Narcolepsy is a Neurological disorder that affects sleep, it is Not a sleep disorder! It took years to get that across to both patients and medical professionals, please don’t go around saying it’s a sleep disorder as if we would just take naps we’d be fine!

This is the current definition of Narcolepsy with a stupid example at the end. I just typed definition of Narcolepsy and this is what popped up first, this is the kind of thing we PWN (Persons With Narcolepsy) have to fight to change every day:

Narcolepsy: A neurological disorder that is marked by the recurrent, sudden, uncontrollable compulsion to sleep. Narcolepsy is often associated with cataplexy (a sudden loss of muscle tone and paralysis of voluntary muscles associated with a strong emotion), sleep paralysis (immobility of the body that occurs in the transition from sleep to wakefulness), hypnagogic hallucinations (presleep dreams), and automatic behaviors (such as doing something ‘automatically’ and not remembering afterward how one did it). The causes of narcolepsy are unknown.

Narcolepsy is not a fatal disorder in itself, but it can lead to fatalities. For example, affected persons may fall asleep while driving. Also known as excessive daytime sleepiness, hypnolepsy, sleeping disease, paroxysmal sleep, and Gelineau syndrome.

The fact is that those with Narcolepsy usually are much better at gauging when they’re tired or sleepy and pull over for a short nap, those without “normies” usually think that they can make it five minutes more, continue driving and get into accidents because of it.

Another thing we’re fighting against is the ones that say it’s a sleep disorder, even the Mayo clinic’s definition here says that. PWN and many Neurologists are trying to get these definitions to change it to say it’s a Neurological disorder that causes an often uncontrollable need to sleep. For a more accurate definition and description, without stupid remarks read this:

Here is the definition from Wikipedia, some folks don’t like Wikipedia because it’s done by “lay people” but I find it to be very accurate a lot of the time:

~~Narcolepsy /ˈnɑrkəˌlɛpsi/, also known as hypnolepsy, is a chronic neurological disorder caused by autoimmune destruction of hypocretin-producing neurons[1] inhibiting the brain’s ability to regulate sleep-wake cycles normally.[2]

People with narcolepsy experience frequent excessive daytime sleepiness, comparable to how non-narcoleptics feel after 24 to 48 hours of sleep deprivation,[3] as well as disturbed nocturnal sleep which often is confused with insomnia.

Narcoleptics generally experience the REM stage of sleep within 5 minutes of falling asleep, while non-narcoleptics do not experience REM in the first hour or so of a sleep cycle[4] until after a period of slow-wave sleep unless they are significantly sleep deprived.[5]

Another common symptom of narcolepsy is cataplexy, a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically (though not necessarily) triggered by emotions such as laughing, crying, terror, etc.[6] affecting roughly 70% of people who have narcolepsy.[7]

The term narcolepsy derives from the French word narcolepsie created by the French physician Jean-Baptiste-Édouard Gélineau by combining the Greek νάρκη (narkē, “numbness” or “stupor”),[8][9] and λῆψις (lepsis), “attack” or “seizure”.[10]

The simple version of all this is, we have a set of symptoms that happen in all of us. Those symptoms are: EDS, Excessive Daytime SleepinessCataplexy (with it’s own very confusing subset of symptoms).

Hallucinations which include but aren’t limited to Hypnogogic  which are as you are falling asleep and Hypnopompic which are as you are waking up, these hallucinations can include all the senses, touch, taste, smell, vision and hearing.

Sleep Paralysis, Microsleeps, Confusion, Social Anxiety, Anxiety, Panic attacks, Dreaming while you are awake, which occurs both with and without sleep paralysis. REM Behavior disorders, circadian rhythm disorders, paroxysmal sleep, Night Terrors, myoclonus (twitches and jerks while falling asleep) and last but not least, Orgasmolepsy.

There are other symptoms which pop up now and then but this should give you an idea of what to look for in both adults and children, I will be filling in more information as I get time such as what to do to get diagnosed and treatments that are available. Many of these symptoms are the same as people with Idiopathic Hypersomnia, except they don’t have Cataplexy.

There are some images that I will post links to which some find helpful that explain the parts of the brain that are affected. The first shows the location of the thalamus which links the brain to the endocrine system

The next is the Amygdala, the part of the brain that controls the difference in sexes: Then there is the Basil Gnglia, the part of the brain that is still left over from when we may have evolved from lizards:

Then, once you believe you have symptoms of Narcolepsy what should you do? Your first step will be to tell a doctor, most insurance plans want you to go to a GP, general practitioner, or FP, Family Practitioner first. Then you tell that doctor your symptoms and hopefully they understand and say you could have symptoms related to Narcolepsy.

If that doctor says something like sending you to see a psychiatrist, pulmonologist or anything other than a sleep specialist or neurologist, maybe you can mutter something like you’ve heard that those doctors aren’t as good as neurologists at figuring out what’s wrong and if that doesn’t work you can straight out tell them you want to see a neurologist.

Before you go to these tests your neurologist or ordering doctor should tell you to stop all antidepressants for 10 days and all stimulants for 3 days. Check with them to make sure and if they don’t tell you this ask them why. Not being off of certain medications can invalidate the tests!

The tests used to determine you have narcolepsy include the polysomnogram (PSG), multiple sleep latency test (MSLT), Maintenance of Wakefulness Test (MWT) and more rarely a lumbar puncture (LP) to test for hypocretin (Orexin) around your spinal cord.

You should always get a copy to keep of your sleep study and make sure it includes the print out of your brain waves that tests for cataplexy. I ask people all the time if they got their copy and if it includes the brain waves, the answer I always get is, what brain waves?

There is no test that is 100% accurate 100% of the time. If you get five sleep studies done and one of them is positive then you have narcolepsy.

Birthday Cake Beatdown

I’m in for a challenge tomorrow. I’m going into it with a positive attitude even though I know my willpower will be tested. When it comes time for the showdown, I hope I’m the one to come out on top.

That’s right…..its that time again-time for another birthday cookout. It’s for the son of some friends and I already know just how much fantastic food will be involved.

The words “taco party” usually bring to my mind images of the perfect taco salad, and it’s already making me hungry! My version of the perfect taco salad starts with a sturdy bed of tortilla chips or crunched up taco shells, followed by a heaping mound of seasoned meat, loads of lettuce, tomato, sour cream and a massive wad of shredded cheese.

Just a mountain of meaty, cheesy, gooey goodness right there in a bowl (better to contain the mound). And let’s not forget the birthday cake in all its sugary goodness. In the past I would have indulged without a moment’s hesitation. Not only would I have indulged, I wouldn’t have even entertained the thought of how many calories it contained or how long I’d have to spend on the treadmill to work them off. Today it’s a whole different ballgame.

Now if I were at my own house, in my own surroundings I think it would be easier. I did pretty well at the last cookout the hubby and I had at our place, after all. The thing that gets me is when I’m out in the wild around friends and surrounded by calorie laden foods that just look and smell so wonderful.

I don’t know why it is, but my guard just drops and before I know it I’ve consumed far too many calories to count. Maybe it’s the element of seeing everyone around me indulging and wanting to be part of the goings on. Maybe it’s the comments saying, “one isn’t going to kill ya”, or not wanting anyone to bring attention to the fact that I’m not eating and pushing me to.

Whatever it is I need to be vigilant tomorrow.

I’ve done well all week. I’ve worked out hard and kept my calories down. I’m saving my weekly weigh in for tomorrow morning. That way if I lose weight, I’ll be loathe to mess it up by filling up with junk, and if I don’t lose weight I’ll know I need to work extra hard to move the scale. Either way it’s a win/win situation from a motivational standpoint (uh, well, kind of.).

The friends having this shindig tomorrow can cook too-Lord help me! It wouldn’t be so hard if they didn’t make such awesome fare. Okay I need to come up with a plan of attack before tomorrow. Maybe a bottle of Listerine in my purse? I don’t know about you but I just have no interest in eating after rinsing with that stuff! It might help stave off a moment of weakness.

I know I’ve mentioned as one of the tools that has really helped me with the weight loss. Here’s another site to check out- . It’s about a guy who has lost 144 lbs in the last year by watching calories and getting some exercise. No extreme diets or procedures or anything. It’s really interesting and takes you from his Day 1 up through today.

I’m going to stay strong tomorrow. I’m not going to binge on sugar because I’m sleepy and my stimulants aren’t working. I’m going to consider how long I’ll have to rot on the treadmill before I indulge. 4 weeks and counting until vacation…..just 4 weeks!!!!!

Wish me luck…I’m going to need it.

And Now for The Ugly Truth…

Okay…time to fess up I guess. I’ve been avoiding this update but it has to be done. I had such good intentions going into this last weekend and I really thought that fact and sheer willpower would sail me through to Monday. Eh….not so much.

I set my loudest alarm for the usual time of my early morning workouts-4:15am. While my alarm is in perfect working order, apparently I was not that morning but made sure the snooze bar worked correctly.

Trust me, it did.

After I finally rolled out of my rollaway bed I started off to tackle the million errands I had to run, which should have been a good thing except that I forgot to eat breakfast. I honestly meant to, but between the kids and the rushing around and all the morning chaos I just blanked it right out.

I definitely know better than to skip breakfast, but since I had forgotten, I just thought it would mean a few more calories added to my daily budget later in the day. Did I mention that when I jumped on the scale that morning there was no change? AT ALL?? I was so extremely frustrated. I’d been working my tail off, still none of my tail was coming off! Fast forward a few hours……

So we get to the birthday party and as promised, the dreaded taco bar fiesta. I don’t know if it was the fact that I was really hungry by that time, or the fact that I was really struggling not to fall asleep or just peer pressure, but I put a hurt on a burrito that just wasn’t right.

It was a big, drippy, meaty, cheesy, sour cream filled Mexican gut bomb with tomato and lettuce being the only real redeeming qualities. It was so good…so help me. I enjoyed every single bite….I figured if I was going down with the ship I might as well enjoy the ride. And enjoy it I did. I rounded out the ordeal with a slice of birthday cake and a scoop of mint chocolate chip ice cream. Yup, and my ship just kept on sinking…..

Now honestly I wasn’t drowning my sorrows in the fact that I hadn’t lost any weight for the last two weeks. My thought was that maybe I’ve been too restrictive with the calories and now my body was holding on to everything with both hands.

I thought that maybe if I added a few more daily calories I could snap out of the rut and continue on my merry weight losing way. While I didn’t eat a lot, the things I did eat were way too calorie dense and I’m reasonably sure that I’ve shot myself in the foot for my next trip to the scale….grrr. Sunday was more of the same, but my struggles that day stemmed more from the fact that I had a super tough Narco day.

My meds weren’t working at all and I even dozed off during church. Thank goodness we had some special programming and I didn’t have to be up in the choir section in front of everyone.

I just closed my eyes for a second, laid my head on my husbands shoulder and that was all she wrote. I always have a horrible time eating right when I have a Narco day like that…..I just find myself too tired to care. (hey Jenji-I HAVE actually been delegating, just for the record ;-))

So now I’m back on the horse. I’ve also decided to switch up the workout routine just in case I’m getting too used to treadmilling-they say changing up your workout can break you out of a plateau. This morning I had my first session of Wii boxing……wow is all I can say.

I have no idea how many calories I might have burned, but let me tell you-I was sweating and huffing and jumping around. It was crazy but so much fun! My shoulders and abs and arms are killing me at the moment, but it’s a good sort of pain. I’m hoping I can maybe talk my hubby into trying it with me….seriously, ya’ll need to try it.

I still have about 3-1/2 weeks until the fam gets here for vacation….I’m really hoping I can break this plateau by then! Gah!

You Win Some, You Lose Some

I had every intention of posting over the long holiday weekend, but you know what they say about good intentions.  I don’t know about everyone else but it rained Friday through Monday here, meaning not much yard work got finished.

On the upside, I did get an amazing number of things crossed off my to-do list….including naps here and there.  The hubby and I were just in sync and in production mode, which doesn’t happen often.  Usually one of us is ready to work and the other is ready for nap, but not this last weekend thankfully.

Okay-good news first….I finally broke through my plateau!


Saturday’s weigh-in showed a 3lb loss for a grand total of 25lbs to date. I’m just going to come out and say right now that while I’m not trying to make excuses, the hectic schedule I had this weekend made it so easy to not pay much attention to what I was eating.

Most of our family meals were grab and go’s, or grab while on the go type situations, certainly not ideal for what I’m trying to accomplish.  Homemade chicken chalupas, grilled cheddarwurst, subs with plenty of ham and melted Swiss…..yup, I caved.  Big time.  Not only did I cave, but due to an unfortunate mini-blind incident courtesy of my five year old son, my treadmill was out of commission all weekend.  No, not ideal…not ideal at all.

But its back on the horse….the important thing is to not let this little hiccup sink my ship.  Just so you don’t leave thinking the weekend was an overall wash, let me tell you that a ton of stuff did get accomplished-we used our best leaf blower to rake up and bagged about a dozen bags of leaves before getting rained out, which led to the construction of an impromptu worm farm for one of my sons who was busy scooping up night crawlers from under the leaf piles I was removing.

On top of that, I built a lightbox for photographing the jewelry I’ve been creating and selling here lately and was able to get a whole bunch of editing work accomplished.  (You can check out some of my work here).

I can even say the house at one point was super clean-all of it at the same time too!  That was before the cookout yesterday though….we grilled in the rain and it was awesome.

I mentioned in an earlier post that I’ve been getting up obscenely early to put in my treadmill time, but I’ve had to cut out my second dose of Xyrem in order to make it work. Just for the record, I am not a doctor and DO NOT recommend doing this.

With that being said, this strategy worked beautifully for me at first, but of course the docs wouldn’t tell you take both doses without a reason.  Unfortunately I’ve really been feeling the effects of skipping that second dose……I’ve been noticeably more sleepy, and to the point that my husband has even commented on it.

I think I’m going to have no choice but to start it back up again and figure out something else as far as finding time to workout. That’s just one of those things you deal with as a Narcoleptic though, trying to find out what works and what doesn’t.  Chalk “skipping meds” up on the “didn’t work” side.

It gets a little tough to fit everything in- I only have from 6-9pm available most weeknights, not including all the extracurriculars my family has going on.  Agh.   I know there’s a way to do it, I just haven’t figured out what it is yet.  One of these days I’d like to get around to posting some of the time saving ideas I’ve been finding here and there online…’s on my to-do list J