It's the book I always wanted to write. OK. This couldn't possibly be THE book I wanted to write because Julie's story is different than mine. What I should say is that writing about my narcolepsy has always interested me and I toyed with the idea of writing a collection of essays about my dreams and major waking issues during my MFA. Instead I opted for a coming-of-age memoir that hints at my narcolepsy in parts. Although it's never really been written down, my story continues every day.
So, with that said, when I was on Amazon today and this new memoir by Julie Flygare, Wide Awake and Dreaming: A Memoir of Narcolepsy popped up in my recommendations, you can bet your bottom dollar I added it to my wish list (want to see if my local book store has it first before I buy.)
But this also reminded me that I've let my blog project go, and reminded me that I have a story worth telling. I've been getting emails from people about Xyrem and I've been trying to respond, but I don't know that I can keep up with this blog full-time, however, I will commit to at least monthly updates. And for this month, this new year, I decided to share with you this compelling memoir. I have not read it yet as I just found it a few moments ago, but it inspired me to share it here. I'd love to know what you think of it if you've read it. We could start a narcolepsy reading club!
Dream and Narcolepsy Stories are Hot in Hollywood: Miley Cyrus to star in Wake (And, why I am kind of mad)
I need to get on the ball. For real.
Does this happen to you? You get an idea, think it's awesome, and never do anything with it only to discover days, months or years later someone else beat ya to the punch? I know it's totally possible for multiple people to have the same idea. But, I can't help but feel disappointed that I didn't act my own ideas. Since I was a kid, I've had dream-inspired movie, short story and novel ideas. Some I started, some are just titles jotted down.
In fact, around the table at Chili's in Wilkes-Barre last Friday night, some creative writing friends and I (from the Wilkes University Low Residency Graduate Creative Writing MA and MFA program) I started a discussion about "lost ideas."
There have been movies and books about dreams before. But, I thought my interest in and diagnosis of narcolepsy would give me an edge. Being in a deep sleep for so long for so often, often causes me to dream up stories of those in a deep sleep for so long and so often that do incredible things. Like give people knowledge by visiting them in dreams. And, I'll stop there.... there are more ideas and I should keep them to myself.
Inception was a wildly popular movie which proves how fascinated people are with dreams. Dreams are such uncharted territory and such a great starting point for fiction. My ideas weren't even close to the complexity Inception, but my ideas did/do share the concept of shared dreaming.
This leads me to my last blog post, about Adam Sandler remaking the French movie Narco. And this also leads me to the inspiration for this blog post:
Miley Cyrus is reportedly slated to star in a movie about narcolepsy, Wake. PopDash.com reports she will play a young narcoleptic who, when she is near people that are sleeping, passes out and enters their dreams. That's all I know so far; as of today, there are no details on IMDB.
PopDash does report, too, that the screenplay was adapted from a novel of the same name by Lisa McCann. And, it looks like it is a series. I am sure I will like Wake starring Miley Cyrus. She's adorable. And I am old enough to have been a fan of her father--met him twice during my country radio days. I think I'll actually pick up the book first. I love reading dream inspired books -- but heck, I'd rather be writing them!
As I mentioned above, I was JUST talking about lost ideas. When I saw the Wake blog post, I immediately emailed my friends this message:
Nice to see you all this weekend!
So - to carry on my conversation from Chili's about all my dream-inspired stories:
Yep. Miley Cyrus starring in a narcolepsy movie. God freaking dammit. This one is dead-on with an idea I had after reading a book called Psychic Dreamwalking. FML.
I'm not exactly mad as I vented in my title or as I appeared in that venting email. But this 'sudden' interest in dreams and sleep just proves I am and have been onto something with the outrageous dream and narcolepsy inspired stories I concoct in my head, and sadly, only in my head. These upcoming movies are lighting a fire under my ass, that if I don't do something with these ideas--if I just let them sleep--others will come up with very similar ideas that DO see the light of day.
These movies announcements of Narco and Wake are indeed a wake-up call that I need to be writing. Not sleeping.
What ideas have you come up with in your childhood or adult life that you found invented?
This is pretty darn cool. The Escapist reported on Dec. 13, 2010 that Happy Madison Productions is going to remake a 2004 French film, Narco: The Secret Adventures of Gustave Klopp. Adam Sandler will take the lead role.
According to The Escapist, this film follows an ordinary man with narcolepsy who dreams about action heroes each time he falls asleep. The film follows him as he looks to capture some of his dreamed adventure in his real life. You know, as someone with wildly vivid dreams myself, I've got a notebook full of dream-inspired story ideas, as well as ideas that include a narcoleptic as a main character. I knew I was on to something all these years! I can't believe I hadn't heard of Narco: The Secret Adventures of Gustave Klopp.
You can view a preview of Narco: The Secret Adventures of Gustave Klopp below--although it is in French.
I can't tell if it is a straight comedy, or an action or drama movie as well. Either way, as a life-long narcoleptic and somewhat of an Adam Sandler fan, I am highly anticipating seeing Narco. The article did not mention a release date for Narco, but I will keep my eyes and ears peeled for this one.
Wow. It's been a little while since I've made a video or any other type of update. In August, I relocated and that process had me busier than usual. At any rate, I am doing much better with my Xyrem discipline issues. I've recorded a new video, which I've embedded below.
Also, I've been getting several questions about my experience with Xyrem for narcolepsy by email. Please feel free to send me YOUR questions at firstname.lastname@example.org. I'd be happy to share some thoughts.
If you are on Xyrem, what are some hurdles you've had to overcome? I'd love to hear from others.
Hello, all! It's been a while since I've updated this blog. To be honest, I've been having a very difficult time lately with my narcolepsy. The Xyrem is a miracle drug, but I have been having self-discipline issues with it. As in not taking it regularly. I feel worse knowing that I am not taking it when I am able to have this narcolepsy treatment.
I've posted a new video about some of my experiences, but it's a little longer than most of my video posts - about 8 minutes. It's below. It in, I cover:
The move of my office into the big, bright room to enhance my creativity and keep the energy flowing. This resulted in my bedroom moving into a cave of a room that has no window and not an inkling of natural light. At first I loved it, but now I don't even get that first glimpse of sunlight - you know, the kind that wakes you up and then you put a pillow back over your head? Now, I don't wake up at all.
The side effects Provigil was having on my birth control (YAZ) - I'll be honest, most of the years I've been on Provigil I was not on birth control. So, the last few months were the first times I have been regularly taking Provigil with birth control pills and I found that for me, Yaz and Provigil don't mix well. Don't want to get into detail here or in my video, but I had a change in medication for this mysterious reson.
My new prescription for Ritalin. So, I have several friends who are guidance counselors or behavior therapists. Now I feel like one of their students! I am now on Ritalin. Most people may not realize this (those outside of knowledge of sleep disorders), but Ritilan can help narcolepsy, too.
So- that's the overview of what is in this video:
After a few months on Xyrem, and realizing that I have not been giving the Xyrem its all for my narcolepsy, I decided I needed to make some changes. In this video blog, I explain my shortcomings so far with my treatment, admit that I am making some poor lifestyle choices, and pledge to make the necessary changes to improve the quality of my waking life:
HAPPY NEW YEAR, EVERYONE!
Would love to hear what you are doing this new year to change your sleep health! Please comment if you want to share.
Since I’ve started the Narcolepsy Diaries blog, I’ve met some nice people who either have narcolepsy, or think they may have narcolepsy. I’ve decided to, with the person’s permission, post some of these e-mails and questions. Here’s a recent e-mail one that made its way from Europe:
First of all, I think you're doing an awesome job. I really like your videos. Just checked your Twitter. So, you're looking for some blog ideas, huh? I'd love to know what life was like before Xyrem. I mean, what were your symptoms? What really interests me is: Do you really have to completely fall asleep whilst doing stuff in order to be diagnosed with narcolepsy...cos I don't really do that. I just never ever get a good night's sleep and I get so tired that I really cannot keep open my eyes. Sometimes, I just get sooo tired that I black out, like during lectures, movies or when stuff is getting to me. I also got some (it's not too bad) social anxiety and I sorta manage to miss minutes when I'm at the supermarket, for instance. I switch to autopilot. Four weeks ago I was caught stealing. I just forgot to take it out of the shopping cart. It all ended well though; they believed me that I just forgot. =)I'm going to see a neurologist about all this. At first, I went to see a psych doc. cos I was sure I was going crazy. Oh, and I also get vertigo. I think it's sleep-related. It gets worse with sleep deprivation, I think. Do you get that too? I hope the neurologist can help me with that.
Thank you!!!! You're doing a great job and you give me some hope. Maybe I am not all crazy, even though I have a diagnosed borderline personality disorder (but I got a job and I am functioning...not crazy....it's just got such a bad stigma this one). Maybe it's both....that's what I am hoping.
Anyway I'd just really like to know what life was / is like for you without meds.
Thank you so much for sharing your symptoms and your story. I feel that sharing these will help you get some information and encouragement. I will answer your questions and hope that others reading will also make some comments, too. Keep in mind that my answers, as well as those others contribute, are based on our own experiences and you should speak to your doctor, etc. about your own personal symptoms.
Q. What was life like before Xyrem?
Answer: I want to be nothing but honest on my blog. Life is not much different now, but that’s because when I started taking Xyrem a few months ago, life was in a chaotic state. It’s been hard for me to take it regularly, especially with the holidays and lots of recent traveling. I also started a new relationship, and not that I am hiding the Xyrem, I just haven’t taken it when he is staying over. That’s not too often, though.
However, on the days I have taken my full dosage the two times per night, coupled with the Provigil during the day, I have never felt better. That freeing feeling should be motivation enough for me to take the Xyrem every day, but there have been too many things getting in the way. It’s no excuse and nothing I am proud of; I finally found what is seemingly a miracle, but I have been struggling with keeping up with it.
Life before Xyrem and without Xyrem was a struggle. My biggest issue is with waking. No matter how much sleep I get, I still cannot get up in the morning. I set three alarms, all which I hit snooze for – for hours. I know that this is giving me a terrible quality of sleep, nine minutes or so at a time, before I finally get up for the day and for that, I am groggy all morning, barely able to function or think clearly until I have been awake for a few hours. It’s always been this way. I suffered a great deal in my morning classes in college and high school, while I received 4.0s in the later classes. Back then, I was not diagnosed and no one took me seriously when I mentioned I had a problem. I will write more about my experience in another blog post, but wanted to address that for you, here.
Q. What were my narcolepsy symptoms?
Answer: My main symptom is my token for napping. I can fall asleep anywhere, no matter how loud or uncomfortable. In my sleep study, during the daytime test (the multi-sleep latency test) I feel asleep in less than five minutes each time, one time in one minute. I also have a terrible bout with the sleep-wake transition, and often thought I may have more than narcolepsy. But, upon waking, I am often groggy and cannot move or talk and sometimes, I don’t know if I am awake or asleep. Finally, my dreams are super vivid. Even when I hit snooze on my alarm clock, for those nine minutes, I dream and it feels like hours. In some of sleep bouts during the study, I had very vivid dreams, yet it was not registering as REM sleep. So, I am thinking that this is categorized by the hypnogogic hallucinations that also come with narcolepsy. I talk often in my sleep and as a child, slept walked.
Q. Do you really have to fall asleep completely whilst doing something to be diagnosed with narcolepsy?
Answer: In my experience, no. I do not have the cataplexy, nor do I fall asleep during the day while busy doing tasks. If I sit still, especially in a car or airplane or on a couch watching TV, I zonk out nearly immediately. It seems as if my brain is busy enough to keep me engaged, I do no fall asleep. There are a few criteria one must meet to be diagnosed. There is the Epworth Sleepiness Scale that can help determine excessive daytime sleepiness (EDS), as well as getting a nighttime and daytime multi-sleep latency test (MSLT) that will help rule out other sleep issues and find out if it is indeed narcolepsy.
Q. Do I ever get vertigo, too?
Answer: It is interesting that you ask that. A few years ago, I had a big time struggle with dizziness, or vertigo. It was during a period where I was working full-time and going to school full-time, as well as doing stringing work for a local newspaper. I was diagnosed with the narcolepsy already, yet was not taking medication regularly. I was pretty sleep deprived, too. I often felt dizzy. Once, it was so bad, I went to the ER. I was pretty much seasick for lack of a better word. I was diagnosed with Acute Labyrinthitis. I wrote about this experience on another website I used to contibute for, which you can read here. I was given some medication for it and after a few weeks, it went away. It never returned. I never thought of the two as related until you just asked. I am not sure if the vertigo issue was brought on by my sleepiness, but it is something to think about. But, I never heard or read of it happening. You should definitely bring that up to the doctor. Whether or not it is a symptom of your sleep disorder or other mental illness, it is something that should be taken care of because I know first-hand that it is not very comfortable.
The person who wrote this, J., asked not to be indentified by name, but this person is going to keep up with this blog, so if you also have narcolepsy or another sleep disorder that may fit the symptoms they described, please feel free to answer these same questions in the comments section of this blog.
I made this video BEFORE work this morning. After I did laundry and took out trash and made coffee. Feel great - but I must leave for work now or I will still be late! Here's the latest:
For those of you who have been following the narcolepsy video posts, as well as on Twitter, I reduced my Xyrem dosage from 4.5 to 2.25 grams for each dose.
My doctor had lowered the dose after I mentioned a breathing episode. It only happened once, but I live alone and was a little scared. So, he cut my dosage in half.
But the smaller dosage wasn't working. It was taking longer to fall asleep and I would wake up just a few hours later. It didn't help that the period of time I started on the Xyrem Success Program happened to be a very busy time in my life with work events, holidays, planned trips, and other events that caused me to not be at home. It has also been hard to not eat late at night and also avoid that occasional after-work beer.
Last week, I had a call with my nurse at the Xyrem Success Program and she suggested that since I was still falling asleep, although not as fast, and that I had no additional breathing issues that I call the doctor and asked to be moved up. So, I did, but not until Friday. I had a few holiday functions to ago to the past two days so tonight marks the first night back at 4.5, two times per night.
Now, I actually upped my own dose last Thursday night before I called my doctor, but only 3.5. It definitely started to kick in sooner than the 2.25. There was one night where I stayed up nearly two hours reading after taking the 2.25, and another where I got back up and did my dishes. There seems to be a huge difference in the 2.25 to just the 3.5. It actually felt good to get the sleepy. But I did something kind of dumb.
After taking my Xyrem, and starting to feel that heavy feeling I described in my first narcolepsy video on YouTube, I remembered I forgot to e-mail something important. I got up and went into the office and, of course, out of habit I checked Twitter and Facebook. I couldn't keep my eyes open. But I was curious to what one looked like when they were falling into a Xyrem-induced slumber. I clicked my PhotoBooth icon on my iMac and hit record. The video lasted just under six minutes and man, am I out of it. I fall asleep in my chair but at the moment of relaxation where I loosened up, I jolted awake. I am sure everyone experienced that before, when you fall asleep and then realize you aren't lying down and your arms or head fall, waking you up. It was funny to watch. Then, I rested my head down and picked my head up a few times... I had tears streaming down my face. For some reason, the Xyrem seems to make me cry. My cat had ran into the room and that kind of got me back up, then I remembered I had hit record, so I turned it off and went to bed.
It was kind of silly to record myself, but I was curious. I probably won't ever post that video because, well, I look awful. But, it's a testament to show how Xyrem really does put you out. And, I should listen to the instructions and not take it unless I am in bed.