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Kris_in_SJ
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The Need for a Cluster Diary - From a Veteran
« on: Jun 27th, 2005, 8:59pm »
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Hi All,
 
I'm always full of advice, but have a piece of wisdom to share with all newbies - whether already diagnosed as clusterheads or not.
 
The subject of a HA diary has been mentioned many times in the archives and recently.  I can't stress how important it is in terms of not only getting a proper diagnosis, but also in helping your doc understand how you do or do not respond to meds.
 
Regardless of what type HA you suffer (if you're here, you believe you might have clusters), keep a diary.
 
In it, note the time of onset, exactly where the HA is and/or where it hurts the most, what meds you take and when, how you respond to the meds you take, the intensity on a scale of 1-10, the duration in minutes and/or hours.  Keep it up as the doc changes your meds and dosages.  Note the med changes and dates in your diary.
 
If you need to, do a little back-tracking, but try to be accurate.
 
My last cycle, I kept a complete daily diary of every little thing that happened in my cycle.  It's still stapled in the front of my patient file.  It helped me get my official "cluster" diagnosis, and it helps my doc determine what med levels help me.  In fact, as I weaned off all meds after cycle, I kept a diary of shadows, when I experienced them, how I weaned off or ramped up, etc., to finally become totally pain and med free .... at least until next time.
 
Sorry for the long letter.  It's important, though .....
 
PF Wishes to All,
 
Kris
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Re: The Need for a Cluster Diary - From a Veteran
« Reply #1 on: Jun 27th, 2005, 10:47pm »
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Thanks Kris, and this is SO TRUE!! I think it will really help me with my current issues (having non-cluster things going on), if I can have a record of how different things are now from what they were.  
 
With all the insanity that is going on with trying to get a different neuro, if I have a diary, and a copy of that diary, I will have a record of what was presented and discussed with anyone who doesn't work out.  I KNEW the neuro I was referred to was not for me, when he told me my PAST issues weren't important; he literally wanted to know what was going on that DAY???  My past issues could point to triggers, reactions to meds, etc.  
 
I promise, I am going to get out my little journal tomorrow, and start my log for my visit, whenever it may be...For two days now, right on schedule, I have been waking up with sinus and runny eye.  July is just around the corner.... Shocked Yikes!!!! Hide me from the beast!!!
T.Ann
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