'The Headache Diary'

I have always been a writer - writing journals since I was young.

When I first started feeling weird, I wrote it down. I wrote down everything that I went through.

At 4 years, I wrote, "The 4 year Journey" (it has now been 10 years).

The information that I wrote has been invaluable. I did NOT know this at the time.

I found this site 2 days ago because I just happened upon it and I saw "Got headache after having a "Flu-like" illness and "Positive for Epstein Barr," - among other things.

Since it has been 10 years, that info would have been buried in my medical files and burnt up in my brain cell depletion over the years.

I grabbed one of my journals and there it was. OMG.

Because I had a journal, I remembered and that was how I came to be here.

If you haven't started one, you should think about it. I'm amazed at the things that I have forgotten that are important.

dark_soul

welcome to our community. and thanks for sharing this, it sound like a very good idea!

would you like us to add a Diary section for each member? we are asking you guys for new ideas all the time and this sounds good!

what do yo think? (all of you)

Thank you for the welcome and for the forum directly relating to our particular headaches.

A "Diary Section" would be a great idea. There are things that people write to "Themselves" that seem insignificant at the time, but are actually so very important.

People could write journals for the different stages that they go through - beginnings, middle, things that they know work and what doesn't. Things that they avoid that cause headaches. Sometimes just one line of a journal can make all the difference in the world.

I have decriptions in my journal that tell me EXACTLY what I was feeling at the time (as far back as 1996!) when all this started happening. Granted...I cry when I read back - but the info has helped me remember.

It also tells of the **jerks** (doctors) who didn't want to help, how I was treated and how I overcame that.

Anyone else?

I can think of general periods of time and recall how I felt, if I had been experiencing much depression at that point, etc. My memory has gotten really bad, however, so luckily my mom has kept a folder of test results, doctor paperwork, etc for me so that it's just all together and whatnot.

That's about all that I've done... I had tried to keep a journal in general, and I figured that I'd end up writing a lot about how I was feeling with the headache junk, but it was just too hard emotionally to write about it all.

Sometimes I wrote just one sentence.

Other times I got pissed off and wrote many pages - and I type everything, writing takes too long.

Really, the point is to keep track of your headaches and everything related to them - as best you can, because you never know what info could be important.

Now, I usually end up writing about things that have gone wrong (lots of things) and how difficult it is living this way.

I actually travelled to see my headache doc yesterday ("journeyed to a far off land" would be more appropriate due to the extra hours on the train because of the weather!?) and he brought up seeing someone for couseling, since i've been having more and more frustrating and trouble dealing with the side effects (memory, fatigue, etc). maybe a blog for my headache/feelings abuot it all wouldn't be so bad?

talked to Alon - we'll have a first version up within a month +-couple of days..

i hope this would help.

Keeping track over pain levels - very helpful. I keep one at home, and it makes it very easy to see how I react to meds, stressful days and vacations. So personally I believe more in diagrams than diaries.