MySleepCentral.com

Courtesy of comments left by Emily, I have been introduced to a wonderous new site called Mysleepcentral.com.

I highly recommend you check it out!! Seriously.

Just be sure to come back too! :)

Finding a place to nap..

Since I am so extraordinarily pro-napping, finding a place nap is a regular issue. And thus I bring you, Geeky beds you probably haven't seen before.

My favorite is definitely the levitating bed! I'd totally feel like a bad-ass! Although I wonder if it's safe to bump uglies on that thing? Hhhmmm, I wonder if that's been tested by the company yet...

Frequently Asked Questions about my Narcolepsy

1. So what is that you have?
2. Is that like Necrophilia?
3. How did you get it?
4. What symptoms do you have?
5. How long have you had it?
6. When were you officially diagnosed?
7. Is there a cure?
8. Do you have to take medication?
9. How has it affected your life?
10. Do you know anyone else with Narcolepsy?

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1. So what is that you have?
I have a neurological condition (which means it's a brain problem) known as Narcolepsy (pronounced "nahr-kuh-lep-see"). Basically some of my wires are crossed upstairs, leaving my body unable to maintain a healthy sleep-wake cycle. I feel overpoweringly sleepy all day, and then suffer from insomnia and frequent awakenings at night.

2. Is that like Necrophilia?
Um, no ... not at all. Necrophilia is when your sexually attracted to corpses. Narcolepsy is when your body has issues with sleep. Glad we got that taken care of. Don't bring it up again ya ignorant yahoos!

3. How did you get it?
Unprotected Sex.

No really. That's why I'm here to tell you, that abstinence is the only proven 100% effective measure to protect yourself against Narcolepsy.

Okay, truthfully, don't know. No one's too sure if it's hereditary or caused by environmental factors. Although a lot of progress has been made in the past ten years in figuring that out.

4. What symptoms do you have?
I suffer from the following with varying degrees of frequency.

Execessive daytime sleepiness (EDS) - Basically I just want to, and can, sleep all the time, no matter the circumstances, how much sleep I got the night before, or even if I just woke up from sleeping. The result of being exhausted all the time has led to a severe decrease in my short term memory. I also have incredibly difficulty waking in the morning, concentrating on a task, getting a task done and done well, as well a number of other things. Basically it's very disabling.

Hallucinations - "vivid, [often] frightening dreams experienced while falling asleep or waking. About 25-50% of narcolepsy sufferers experience them." source

Automatic Behavior - "Automatic behavior occurs when a person continues to function (talking, putting things away, etc.) during sleep episodes, but awakens with no memory of performing such activities. It is estimated that up to 40 percent of people with narcolepsy experience automatic behavior during sleep episodes." source

Insomnia and frequent night-time awakenings - I joke around with everyone that my peak hours are like 11pm - 2am. I'm exhausted and sleepy all day, but then I often have considerable difficulty sleeping at night! Crazy isn't it! That doesn't make life easier, that's for darned sure!

5. How long have you had it?
Finals week of my Freshman year of college (May '04) I felt like a train hit me. I just started sleeping all the time. Like I would sleep for two or three days straight practically. I went to the University health center, where it was attributed to stress of finals as a freshman.

I told people at the time that it was so random. Like one day I went to bed fine and the next I woke up and couldn't stay awake. In hindsight, I think I'd been slowly exhibiting worsening symptoms for at least a few years, but for some reason that least week of school it all came to a tipping point and I just couldn't ignore it. So at the time, I felt like onset was very sudden, but in hindsight I think I just realized I had a problem very suddenly.

6. When were you officially diagnosed?
Well, as I stated in the above question, I first noticed an issue during the second of week. Starting with the ISU doctors that week, I went to numerous doctors until eventually I was diagnosed with Narcolepsy during the last week of October '04. Yup, it took six months of seeing doctors, taking pills for depression, getting second opinions, tons of blood work, a cat scan and eventually a sleep specialist to diagnose me.

The scary part is, I was fortunate. My diagnosis was way quicker than most people with Narcolepsy. A lot of people just live with the symptoms, some can't find decent doctors and others have doctors that think it's something else. I may be Narcoleptic for the rest of my life, but at least I'll be treated for Narcolepsy the rest of my life too!

7. Is there a cure?
Nope. I get to be Narcoleptic MY WHOLE LIFE! How sweet is that! (Okay, not very, but life could be worse...)

8. Do you have to take medication?
Silly children with your silly questions ... OF COURSE I HAVE TO TAKE MEDICATION! :)

9. Does the medicine keep you awake?
Yeah-ish. Basically I take an amphetamine. However, it will never make me feel totally "normal". Here's a good way of describing. As you go throughout the day, assuming you got a full night's sleep and all that jazz, we'll say on a scale of -50 to 50, you feel like a zero. So on our scale zero is considered healthy and normal. You're awake, alert, etc. A person taking speed, may be like a 25-50 or something. Without medication I easily feel like -50 all the time. With medication, I'm somewhere between -25 and -10, maybe even -5. So it's very rarely that I'll even break even on feeling awake like the rest o' you lucky schmucks.

And actually medicine isn't even necessarily the best thing I can do for myself. Basic lifestyle changes, such as a predictable sleeping/eating pattern, taking brief 20 min naps, exercising, getting 8 hours of sleep a night and eating healthy all play just as big of a factor some days as taking my medicine.

To cope, lifestyle changes and medicine are both necessary. Without one, the other is only half effective.

9. Do you know anyone else with Narcolepsy?
My cousin, my brother's math teacher's (who was also my ex-girlfriend's sister's high school volleyball coach) husband apparently does. And I have two friends that are currently seeing doctors to see if they have it. So other than my cousin, not really. Maybe I need to get out more, who knows.

Coping with Hallucinations: Get a Feline?!?

At the Talkaboutsleep.com Narcolepsy Forum, a fellow Narcoleptic cited that one problem with auditory hallucinations (see previous post I and II) is trying to figure out if what you heard is real or not. Nothing is as frustrating as thinking you heard something, but not knowing if you're just crazy or if you actually heard it and need to go check it out. Well, this poster cited that one way to deal with the problem is getting a cat.

My family has three cats, and let me tell you, I have no idea why this thought didn't cross my mind before, but it's absolutely brilliant! Here's what the post had to say:

Are you one of those people who spends up to an hour trying to fall asleep, only to be jolted awake by the sound of ? And then, aside from completely waking you up, you have to decide whether or not the sound might have really happened and if you need to get up to investigate?

If so, have I got the solution for you!!

Get (one or more) cats. Yes, aside from all their other proven health benefits (such as mutual lowering of blood pressure and cortisol levels) and emotional benefits, I have found my kitties to be an important mitigator of this annoying narcolepsy symptom.

When you get jolted awake by a sound, all you have to do is glance down to your feet or wherever your kitties are sleeping (not to worry, they'll ALWAYS sleep on the bed with you - it's the feline way). If they are sitting bolt upright and looking with extreme alertness in the same direction, then the noise actually happened. However, if they are still deeply asnooze, then you can be assured that not only did the noise not happen in your immediate vicinity, it had absolutely no chance of happening within about a 6 block radius. (Cats' hearing is ridiculously acute, and many times better than ours. We often think of dogs as having excellent hearing, but cats hear even better than dogs!) Aside from their great hearing, cats are also very LIGHT sleepers (a genetic trait to keep them always alert to potential predators; thus the term "cat nap" meaning a short, light nap), so there's no chance they'd actually sleep through any noise that would have startled you.

Okay, it won't stop the hypnogogic hallucinations from occurring, but it will eliminate any stress you might have over whether or not the noise was real. Now that I only need to open my eyes (one of my cats sleeps right at neck level with me, sharing my pillow) to see that my kitty is unfazed and still dreaming about chasing wild fishies across the plains of the Serengeti, anxiety doesn't even get a chance to arise and I can go back to the business of falling asleep right away.

(Now, if only I could do something about the visual hallucinations. Although they occur much less frequently and they don't particularly stress me out, I just HAVE to keep opening my eyes so as not to miss out on what the giant pink crystalline spiders are going to do to my wall next.)

Oh, and if you do take my advice, be sure to support your local Humane Society, ASPCA, or other animal shelter and adopt a kitty who is looking for a loving, permanent family. And get back to sleep

- Sam-I-Am

There is one problem, however, to this plan. My cats used to sleep with me all of the time, particularly this one. However, two summer's ago, in the middle of the night, I believe I kicked her off the bed. I mean like a strong horse kick mid-dream. I'm not certain. I could have dreamt it. But it explains why not only that cat, but none of the cats will sleep me during the night anymore. I hope PETA isn't reading this ... I don't want to be arrested for animal cruelty, I SWEAR IT WAS AN ACCIDENT! THE ONE ARMED DOG DID IT! I HAVE PROOF!

First Celebrity Trend of '07: NARCOLEPSY!

The first celebrity trend of 2007, according to VH1's hilarious program Best Week Ever, was "CELEBRITY NARCOLEPSY"!!!

Here's the blog posting from VH1's program about it:

Ladies and gents, only 3 days into the new year, and we already have our first official Celebrity Trend of 2007: Narcolepsy!

The trend was first spotted nary an hour or two after the clock struck midnight on New Year’s, when party host Britney Spears‘ spontaneously fell asleep on the dancefloor of the Las Vegas nightclub Pure. Check out this report:

She had been seated on a VIP tented-cabana bed overlooking the dance floor at 12:50 AM talking with one of her male dancers. She signed to he crew she wanted to leave and as she stood up, “she went into a dead faint and just fell right to the floor.”

Brit’s heavy entourage pulled her up and laid her on the bed at the same time… Eventually, Brit’s 12-man-strong security force was in place, as two of her dancers wrapped her in a blanket-hooded poncho.

Sure, we know what you’re thinking: That slut was just drunk! But you’d be wrong, Mr. Jump2Conclusions. Because her publicists assure us that, in fact, Britney was just tired and fell spontaneously asleep! Poor tired baby! Looks like she was caught by a narc… olepsy!

Also on New Year’s, Jessica Simpson was seen sitting down on a couch, then immediately laying down on the ground to catch some Z’s. A kind-hearted Q-Tip was able to quietly awake the pop star, just in time to make out for 10 hours with John Mayer.

Even Vanessa Minnillo couldn’t help but catch some shut-eye while walking out of the back exit at Marquee. Could narcolepsy be the new rage of ‘07! We certainly hope ssdjklsdjfskld…. (snore.)

There were numerous interesting comments from readers/viewers attached to the post.

"that’s odd, with the exception of q-tip the people listed in this blog cause me to have instant narcolepsy. my resolution is to care even less about these people, if humanly possible."

I love that it’s NARC Olepsy. Telling isn’t it? Especially in Britney’s case. I think it was WAY more NARC than Olepsy. LOL

Narcolepsy isn’t a joke, it’s a difficult life.
Brittney however is a joke that just won’t seem to go away.

I agree with sleepyknitter. I used to make jokes about narcolepsy until I was diagnosed w/ it. It can be a completly disabling disease in which falling asleep and falling (catalplexy) is only a fraction, though dangorous, of its many symptoms. It’s not fun having the sleep attacks, or cataplexy, 30-40 times a day. But, it would be good if it was a celebrity “trend”. That way maybe awareness and research $$$ would be pushed better.Now I find other things to laugh at (including myself).But the people you wrote about reek with yesturday’s news. On to new things!

Narcolepsy and Hallucinations: Part I

The hallmark symptoms of Narcolepsy are Excessive Daytime sleepiness and Cataplexy, as well as the intrusion of REM sleep (that's when you dream) at times it should not occur. One result of being thrust into REM sleep immediately upon falling asleep or coming out of REM right before you wake up, is that hallucinations can occur, and thus hallucinations are one other major symptom of Narcolepsy, although not necessarily a defining attribute.

I don't think anyone defines hallucinations better than the National Institute of Neurological Disorders (NINDS) when they state:

These delusional experiences are unusually vivid and frequently frightening. Most often, the content is primarily visual, but any of the other senses can be involved.

Man, hallucinations just sound like a bucket full of joy, don't they?! I think it's the fact NINDS refers to them as "delusional experiences". Haha, why not just say what you're really saying:

Hallucinations are when the crazies hear and see thing as they fall asleep or wake up.

George Washington University defines hallucinations a little more plainly, and makes sufferers sound a little less loco by stating that hallucinations are...

vivid and often scary dreams and sounds reported when falling asleep.

Is it really just me, or does that not sound nearly as bad?!? It's just me, isn't it? Or am i just hallucinating that people are actually reading this article? :)

Notably the world-renowned Narcolepsy research facility at Stanford University defines them the least horrific by stating:

During hypnagogic hallucinations, patients experience dream-like auditory or visual hallucinations, while dozing or falling asleep.

That sounds almost pleasant. Like, "oh I'm drifting to sleep in my chair and wait, is that Aunt Betty? Hasn't she been dead since I was six? And why is she holding hands that Turtle? Wait, does since when doTurtles have hands?!?"

If I had hallucinations like that I'd look forward to falling asleep a lot more often!

Four Narcoleptic Blogs

After scouring the internet I have found a few other fellow Narcoleptic Bloggers that I hope each and every one of you takes the time to browse through and leave some comments on! You can click on any of the bold blog titles to reach the blogs, and each blog is linked in my sidebar under the recommended browsing section.

Based out of Utah, Yawning Dog writes a blog titled The Narcoleptics Guide to Motherhood. She seems like a really neat lady, and already left her insight on this blog on multiple posts.

Another useful blog I found is titled The Adventures of a Sleepy Woman. I haven't had time to really scour the site, but the posts that I have read definitely lead me to strongly recommend this blog!

Living Narcoleptic is a non-blogger blog that I found many many moons ago and I find I certainly enjoy and relate to.

I just found a blog called Open Your Eyes to Narcolepsy. It is another fascinating read.

Of course I'll keep scouring the net ... but until then, take the time to surf on over, enjoy and even comment on these four!

-Jim-

What is Narcolepsy

Here's a great link to the National Heart, Blood and Lung Institute Fact Sheet on Narcolepsy. It's concise, easy to ready and well organized. Definitely take a look.

"Narcolepsy (NAR-ko-lep-see) is a disorder that causes a person to have difficulty staying awake. Narcolepsy can cause a person to suddenly fall asleep during the day. These “sleep attacks” occur even after getting enough sleep at night. The unusual sleep pattern that people with narcolepsy have can affect their schooling, work, and social life."

NINDS FAQ

Here is a Narcolepsy FAQ from the National Institute of Neurological Disorders and Stroke (NINDS).



Click on the link in the first sentence to reach it. It's really long, but it's easy to skim and very comprehensive. It's a good place to start.