THIS IS MY STORY . . .

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Feb 14, 2014

Last week was tough.  For once, it’d be nice to have no adventures. ;P

Wednesday afternoon, I started experiencing a bad headache, but I wasn’t too concerned because I get migraines (they usually don’t last more than a day).  So I just waited for the headache to pass.  It was still there the next day, though, and I started struggling because of the pain.  My left drooping eyelid got especially bad.  And none of my usual nerve pain meds or Ibuprofen and Aleve touched the pain.  As I mentioned in my previous post, my neurologist wondered if I had a TIA or small stroke..  And so I headed to the ER.  Because of the snow, I couldn’t go to OHSU’s ER, and I hated that I had to go to a different hospital.  Long story short, that was a terrible mistake because this particular ER didn’t know “me” and my complicated medical history.  They didn’t even do a full neurological exam.  All they did was give me one hydrocodone/acetaminophen tablet.  They sent me home.

The next day, the headache pain was so bad.  I couldn’t eat much because of the nausea.  I started having balance issues and was also dealing with new right hand weakness.  So this time, my parents and sister drove me to OHSU’s ER.  This hospital is so awesome (it’s #1 in the state of Oregon ;).  They got me a room right away.  They did labwork and gave me lots of IV pain and nausea meds.  People with EDS are prone to aneurysms and strokes, so the doctors were concerned that maybe I did have something like that.  They ordered two emergency MRIs which I had done there in the ER.  Thankfully, the scans were clean!  The doctors told us I was probably dealing with a “complicated migraine” which is not just a simple migraine.  They’re complex and can cause weakness/neurological issues.  They gave me IV toradol for pain, but that unfortunately didn’t help.  So they put together a “migraine cocktail” you could say. 😉  An IV magnesium drip, Reglan for nausea, and IV benadryl which has been shown to reduce pain.  My pain went down from a 9 to a 5, and my drooping eyelid improved.  We were in the ER for 8 hours.  But we arrived home at 2:45 AM, and I slept till 4 PM the next day!

The adventure wasn’t finished. ;P  I woke up because my blood sugar dropped very low (a bad issue associated with mitochondrial disease).  My heart was pounding, I was shaking, sweating, and extremely weak.  I laid on top of our stairs, unable to move.  My mom had to quickly spoon feed me grape juice to get my blood sugar back up.  It was hard for me to even suck from a straw because I was so weak.  I had to sleep a lot after that, and it was too exhausting to even watch a movie.

That episode on top of two ER visits did me in, and I’m still trying to get better from this weakness.

So that’s what happened last week.  How was your weekend? 😉

Post written byKerissa

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