Interesting twist of a sleepy plot

Oh for crying out loud.  I just got back from my doctor’s office.  I needed to get some scrips rewritten because they are for much more medication than I actually take (I was hoarding the spares for a few months in fear that I’ll run out and then need them sometime).  The pharmacist here at work asked me what was up since I am only filling a one month prescription of narcotics every three months or so….better to be transparent in these things, especially since I work here.
My GP took some time to investigate between my last appointment and this morning and did a full on chart review for the last 20 years of notes (she’s been my doc that long?  Woah…)  She pulled out all of the instances where sleep,(insomnia, dreams, sleepwalking/talking, sleep paralysis, hyper-somnolence, excessive exhaustion) issues have come up over the years.  I had a sleep study done when in my early 20’s for issues similar to what I’m experiencing now and, in that report, they suggested a particular diagnosis that she didn’t agree with back then.  With all the rest of the info, however, she’s reconsidered.  She’s diagnosed me with Nacrolepsy.
I have a sleep study scheduled for December of this year so they will be able to confirm her diagnosis after the results are back in.  She added a lumbar puncture to determine my hypocretin levels (most common to find a low level of this in patients who experience cataplexy which is the one symptom I don’t seem to have a lot of instances of…)  I’ve already had two spinal taps in the last decade…I was hoping we could not do any more for a while.

In the end, the only thing they can do is try to keep me awake through the day with stimulants.  Not so great with the anxiety and all but, will have to see what they decide to do with me before worrying about that.  For now, I’m reintroducing coffee into my diet again on a regular basis even though it doesn’t seem to help much.  Maybe I just need to drink a lot more.  I used to drink up to 6 large coffees a day.  (Same reasons, just didn’t know why I was so tired all the time).

Not sure how to feel about all of this.  My doc is calling the sleep clinic to see if they can see me earlier than December.  I’m going to ask to be added to their wait list, but it’s not going to be easy to accommodate a list minute over-night appointment.  Will pay it by ear, as usual.

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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

6 responses to “Interesting twist of a sleepy plot”

  1. Birdie says :

    I had a sleep study done and it showed I was waking up every 45 seconds. I had to wait for my extended medical to kick in because C-PAP machines are so expensive. If I didn’t have extended I would still be without a machine. Not fair to the people that need one. So wrong.

    • Grainne says :

      Oh my goodness, every 45 seconds?! How did you function?? That sounds terrible. So glad you got that cpap machine – it is so difficult for many people to obtain one, like you say.

  2. The Sound of Ed's Voice says :

    Well yay for possible answers? And potential treatment plans?

    • Grainne says :

      Indeed. This is a good thing. I hope there might be some actual relief in my future. I’ve spent a lot of time trying to accept this is just the way my life will always be so it’s nothing short of a miracle, feeling like there might be an answer in this for me.

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