The NewBec

I'm not who I was.

Call Me Crazy…

It has been awhile since I’ve posted something informative, health-wise.

The truth is: I’ve been in a rough cycle lately and I’m torn between the desire to be a helpful voice of awareness and the desire to avoid attention. I want people to be informed, but I don’t always want to talk about it. It’s quite the paradox, I know.

The truth is: because of the lack of certain proof on the sleep study, sometimes I still have doubts about if narcolepsy is the right diagnosis… or the only right diagnosis. I’d feel quite silly if, one day, if ever I can get a second opinion from the right neurologist, I may have to come on here and say “just kidding, they weren’t completely accurate the first time”.  I guess ultimately that doesn’t matter because I’m still spreading truth about narcolepsy and truth about what I deal with, and even in the chance that my diagnosis isn’t 100% accurate, I’m still sharing truth. It’s just a part of my type-A that is bothered by the mere thought.

The truth is: when I first shared my new diagnosis of narcolepsy, I expressed most of the symptoms, followed up by “There are more, but that’s enough to give you a general idea.”

The truth is: the “more” makes me feel a tad bit crazy. Especially with everything being so new, I didn’t want to drop the H-bomb on everyone yet.  I’ve gotten used to saying it in real-life now, so here you go:

The truth is: I hallucinate.  I actually repressed my acknowledgement of this for a long time. I got really good at filing it away in the “it was only a dream” category of my brain once I sorted through what reality was.  And really, that’s what a hypnagogic hallucination is. It’s a dream… when you’re awake.  Lest you be too concerned, I don’t just walk around having hallucinations throughout my day. They come either before falling asleep or after waking up.  Here is a wonderful short informative video by Julie Flygare that will give a good explanation.

Typically, most of my hallucinations aren’t terribly freaky, thank goodness. (Now my dreams on the other hand…).  I’ve seen the Rev get up and get ready for work only to be confused later by the fact that he hadn’t gotten out of bed yet.  His “Go-Go-Power-Rangers” txt messaging notification has gotten on my last nerve in the middle of the night… except his sound wasn’t on and we could go back and see that he never received any texts. Most recently I heard the kids get up and watch Road Runner & Coyote cartoons in the middle of the night. It was just the sound. Which is hilarious because I’m not sure if they have ever seen those at all, so I wonder what on earth prompted me to “hear” that.  Sometimes I do get terrifying instances of not being able to breathe or fight back when I have to, but it’s not the usual. Also, I don’t always experience hallucinations every time that I experience sleep paralysis. Sometimes I just wake up & can’t move. It used to freak me out. I’m so used to it now that I generally after a few seconds am aware of what it is so I’m not usually scared in the moment anymore when it’s just the paralysis. With the hallucinations, well, I think they are actually happening and I don’t figure out that it hasn’t until after the fact.

Changing gears, here are some pics of my cuter crazies:

This is a day in the life of trying to get this little dude to take his antibiotics…Image

This is the most snow we have seen at our current home. It came in about an hour and left almost as quickly:Image


Have a crazy-good day, ya’ll!


One comment on “Call Me Crazy…

  1. NationalSleepWalk
    February 5, 2013

    I love this post. First, thank you for sharing your challenges and fears surrounding diagnosis and raising awareness. It must be difficult to not feel 100% sure of your current diagnosis. Unfortunately, there are so many grey areas in science still, especially surrounding disorders originating in the brain like narcolepsy – the brain is of the last great mysterious frontiers of the body. What we now call “crazy” may soon be as well understood and tangible as our understanding of diabetes or a broken bone. Sorry, I digress.

    No two people with narcolepsy experience the same symptoms to the same degree. There’s a wide spectrum within the “narcolepsy” or “idiopathic hypersomnia” area. The titles don’t distinguish all that much at this point, but it sounds like your experiences align with many people in our community.

    Thank you for bravely talking about your hypnagogic hallucinations and sleep paralysis here. I think I over-emphasize the togetherness of the two experiences in this video, thank you for pointing out that they can happen seperately. I couldn’t help but laugh reading your examples because I’ve had such similar ones – curtailed to my living situation. The auditory hallucinations are probably the most frequent for me.

    Sending wakefulness and big smiles your way,
    Julie F.

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This entry was posted on February 4, 2013 by in Uncategorized and tagged , , , , .
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