Tuesday, December 9, 2014

I Have Narcolepsy - What Does That Mean?

lots of naps drowsiness narcolepsy

Do you suffer from excessive daytime sleepiness?

I hate how that question sounds like the beginning of a pharmaceutical ad or commercial.  Doesn't it?  Well, here is my story.  I am sharing it in the off-chance it might help you.  It scares me because it makes me feel vulnerable, but I think it is important to share.  I know during this journey, I often felt like I was the only one, so if I make even one person feel not so alone, it will be worth it.

Here is what I know:
  • I cannot drive more than 15 minutes without feeling drowsy.  My husband has to drive if we are going anywhere long distance. Just on my commute to work, I usually have to listen to an audio book or call a family member to keep me engaged. 
  • I cannot sit in a meeting or even a seminar without my eyes starting to flutter. I literally have no control over it.
  • If I am just sitting on the couch with my daughter, I cannot control falling asleep. She has actually come up and slapped me in the face and held my head in her hands staring at me. Even though she's only one (almost 2), I think she understands the gravity of it.  It might not sound that bad but with the birth of my daughter it has become pronounced.
Before You Ask....because I have heard these already:

1.  Do you drink caffeine or consume alcohol?
I don't drink coffee or tea.  I may have a diet coke or a glass of wine once a week.

2.  Do you get enough sleep?
Yes, I usually get anywhere from 8-10 hours of sleep every night.

3.  Have you considered your diet or exercise?
I exercise 5-6 times a week, and I eat fairly clean.

And For Driving...

4.  Have you tried turning up the music, rolling down the windows, or blasting the air?
Yes I have and none of it has worked.  Even, I hate to admit this, slapping myself really hard across the face does nothing.

5.  Are you safe to drive?
Yes, I am a really good driver at short distances and have never been in an accident.  I have managed it really well by listening to audio books or calling family members via bluetooth, and my husband drives most weekends or on road trips.

Have You Gone to the Doctor?

I had before with no results, BUT it had come to a point that I was worried I would fall asleep watching my daughter and she would get hurt.  Before, when it was only me, it was not as big a deal if I took little cat naps here and there. I mean I literally could fall asleep anywhere. People were enviable that on a flight to Europe, I could sleep for 90% of it. They called it my super power. Not so fun anymore.

Could it be Depression?

Initially the doctor's assessment was that "Sometimes there are no answers."  She was skeptical I had anything wrong with me because my symptoms did not perfectly fit into any diagnosis she could immediately think of.  When I burst into tears from frustration that she could not help me, she said, "Well you know, it could be depression. I could prescribe you some anti-depressants."  Eventually we ruled that out too.

In the end, at least, she deferred to sending me for some more tests.
  • Blood Work to see if I was anemic or had a thyroid issue
  • A Sleep Study to see if I had sleep apnea.
  • Referral to Neurology to see if I had narcolepsy
She assured me I had none of them but that we might as well rule them out.

Well the test results are in, and I Have Narcolepsy...without cataplexy (loss of muscle control).

Which means, I do not lose muscle control, collapse, and fall over while walking or talking to you, which is why I think I never considered I might have narcolepsy.  Cataplexy is probably the most prominent symptom people associate with narcolepsy.  In doing more research, I learned that Narcolepsy is a neurological disorder that impacts 1 in approximately 2,000 people in the United States.  Incidence of Narcolepsy can vary by ethnic group as well. The highest occurrence is found among the Japanese at one in about 600.  And I am half Japanese.  Need I say more?

It's like a light bulb has gone off for me.  All the dots are beginning to connect.  I am still educating myself, but overall I just feel a sense of relief.  The neurologist I saw was amazing. He talked with me for a full 45 minutes and really listened to what I had to say. At the end, he shared that he actually has narcolepsy too and chooses just to manage it instead of medicate.

It might not seem like much but he recommended eating sunflower seeds while driving. I tried it and IT WORKS. For me that is literally life changing.  I currently have anxiety about meeting up with friends that live in another city because I know the drive will be too hard for me. How sad is that?

The Other Symptoms I have but never thought were related are as follows:
  • REM Sleep within 5 Minutes of Falling Asleep - versus the 80-100 minutes it usually takes others.  (I never thought having 5+ dreams a night was weird).
  • Sleep paralysis – A limpness in the body associated with REM sleep resulting in temporary paralysis when the individual is falling asleep, or awakening. Episodes can last from a brief moment to several minutes.
  • Hypnogogic hallucinations – Events of vivid audio and visual events that a person with narcolepsy experiences while falling asleep, or while awakening.  
  • Disrupted Nighttime Sleep (DNS) – The inability to maintain sleep for more than a few hours at a time.  (I assumed I just had an active bladder).
It is still a fairly recent development for me in the last couple weeks.  I am not even sure I should share it for fear of what people will think of me.  My doctor even said I should ask my manager about working in naps during the day (would have a doctor's note and everything) but that just feels like too much right now.

I do not want people to look at or treat me differently.  I am determined though to manage this and not use it as a crutch. I honestly just feel relieved to know that I was not making stuff up. I really do have a condition and the validation of that was really all I needed.  Do you have any friends or family that this sounds like?  How about yourself?

Let me know.  This is all new to me but I would love to connect!

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  1. This is new to me and I've heard of narcolepsy, but so far, you're the only blogger who admitted of having one! I don't think it is serious, or is it? I was wondering if it is tied to being overweight? The reason I'm asking is that I might be experiencing the same symptoms you have. Although it could be that I'm heavy (by 10 pounds) and that's why I'm lethargic. My sister was saying the same thing and said I should try the military diet. She even gave me a link saying that it is failry flexible and allows food substitutions. Here's the link, by the way: http://3daysmilitarydiet.com/diet-plan/3-day-military-diet-substitutes.html

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