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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, December 27, 2013

Friday Tidbits: "You're a Migraineur!"

One of the kinds of migraines I get.  However the kind I had last yesterday is down below, so annoying that I tried to spare you. The picture might be too much, as the BBC often says.

Yesterday was a bit of a rough day for me: my migraine was not just "bad" but a bit frightening as well. Normally, I have many different types of headaches and migraines, and, given my age, I thought I'd experienced every kind I'd ever have.  I've had migraines as far back as I can remember, experiencing my first doozie when I was five, or just maybe six years old, and  I'd smugly thought there were no other surprises in store for me. Sigh.  Sometimes I marvel at my own stupidity naivete'.

For the first time - that I'd ever noticed, at least - each book page had a fuzziness and light around each word. (It actually looked pretty cool, though I'm not sure how much I'm aging myself if using the word "cool"!) When I closed my eyes, I had three quarter "wreaths" in front of my eyes, with white lights.  I called hubs but when he tried to explain where my migraine med is, I couldn't find it.  For me, this is one of the most frustrating parts of getting a migraine: that my mind can't concentrate well enough to see the bottle, even if it's right in front of my face.  Normally, we have a designated space where the migraine meds are kept but since I've moved back into my redone bed & bath, we can't seem to find the right spot for the so-important pain killers. It's easy enough to find regular medications. However, when you're in pain, it becomes a Olympian feat. (Oh, thanks, readers!  In complaining to you, I think I may have just thought of the right spot - if it's not too far. Hmmmm.)

Hubs was able to run home in the middle of his day and give me the med.  By now I was having psychedelic coloring with my eyes closed.  The room was starting to move and nausea was moving in, way too fast.  Yet strangely, the pain was not that bad.

While speaking to my rheumy on the phone - and I can't remember what led to this remark - rheumy said, "but Irene, you're a migraineur!"

Stop the world.  What?  I'm what?  No, I'm not a "migraineur."  Yes, I do get migraines in my head - and I get severe body migraines as well.  Yes, to keep the migraines under control, I try to watch my diet and have figured out which foods I can have, which not.  I try not to get (too) stressed over things.  (OK, family, stop laughing!)  I try to be good to my body.  And just as I am extremely aware, each and every moment of the day, as to what may keep me from sleeping, so too am I aware of all thing migraine-inducing, from the way the lighting is placed in a room, realizing, too, that the sun and I have a bad relationship, to watching out for glares, living in a pretty dark room and so forth.

I'm trying to figure out what it is that shocked me when I was called a "migraineur."  Was it because though migraines can and are too often 9's, bordering on 10s, driving two neurologists to do two spinal taps (link), they aren't as bad as too many of the overwhelming symptoms of ME/CFS and fibromyalgia?  The whole weakness bit is just about so much worse than anything I've ever experienced. And I've become pretty good at blocking all but the worst migraines out of my mind. Furthermore, I think I can do this PRECISELY because I started getting migraines in early childhood, due to that "window of opportunity" when learning survival skills is constant and mandatory, as dictated by Mother Nature.

Back when I was preggers with my second child, I suddenly went blind in one eye.  A neuro-ophthalmologist declared that I suffered from severe migraines, the blindness a migraine-equivalent occasionally seen in pregnant women. I argued that I didn't get headaches of any sort until hubs came out his shock and said, "you get them all the time!"  I would, evidently, complain I had a headache but not realize it or hear it (much like muttering to yourself) and would start washing floors in order to "outwork" the pain.  One can liken this survival technique as my way of discovering the Lamaz principle, distraction.

When I got my pancreatitis back in September (link), I was puzzled.  My info sheet given to me by the ER stated there are two reasons for pancreatitis.  The biggest reason by far (some say even up to 90%) is alcohol. However, I don't drink at all, not even champagne on New Years, only a sparking cider of some sort to bring in the New Year. (I think I'm going to change that back to champagne: our last few years have been so awful that lots of things will be changed: more on this later!)  

The other reason found in medical literature and told me by my rheumy was due to gallbladder. Problem with that is my gallbladder was taken out over a year ago.

The third reason, not stated, is that pancreatitis can result from certain medications.  I'd been in a very bad place in regards to migraines, almost living on migraine meds, coping with a lot of stresses, as well as allowing myself to eat foods I know eventually put me in migraine-h*ll.  One doctor says it may have been all those migraine meds that contributed (ok, maybe caused) the pancreatitis. On the other hand, it could have been another med.Yes, I get migraines, but I'm not sure why I feel like a fraud if I'm labeled, "migraineur"? The migraine med didn't help much so I'm pretty sure I may end up eliminating this med from my go-to's, since it didn't work as well as it should have. 

On the other hand, it did eliminate the body migraine, the nausea & most of dizziness as well as the colors I had floating around words on a page or what I saw when closing my eyes. However, everything is blurred now and my head feels as if a truck hit it, with eyes that feel as I'd been crying for days. And can someone take the vise off my head? On the other hand (again), this WAS a new sort of headache, with little pain in the scope of things, so perhaps this med is one I should try if/when I get a more typical migraine.

Good Grief! If I'm putting all this thought and energy into my migraines: and discussing them in such length; noting the newest kind as well as describing various experiences in my past; working so actively to prevent them; having had much testing in the forms of CT scans, MRIs, spect scan, x-rays and "things" I've thankfully forgotten, in addition to not thinking very clearly as I try to ignore this mess going on in my head as I write - well take a deep breath - maybe that DOES make me a migraineur.

As always, I hope everyone's doing their very best - only better!  Happy and safe weekend, everyone!  Ciao and paka.

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I'll take this down if it's too annoying.  Let me know.  I was just amazed to discover something so close to what I was seeing.  Normally it's stars, fire works, and so forth.


  1. New reader here. I'm amazed at the accuracy of the graphic, too! I definitely get those...

    1. Thank you, Rachel, for reading and for commenting. Welcome to the zoo! Yes, that picture is amazing... still can't get over it! xx

  2. I am thankful to read about your full body migraines....NOT that you get them, but No one else knows what I'm talking about! I first noticed one when my young Daughert was reading in my room to stay with me, but even the sound of her turning pages caused my whole body to seize then shudder in agony. Is that what you are referring to?

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