time we were effectively doing it... thats how it went.......... be well ree

Title: Re: Does anyone keep a CH journal?
Post by Edu_Martins on Feb 10^th, 2005, 3:29pm

I do that since i knew i was a Clusterhead.

Im monitoring just the days, duration, medications and the strengh of the pain.

Reading this, date to date, i can see some like this:

about 18-20 days with crisis and about 10-15 days without the pain. Most of my pains are medium and strong and it takes about 1 hour to finnish.

Title: Re: Does anyone keep a CH journal?
Post by MorDog on Feb 10^th, 2005, 11:02pm

I keep a journal. No one ever asked me too. It is more for my benefit then anyone elses. It is just one of the tools I try to use to help cope.

Title: Re: Does anyone keep a CH journal?
Post by moi on Feb 11^th, 2005, 4:38pm

hey bmonee. Seeings as my ch's have only started in th e last two weeks or so and I only get one Booma a day I have a inbuilt diary, so far. Tis a great idea though. I will start today. I'm more for the things that I do each day , eat, and drink, and my posture. Being that heat is a spark for me, sitting with my head verticle body on a slant and legs horizontal, like being propped up in bed reading a book, these things I know never to do. Drinking also. I thought it would be great to have a page where people could post the things that spark their ch's off. It may help others in thinking before they act. I'd also love to here from people who have had long time breaks in there cycles. Do they remember something different about that time, ie stress was at zero, they were fitter, or their attitudes were different to the stage they were at when their cycles started again. moi

Title: Re: Does anyone keep a CH journal?
Post by Wendy1 on Feb 11^th, 2005, 11:31pm

I used to keep a journal because I my cycles have been 2 yrs apart and I can't always remember what worked the last cycle and all the things I've already tried.

Also if you're taking any prednisone, it's good to keep track of the taper.

I don't anymore because the only thing that works for me is Verapamil, O2, Vicodin for pain, and an occaissional trip to ER with Demerol.