Wednesday, November 19, 2008

The Rise and Fall of The Migraine Diary

I would like to be able to say that I'm a good migraine diary keeper, that I write down every fluctuation of symptom and pain with precision, and I have managed to show some doctors my efforts, but as a rule I suck at keeping a migraine diary.

Recently, I was rummaging around my office and I came across a couple migraine diaries. As I flipped through them, I realized there seemed to be a trend. I would start out the diaries in an orderly, well documented fashion, but eventually everything dissolved into chaos. I would forget entries, become fed up with the repetition and basically becoming sick of hearing myself whine.

So I made this migraine diary collage to show my struggles in keeping an ongoing migraine diary.


Sharoni said...

I am SO glad that I am not the only one who has a hard time keeping up with my migraine journal

beckiwithani said...

Hi, new reader here. So glad I found this blog. I feel sometimes like migraineurs should identify themselves similarly to how people identify themselves in chat rooms (17/M/Bi/Chicago), but instead something like "31/F/2 or 3" (Which stands for 31 years old, female, 2 or 3 per week.)

But I digress.

I've heard of two ways a migraine journal is actually successful. One way is how I do it -- I print out a calendar very small, 2 months per page, and write only the severity (1-10) and how much and what sort of medication I took. (I mention how long I waited till taking more if the first dose didn't work.) So, 6-7, 2 FN, 1 FC (6HL) means "severity 6-7, two fiorinal, 1 fioricet with codeine (6 hours later)." My neurologist makes a copy at each appointment.

I also have a friend who had a lot of success setting up a google calendar. She could get to it from any computer, and even color-code (red for alcohol-induced, green for hormonal, etc.)

Hope this helps... Thanks for providing this blog.

Debbie said...

Hi, funny that I should read this just after trying to play catch up on my diary. I thought an excel spreadsheet would appeal to my right brain, but that is the side with the migraines. So I guess my left brain is taking over with chicken scratches on scraps of paper left on the kitchen table...

Christy said...

The family calendar in my kitchen has become my migraine calendar. I write an M on days when I have to take migraine medicine, and a zero if I don't take any pain medication at all, and if there's nothing written there it means I had some kind of unspecified pain and took something that was not naratriptan.
I used to have a more elaborate system involving colored markers, but, typically, lost some of the colors and couldn't continue.

FarenTravels said...

It's exciting your post about migraine diaries is such a hot topic (it's nice to see others) - as I keep one too. It IS so time consuming.. and like Kristy, I keep mine on excel. I swore I'd never do this, but I've gotten to the point where I have to update it every hour otherwise I lose too much information. I graph them in segments against each other and over time for patterns. I've learned so much, otherwise I wouldn't bother. But unfortunately I haven't found a doctor that cares and that is so frustrating. I was hoping they may be able to tell me what the patterns mean as far as health issues, but perhaps they ignore and downplay it because they just don't know. Anyway in the future, I can't wait for to open up tracking and graphing tools to anonymously compare results with others. Until then, it's a great resource to compare symptoms and triggers/causes (you can even add your own for others to check).

We can all help each other,
from one migraineur to another,

baldsue said...

Mmmm...I see your collage and for some reason I want m&ms while I think about the letter M being honored on Sesame Street.

Each doc I've been to has had his/her own requirements for a headache journal. For the amount of help I've gotten from each doc, it wasn't worth the effort to follow their standards. I decided I would conform to none of their standards and create one that worked for me, 'cause ultimately I have to explain it anyway. I might as well understand it.

Alexandra Carmichael said...

Beautiful collage - I always find artwork so therapeutic. It's that or eating, so if I can put my mind to it I'd rather do art.

As for the migraine diary, sometimes it also helps to recap a "life story" of everything you've tried - I did this with my condition (vulvodynia) to pass on what I'd learned, and I ended up learning some things myself! This woman did it for her 25 years of migraine pain: I've tried so many things to ease the pain - A Migraine Story.

Good luck with your PHD!! We try to keep things super simple at our house, no gifts, very few decorations, just celebrating time together - but then our families are hundreds of miles away so while we miss them, in a way it's easier to do our own thing.

Thanks for your blog, and congrats on all the awards!! :)

Yes, My Name Is Really Brooklynn said...

It is friggin hard to write everyday...friggin hard!

Michael Cowden said...

The hardest part I find, is to keep track of the migraine free days... I'll find gaps of a few months without a migraine and wonder--what was I doing? What was I eating? How did I manage to go that long without one?

You might try using MigraineLiving, it's a free online migraine diary. I created it for my own use--to graph my migraines and their correlation with various dietary and environmental triggers. Maybe it can help you as well.