Monday, December 24, 2012

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.

Friday, November 30, 2012

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!

The subtlety that is Narcolepsy treatment...

Next week I go back for a follow-up with my sleep doctor/neurologist. I have been on Nuvigil for a few months. About a month ago, he increased my dose. I am certainly awake more than I used to be, but I'm still always sleepy. I think it makes a difference, but the difference is very subtle.

That's kinda cool because I still feel like me, but at the same time, life is still difficult. I still feel like there aren't enough hours in the day to do everything plus sleep.

The Nuvigil also works best if I have gotten a good night's sleep the night before. If not, forget about it! I'll be out like a light!

Next step is stimulants, my doc says. We'll see!

Friday, October 26, 2012

Blogging has become much more difficult!

Well, it's been a while. Here's a mini-update:

Working hard
Still so sleepy
Gained 10 lbs (now officially overweight, I think)
Drinking lots of soda
Probably going to give up my "I've never had a cup of coffee" streak
Follow-up with sleep doctor
Increased Nuvigil
If that fails, next step is amphetamines

There ya have it! Until next time! Happy Nap-o-ween!

Friday, September 7, 2012

My best friend is getting married tomorrow!

Plus it's the first week of a new school year! I am so excited that I'm exhausted and a little nauseous. I can't wait!!!!!!

Monday, August 27, 2012

Why so sleepy?

So, after all the sleep I got this week, I had one day of running around.  The next day, I was exhausted!  I slept most of the day away - and I had taken the meds, so that makes it really weird.  These days I like to try to figure out the reasons for any unexpected sleepiness.  It helps to make it all make sense.

My best guess today is that I'm on an anti-depressant and I am not taking it as regularly as I should.  It is the type of medicine that makes you drowsy, but you get used to it.  I wonder if taking it will less regularity makes me more tired.  I suspect that may be the case.  So, every time I realize this is happening, I redouble my efforts to take it more regularly.  Only trouble is my constantly fluctuating schedule, and need to take it with food.  I guess that's a first world problem, so I am not complaining.  Just noticing.

Saturday, August 25, 2012

Sleepcation!


As you may know, I am a teacher in a high school.  In the beginning of the summer, there was a chance that I might lose my job for next year because of layoffs.  So, I made sure I had work through the summer at summer school and my second job, the post office.  For the past 2.5 weeks, I have been working more than full time hours at the post office, because the boss was on vacation.  Between that and being in a new relationship, I was exhausted!

This week, I am finally getting to enjoy my summer - now that it's almost over!  My boss is back from vacation, and summer school is a faint memory.  I have to work Wednesday & Saturday, but that's it for about a week or so.  Plus, my new love is also on vacation (he is also a teacher) but he is in Florida (I miss him terribly!).

So, What am I to do with myself?

Answer:  Sleepcation!!!

The first night I got home from the post office, I took a nap from 6 to 10, then I went to bed around 12 or so.  I slept until 11 the next morning!  Woot!  I haven't slept like that in months!  I feel so much better!  I have been taking a nap pretty much every day since, and I'm loving it!

The only drawback is that I'm an extrovert, and after 2 days of this I was lonely and bored out of my mind.  Turns out this is the week all of my friends are too busy for anything.  One is getting married in 2 weeks, one is beginning his 2nd year in the seminary, one is about to start her first year teaching...  I'm ready for my love to come home.  I dream of napping in his arms!  :)

Monday, August 20, 2012

Thanks for the comment!

When I posted about feeling drunk when I am too tired, I received a wonderful comment with a suggestion.  The suggestion was to take a brief nap, and I might feel better.

Today, I was working and I totally felt drunk/completely out of it.  I was certain I would not be safe driving home in that condition.  So, I took the advice!

I put my head down on my desk after work, and took a 15 or so minute nap.  When I woke up, I was very sleepy and a little groggy, but I did not feel so disoriented anymore!

It worked!  Thank you so much!  And keep the suggestions coming!

It's things like this that make me think I should go to the Narcolepsy Network conference in October in Ohio this year.  I didn't even know that I was unaware.

Wednesday, August 15, 2012

It's been a while...

I've been away from blogging for a while. So much has happened this summer!

I found out that in the fall I will continue my teaching job! This is wonderful news! Especially because I need health insurance - Nuvigil can be very expensive. No health insurance = no Nuvigil. No Nuvigil = excessive daytime sleepiness. Excessive daytime sleepiness = difficulty finding a job. Not a cycle I want to swirl down for a second time.

In July, I finally finished my Master's degree in Theology. If I can do that, I can do anything! That took lots of hours studying, and lots of time sleeping. Sometimes your brain learns things more deeply during sleep. Maybe we people with sleep disorders have an advantage over others mentally because of this? I'd like to see a research study dome on that!!!

And possibly most significantly, I fell in love. This is one of the most exhausting things I have done in recent memory! From the time when we had our first date and I couldn't sleep (Narcolepsy coupled with insomnia is brutal!), through our super late-night talks, to our sustained pleasurable emotions, I am tired! But the good news is that he is a wonderful man who will take good care of me when I need it.

This is the main reason that I have been away from my laptop the last few weeks. When I am done spending time with him, I'm exhausted and drained. If I am at his house, he lets me stay because it's a long drive home, and I tend to have trouble driving while sleepy.

Here's hoping that I'll get back to a good routine when the school year starts, and start back up again. Until then, happy napping!

Thursday, August 2, 2012

Sleepiness Feeling like Drunkenness

Sometimes I get so sleepy that I feel like I'm drunk.  I used to drink when I was in college, so I know what drunk feels like.  But I haven't had a drink in around 5 years (alcoholism runs in my family, I decided to preemptively strike against it).  It's a scary feeling when I'm away from my house and I start to feel like this.  I usually try to sleep where I am, but that can't always work.

So, I invented a new idea!  The nap store! (I realize the logistics would make this pretty much impossible.)  I think that in every mall they should have a store set up like a mattress store and they should rent out nap time on the beds in 30 minute increments.  They could even charge a reasonably high fee so as to avoid problem customers.  I think this could make the world a safer place.

Ok, that's all I've got!

Tuesday, July 24, 2012

Saturday, July 21, 2012

Whoa!

I passed my comprehensive exams!  I'm receiving my Master's degree in Theology!  I have been working towards this for 10 years!  Wow!

And, I now have a man in my life who is truly amazing.

I'm overwhelmed by too much goodness at once!

Time for a nap!

Thursday, July 12, 2012

Narcolepsy + Insomnia = Cranky Me

I can't sleep. In a little more than 24 hours, I'll be taking a three-hour exam to determine whether or not I receive my Master's degree. Today I did everything right, I took all my meds in good time, I didn't exercise before bed, and I didn't nap all day. I've been laying in bed for hours not sleeping. I am not happy right now.

Tuesday, July 10, 2012

Surprise Naps

For the most part, when I take Nuvigil, I can avoid naps.  Maybe I will grab an occasional nap here or there if I have not gotten enough sleep the night before.  But today I thought I'd take a really brief nap - laid down at 6:15pm and woke up at 9:15.  Bummer!

I wonder if it has anything to do with being overwhelmed.  I have a lot going on - I'm about to take a massive exam, I just started dating someone (which went really well, by the way - more details later), and my roommates are starting to be very annoyed at my messiness.  (Many people with sleep disorders are messy because they are so sleepy.  Not an excuse, just an explanation.)

Ugh!  Now I have that much less time for studying!

Wednesday, July 4, 2012

Anticipation overwhelms me. Does it overwhelm you?

(Sorry this is long...  It feels good to talk about it, but I am too tired to highlight it.  Sorry.)

I don't know if it's the same for people without sleep disorders in the narcolepsy family, but anticipation completely overwhelms me.

Ever since I was a kid, when I was really excited about something, I'd be unable to sleep or eat for days, and I'd be constantly exhausted and unfocused.  When I was in third grade, my family told me we were going to Disney World (the only thing on my bucket list at the time), and before I could even be happy I was going, I felt this overwhelming emotion that I didn't know the name of.  It was anticipation.  I had a terrible time dealing with it, and it turned into anxiety from residual effect when I returned home.  But the morning we left for Florida, a strange thing happened to me - I got "the shakes."  It hadn't occurred to me that there could have been any relation between the shakes and my sleep disorder until I saw another person post something on a narcolepsy forum and they called it "the shakes" too.

Basically, the morning that we left for Florida, our parents woke us up much earlier than normal.  We were all packed, and just needed to eat breakfast and go.  It was unusual for all of my family to be together first thing in the morning.  Everyone was running around doing last minute things, and as I tried to eat my breakfast, I was shivering uncontrollably.  I tried to make it stop, but it was completely involuntarily, and not just a small shake like when your hands aren't steady out of fear.  It was like I was shivering from the freezing cold even though I was completely warm.  When my mom noticed that I was shaking, she asked what was wrong.  The only reply I could think of was, "I'm cold."  After a few minutes of being wrapped in a blanket (in April), my mom realized this wasn't normal.  She very nearly canceled the trip because we couldn't figure out what was wrong, and it seemed like a pretty serious thing.  Once we got on our way, I guess I got distracted, and my shakes subsided.  We went on our trip as scheduled.

It didn't happen again for about another ten years.  When I was a teenager, and boys started coming into the picture, I got super "nervous."  Before I had my first kiss, there was a guy who showed some interest in me for what seemed to me to be a very prolonged time.  As we interacted more and more, the "nervousness" grew.  Maybe a couple weeks of this (and no official confirmation that the boy liked me) the shakes began.  It was pretty intense, I would shake at home by myself, and even when I was around him.  I'm sure I tried to play it off like I was cold, but no one bought it.  Eventually that guy decided he liked someone else, and I got over it.  But I always thought what I was feeling was "nervousness."  It wasn't quite as bad for my actual first kiss, though, because the build-up for that was only a couple of hours.  I do think I shook a little, though.

Now that I've been learning about narcolepsy, I'm starting to realize that this is anticipation.  That, laughter and grief seem to be the biggest causes of cataplexy in those who have narcolepsy with cataplexy.  (Cataplexy is when your muscles stop working and you "pass out" usually due to an emotional response.)  So now I am starting to wonder if the connection between intense anticipation and "the shakes" are somehow stemming from my sleep disorder.  Or is it just the case that anyone who experiences too much anticipation will shake uncontrollably.

Another reason this is on my mind is because this is the first time I am feeling intense anticipation since my diagnosis.  The other day, a guy who I am very interested in indicated that he might be interested in pursuing a relationship with me.  We have been flirting back and forth a ton, and he is a major tease (not revealing his feelings, and purposely trying to keep me guessing).  In some ways I enjoy this game because of the adrenaline rush I constantly have, but I am starting to wonder if I am headed toward "the shakes."  He's got me feeling like a teenage girl again (I'm 32).  The thing is, that I am aware that his games are causing a serious increase in my anticipation.  While I do very much enjoy the rush, I may not be able to tolerate it much longer.

The last relationship I was in was very straight-forward.  There were no games in the beginning - I knew exactly what we were doing and where we were headed.  The relationship lasted a little over a year and was very much characterized by flat emotions.  This was actually really good for me - exactly what I needed.  Before that (about 3 years ago), I decided I did not want the drama of all the intense emotions I brought with me everywhere anymore.  I was a drama queen and I was ready to change my life.  Now I'm relatively drama-free, and I think that is largely due to the quiet emotional state I have been enduring for some time.

So, the question is, what do I do now?  I am uncertain about getting involved with someone who can get me this riled up this easily.  Should I inform him that I have something similar to narcolepsy and that anticipation kills me?  Part of the problem is that I had decided not to date for the next two weeks until after I took the comprehensive exam for my Master's degree (I didn't think this would be a problem, as I have been on exactly one date since February).  So I have 2 weeks left of intensifying anticipation during which I need to be cramming information into my head like there is no tomorrow?  Maybe I should just get together with this guy, and kiss him once and for all!  End the initial anticipation!  But usually the whole beginning of a relationship is wrought with anticipation of what may be next.  I'm screwed!

Monday, July 2, 2012

So tired...

Everything makes me tired...  Just sayin'.

-Eating
-Sleeping
-Exercising
-Working
-Driving
-Watching a video
-Emotions
-Reading
-Having a conversation
-Etc...

I keep thinking, "I'll feel better after I _____."  Nope.  Just more sleepy.  Ah well.  I'll get it figured out.

Meantime, the other day I had a weird dream about a zombie cat.  Very odd!

Friday, June 29, 2012

The Battle that is Caffeine

I'm too tired to write much. Caffeine can be of some use to people with narcolepsy (pwn) but it largely turns out to be more of a burden than anything else. Since it is summer, I have not sustained a good sleep schedule. All week I have been taking long naps in the afternoon. Yesterday I wasn't going to be home, so I couldn't nap. That idea turned into the idea to have 3 sodas at dinner. That turned into a 2am bed time. Now I'm exhausted, and I have a headache from the caffeine. I feel like I can't win today.

Tuesday, June 26, 2012

Lots going on!

This summer is my first as a teacher.  I decided to teach summer school.  Adjusting to the schedule is very difficult!

Last night I stayed up past 1am, and today I needed a 2.5 hour nap.  I need to fix this.  A good schedule and I'm all set!

But Today's good news is that I found out I will continue to teach at the same school next year!  They're doing many layoffs and it's a miracle I'll be working for another year!

Also, I am studying to take the final test for my Master's Degree, but I have no energy.  I'm not sleeping as much, but I am still tired all of the time!  Ugh!

Something scared me the other day and I noticed my knees went weak.  That's similar to cataplexy, but "normal" people can get symptoms like that in extreme circumstances too.

Monday, June 18, 2012

I'm Back... Lots to Tell!

(I'm highlighting the main themes of each section - read what you're interested in.  Stay awake if you can.)

I haven't written in a while.  There were a couple of things going on...

My sister was in town.  She loves to hang out late into the night.  I still had work even though her family was on vacation.  Bottom line - I used every free minute for sleep.

Also, last week was the last week of school.  As a teacher, that's a big deal.  It was the end of my first full year of teaching.  Considering I have IH and I'm finishing my Master's Degree, I'm pretty proud of myself.  My degree will be in Theology, so I will just say this - I didn't do it on my own.

***

But since it was the last week, it was a weird schedule.  I am beginning to realize how important sticking to a schedule is for me.  When I do that, I have enough energy to accomplish what I need, and can sleep when appropriate.  When my schedule is out of whack, I feel like I am back to square one even with the Nuvigil.

***

Meanwhile, I called my sleep doctor the other day.  I have been itchier since being on Nuvigil, and wasn't sure if that was an allergy concern.  Normally when I tell doctors that, they take me off the meds right away, declare me allergic and forbid me from ever taking it again.  I was worried, because there aren't very many options for IH treatment, so I put off telling him until I got worried about it.  He wants me to come off the Nuvigil for a week, and then try taking it again to see what happens.  I'm not sure when I could do that, because this summer is going to be chaotic to say the least (maybe I'll share that story sometime).

***

I also asked him if the Nuvigil is actually working.  I explained that I expected to have energy and be ready to get more things done that I couldn't because I have been sleeping so much.  But what I seem to be experiencing is more of what I can only describe as cortical awakeness (sorry, I was a psych major).  I am awake in the sense that I am not constantly fighting off sleep, but I am physically still exhausted.  So, most of what I've been catching up on is stuff that involves mental work, but not physical work.

His response is that there are two kinds of tiredness.  1. The kind where you fall asleep.  And 2.  The kind where you have no energy.  Nuvigil treats #1, but not #2.  So, yes, the meds are working.  He said that when I have my follow-up in a couple of months, we will discuss treatment goals and adjustment of meds.  He said he will probably increase my dose of Nuvigil.

***

Ok, last thing.  I had my first realization of sleep paralysis today (I am pretty sure)!  I was napping after work, when somehow I must have opened my eyes to see a tiny spot on the bed next to my face.  I was aware that the spot was there, but I didn't know exactly what it was.  In my imagination it was a tick - which would be really weird, because I hadn't been outside).  So, I tried to wake up and figure out for sure what it was so I could get rid of it, especially before it bit me.  But I could not wake myself up.  I couldn't even open my eyes completely to see what it was.  I continued to dream during the struggle to wake myself - of killing the bug, but still unable to wake up.  And the spot was right near my face!  Finally I managed to wake up, and look at the spot.  That was the point at which I had the longest delayed response I have ever had - I jumped up and shrieked a little.  Turned out it was just a fuzz.  But it was also the first time I was aware of having sleep paralysis.

Come to think of it, I have had things like that before.  Sometimes I need to wake up to use the restroom, but can't so I dream of it until I finally wake.  It happens most when I am sick with a stomach bug.  I will dream of going to get someone to help me, but I constantly become aware that I have still just been sleeping.  That is usually a cycle until I truely wake up.  Quite unpleasant.

Sunday, June 10, 2012

Social Life... What's That?

So, before I was diagnosed, but while I was working regular hours, I had very little social life.  All because I was sleeping.

And I thrive on being social.  I love my friends, and I really love meeting new, exciting people.  I love having adventures.  But I was too tired to do anything.  And I knew if I was tired, I might fall asleep while driving.  So, my social life quickly faded.

Now, I am able to be with my friends again.  On Saturday there was a big gathering that my friends were all attending.  Normally, Saturday is my sleep day - I work in the morning then sleep until Mass on Sunday.  I was tired, and I did take a nap, but the nap only lasted 2 hours and I was able to function completely after that.

This is not what I'm used to, but I am loving it!  I feel like I might be starting to get my life back.  (I'm a little afraid to admit it, because I'm afraid this won't last.)

Saturday, June 2, 2012

Caffeine

Today I realized that I haven't had a caffeinated beverage all week.  This is a breakthrough!

For the last few weeks I have been drinking copious amounts of soda due to an unusual occurrence of non-diet Coke in the faculty cafeteria.  Before that, I drank tea every chance I got.  This week was too hot for tea, and I don't drink coffee (maybe I'll tell that story soon).

So, I accidentally quit caffeine this week when they switched back to diet (I don't drink diet either - different story).  I did spend half the week on strong decongestants, but I seemed more tired on those days.

Maybe Nuvigil is helping.  I love those little moments when you suddenly realize your life got better right under your nose and you didn't even realize it was happening.

Wednesday, May 30, 2012

People with Narcolepsy Fall Asleep in Fun Places

Here are a few of mine:


Runners up:
-In a busy airport under some chairs
-While standing at a youth rally (and I don't have cataplexy!)
-During the Lord of the Rings movie in the theater
-On the train every day going all through Philly in rush hour
-On every one of my textbooks
-In a hammock on a crowded beach
-In my car in a parking lot
-During every Rosary I've ever prayed (only a slight exaggeration)
-On a sidewalk in freezing temps while waiting in line for concert tickets

The best one, I think:

I once fell asleep while kneeling at Mass.  For those of you who may not be Catholic, during our church service, there is sometimes a period of light music after we receive Communion.  In that brief moment I fell asleep, and woke up because one of the priests dropped a metal lid.  It was one of those 'look around to see who saw you awaken with a start' moments.

Sunday, May 27, 2012

Nuvigil plus Claritin D 24hr

It's midnight...  No sign of sleep...

Narcolepsy Humor

I found a website with a list of "You might be narcoleptic if..." jokes.  I don't get some of them because I don't have extreme symptoms or cataplexy, but here's a sample and the link:

If you have memorized or carry in your wallet a list of "Why I'm Late for Work" excuses for 250 days of the year plus one for leap year.

If "NIGHT is to DAY as SLEEP is to ____" sounds like an unsolvable riddle.

If you have a clause in your will to hold your body for three days just to be sure.

If your Brita pitcher has only had a half an inch of water in it for three days because you just don't have the energy to "make" water.

If you're driving to work one day and realize that you're half way to the job you had 10 years ago, not your current job.

If your man left you for someone with a cleaner house.

If you know all the Serta Mattress sheep by first name.

If the statement "I have so much to do right now I'd better go to sleep." makes perfect sense.

If you keep a sleeping bag hidden under your desk. (or car!)

If you take a drug and experience being awake for the first time in a long time (if ever) and think that being awake is the most novel thing on this earth.

http://www.sleepwaketoronto.org/YouMightBeNarcolepticIf.txt

I wrote this one:

If your entire Pinterest board is a collection of pictures of really cool beds.

Sleepy Sunday

On Friday night I got a sore throat.  Usually that means a nasty, unbearable stuffy nose will shortly follow.  In order to bear this, I usually take a 24 hour decongestant (like Sudafed).  So, Saturday morning, that's exactly what I did.  But I decided not to take Nuvigil because I was unsure whether there would be an interaction.

Yesterday was my first day off Nuvigil since I started 2 weeks ago.  Needless to say I was very tired.  I took a 4 hour nap.  But was I tired because I skipped Nuvigil, or because I was sick?  Who knows!  All I know is that today I walked a few blocks to go to church, and I had a hard time walking back because I was absolutely exhausted (this was after 9 hours of very good sleep - an hour after waking up).

I decided to call the pharmacist and ask if there were any interactions.  He told me that a decongestant like Sudafed will intensify the effect of Nuvigil.  But I am still able to take both.  I just may be more "edgy," to use his word.  I just took the Nuvigil.  We'll see how it works!

Thursday, May 24, 2012

Tired Thursday

I've had a slightly busy week. I feel like I'm tired because I haven't had enough down time. So, I planned nap time for today when I get home from work.

What I really need to do is get this grading all finished. But that can't happen if I'm tired. I wonder what would be a good job for someone with narcolepsy...

Tuesday, May 22, 2012

Today

I'm too tired to blog.  I spent the day working, then met up with a friend to catch up.  Now I'm exhausted.  This is the point at which - in any endeavor - I give up because I am just too tired.

Trying to push through.  Not convinced Nuvigil is doing anything at all.

Saturday, May 19, 2012

First Nap on Nuvigil

I'm a little disappointed.  Today after work, I fell asleep.  I slept from 3pm to midnight.  How many hours is that?  Nine.  Saturday is gone.  More than most people's full night's sleep as a nap.  Alright, so I'm a lot disappointed.

Maybe Nuvigil isn't working.  I think I'll give it another (less chaotic) week.

Wednesday, May 16, 2012

Well, that was a weird night!

One of those issues you don't expect to come up...

Last night I was driving my sister home (she lives about 45 minutes away from me).  Suddenly a nasty thunderstorm broke out - so bad we could not make it all the way to her apartment.  Because of severe flash flooding, I had to find higher ground and stop.  It was a little frightening!

After about an hour, the rain subsided, and we were uncertain whether we could reach her apartment yet, so we proceeded with caution.  Around 1:30am, we finally made it.  Well, then I had a choice - do I try to drive home so late at night and with potential flooding in my way, or do I spend the night at my sister's on her leaky inflatable bed?

I decided that because of the narcolepsy I would stay put.  It is always a little more dangerous to drive when you have narcolepsy, but most especially when you are tired.  Better not to risk it.

But here was the next problem - I had to be at work (an hour away from either my sister's or my place) at 7:30am.  Given that it was 2am by the time we settled in, and I would have to get up by 5:30am, that would only leave me with 3.5 hours of sleep (I'm sure sleep time math is something people with narcolepsy do frequently) on a bed that couldn't support me.  Well, 3.5 hours is not enough to functionally teach on, and not enough that I really ought to be driving.

So, now I have to call out of work because I got to bed late.  That sounds like such a poor excuse!  I never miss work unless I have no other choice.  I have worked through some pretty powerful upper respiratory infections.  I wonder how my boss will react when she finds out...  I wonder if I should tell the truth...  I wonder if I should say anything at all...

Maybe I should put a sleep emergency kit in my car - camping mat or inflatable bed, pillow, sleeping bag,  toothbrush, toothpaste, granola bar, one of each medication I need, a change of clothes - work and play, shampoo, soap, and a sponge/puff/rag.

I took the meds, but I'm certainly tired.  Tried to nap, but couldn't.  Bed time will be reasonable tonight, God willing.

Monday, May 14, 2012

First Day at Work on Nuvigil

Well, I'm tired now, but I did well during the day.  Nuvigil is only supposed to last about 8 hours, and it was around hour 7 that I felt like falling asleep.

I'm a little more wound up than usual, but that could just be my hyper-vigilance from starting a new drug.

Sunday, May 13, 2012

First Awake Weekend

Well, I think it's safe to say that this was the first weekend in years that I stayed awake all day both Saturday and Sunday (unless I was working or otherwise absolutely obligated).  It actually feels like this has been a vacation - so much longer than normal weekends!

So, I certainly didn't freak out.  This is not like a concentrated shot of caffeine.  Today I was even tired.  As a matter of fact, I was a little disappointed by that.  It's like when I started on anti-depressants and was upset when I wasn't emotionally numb.  I was up until 2am yesterday spending time with friends.  I felt like a kid again!  It makes sense to be a little tired today, I guess.

But I am always leery at the beginning of a prescribed a medication.  I easily succumb to the placebo effect.  The mere hope that things will get better makes me feel better.  We'll see, I guess.

Answers to the previously posted questions...

-Is sleepwalking related to narcolepsy?  Sleepwalking is one of many conditions that involve being partially awake and partially asleep.  It is not simply related to narcolepsy.

-Can I develop cataplexy?  Sleep paralysis?  I am 32 now.  At this age, my doctor does not expect me to develop new symptoms or experience worsening of my current symptoms.  If I was younger, that would be more of a possibility.


-Is my bad memory related?  Not directly.  When testing people with narcolepsy (often referred to as PWN) test about the same as those without.  However, since it causes drowsiness, it can cause a lack of focus and attention.


-Everyone on the internet says the 15 minute naps help with narcolepsy.  Why do I need 3-4 hour naps?  This is one indication that it may be Idiopathic Hypersomnia and not Narcolepsy.  However, every one is different.


-Are there any good resources on narcolepsy without cataplexy?  Any awareness groups?  Not specifically for N w/o C, or Idiopathic Hypersomnia, but Narcolepsy Network is a great support for people with sleep disorders, especially related to these.


-How does my sleep cycle compare to normal?  Mine is normal.


-Will my driver's license be affected?  No, not in PA.


-When I laugh really hard, my knees do get weak.  Is that cataplexy?  Everyone I asked says they have the same thing.  It could be either normal or minor cataplexy.  Since the two overlap, there is no real way to tell.


-Are you sure I don't have MS? (I have a history of that in my family.)  Upon performing standard neurological tests during my first visit, my doctor saw no indications of MS.  :)

Saturday, May 12, 2012

This is very cool!

http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html

It explains a whole lot!  Listen to them all, if you can.

And this article is great too!

http://www.nytimes.com/ref/health/healthguide/esn-narcolepsy-ess.html

Apparently they only just discovered the cause of Narcolepsy in 2000.  Wow!

Today I Start Nuvigil

(If you generally fall asleep while reading, I've highlighted the most important parts so you may skip the details.  I do this with my longer posts.)

I took my first Nuvigil pill about 45 minutes ago.  It's supposed to take an hour to kick in.

I wonder what it will be like.  My doctor said amphetamines get your heart racing, and make you sweat.  Nuvigil is not an amphetamine, but apparently is somehow similar.  I have a tendency to be anxious.  I wonder if I will freak out.  Apparently every person has a different experience.

I am also the type of person to avoid looking at the side effect information, because I always think I have the side effects.  There is a great website (http://www.narcolepsynetwork.org/) with a forum.  I am a fan of forums, but it seems like they are going out of style.  The people who participate in the forum are others suffering from sleep disorders and we all help each other out.  Anyway, they talk a lot about how Nuvigil affects them, but I refuse to read those threads.  I want to find out how it truly affects me before I read how it affects everyone else.  That way I don't get any ideas in my head.

Other things I know about Nuvigil:


-It is a controlled substance, so be careful!  Only take it as prescribed, and never let it get into the hands of another person for any reason.

-Insurance companies give you a hard time with it.  When my doctor gave me the prescription, he said, "Go and fill this.  They will refuse to fill it, then they'll call me.  This is how it works.  Here are some samples until you are able to get it filled."  Sure enough, I went to the pharmacy and they didn't fill it.  It's Saturday, so they will call him on Monday.

-It is related to Provigil.  It's one of those deals where Provigil was approaching the time when generics could be made, so the company developed Nuvigil, which will not have a generic for a while.  They just changed it slightly, and called it a new name.  The tricky thing is that Nuvigil is cheaper than the generic form of Provigil because the other companies are pricing it less than Provigil, but haven't caught on to Nuvigil yet. My doctor says they'll catch on some day.

Friday, May 11, 2012

Nuvigil Start Day

I couldn't start Nuvigil today.  According to the paperwork that came with the medicine, it may make people even more sleepy, so you need to test it on a day when you are not going to drive.  Since I had work today (an hour commute in each direction), I couldn't try it.  Maybe tomorrow after working my part-time job.  Maybe Sunday.  For now, I nap!

Thursday, May 10, 2012

Diagnosis


Officially, I have something called idiopathic hypersomnia (a.k.a. IH).  That means narcolepsy without REM during the sleep study.  It's also called Non-REM narcolepsy.  I fell asleep 3 times during my sleep study (normal people would fall asleep maybe once).  So, something is causing me to be more tired than normal, but "Idiopathic" means that the cause can't be determined.

There are 3 possible reasons I did not have REM during my sleep study: 1. I have IH, but not narcolepsy, 2. I have narcolepsy and the SSRI that I take hides the REM symptom, or 3. I am too old for REM naps (REM naps go away with age even in people with full Narcolepsy).  I have other symptoms of both IH and Narcolepsy.  The thing that makes diagnosis difficult is that IH and narcolepsy overlap with normal sleepiness - even when cataplexy (muscle weakness) is involved.  We may never know if I have or ever had narcolepsy, because even if I come off the Lexapro, I might be just too old to get REM during naps.  But it doesn't really matter because the treatment is the same.

I will be starting Nuvigil tomorrow morning.  It is not an amphetamine, but it is a "wakefulness promoting agent."  I'm pretty sure that means it is not a stimulant, but it should keep me awake.

I do not have apnea or restless leg syndrome.  In other words, nothing is stopping me from sleeping well during the night.

So, there you have it.  Ok, I'm tired.  Time for a nap.

Tuesday, May 8, 2012

Appointment

The sleep center wants me to come in to discuss the results.  No answers over the phone.  I was given two choices: two days from now or June 22nd!  I re-arranged my schedule to accommodate the sooner one.

Here are a few questions I want to ask him when I have my appointment (I wonder if he'll give me enough time to ask them all):

-Is sleepwalking related to narcolepsy?
-Can I develop cataplexy?  Sleep paralysis?
-Is my bad memory related?
-Everyone on the internet says the 15 minute naps help with narcolepsy.  Why do I need 3-4 hour naps?
-Are there any good resources on narcolepsy without cataplexy?  Any awareness groups?
-How does my sleep cycle compare to normal?
-Will my driver's license be affected?
-When I laugh really hard, my knees do get weak.  Is that cataplexy?  Everyone I asked says they have the same thing.
-Are you sure I don't have MS? (I have a history of that in my family.)


If this is not narcolepsy, I'll either have to re-name my blog or quit altogether.  We'll see on Thursday, I guess.

Sunday, May 6, 2012

Calling my Neurologist Tomorrow...

When I went for my sleep study, the tech told me to call the doctor if I hadn't heard the results by Monday - that's tomorrow.

I'm nervous.  I honestly don't know what I want to hear.

I wonder if I'll be able to sleep.  Is that irony?  I've always had trouble figuring out irony.

I wonder if they'll tell me the results tomorrow, or if they'll make me come in for an appointment.  When my little sister was researching Narcolepsy (after she heard I could have it), she realized her husband shows signs of apnea.  She's having him get a sleep study.  They told her that each study generates 1,000 pages of data.  That sounds like a lot, so I guess that's why it takes a while.

Waiting is hard.  Especially the closer the phone call gets.  It would have been better to get surprised early.

Tuesday, May 1, 2012

Done my Sleep Study

I was too groggy to write after my fourth nap to write about it.  But I'm done and home now, with paste all in my hair.  Surprisingly, I'm tired, and feel like I need a nap.

That was a difficult study but the hardest part will be waiting for a diagnosis...

Hopefully you're reading this after I post the answer.  Then it won't be as suspenseful.

Third Nap

Third nap of my sleep study went smoothly.  I am feeling better about the process now.

I could be in the dreaded 6th period lunch right now.  (Did I mention I'm a teacher?)  This is actually better than that.  :)

Feeling groggy, though.

Second Nap

I think I might have slept that time!  Yes!  Thank you Breathe Right Nose Strips!  (I'm a little stuffy today.)

Bring on Nap #3!

First Nap

Couldn't sleep.  :(

My First Sleep Study

I'm sitting here in a chair looking at the hospital bed that I spent the night in - which I am not allowed to get back into until my first scheduled nap.  It's taunting me.

Last night, I had a sleep study to rule out apnea (I think I passed), today I have to take five naps to determine if I have narcolepsy.

Last night was rough for me.  The combination of the stress plus a couple of other factors (most are unrelated to the sleep study) gave me a really bad headache in the middle of the night.  And I could only take acetaminophen (I would normally take ibuprofen, but I have erosion in my stomach - also unrelated to the sleep study).  If it wasn't for the headache, I would have been okay.

More later, I guess.

Wednesday, April 25, 2012

Lite Narcolepsy Humor...

You might be narcoleptic if...

-You've heard the phrase, "Wake up, it's time for bed."

-You need to take a nap before having enough energy to get ready for bed.

(Ok, I'm sleepy, that's all I can do.)

Sunday, April 8, 2012

Narcolepsy doesn't make you fall asleep at random times...

(If you generally fall asleep while reading, I've highlighted the most important parts so you may skip the details.)


I have been tired since I was born. I took naps after most school days all through high school. I definitely am a good sleeper, I fall asleep quickly, sleep deeply, and stay asleep through the night. These days, I come home from work at 4pm, take a "nap" that lasts until 9:30pm. I wake up, get ready for bed, fall asleep at 10:30pm, then have a hard time getting up at 6:15am. I finally decided that this is not normal, so I went to my doctor.

He referred me to a sleep specialist. Two days ago, I went for my first appointment. I described my symptoms, he asked me strange questions, like, "Do your knees go weak when you laugh?" I expected him to tell me I had sleep apnea, set me up with a mask, and send me on my way. But to my shock, he said he is pretty certain I have narcolepsy! I always thought that people with narcolepsy always passed out at random times. I had no idea that there was a thing called cataplexy, and someone with narcolepsy could have it without cataplexy. If I had known that, I could have gotten this taken care of sooner!

Cataplexy is what causes the 'passing out' episodes that narcolepsy is so famous for. It basically means that when emotions are high, muscle control is low. The higher the emotion, the lower the control.

But I don't have that. All I have is extreme tiredness regardless of how well I sleep, or how much. I can fall asleep anywhere at any time as long as I sit quietly without engaging in any activity. Sometimes, if I'm sitting still and not engaged, I find sleepiness to be so incredibly powerful that I can barely resist sleep. I have developed little tricks to keep myself awake when I really need to be. I play a game on my phone, or eat/drink something stimulating - chocolate, anything carbonated, caffeine is a plus, start to draw or write about something I'm passionate about...

I think it is important for people to know that this exists for one major reason: falling asleep while driving.

I currently have a commute of one hour and fifteen minutes (if traffic cooperates - in the worst case, it has taken me three hours). I have always had long commutes to work, because I have rarely found a job close to home. I can't move closer to the job because I have a mortgage that I'm upside-down on ($15,000 - $30,000 which is just a paper loss as long as I stay). My friends all live far from me, and I often drive to go see them, though I have been doing that less lately. I currently choose to stay home and sleep rather than go spend time with people.

I do have a tendency to feel this strong sleepiness while driving, and it terrifies me. Honestly, it should terrify me. I may have a disorder that could cause me to fall asleep against my will. This could be deadly, not just for me, but for other innocent victims of my sleepiness. And the worst part is that apparently, narcoleptics who are under treatment can be safer drivers than the average person.

I am currently 32 years old. I probably could have been diagnosed with narcolepsy at 10. Why wasn't I? Most people (myself included) just thought I was lazy. My parents were pleased, because I was their "best sleeper." When I was a teenager, everyone said, "Teenagers need more sleep." When I was in college, people just thought I was staying up too late (which I definitely was sometimes, but not every night). After college, I got irregular jobs with unusually late and short hours, so I could sleep in. Also, in those jobs, I could change pace whenever I felt tired, which I did without ever realizing I was doing it. Finally, I started teaching and the symptoms got much worse. Still, everyone thinks I'm just lazy. What if I'm not?

So, all these years, it never occurred to anyone that I might be narcoleptic. Part of the reason is that no one knows that you can have narcolepsy without cataplexy. Everyone thinks that you only have narcolepsy of you fall asleep at random times without warning. Some even think you fall asleep without even feeling tired. People need to know that narcolepsy without cataplexy exists! How many lives could we save from people falling asleep at the wheel? What if it happened to me? What if I died falling asleep while driving, never knowing I could have a treatable condition that causes this? Are others dying because they don't know?

Please help me get the word out! I will keep you posted on my progress towards a diagnosis and beyond. Thanks for listening.