Tag Archives: paralysis

Update on the “wink”Β 

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Howdy, do, peeps, thought I would give an update on my lil “wink” face situation. While there has been vast improvement in recovery of my eye returning to its rightful place, lol…. It alas still looks like a lil wink, haha, good news is pain has been drastically reduced to a dull roar, with only a couple how do you do “ice pick in your brain” pains, here and there,  to remind me it might not be over just yet. 

Sooo I decided inspite of it, to put on my face, get dolled up, and ignore the ice picks, and pretend I am normal, only problem with that was….I’m not:(…..I fell asleep. When I woke up for the 3 Rd time, I hoped that was the end of it. I had taken my Modafinil, but today it definitely isn’t working. Some days have been worse some days have been WAAAAYYY BETTER, just trying to figure it all out. Especially now I am realizing that I have to look at my narcolepsy/cataplexy differently because of my hydrocephalus, and how it affects me differently when compared to someone with narcolepsy and no hydrocephalus. If you are reading this, and you have narcolepsy with hydrocephalus I would especially like to hear from you, please. Anyhoo, I continue to work on my health, and get answers where I can, every little bit helps. I see my sleep doc soon, to discuss different things I can try , and the narcolepsy/hydrocephalus combo, and how to approach it more successfully, if it’s possible:) Anyhoo, enjoy the rest of your weekend, I’m waiting for the rain to roll in, haha! Ciaos for now😘

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I got the “wink” face/(

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Now and again, weather related, sometimes, when I’m tired, when I’m not, when I’m happy, sad, angry, whatever the case, and on those certain occasions, I get what I actually have right now, and have decided to call my “wink” face.

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In an instant, my right eye, sometimes the right side of my face, and even my body will go “paralysed” for minutes, hours, I believe the longest was a few days for the body.I will feel a tingling, burning, in my arm, or leg, til they droop like a rag doll, and a heaviness in my face like there is a weight hanging on it. For the longest time, before blogging, I just thought and so did my doctors, that it was migraine related, or remaining damage from delayed hydrocephalus surgery, causing more damage to my brain and nerves, basically I figured this is what I am stuck with, pain and paralysis. Anyhoo, after reading through some fellow narcoleptics, migraine, and hydrocephalus blog’s, it seems there might be a corolation between my intermittent paralysis and my narcolepsy. For years I have had these weird sensations like hair hurts, stings to breathe, ice cold eyeballs, freezing roof of my mouth, right side of my mouth no feeling, blindness in right eye momentarily, sleeping abruptly, stabbing, pain in my jaw, side of head,  pain in the side of my forehead, body paralysis, slurred speech, over ten years of so many weird symptoms, so many specialists, without any real answers, its frustrating for all of us, but now its somehow better since my brain surgery, like a new lease on life,getting time to sort myself out, lol:)Anyhoo, I can’t rule out migraine either, could be both or a three for, lol, Anyhoo, just needed to share about my
” wink” cuz its giving me a real problem todayπŸ’•
Please enjoy the beautiful summer day for me!🌸🌸

P.S. putting on eyeshadow is a real challenge, lmao! Good thing my younique party isn’t over just yet;)