Long breaks - no more being sorry.

I've decided that I am going to stop feeling bad about taking long breaks from posting.

The fact is that when you have a narcolepsy-type sleep disorder, you sometimes fall behind on things.  If this blog was the only thing I fell behind on, I could live with that.

Luckily, since I was diagnosed, I have been figuring out how to get more done, and still sleep as needed.  Sometimes it works, sometimes it doesn't.

Anyway, I have  topic or two floating around in my head.  I will see if I can squeeze in a much-needed post soon.

For now, prayers for those in Boston.

My description of the effect of Nuvigil

I had a follow-up with my doctor recently, and he asked me how I was doing with my new medicine.  Here's what I said:

I feel like Nuvigil doesn't keep me awake or give me more energy.  It just makes it possible to fight sleep when I ordinarily would be unable to.  Like, if I am driving for 15 minutes, I might feel the same amount of sleepy as I always do, but now I can just decide it is not a good idea to fall asleep while driving, and it happens.  Before, I would have to pull out all of the tricks - opening windows, turning up the radio, drinking soda, eating something...  It is an extremely subtle difference, so subtle that it is difficult to be certain there is truly a difference at all.

My doctor said this was the most accurate description he had heard of this drug's effect.

It is weird to think that I am taking a medicine with this purpose - to give me the option of whether I fall asleep or not.

"Well, I guess the Nuvigil works," she yawned.

Just about every day since I was diagnosed with IH, I have taken Nuvigil.  My doctor said it would help.  It has been the better part of a year, and I have been wondering exactly how much it is helping.

Well, I am a teacher.  It is an exhausting job, especially since I am new to teaching, and have no background in it other than my area of expertise.  When I first started, all I did was teach and sleep.  These days, I teach, do things, then sleep - more like people without narcolepsy or IH.  But I do take naps occasionally, and if I do not get enough sleep, I will still fall asleep throughout the day.  So, I was starting to really wonder what kind of difference the medicine was making.

One day, I forgot to take my Nuvigil before going to work.  Luckily, this was after I started drinking coffee.  So, throughout my day, I had 3 cups of black coffee, knowing I would be tired that day.  I figured 3 cups would be equivalent to the meds (in a very non-scientific way).  So, I got home from work that day, and I fell asleep on the couch napping for a couple of hours.  That was fine, I figured it was par for the course having missed my dose.  Here is where I realized how much different my life had been before I started on the medicine.

Only a couple of hours after my long nap, while fully dressed still in my work clothes, I fell asleep for the night - it was 8:30 pm.  I couldn't even wake myself up long enough to change for bed.  Then when it was time to get up for work the next day, I had a very hard time (which is still typical).

I felt as though I had completely missed a day.  It was a little bit of a shock to remember what my life had been like before my diagnosis.  But one thing I realized is that I am very thankful drugs like this exist!  Even though I am still tired and I still nap a whole lot, the meds are actually helping.  Subtle, but life-changing!

Attribution Error

I think I understand why my doctor doesn't want me on stimulants.  Now, I'm no doctor, but I did study psychology in my undergrad.  What am I qualified to do?  Nothing, but it was fun.  Anyway, I always remembered reading in my studies about the attribution error (I'm pretty sure that's what it was called - correct me if I'm wrong).

Basically, here's the idea: if you give someone a stimulant, and tell them that you're giving them a stimulant, when they feel their heart racing, they will say, "the stimulant you gave me is making my heart race."  But if you give them a stimulant without telling them that's what you're doing, they may mistakenly attribute their racing heart for anxiety, anger, or some other emotion, when really all that is happening is that they've been given a drug that alters heart rate.  They will then look for the reason that they are experiencing the emotion, and blame it on whatever they decide is the cause.

I have been wondering (in my super-unqualified mind) whether I sometimes experience this with caffeine.  Sometimes I will consume caffeine in some way and later I will be very nervous about something - more than usual.

This morning I experienced this in a fun way.  I was exhausted, so I chugged a soda.  A while later I found myself thinking, "Man!  I'm really excited for the nap I will be taking this afternoon!"  This was likely a strange combination of the caffeine and the exhaustion.  But I really felt excited!  I figured the excitement must be about what was on my mind, which - of course - was the nap I planned to take later.

The nap was excellent, by the way!

Coffee and me

When I was little, someone told me, "coffee stunts your growth." Since my entire goal in life was to become taller than my oldest sister, I decided that I was not going to drink coffee until I was certain I was done growing.

I finally decided I was done growing (wound up the second-tallest in my family) I was in college. By then, my lack of coffee intake had become a novelty. Whenever I said, "I've never had a cup of coffee," people were stunned. I liked the attention, so I kept up my coffee-free streak.

This became more and more difficult as my narcolepsy (officially idiopathic hypersomnia) became more obvious.

With increasing my Nuvigil, my sleep doctor's persistent reluctance to put me on stimulants, and my sudden weight-gain due to a dramatic increase in soda intake, together my doctor and I decided it was time for me to start drinking coffee.

I started a couple of weeks ago. It is quite fun! When I have that much more caffeine coursing through my brain, I get more animated. The drawback seems to be that I also get more frustrated. So far, so good, though. Maybe I'll keep you posted on my coffee antics.

Official disclaimer...

I am not a doctor. Any advice or suggestions are merely my personal opinion. Always consult a medical doctor if you are concerned or have questions.

If you ask me about Narcolepsy drugs, I might give my opinion. Or I might consider your comments to be spam - sorry if they are not, I am cautious with those.

For better advice, please go to the Narcolepsy Network forum.

The purpose of this blog is to tell my own personal story. Advice on this is really not my thing - especially since I am new to all of this.

You know you have Narcolepsy when...

...every story your boyfriend tells ends with, "she fell asleep and missed the rest."

...people who barely know you are aware of your sleeping habits.

...you're seriously considering buying that helicopter alarm clock for yourself for Christmas.

Sleep well!