Thursday, February 13, 2014

What happened last week

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? ;)

8 comments:

  1. Migraines are god awful.

    I've had a couple throw me up into a pain level where it just makes everything go haywire and usually I end up throwing up a lot because mito has shut my stomach off. Then I have to go to the ER and they are usually not that helpful. "Why can't you take your percocet" IDK because I haven't been able to keep down water since yesterday?

    I've actually had to stop going to the ER because it's not even worth it anymore.

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    1. I'm sorry you get migraines as well! And that's terrible the ER can't help your pain. :( I hope everything's going okay now. How long have you had mito?

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    2. I've had the symptoms to some degree my whole life but the doctors didn't figure out what was going on until about a year ago so I haven't been in treatment for it specifically very long.

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    3. Yeah, I wish mitochondrial disease was easier to diagnose....I'm clinically diagnosed but have been waiting to see a mito specialist in San Diego to get it genetically confirmed, etc. He's still reviewing all my records.

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    4. I've seen a specialist but I only have had the CPET test for confirmation because the DNA test is 16,000$ out of pocket and insurance doesn't cover it. The insurance also won't cover my mito cocktail, because I haven't had the DNA test. Because you know, fair.

      It's worrying though after what happened at children's recently with the poor girl who's been locked up because the doctors don't believe she has mito. I won't be seeing any psyche doctors anytime soon after that.

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    5. Yeah, dealing with insurance is always hard. My insurance first denied the DNA test, but the laboratory appealed, and thankfully, Blue Cross/Blue Shield agreed to cover the whole cost!

      I agree, the case involving Justina Pelletier is so sad and unreal that something like this is happening!

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  2. http://www.dailymail.co.uk/femail/article-2564914/Bed-ridden-rare-illness-22-year-old-cured-healthy-eating-recipe-app-number-one-iTunes.html
    I follow your blog. I saw this article in the Daily Mail about POTS and thought of you. I'm sure you already eat well but wondered if there was anything here to help.

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    1. Thank you for that article! That's really interesting! And yes, I do try to eat healthy and stay away from things like MSG, aspartame, etc. :-)

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