Welcome to narcolepsy

imageSo recently I received a few messages asking how I have been and have the Drs been able to tell me anything new? Answering the question how have I been is always a difficult question to ask. I can always give the simple “I’m doing ok, could be better but you know lol or I could explain what’s really going on. But if I did explain what I was going thru would people know what I was talking about? Now don’t take that the wrong way, I’m not meaning that sarcastically or snobbish in the slightest. It’s just if I told you I had episodes of paralysis, episodes where I lose my speech , my ability to walk, hold my head up, sip water, even flip you off ? They can happen at the drop of a dime, any moment or I can just slowly fade out and be completely paralyzed for 24-36 hours. I can still hear you, I can still understand, for the most part, what’s going on around me. I just can’t move. It’s like being frozen in time. My brain disconnected from my body. My body asleep but my mind awake.

July 2013 I had a stroke and bounced back pretty well. 2 months later I made it back to work. Worked 2 days and ended up having a 2nd stroke. I didn’t bounce back from that one as fast. After almost a month in the hospital and numerous seizures I was released. I would still get seizures but they were your typical seizures. Other than a couple I have been able to hear and remember what happens around me during the seizures. I’ve even wrote a phone number during one. After 3 years of confusion, I’ll go into later, I was diagnosed with Narcolepsy with Cataplexy.

Yes narcolepsy is “that one where people just fall asleep.” It is a sleep disorder. My brain does not produce the chemical hypocretin. Just as others doesn’t produce dopamine.

Its about that time, this is what will be interesting about me writing a blog.. See how far I get with writing before I do fall asleep 😂 good night

 

 

 

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Author: hippiegirl5

I am a 32yr free spirit, who loves being a mom, science, family, the earth, education, peace, quilting, gardens, and so much more but due to an incurable sleep disorder I am losing more and more of myself. If not from medication then from not having a medication for Narcolepsy with Cataplexy. I am writing now while I have the ability to write. I would like to help raise awareness because it is a silent but crippling disorder.

2 thoughts on “Welcome to narcolepsy”

  1. Hi, can I ask if you ever get drooping eye, side of the face or side of the body during a sleepy episode? I do, just asking if this is typical with narcolepsy / cataplexy . Thanx for your blog .

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    1. Hi 🙂 your welcome.. There are times I can barely hold my eyes up, my face is numb, i have no feeling sensation in my forehead. needle prick, cold vibration nothing in my forehead. But my face doesnt actually droop like it did with my previous strokes. 9 out of 10 times i “droop” or fall to the left side because of the paralysis on the left side of my body being stronger. ,, Now answering the question of is it typical.. that is the tricky part. I have talked to others with NWC (Narcolepsy w Cataplexy) and they do get all of these. The only thing I can not find someone else with like mine the length of time mine lasts. Most people it only lasts 1min – 15 mins maybe even an hour of droggy feeling/weakness. I have had paralysis up to 36hrs. Doctors wonder if those specific 3 episodes could be more of a PTSD due to prior strokes and cataplexy. No one can really explain it yet.
      Thank you for your question ❤

      Like

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