Natalie's all sugared out. Oliver has a new nickname. I had iTunes playing whatever while I was making dinner tonight (we had a hell of a feast with Mitz and Pops), and an old song by the Fun Lovin' Criminals played. And Oliver happened to be getting into everything he shouldn't while it was playing, laughing and shaking his head no at us the whole time. So now he's Skeezix, the Fun Lovin' Criminal. :-P
He's also a big fan of Harry Belafonte - who knew? Jump in the Line makes him laugh and bounce and dance! The boy has excellent taste!
Any Barenaked Ladies fans out there? Nope? Moving right along then...
Let's see... Long story short, after three sleep studies (two overnight, and one daytime Multiple Sleep Latency), I've been diagnosed with Idiopathic Central Nervous System Hypersomnolence, which was described to me as a precursor to Narcolepsy. My primary doctor, and the sleep specialist originally suspected Narcolepsy (I have three of the five classic symptoms, which are Excessive Daytime Sleepiness, Sleep Paralysis - if you read that link - everything that can happen during a SP episode has happened to me including Hag Phenomenon, and Hypnagogic Hallucinations), and the MSLT strongly suggested that, however I failed to achieve REM sleep in the series of naps, so Narcolepsy couldn't be confirmed. The specialist said that if he sent me for another MSLT, Narcolepsy would most likely be confirmed (he said many people get something like performance anxiety, so that keeps them from sleeping as they would in familiar surroundings), but he hesitated to do that because a diagnosis of Narcolepsy can cause problems with insurance and other things, but he didn't elaborate on the other things - I'm wondering if driving privileges are one of them? The treatment for Narcolepsy and Hypersomnolence are the same.
Backing up a bit, these sleep issues have been going on since high school. I started having horrible sleep paralysis episodes as a teen (including perceived out-of-body and levitation experiences, which of course don't really happen, but the hallucinations are *that* strong, auditory and visual hallucinations, complete paralysis upon awakening during an episode, and hag phenomena, which is the feeling of a crushing weight on the chest that makes it difficult to breathe), and had no idea what they were. I honestly thought (with a little help from my grandmother, clearly she experienced them as well as she knew what I was talking about, but didn't have the medical term for it!) that I was being plagued by demons in the night. I slept with a nightlight until I was 23, and even now get irrationally terrified of going to sleep alone if Jon is traveling. Interestingly enough, if you read some of the pieces out there about sleep paralysis, it is believed that many reported "alien abductions" and people thinking they are being visited by demons can be attributed to sleep paralysis. I was describing those episodes on an online forum several years ago and someone suggested I research sleep paralysis, I did, and immediately knew that was what was going on - the symptoms are highly specific. More on that in a bit...
Added to all that, I've always had problems, more so in the last ten years with excessive fatigue. Even with 12 hours of sleep for extended periods of time, I'm never rested. I often wake up groggy, disoriented, and sick to my stomach from fatigue. And as tired as I generally am, I often have bouts of pretty hardcore insomnia, although regular exercise has helped tremendously with that. I've always just chalked it all up to being some sort of lazy ass who couldn't cope even if I had lots of sleep and naps, so it wasn't something I would talk about, I just tried to power through. My naps aren't refreshing either - I usually fall into a heavy sleep, can be very difficult to awaken, and like awakening after nighttime sleep, can be extremely cranky, groggy and generally out of it after a nap. Yet the urge to nap is often overpowering. Several times it has taken me upwards of an hour to be able to fully awaken from a nap, which is why I won't nap if Jon isn't home. I also often "dream" as I'm falling asleep - even in naps - yet I'm not asleep yet - it was explained that those are hypnagogic hallucinations.
Coping has become increasingly difficult though, and late last year, I started thinking something had to be wrong with me, that this can't be normal. I started researching Chronic Fatigue Syndrome and Seasonal Affective Disorder, but neither seemed to fit. Then a couple of weeks later, I had a week where I had intense sleep paralysis episodes every night and thought, Ok, fine, you know what it is, how to break out of an episode, now maybe it's time to figure out the triggers. So in further research, I stumbled on narcolepsy, and wrote it off initially, but eventually came back to it, did some reading, and recognized a lot of it. So I spoke to my primary doctor, who agreed that none of this was normal, and we started the sleep studies. Which brings me to today.
Interestingly enough, my mom and I think that her mother (the one who recognized my sleep paralysis in her own way) had some sort of sleep disorder - most likely Narcolepsy - and there is a strong hereditary link. This is a lifetime disease, there is no cure, but the symptoms can be controlled or relieved. On the one hand I'm glad to know I'm not some sort of lazy assed freak, but I'm also not thrilled about the thought of being on meds most likely the rest of my life. However, I can't really go on the way I have been either. The sleep specialist (who is fantastic, BTW. He's been rated one of the top in his field over the last several years by his peers, so I feel fortunate to have been referred to him, he's also very easy to talk to, and listens too, which is so important) said that researchers believe they have identified the neurotransmitter that is responsible for Narcolepsy/Hypersomnolence (I thought it was a condition or disorder, but Dr. B. used the term disease, so I'll follow his lead), so with further research, more targeted treatments should be on the way.
So, as soon as my pharmacy gets the order in, I'll be starting Ritalin to combat the excessive daytime sleepiness. There are several options for treatment. Dr. B suggested Ritalin for several reasons:
1) It is a shorter acting drug, so I can dose myself according to my needs, within parameters of course, throughout the day. If I need to go to bed early one night, I can skip a late afternoon/early evening dose. If I need to be out later, I can take a dose around 6 p.m., but still be OK to sleep at 10. That's nice to know - I took a class last fall, and was a little apprehensive driving home because I was SO tired, and it was only 8:30-9:00.
2) It's well-tolerated.
3) It's easier to go from Ritalin to the other drug should the Ritalin not work for me, or if I can't tolerate it. Apparently it's harder to go to the other drug from Ritalin due to the way they both respectively work in the body.
Of course the big negative is it's a Schedule 2 controlled substance, so refills are going to be a PITA. You have to have a paper RX for each refill. The doctor is in downtown Phoenix, but he told me after my follow-up in a few weeks, I can get "transferred" to a doc who's more local to us, so obtaining the refills will be easier.
If the Ritalin doesn't work, or isn't tolerated, there's a drug called Provigil. That one is a 16 hour drug, so you have way less control over it, compared to Ritalin. It can also cause headaches, and because of that, you have to start low and work up to the correct dosage to try to avoid that. It lasts longer in the system too, so if I understood correctly, that's why it's harder to switch from that to Ritalin, so you would have a period of time where your symptoms aren't being addressed.
I just hope something works. I'd love to not be so freaking tired for no good reason all the time. It's like being in a deep, heavy fog periodically throughout the day.
This was probably more information than anyone needed, but there you have it. And maybe Jon will soon have some relief on long car trips - if it's over an hour, I generally won't/can't drive, because I will nod off, to the point that I start headbobbing while driving.
We had tacos for dinner tonight, and since Natalie didn't eat much lunch today, nor many snacks (I offered!), she was ravenous at dinner. I think she ate more than Jon.
Anyway... She wanted to take a bath with Oliver tonight, so we told her fine, they could take a bath in our tub since it's bigger. I pawned Oliver off on Jon (since I smelled poop), and got Natalie undressed. As I pulled her shirt off (hooded sweatshirt), all this shit came out of the pockets all over the floor. Upon closer inspection, it turned out to be handfuls of taco fillings. "In case I get hungry later, Mommy".
While I was trying to make his lunch today, he went around the family room and kitchen, getting into everything he isn't supposed to. He'd stop and wait until I was looking, then open a cabinet, grab a book, toss a picture frame. As soon as I'd say "No, Oliver", he'd crack a huge grin, and shake his head no. Then laugh every time I came over to move/distract him. Wash, rinse, repeat. He's lucky he's cute!
He's also playing catch now! He'll sit on the floor across from you, and toss a ball in your direction, then wait for you to toss it into his lap - then he grabs it - his hand/eye coordination appears to be pretty good too - he can kind of anticipate where the ball is going to land. He thinks catch is so much fun - and it is!
And Peek-a-boo. I've noticed that if I cover his face, he'll wait for me to say "Where's Oliver?" before pulling whatever it is off, and laughing. He does the same if you cover your face - waits for the "Where's Mommy (or Natalie or Daddy)", then he pulls it off you. Tonight, as I was rocking him to sleep, he covered his face with his lovey. I didn't think anything of it, until I heard him giggling. So I said "Where's Oliver", he waited, then pulled the lovey off, and kept repeating. What was really cool was, he would switch up his intervals, like I do when I play with him. Sometimes he'd pull the lovey off right away, sometimes he'd wait several beats.
I grew up in Baltimore, MD. I have one brother, and a stepsister and stepbrother. I moved to AZ in 1996, Northern CA in 2000. Met my husband in 2001, we married in 2003 and moved to Boise, ID for a job. Moved to Columbus OH in 2006, then to Mesa, AZ in 2008. I have two beautiful children.
