Tuesday, November 10, 2009

cluster headaches: physicians change headaches immortal

Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of Cluster Headaches.

During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.

The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.

My first question was “What do you know about cluster headaches?” The answer was so scarily uniformed, the rest of the physical blurred.

To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.

Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.
I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!

Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.

Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.

In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.

Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”

Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …

Time to search for another medical guru!

Related entries:

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer


  1. because doctors have quotas to make and can only see a patient for 15 minutes (or less) before they move on to their next one, so in and out, and here's a prescription as you leave

    seriously, I hope you can find someone who knows about them and effective ways to treat them that is on your insurance plan

    (hoping you do find help so you don't go through that terrible time you had this past spring and the terrible times you have had before)


  2. That's so discouraging. You just get 'em trained, and you have to start all over. Continuity of care doesn't seem to be anybody's priority, but it should be.

  3. Not sure where to start...
    Diagnosed 3 years ago as cluster headaches.
    Have had them at least 5 times a week...every week since. No break.
    Have poroably taken 1000 imitrex shots since.
    Suddenly they only are effective for 2 hours. Now I am scared.


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