VDog is right, It’s so worth it…

VDog blogs over at VDog Blogs and Room 704 – PS: She’s TOTES (totally, yes!) awesome, and so are all of her girls over at Room 704!  Go check them out, you won’t regret it… pinky swear!

Anyways, she wrote a good post last week about having a sleep study and being diagnosed with sleep apnea and using a CPAP machine and how it’s changing her life, etc.  Which, I know I’ve kind of written about it before, but I don’t know how detailed I got and I don’t feel like surfing back into my archives right now.

What I do know though, is that I second what V has said with it all.  In February of this year I had my routine physical with my doctor and told her my symptoms and how I’m always tired and I can’t function during the day without feeling like my head weighs 800 pounds and that I can’t stand still feeling tired when I get up in the morning, and falling asleep the second I lay down and how I toss and turn all night and don’t get a good nights sleep, AND I snored.  I HATE the thought of snoring; I know how bad it drives your bed partner crazy… my dad snores like a banchee as does my grandpa – I swear, it’s in our blood… but I know how bad my dad and grandpa’s snoring affects me (kind of like a nails on chalkboard pet peeve), and so I only felt it was fair to discuss some of these symptoms with my doctor.  I hated getting elbowed in the side or hear the stern, “KRYSTLE” in the middle of the night anyways… then I felt stupid and dumb because, “girls shouldn’t snore” or so that’s what I thought.  Hell I’ve always snored, but I haven’t thought much about it until I got in a relationship and had to sleep next to someone every night. 

SO! When I told my doctor all of these symptoms, the first thing she said was let’s complete this epworth sleepiness scale score sheet and fill out this, this and this and let’s see what you come up with.  And, so I did and holy hannah batman, my score was a 13… which obviously could have been much worse, however normal average score is 0-9 and anything over 10 recommendations a sleep disorder workup.  My doctor gave me my referral sheet, and I scheduled my over night sleep study and that was that.

I saddled up in a cozy little room, all nervous like because, “HAI! How am I going to sleep with all these THINGS on my body and face?” …we finally got me all hooked up, electrodes here, gooey crap in my hair there, nostril things here, stickies on my chest there, tape on right eye brow, band across my chest with heart monitor there, sticky thingy on my leg here, and she then she took all 8,000 cords safely wrapped them all up so I wouldn’t strangle myself in the night; plugged them in and finally by 11pm I fell asleep.  I tossed and turned the entire night, finally the door creeked open and the sleep technician slowly walked in, “Krystle, it’s morning time!  Time to get up!” and I stretched and did the “uhhh” moan and groan and my wraspy voice muttered an, “Okkkkay”.  Then she said, “But I know you didn’t sleep very well last night since you got to bed so late due to our technical problems, do you want me to come back in an hour?” and I was all, “Yeah, yes please… blah blah blah”.  I tossed and turned for the remaining 30 minutes, carefully waddling back in forth in bed because IHADTOPEE and she came in 30 minutes later and creeked in again, hallways lights illuminating my room, and I was ready and rarin’ to go.  Let’s get these things OFFA ME, I gotta PEE.  And so, we did- she said I didn’t have too many apneas, nothing that warranted the CPAP titration, however they were still concerned with my sleep scale score, and so I was then referred for a daytime (MSLT) study.  I scheduled that, and returned a week later. 

…and yes, I sent that picture of me to my husband before he went to bed.  I heard screaming coming from the vicinity of our house; still not sure if it was him or not.  Every time I say the word sleep study, he kind of twitches… I think he still has nightmares.  It’s love, I know it… *evil grin*…

 

 

I completed the MSLT study about a week later which was THE LONGEST DAY EVER, and I couldn’t even relax in bed.  I slept for 30 minutes every hour and a half… I got all jazzed up with mah cordz, and arrived at the hospital at 7am, hooked up by 7:30 and snoozin’ by 7:45.  Yes, I just got up at 6:30 that morning too and I was out cold within literally 2.5 minutes of hitting my pillow.  That’s what the report said anyways… and so 30 minutes later, she creeked into my room again, “Rise and Shine!  Let’s get up and out of bed!”  Ugh, up and out of bed I got, and I had to sit in the stupid hard chair and watch the stupid stupid TV.  I brought some stuff to do, but really?  You can only do so many things when you’re stairing at the hospital walls and TV on a Tuesday morning wanting nothing but to crawl back into bed.  Eventually I completed my 5 naps, and was headed home around 5pm.  I was even served an AMAZING lunch… pffft, amazing. Disgusting.  I had my follow up with the sleep doctor and he shared with me my results. 

 

 

Doc:  Do you have any episodes of facial numbness? Any sudden loss of muscle control during something causing you much laughter or anger?
Me:  Uh, not really… I thought and thought about it and couldn’t come up with any specific situations that this occured.
Doc:  How do you feel when you get up in the morning?  Rested?
Me:  Not in the slightest.  I feel like I could sleep all day long; I wake up more tired than when I go to bed at night.
Doc:  Do you have problems during the day?
Me:  Well, you see… at work, I’m constantly tired.  If I put my head down on my desk, it would take less than 3 minutes and I can promise you I would be asleep at my desk.  Head down, zonked out and likely snoring.  I come home from work and I want to do nothing but head STRAIGHT to the couch, and stay put for the evening.  I’m physically, mentally, emotionally DRAINED.  I can’t function and do the daily things I used to do.  I can’t focus at work, I can’t do one task without wanting to go to the next.  I leave things unfinished, start projects that are way over my head, and want to sleep all hours of the day, instead.  I fear it will affect my job in the future and that I do NOT want.
Doc:  Do you ever feel like falling asleep while your driving?
Me:  Not specifically, I’m usually always feeling awake while I’m driving however on some occasions either very late at night or during the day, I’ll have moments of, “Where was I? How did I go these last 5 miles?  Did I pass any cars?”  It’s not that I pass out, obviously or am sleeping, but it’s like my mind goes to sleep mode and I just keep doing whatever I was doing.

Eventually we discussed a few more situations and symptoms and he said, “Well, I have your results.” 

“Your sleep latency was 6 minutes”, he said.  “Hmm, interesting and well, that makes sense.” I thought.  He says, “And the average person usually take at least 10-15 minutes to fall asleep.  As you can tell, you’re under the 10 minute mark, which suggests Narcolepsy.”  I nodded my head in understanding.  “And out of the 5 naps you took, you had 2 naps where you reached REM sleep.”  he said.  “A person without Narcolepsy would not reach REM sleep within those 30 minutes of brief sleeping.” he added.  “I have every reason to believe that even though you don’t have any cataplexy (which is loss of muscle, facial numbness), you have Narcolepsy.  This would explain your constant tired feeling, your diminished attention span, your tossing and turning at night, waking tired, not getting a rested sleep, etc.”  “I’m going to start you on Adderall, 20mg BID (two times a day) – one in the morning and one in the afternoon.” 

At this point, you have NO idea how badly I wanted to jump up and down like a 5 year old, hands flying in the air and say thank you thank you thank you.  I have been struggling with this constant tired feeling; no focus, lazy, always tired and irritiable and… ALL that I discussed with him as I said above, and we have never been able to find a common ground.  I went in to my doctor because I thought I had sleep apnea; never in my right mind did I think it would have led to this workup and diagnosis.  Finally, the last piece of the puzzle was placed.

So, on April 1st, 2009 I received the diagnosis of Narcolepsy, and he prescribed the Adderall and I filled it that evening and started taking it the next day.  I cannot even begin to tell you the change this has made for my life and my daily activities.  I no longer feel dead during the day, I don’t have the urge to sleep all hours of the day, I can actually go home and clean or do laundry or dishes or mow the lawn without the dreaded feeling of “sleeeeeeeeeeeeeeeep, I neeeeeeeeeeeeeeeeeed sleep.”  I don’t snore any more, I’m more rested when I sleep – I sleep a good hard sleep, I don’t dream like crazy any more and toss and turn like I’m trying out for the olympics.  Nothing.

I go to work, take my meds and within about ohhh 20-25 minutes I can feel the meds kicking in.  It’s like a huge energy burst that lasts all day long and I cannot fathom the feeling of happiness and reassurance this gives me.  I have better focus at work, I wake up rested, I have a life again and I am back to myself; my body is no longer consuming me.  I am consuming it. I won this battle, and I am determined to make that continue. 

Going to the doctor and completing those two sleep studies and receiving a diagnosis and getting the treatment I’ve been needing for SO LONG, has changed my life for the better and I cannot tell you even remotely how good it feels.

Like Victoria’s post, if you are having ANY symptoms of daytime fatigue, restless legs, consistently tired, no energy what so ever, tossing and turning, waking up gasping for breath, falling asleep soon after your head hits the pillow, sleeping at any moment of any day, etc… Please, go to the doctor.  Women don’t like to admit that they snore or think they have a sleep disorder; no one likes snoring and I was one of them.  There is help out there, there are things that you can do to make your nights sleep a good night sleep for not only you but for whomever you are sleeping with or near.  Please, go read V’s post and she says it too, receiving treatment for Sleep Apnea and having received the CPAP for treatment, is absolutely the best thing she ever did for herself.  Not only is she feeling better, but she is no longer at a severe risk of quitting breathing like she was prior to the CPAP.  When you quit breathing more than 30 times an hour, that is considered severe sleep apnea, and guess what?  You can die from that.  Narcolepsy is in the same vicinity as sleep apnea, only you fall asleep at any given time, which either could be while driving, or doing something important; and all situations regarding your sleep are precious and warrant full work up, and a diagnosis from whatever symptoms you are having.

If you ARE having these symptoms?  Please, admit it to yourself and your family and talk to your doctor.  The end result of treatment will absolutely, I promise you, change your life and you’ll be forever thankful.

I know I am.

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Here are some helpful links if you think you may have a type of sleep disorder:
1. Symptoms of Narcolepsy
2. Symptoms of Sleep Apnea
3. Epworth Sleepiness Scale Test/Score
4. Different types of Sleep Disorders
5. Additional Information and When to Get Help

Tagged as: central sleep apnea, CPAP, daytime fatigue, epworth, epworth sleep scale, fatigue, hospital, MSLT Study, Narcolepsy, obstructional sleep apnea, REM, REM sleep, restless legs, sleep, sleep apnea, sleep center, sleep disorders, Sleep Study, snoring, tired, treatment