frustrations and disappointment

I recently wrote about my serious goal of losing weight.  The good news is I’ve actually been making some progress.  Slow progress, yes, but progress all the same.  I’ve lost about 6 pounds in the last 3 weeks, which almost puts me back to my pre-Christmas vacation weight. 

The bad news is that I’ve been under some stress related to my efforts ever since I met with my personal trainer the Friday before last.  I think he is being ridiculous, so I’m trying to find the guts to fire him, knowing that he will give me a speech if I do so.  (Let’s just say, I’m a little conflict avoidant…)

Backing up for a minute, I hired a personal trainer when I got back from the US.  The whole thing was paid for by my mother, who insisted that I get one because she was worried about me.  I finally agreed, because I was worried about me too and, hey, this was something that I had never tried before. 

And things went pretty well for the first week, putting aside the fact that I was sleeping for a few hours after each session, that I had hired him to have him help me with my diet and yet he appeared to have little experience with that, and that I learned after hiring him that working out for an hour three times a week wasn’t going to help me lose weight anyways (it would just be good for other reasons).  We did circuit training, and I did notice that I felt a little different after only three sessions.  I don’t know what it was, but it was something; maybe you would say that I felt like I was a little more physically capable.  I also had started this shared food diary with my sister via google docs, which led me to eat much better (namely, I stopped for the most part eating lots of candy and I started cooking dinner more often).  And I began to lose weight, which was great.

So, what’s the problem, right?  Well, here’s where things get interesting: it appears that my trainer and I are completely incompatible in how we work.  He would probably be an okay trainer on The Biggest Loser (let’s throw out your whole fridge and change your whole life in one week!), although at least the nutritional plan of the show allows you to eat normal looking meals (you know, to use recipes to make something as opposed to eat this hunk of meat with some grain and veggies).  However, he does not seem like an okay trainer for me.

It started out innocently enough.  I asked him if we could move our sessions to either maybe after 5 pm or early in the morning because having them at 3:30 was disrupting my work and life schedule.  I explained that I was no longer doing anything past 3 pm since we did our sessions and that it would be much better for me to have the sessions before or after I did my work because I have been trying hard to have a normal work schedule.  I thought it was a legitimate concern, however he thought I was being ridiculous.  He went on to claim that I had already changed the time once (which, I think he mixed things up, because I had never talked about meeting at 1:30, which is smack in the middle of my day), that I wasn’t committed enough (even though he kept telling me that he was so proud of me during our sessions), and that I was just full of excuses, especially because I didn’t want to do his diet program.  Oh, and I had cancelled one session because I had a migraine headache.  But then, he said (and I still can’t believe this), that he didn’t think we could work together anymore because I’m “not keeping up my half of the bargain.”

I found this hard to believe.  Here I cancelled one session because of a migraine, said I would just work with my sister on the nutritional stuff, and wanted to discuss the time of sessions and he didn’t think that we could work together?  And oh, I had lost 5 pounds, but that didn’t seem to matter.  Now, I was upset, and more than a bit defensive.

Anyways, in the end I didn’t want to end things badly because I worried that I would feel badly about myself for doing it, so I patched things up and he thinks everything is fine now (as long as I’m “keeping up my half.”)   But in getting things to end well, I had to agree to a plan that I realize is completely crazy and unrealistic (and which I knew was such then but didn’t want to fight with him).  Here’s the plan: in the next week, I will completely change my life forever: I will cook ALL of my meals, I will completely clean my apartment and keep it clean, I will fix myself up all nice, I will feel better about myself, I will exercise every day, I will eat perfectly, …  lol.  No, seriously.  I’m not joking.

And then he proceeded to give me a talk about was I really motivated? and so forth.  lol.

I tried to explain to him that, um, you know, I do much better in making small changes first as opposed to changing everything and burning out like I usually do; that it’s actually hard to make changes in your life even when you are really motivated, etc. but he just couldn’t understand why someone couldn’t completely change their life in, say, a day.  And yes, he had almost zero advice on how to get to this perfect self except to just do it.

So I did what I always do when I’m overwhelmed: I did nothing for maybe the next week, not even knowing where to begin.  And then I realized: this is absurd.  Completely absurd.  If the guy is not helping me anymore but making me feel terrible and overwhelmed, leading to me more or less doing nothing for a week, then I should fire the guy.  I’ve just been avoiding doing it because I may have to meet up with the guy to get back my money.  And, like I said, I hate conflict.  I’m not all that emotionally tough and conflict tends to give me migraines.

Sigh.  Am I completely crazy or am I being reasonable? 

It’s just disappointing because I had been doing so well, and now I realize that I should have taken my sister’s advice and looked at multiple people before I hired someone.

Now I’ve been thinking, do I really need (or want) another personal trainer?  I think I could probably just do the weight lifting stuff myself.  Maybe I should hire a nutritionist?

What do you think? 

Oh, and my apologies for the long rant, lol.  I just needed to get this off of my chest, even though I was afraid I would sound stuck up saying, “oh, poor me, my personal trainer is terrible…”  :-).

Thanks for listening.  Your advice would be much appreciated.

Lucid dreams and Narcolepsy

For years I thought I was just a bit weird, although I suppose I suspected that part of it might be my Narcolepsy.  My dreams were just different than they are supposed to be.  I normally could remember them, for one thing.  They were almost always lucid dreams (i.e. I knew that I was dreaming when I was asleep), and I could do unusual things in my dreams, such as materialize objects, do magic, even rewind my dream to change it.  I could also create my own dreams if I wanted, although it takes a lot of work to maintain control of a dream.  For me, I try not to control my dreams too much these days because I think it affects the quality of my dreams.  Lately, it seems like there are nights that I just dream non-stop and it is so exhausting.

Now, I don’t think that the average Narcoleptic has this experience, although Narcoleptics do tend to go into different stages of sleep at different times than non-Narcoleptics do.  It is well known, for example, that one of the strange things about Narcoleptics is that they can take a nap during the day and go into REM and dreaming in just a few minutes.  For me, I also find that my dreams are different during the day than at night; during the day they are often times more vivid.

However, I have heard from some other Narcoleptics on Talk About Sleep regarding lucid dreaming, and there were some other people who related that they too had lucid dreams at least some of the time and a few people said they have “dream powers.”  Perhaps my strange dream experiences and that of some other Narcoleptics come from the fact that most of us don’t sleep that deeply at night.  I do know that when I was on Xyrem, my dreams were unbelievably intense, I could not wake myself up from them easily, and I generally did not remember them much.  It was actually kind of refreshing.  This made me even more convinced that my strange dreaming experiences are firmly linked with my Narcolepsy, given that I went back to normal dreaming  when given a medicine that supposedly gives Narcoleptics more normal sleep.

For some reason, my abilities regarding dreaming have grown and changed over time.  I do remember when I was a child that I could not rewind my dreams, although I did have the ability to make lightsabers appear out of thin air (lol, I was a big Star Wars fan).  Maybe I need to do some reading on the subject of dreaming, as these days my dreams have been making it hard for me to sleep at night.

Does anyone else have lucid dreams and/or strange dream abilities?  Do you think that this is because of your Narcolepsy or is just something you can do?  I know that some people buy books on lucid dreaming because they want to learn to do it, but I am a bit envious that most people don’t remember their dreams.  Because as anyone who does remember them can tell you, some of them are so weird it would be better not to remember I think. 

My favorite Narcolepsy website

If you’ve been following my blog, then you can probably guess what website is my favorite Narcolepsy site.  It’s that site I mention so often that I’ve stopped bothering to link to it?

That’s right, it’s Talk About Sleep’s Narcolepsy forum. 

Many years ago I remember my sleep doctor mentioning the site to me, thinking that it might be good for me to hear from other Narcoleptics.  At the time, I didn’t follow through with it.  Why would I want to talk to other Narcoleptics?, I thought.  I’m doing fine.  I have my doctor – that’s enough.  It was only later when things got really bad for me that I sought out the forum for advice, and I’ve been going back ever since.

I originally joined Talk About Sleep (TAS) because I had questions on Xyrem causing depression and anxiety.  My doctor thought that the Xyrem wasn’t causing my depression, but I was sure that it was and after talking with some other Narcoleptics on TAS I was sure that I was right, as I heard that others had also had this problem.  Although in the end I wasn’t able to find a solution to my problems through the website, it was a relief to find somewhere to ask questions and talk to people.  Why hadn’t I joined sooner?, I thought.  This site was awesome!

Finally I had a place where I could ask any question I wanted about Narcolepsy, including things my doctors might not know about, like do many Narcoleptics have lucid dreams?  Since then I have often gone back to the site, and in the past few years I have tried to go back to the site often just to see if I might find a post of interest.  And often I have found interesting things.

I also discovered that I liked helping other Narcoleptics with their questions, if I could.  After all, this is what TAS is all about: people ask questions and other people bother to answer them…  Lately, since I started this blog, I’ve been trying to answer a lot of questions via the site because I enjoy this aspect of sharing the knowledge with others that others have shared with me.

So if you haven’t been to TAS, I would recommend that you try it.  Drop everything and go take a look right now!  It’s the best. 

You might not find what you are looking for (it is after all a forum, which by its very nature makes it hard to search to find the subject you are looking for), but it is a great resource and the only site I regularly check in relation to Narcolepsy.  It might not be a bad idea to stop by every now and then, just to see if anything interesting comes up.

I’m curious, do we have any TAS devotees among my subscribers?  (yes, all 18 of you :-) ).  I know that some people have mentioned in comments that they are from TAS, for example, Wolfie, but I thought there might be some more people as well…

Why are there so few useful books on Narcolepsy?

Here’s a question for all of you: why are there practically no useful books on Narcolepsy?  (I could extend this question to: why are there so few helpful in-depth Narcolepsy resources out there, but I’ll save that one for a later post…)

I can’t even tell you how many times I’ve searched for books on Narcolepsy, hoping to learn more about the disorder and everything that goes with treating it.  Every time I do the search on Amazon for Narcolepsy, I think to myself, maybe this time something new will come up, as if I could make more books on Narcolepsy appear through the simple act of searching on Amazon.  But every time since I first started looking during my junior year of high school, only two new books on Narcolepsy have appeared on Amazon, giving us a whopping total of four books on Narcolepsy.

That’s right, four non-fiction Narcolepsy books currently in print.

You might say, but four doesn’t sound like such a bad number for a book on a rare disorder, right?  Except that the number is misleading. 

Unfortunately, we’re not talking about four wonderful useful books on Narcolepsy.  We’re talking about four books on Narcolepsy with some big problems.  Basically, they all have one or more of the following issues: a) they sound like something out of a medical journal that would probably only be useful to a doctor, b.) the information in them is outdated, with two of them being at least 14 years old (i.e. they’re ancient), or c). the information in them isn’t comprehensive and doesn’t go much beyond the basics you find on the Internet.  In an ideal world one of these books would be Narcolepsy for Dummies (I like the Dummies and Idiot’s Guides), but unfortunately I have yet to find anything that comes close to the sort of resource you would expect to find on any given medical condition (unless it is extremely rare).

(And no, Narcolepsy is not THAT rare.)

Let’s take a look at each of the four and see what we have here.

Our first book is Narcolepsy: A Funny Disorder That’s No Laughing Matter.  This book is probably the best of the bunch, combining some information on Narcolepsy with the personal experience and stories of the author.  Back when I read it in the late 90s, I didn’t learn anything new from it and I found it to be rather depressing.  Having read the book over ten years ago, I don’t actually remember much of it except that I thought that the book gave the distinct impression that Narcolepsy had ruined the author’s life (hence, my comment about it being depressing).  However, having said that, I have heard other Narcoleptics say good things about it, although I get the impression that the book would mainly be useful if you were recently diagnosed or didn’t know much about Narcolepsy or if you had never heard about other patient experiences. 

All in all, it’s not a bad book.  It’s the only one of the four with more than 1 review and a positive rating on Amazon (4.5 stars with 11 reviews).  Clearly, some Narcoleptics like the book, so this would be the one I would recommend if I had to recommend a book.

Unfortunately, even if this is the sort of book you are looking for, the book is ancient, which is something a book on a medical condition can’t afford. 

I’m sorry, but the book is 15 years old (!).  If I had it here next to me, it would be crying out, “Please update me!  I’m so outdated I want to cry.”  So it’s fortunate that I don’t have a copy here, lol. 

To give you an idea of how ancient this book is: the two best and newest medications for Narcolepsy didn’t exist when this book was written.  So the author talks about Narcolepsy and cataplexy, yes, but she can’t talk about Provigil (released in 1996), Xyrem (released in 2002 for cataplexy, more recently for just EDS), or Nuvigil (released very recently).  If this was a conversation about Narcolepsy treatment and the book was a person, the book wouldn’t have much to say.

Second, we have Psychosocial Aspects of Narcolepsy, which is basically a compilation of (14 plus year old) medical articles on Narcolepsy.  I only skimmed this book many years ago, but it basically outlines all the problems a Narcoleptic might have in language that makes it clear that the audience is not your average patient (it sounds like a bunch of medical journal articles).  It might actually be useful to read, perhaps it has a few useful pieces of information, but it definitely doesn’t have much on treatment and it isn’t intended for patients.  As I mentioned before, it also has the same issues as the first book, in that it is very much out of date.

Finally, we have two newer books, neither of which I have read but neither of which look particularly promising (at least not promising enough that I would bother to buy it).  One is called Narcolepsy Medical Guide, published in 2008.  I can’t say how useful it is, but I’m not especially impressed at a glance: the book has zero reviews, zero used copies, and a cover that makes it look like it was self published.  I haven’t heard of anyone reading it before, and it feels a bit wrong to judge a book that I haven’t read, so if anyone has read it let me know what you think.

And then we have The Official Patient’s Sourcebook on Narcolepsy, which gets points for being published in 2002.  I haven’t read this one either, but according to its only Amazon review, which gave it one star, the book doesn’t sound like it was written with patients in mind and some of the links no longer work.  This might be an interesting one to read, however it sounds like it would be more useful to doctors than to patients.

Which brings me back to the topic of my post.  Yes, there are some books out there but none of them are especially outstanding.  As I mentioned before, I just find it hard to believe that there isn’t a comprehensive, well written book on Narcolepsy for patients out there that goes beyond the basics.  I’ve been expecting such a resource to be published for over 10 years now, but I’m still looking.

Am I asking for too much?

Sure, Narcolepsy is a rare disorder, but it affects at least 150,000 Americans and is serious enough that I expect a lot of people would be interested in reading more about it to help themselves or their loved ones better cope with Narcolepsy.

I know that some Narcoleptics have trouble staying awake while reading a book, but surely many of us still read, even if it’s not a lot?  And regardless, surely a lot of us would want to read more about Narcolepsy and how we can feel better?  Lol, it sounds like a silly question, but I have asked myself this many times in trying to figure out why there are so few non-fiction books on this disorder.  There has to be a reason, right?

What do you think?  Why are there so few Narcolepsy books out there?  Do you disagree with my assessment of the books?  (Was one of them helpful to you?)

Don’t be shy! :-)

Xyrem, Revisited (or, “You want me to take WHAT?!”)

It’s ironic that one of the two “good” medications used to treat Narcolepsy should elicit such a negative response when people first hear about it (“You want me to take WHAT?!). 

That’s right, I’m talking about our good old friend Xyrem, one of the newer kids on the Narcolepsy medication block.  I’m also talking about GHB, better known to some as “the date rape drug,” which happens to be the main ingredient in Xyrem.

Below you can see how I imagine such a first conversation about Xyrem (between a Narcoleptic and their sleep doctor) might go, based on my own first response upon hearing about Xyrem.

Sleep doctor (white doctor coat, notepad and all): “There is this drug called Xyrem that I think might help your EDS and cataplexy.  You take it at night in two doses, and it should give you a good night’s sleep; in fact you may be able to sleep for 3-4 hours straight with this.  Unlike stimulants, it doesn’t have the problem of highs and lows and you shouldn’t have problems with tolerance or withdrawal.  Some Narcoleptics even find they lose weight on it without any effort.  I want to prescribe it for you.  I think it will be great for you.”

You (Narcolepsy patient): “So it’s not a stimulant… it’s a sleeping pill?”

Sleep doctor: “Actually, it’s a liquid.  It’s the legalized form of GHB, which you might know better as “the date rape drug.”  When it was banned by Congress it was legalized only for Narcolepsy, first for only Narcolepsy with Cataplexy and now Narcolepsy in general.  I’ll explain everything to you.”

You (freaking out): “You want me to take GHB?!  You want me to… I’m sorry, can you repeat that please, because for a second there I thought you were trying to prescribe me “the date rape drug.”  (You laugh nervously and look at your hands.)  I mean… seriously?”

Sleep doctor: “I know it sounds bad, but it’s actually quite safe.  Really.”

And so on and so forth.

I know how it sounds, really.  I’ve been there myself.   

I remember the first time my doctor told me about Xyrem, back when it was only used to treat cataplexy.  He mentioned that if I ever felt my cataplexy was a problem, I could try this drug called Xyrem.  My cataplexy wasn’t a problem, so he didn’t recommend it and I wasn’t interested in it anyways, but when I found out what this drug was I immediately decided that this was not something I wanted to take.  I immediately reassured him that my cataplexy wasn’t a big issue for me, already convinced that I would NEVER take “legalized GHB”. 

Who would actually take GHB voluntarily, right?  It sounds… unsafe.  It sounds… crazy.

Which brings me to the second part of the story.  This part takes place a few years later, when Xyrem had proven to be helpful for people struggling with EDS (although it was still in the process of being approved for that purpose). 

You remember that I asked myself, “Who would ever be crazy enough or desperate enough to try Xyrem?” 

Well, it turns out, that person was me.  lol.

Sure, I was bit scared to try it because I’d never taken anything like it before and because of what it was, but when I learned that it could help my daytime sleepiness (which was really bad), I was psyched about trying it.  I asked a ton of questions and was finally comfortable with trying it, especially since my sleep doctor strongly recommended it. 

I had said, “I’m really sleepy these days, what can I do?”  He said, “Let’s put you on Xyrem.”  And after a long conversation, I finally said, “Okay.”

Which brings me to the topic of this post, “Xyrem, Revisited.”  I thought that I owed it to all of you to talk a bit more about Xyrem, especially considering that all I have talked about in this regard up until now has been all the problems I had with it and that I eventually stopped it because of these problems.

I thought that I owed it to all of you to give you a more balanced view of Xyrem because I know that it works well for some Narcoleptics and I wouldn’t want you to add my story to any fears you might have about Xyrem in case you might be thinking about trying it. 

I thought that I owed it to anyone who might be interested in the drug to write a follow-up post dealing with the positive aspects of Xyrem and why I don’t think it’s a bad drug.  I know that a lot of people are eager to learn more about Xyrem, so I thought that it was an important topic.

Yes, Xyrem didn’t work for me, at least not in the way I wanted it to.  It did help my Narcolepsy tremendously (my EDS was much reduced, my cataplexy was non-existent, I had the energy to stay up until midnight, and I slept for two periods of 3 hours each every night, which was a miracle to say the least), however it also did a lot of other things in the way of side effects.  In the end, the depression and anxiety I got with the Xyrem led me to stop it.  That is the story I talked about early on in one of “my story” posts.

However, having said that, I have to add that I hope that my story doesn’t deter anyone from trying Xyrem (provided that your doctor recommends it to you).  Xyrem is not a “bad drug,” in fact it is rather “good” when you compare it with traditional stimulants or anti-depressants, neither of which deals directly with the root causes of EDS and cataplexy (in addition to having other things going against them). 

As I have mentioned in previous posts, Xyrem and Provigil are “the good guys” when it comes to Narcolepsy medications.  . 

Yes, Xyrem doesn’t work for everyone.  It’s very expensive (even if you have insurance), it’s difficult to get, and for some people it might not be possible to do what you need to do to take it (for example, if you were living alone with young children, being dead asleep for 3 or 4 hours at a time might be a problem if there was an emergency).  Also, as with all drugs, it may not be recommended that you try it if you have certain health issues, like a history of depression.  Again, as with most drugs, some people find that Xyrem doesn’t help them or that they get bad side effects. 

However, Xyrem does work for many people, and I think that this is important to remember if you are considering whether or not to take it.  Just because it didn’t work for me or other Narcoleptics you hear about doesn’t mean that it won’t be a miracle for you. 

I have heard about a number of Narcoleptics who take Xyrem and have had a good experience on Talk About Sleep.  I have also personally met two Narcoleptics for whom Xyrem worked well, including a sleep research coordinator who didn’t need daytime naps with Xyrem (in combination with eating most of her food at the end of the day). 

If other medications like Provigil or other stimulants don’t work for you, Xyrem might be a good option.  It sounds crazy, I know, but it is actually quite safe as long as you use it as instructed and use it under a doctor’s care. 

For some people it is “just what the doctor ordered.”

As is the case with all Narcolepsy medications, there is only one proven method for finding out if any one drug will help you, and unfortunately that is trial and error. 

My philosophy for this blog has always been that what works or doesn’t work for one Narcoleptic isn’t necessarily true for other Narcoleptics (the corollary being that what works or doesn’t work for me isn’t necessarily true for any of you).  This is part of the challenge of having Narcolepsy (or most any medical problem, I suppose): each of us has to figure out for ourselves what works and doesn’t work for us.  Like I said before, we only have trial and error, in addition to the advice of our doctor. 

As far as Narcolepsy medications go, I don’t recommend any one medication over the other, and I certainly am not suggesting that anyone run to their doctor and demand Xyrem.  lol.

Rather, if you take one thing from this post, I would want it to be that it pays to try to be open-minded when it comes to Narcolepsy medications.  Although I will never suggest that everyone try this or that medication, I have personally found that it is a good idea to be open to trying new medications if your doctor thinks that is a good idea (provided you think your doctor knows what they are talking about… I know it isn’t something we should have to worry about, but the sad truth is that not all doctors know a whole lot about Narcolepsy).

It’s always your call in the end, but this is after all why we pay to see our sleep doctors, right?  It’s their job to help us navigate the difficult world of Narcolepsy medications. 

Sometimes it might not be a bad idea to trust them.

Thoughts?  Comments?

P.S.  And a Happy Saturday to you, dear readers.  :-)

Getting with the (weight loss) program

Recently I made a renewed resolution to myself that I had to lose weight.  Lots of weight.

It wasn’t a New Year’s Resolution, because when I thought about making it that sort of resolution, the pessimistic voice in my head said, “Sure.  You’re really going to resolve to lose weight this year, like just how many years in the past?”

Which made me cringe and feel a bit guilty, but unfortunately the “bad voice” was right: Clearly I was going to have to do something other than the same old things that have never worked, and making a New Year’s Resolution probably fell under the category of “same old.” 

I was tempted, of course, to deny this instinct with war cries of “This time I am committed!  I will have more willpower!  I won’t give up!  I will give up all carbs and work out every single day for an hour, even if I’m sick!” and armed with more self-help weight loss and exercise books/websites than can possibly be healthy. 

But this time, I simply had to concede that my internal pessimist was right.

Thank you, “bad voice.”  lol.

You know the saying, “If you do what you’ve always done, you’ll get what you’ve always gotten”?  Well, there you go.  This year, instead of a New Year’s Resolution, I’m trying new things to work towards my own quiet internal resolution.     

Call it my inner commitment to change, if you will. 

Regardless of what you want to call it, whatever I’m doing feels a little better than the January resolution approach, maybe because I don’t feel like I’m fighting the same battle in a war that I always seem to lose.  I’m not just riding on the momentum and enthusiasm of starting something; I’m starting the beginning of a long effort to make a number of changes, changes I know will not be easy. 

This year, I’m in it for the long haul, and I’m not expecting the New Year to give me one more ounce of motivation than I otherwise would have had.

Yes, I meant it when I said that I wanted to lose weight the past 8 years, but this year I’m willing to make sacrifices and suffer to get there.  This year I know it will be hard, but I’m committed to doing it no matter what.  Because I’m sick and tired of making the same resolution year after year and the reasons to lose weight keep piling up. 

It’s embarrassing to admit it, but I’m well over 50 pounds overweight, and worrying about it has done nothing but make me fatter.  Clearly, I have to do something different this time around if I’m going to have a shot at success.

And succeed I will.

Since this is, after all, a sleep blog, it seems appropriate to mention that this year I’m adding sleep related reasons to the (very long) list of reasons to lose weight.  I have mild Sleep Apnea, and we all know that being overweight is bad for Sleep Apnea. 

I’ve also been thinking: if being overweight supposedly makes non-Narcoleptics have less energy, surely a Narcoleptic like me that already struggles with energy issues would notice an increase in energy if she lost weight?

I’m hoping the answer is yes, even though whatever I have to do to lose weight will be worth it regardless if it gives me more energy.  I’ve gained over 50 pounds (something that had never happened to me before) in the 3.5 years since I stopped Xyrem, and I think it’s about time that the ridiculousness stop.  I’ve generally struggled with my weight since I was diagnosed with Narcolepsy as a child, but it’s only the past few years that I’ve been so overweight, and I owe it to myself to stop the bleeding, so to speak.

Has anyone else struggled with their weight since getting Narcolepsy?  Is anyone else trying to lose a lot of weight?

I know that many Narcoleptics struggle with their weight, so I thought that some of you might like to follow my weight loss efforts…    

As always, thanks for listening!

Meet Olivia, the service dog of a Narcoleptic with severe cataplexy

Today I happened across a heartwarming patient story on Talk About Sleep that I had to share with all of you. 

The story is about a Narcoleptic named Andrea, whose severe cataplexy sometimes left her paralyzed for 20-3o minutes at a time.  Afraid of having such an attack in public while alone, she stayed home most of the time, causing her to be extremely depressed, struggling with suicidal thoughts, and no longer able to do the things she once did (like going to church). 

It was only one night when a suicide hotline counselor she talked with sent a team to her house that she learned from one of the team members that having a service dog might help her.

From there, the story gets brighter. 

Andrea was eventually able to get such a dog with the help of a non-profit organization that covered the (significant) cost of a dog for her.  Now, she is once again out and about and no longer suffering from the crippling depression she had before she found her dog, whose name is Olivia.

Although Andrea got her service dog mainly because of her severe cataplexy, it turns out that having Olivia has also helped her in her struggle with depression.  She even talks about how her dog has occasionally reminded her that she is not going the wrong way to get home when she is in what she calls a “Narcoleptic fog.”  (Apparently her dog even knows the command “Go home,” which I thought was quite impressive. :-) )

The article is exceptionally well written and also contains lots of information about service dogs, including what you have to do to get one and what it is like to have one. 

If you suffer from severe cataplexy like Andrea or are interested in service dogs in general, this is a must read.  Andrea is clearly very interested in helping other Narcoleptics with problems similar to her own, and she even included her contact information in the article, in case you are looking for more information.

But regardless of whether you might personally benefit from a service dog like Andrea’s, I found her story to be inspiring and full of hope. 

It also touched my heart to think that there are organizations and people out there willing to pay the $16,000 to change the life of one person in need of a special dog.  I think that is a beautiful thing. 

You might also say her story is a testimonial to the special bond between man and dog, and the amazing things that dogs are capable of.

And okay, I’m also just a dog lover who loves stories about dogs.

Discussion questions:  Does anyone have a service dog for Narcolepsy? (I know it’s very uncommon, but hey, I can ask, right?)  And for the rest of us, does anyone find that having a dog or other pet helps them better deal with Narcolepsy?

Things to look forward to in 2010

I thought that it was time that I share with all of you some of the new and exciting things I plan on doing with this blog in our beautiful new year of 2010. 

I will keep doing more of what I have already been doing – research articles, talking about my experience with Narcolepsy and my ongoing efforts, as well as sharing my knowledge of Narcolepsy and what I have heard from other Narcoleptics – but in addition, I have some new things I would like to make happen.

I am excited about the new year, and look forward to doing new things with this blog.  I hope that you will join me as I continue to talk about and explore the world of Narcolepsy. 

Here is the list of things I’d like to do in the Year of the Tiger (2010!):

1. guest blogger features: I would like to have some fellow Narcoleptics write as guest bloggers on issues that I don’t know much about (or which I feel they know more about).  Some of the topics I have been thinking about having guest bloggers for include  cataplexy, pregnancy with narcolepsy, and stimulants other than Ritalin, Concerta, and Provigil, among other things.  Although I know some about these topics, I do not have a great deal of personal experience with them, so I would ideally like to get other Narcoleptics to write about their experiences and knowledge (if they feel comfortable sharing).  
2. book reviews, including a review of the only Narcolepsy book written by a Narcoleptic, at least one book on getting a better night’s sleep, and a book on napping suggested by a reader (thanks for the suggestion!)
3. a series on good sleep habits, including me personally testing out the 4 week “sleep camp” plan that’s in a sleep book I have
4. get involved in this year’s National Sleep Awareness Week, if possible.  At the very least, I will have to write a few articles covering this week, including how people can participate.
5. expand upon my list of useful Narcolepsy resources (which currently is very small) to include things like support groups
6. share with you my struggle to lose weight and live a healthier life
7. create a collection of easy, healthy recipes requiring minimal prep, tested by me (and my husband).  Ideally, I would like to have some of the recipes contributed by readers.
8. I eventually plan on trying the gluten-free diet (again; I tried it briefly once before) to see if I am sensitive to gluten, but first I have to start cooking regularly and keeping the kitchen clean enough to make this possible.  I don’t think I have much chance of success on this diet if I can’t cook dinner every night and keep the kitchen clean, as it can be hard to eat gluten-free at restaurants.

What do you think?  Are there other things you are hoping to see this year on this blog?  I would be happy to hear your ideas.

Migraines, my new cooking resolution, and the new migraine-free cookbook

I have been anxiously awaiting the release of Heidi Gunderson’s Migraine-Free Cooking! cookbook for months now, but it is finally here!  I am so excited.

Now, I own a lot of cookbooks (most of which I never use), so I generally get in trouble with my husband if I buy more of them, but this one is unique so I figured he couldn’t really say anything, he he.  This book uses ONLY ingredients that are listed in Buchholz’s Heal Your Headache book as not causing migraines.  And considering how long the list of banned ingredients is, cooking without any of the banned ones is no small feat.

If I could have asked Santa for only one thing this past Christmas, it would have been the release of this cookbook.  Because this cookbook is a godsend for me as I struggle in my quest to get rid of my migraines. 

I have been trying the Heal Your Headache migraine elimination diet for some time now, but I haven’t been good about following it perfectly and so it’s not surprising that I’m still getting headaches.  Lots of headaches.  But the hardest part of doing it (other than getting myself to cook and not eating out unless I know all the ingredients in the food) is figuring out how to cook tasty, normal recipes without any banned ingredients (if you randomly selected ten American recipes, I’d bet that at least a third to one half of them would include banned ingredients).

You’d be surprised, but it seems that onion or onion powder, lemon, or special vinegars seem to be in everything I want to cook.  One of the most annoying things was that I couldn’t find a single salad dressing recipe that wasn’t “bad” in some way.

Enter this cookbook.

Now it just remains to be seen how tasty the recipes will be, but I have faith.  (Tonight I’m supposed to make the turkey meatloaf.  We’ll see if that happens, lol.)  Although there are basically no pictures and from the cover it doesn’t look like a normal cookbook at all (I’m not picky, but don’t cookbooks normally have a food stylist?  at least for the front cover?), it has recipes for all sorts of things, which is all I really care about.

There is a hummus recipe (no lemon!), chili recipe (no beans!), a lasagna recipe, a shepherd's pie recipe (no cheese!), a meatloaf recipe, salad dressings recipes, and a bbq sauce recipe… and that’s only the beginning. 

Did I mention that I was a little bit excited? lol. :-)

Some of the recipes require more work than I would like, but the fault there lies with the diet itself and not with the cookbook.  I don’t like the idea of always making my own salad dressing, for example, but if I’m going to stick with this diet until my headaches go away then that is just something I’m going to have to deal with.

If any of you are on this migraine elimination diet or thinking about going on it, you should definitely check out this book.  Unfortunately, it is $19.00 on Amazon, even though it is a paperback, and there are no used copies available, but I thought it was worth it.  (I even paid for one day shipping so it would come before I left the US!)

If you are interested in “migraine-free recipes,” here is the link to Heidi’s website, which contains some of her recipes.

Happy cooking!  And for those of you suffering from migraines, cheers to the hope of a migraine-free future in 2010. 

I’m not giving up, migraines.  Your days are numbered.

P.S. Going along with my New Year’s Resolution to cook five times a week in 2010, I made dinner last night – and get this, I made garlic french fries from scratch.  HEALTHY garlic french fries.  From scratch.  It took, well, at least an hour or so including the cooking time and making the hamburgers, but I was very pleased with myself.  (I’ve only been planning to make these for, I don’t know, a long time, lol.)  And yes, they were delicious. :-)

an awesome way to raise money for Narcolepsy research

Yesterday, I decided that it’s really too bad that I don’t live in Massachusetts – more specifically, Boston, Massachusetts. 

It’s not that I like really cold weather or cities that have a river flowing through it or places with a lot of historical significance… no, it’s quite simple, really: Boston is home to a really cool non-profit that is doing some serious (and innovative) fundraising for Narcolepsy research.  In case you haven’t heard (I hadn’t!), Boston is home to Wake Up Narcolepsy.

Although Wake Up Narcolepsy has only been around since 2008, it has already managed to raise a significant amount of money, enough to have the Narcolepsy Network give Founder Kevin Cosgrove its “Public Outreach Award” this past October. 

This organization raised $35,000 through charitable fundraising events in 2009, which in and of itself is a remarkable achievement.  :-)

Wake Up Narcolepsy is currently involved in an effort that I thought was really cool: they have four runners participating in the Boston Marathon 2010 (which takes place in mid-April), with each runner working to raise money for Narcolepsy. 

Yesterday, one of the runners e-mailed me and mentioned their effort to raise money for Narcolepsy research, which is how I was privileged to find out about this (thanks, Julie!).  You can find out more about the four runners and how much money they have raised by visiting this page.  You can also follow Julie Flygare’s experience training for a marathon while having classic Narcolepsy at her blog.   

As of today, Julie has raised $780 for Narcolepsy research, which I think is quite impressive.  It’s no small feat to train for a marathon, and I think it’s great that four people are doing it to help the cause of Narcolepsy research (and in turn, Narcolepsy awareness).

It is only because of the Narcolepsy research of the past that we have the medications we have today, and we’re going to have to invest in a lot more research to find the medications of the future.  The Narcolepsy research for today is, in essence, our hope for a better future for Narcoleptics – and maybe someday, a cure for Narcolepsy.   

If you are interested in giving money to Narcolepsy research, you can do so through Wake Up Narcolepsy on their website.

Good luck to Julie and the other runners, and keep up the good work, Wake Up Narcolepsy!

Now you understand why Boston is awesome… :-)

Research: skin temperature and core body temperature affects sleepiness and vigilance in Narcoleptics

A few years ago, a very interesting study on Narcoleptics was released.  According to the study, daytime sleepiness can be decreased and vigilance can be improved by “mildly” altering the skin temperature and core body temperature of people with Narcolepsy.  The study used thermo suits to alter the skin temperature of the subjects and hot or cold drinks to alter their core body temperature.

Here is an excerpt from an article on the study:

“According to the results, patients were better able to maintain vigilance when core body temperature was increased than when it was lowered, indicating that vigilance in narcolepsy can be altered simply by altering the temperature of food and drinks. Also, the ability to maintain wakefulness was better when skin temperature was lowered than when it was increased. Therefore, the process of falling asleep in narcoleptic subjects was able to be influenced by gently cooling or warming their hands and feet.”

According to the article, when core body temperature is high during the day, skin temperature is low, resulting in optimal alertness and vigilance.  Conversely, when core body temperature is low, skin temperature is high, resulting in optimal sleep and increased sleepiness.  The study found that in Narcoleptics, the temperature of their hands and feet (i.e. their skin temperature) was at a high level during the day, a level normally seen in non-Narcoleptics right before sleep.  Thus, by bringing the temperature of the hands and feet of Narcoleptics to a normal level, they were able to increase the subjects’ alertness and vigilance.

I would suggest that you take the time to actually read the study, as it contains more information on this and explains it very well.  It also suggests some ways that one might try to do this oneself at home, namely, by cooling ones’ feet and hands during the day and warming them during the night – and also by increasing core body temperature during the day using hot drinks and decreasing it at night using cold drinks.

Perhaps one day this study might lead to something that might help Narcoleptics to stay awake and/or fall asleep at night.  Although the study only contained 8 Narcoleptics, I thought that it was a very useful study, with very surprising results.  I had never really thought that my skin and body temperature could affect my vigilance and alertness, although I had noticed that temperature is important to me when it comes to falling asleep at night.

One of these days I’m going to have to try out the advice suggested by this study and see if it helps.

What do you think?  Has anyone tried the advice in this article?  Have you noticed that your core or skin temperature affects your alertness and vigilance during the day or how you sleep at night?

P.S. I’m finally back in Berlin, so my blog entries should become more regular again :-).

Alternative and “natural” treatments for Narcolepsy

It’s not surprising that many Narcoleptics (myself included) are looking for ways to treat Narcolepsy that don’t require filling a prescription from a doctor.  After all, there isn’t really a (traditional) Narcolepsy medication that doesn’t have some sort of major drawback associated with it – and that’s not even touching on how much they cost (usually,it’s a lot). 

Xyrem and Provigil (the “good” Narcolepsy medications) both have lots of side effects associated with them.  With Xyrem you have to jump through all sorts of rings of fire just to get it, not to mention that it contains GHB (which makes it sound a bit scary).  Plus it’s expensive, especially if you don’t have really good health insurance.  Provigil interacts with hormonal birth control, and we honestly don’t know exactly why it helps people.  Then there’s the traditional stimulants, with their host of side effects, the problem of tolerance over time, and highs and lows.  And finally we have anti-depressants (used to treat cataplexy), which have their own side effects, not to mention that it’s not fun to take a mood altering drug for something unrelated to depression/mood.

Considering all of this, who wouldn’t be interested in finding something that is (in principle) safer, cheaper, more natural, and easier to get? 

And if you are not satisfied with how you feel taking your current medication, who wouldn’t be interested in other things you could take that are not “bad” or as “bad”?

Which brings us to today’s topic: alternative medicine for Narcolepsy.  I have seen many people ask about this on Talk About Sleep, so I thought it is something I should address.

People have many different reasons for asking about alternative medicine (or “natural” methods).  Some people are uncomfortable taking traditional medications or have given up or failed to find something that worked for them in traditional medicine.  Some people are looking for medicines that don’t cost as much.  Others cannot take traditional medications (for example, because they are pregnant), while some are just looking for something to add to the medicines they already take in the hopes that it will make them feel better.  Regardless, the question remains the same: What alternative treatments are out there for Narcolepsy and, more importantly, are they worth trying? 

With those words, we plunge into the confusing, murky, and unregulated waters of “alternative” medicine. 

Although I don’t know of any one thing that I would recommend in place of traditional medications, I will do my best to touch briefly on what I do know about what’s out there and whether you should bother- or rather risk - trying them. 

There are many alternative treatments out there.  The big question is: should you try them?

Before I give you an overview of what I know about alternative medicine, I wanted to say that I consider these options to be supplementary, not primary, treatments for Narcolepsy. 

In other words, I don’t know of any alternative treatments for Narcolepsy that I would recommend in place of the traditional medicines.  (I’m sorry, but it’s the sad truth.)  Nor would I recommend that you leave your sleep doctor in search of a “natural” doctor. 

Yes, none of the Narcolepsy medications are great sounding, but there is a reason why most people take them anyway: the simple truth is they work far better than anything else we have available. 

You may not like taking GHB (the main ingredient in Xyrem), but for some people it works.

It’s up to you, but I wouldn’t abandon traditional medicine when it comes to Narcolepsy unless there is some reason why you can’t take medicine (for example, if you are pregnant).  Personally, the only time I would ever consider stopping taking medication would be if I wanted to get pregnant or was pregnant (and then I wouldn’t be taking any non-traditional alternative pills or supplements either). 

Most of us are just trying to find something that works without hurting us period, not to mention something that is more natural/ non-traditional.  I may buy organic strawberries because I worry about ingesting chemicals, but I’m sticking with my Concerta. 

Having said that, here is my alternative medicine for Narcolepsy 101 (the concise version):

1. Traditional Chinese Medicine (or, TCM): I went to a specialist in TCM, a form of alternative medicine, a few years ago, and she was somewhat helpful.  I went to her not only for help with my Narcolepsy, but also for migraines and weight loss.  She gave me a very restrictive diet plan (which was so extreme I didn’t follow it for long) and I had a bunch of acupuncture sessions with her.  I did think that the acupuncture helped my Narcolepsy a little bit but it was very expensive and painful.  I stopped seeing her after maybe 8 sessions; I just couldn’t bear the thought of the needles.  It made me very anxious – and I’m not afraid of needles.  Apparently I am more pain-sensitive than most people.  I know that TCM also can involve prescribing herbs and such but I didn’t do any of that.
2. Naturopathy:  There are many kinds of “natural” (ie not an M.D.) doctors out there.  TCM is only one form of alternative medicine.  I did see a naturopath in eighth grade who did this cool test involving putting food on my stomach and having me raise my leg, and he gave me a bunch of diet regulations.  As I didn’t want to be there in the first place, I didn’t follow the diet he gave me, but I have heard a few people say that seeing a naturopath was helpful to them.  Someday I would like to have someone do that food test on me again (to see if I have any food sensitivities), although right now I’m not willing to spend the money on it because I’m not sure how helpful it would be.  I wish I had kept the recommendations from that doctor though.
3. Homeopathy: I went to see someone once but it didn’t help me.  I know that some people believe in it, but I personally would suggest that you avoid it.  It is not proven to be helpful, and isn’t at all scientific.  Apparently homeopathic remedies are mainly water.  One article I read on it said that the average homeopathic remedy is so distilled that it is as if you put one drop of the substance that supposedly will help you in all the oceans of Earth.  If you are considering trying this, you should definitely read this article (written by the BBC).  I read this article while I was seeing a homeopath, not realizing that in scientific circles homeopathy is basically considered to be quack medicine.  After reading more about it, I stopped going.
4. Dietary changes: Some Narcoleptics find that their Narcolepsy is better if they change their diet.  Some people have a food intolerance or sensitivity (for example, to gluten) and find their Narcolepsy is better when they avoid that food or food group.  I have heard other people talk about limiting carbs or going on a low GI diet.  I think don’t think there is anything that works for everyone, but this is one of the safer things one could try, as it doesn’t involve ingesting anything you wouldn’t normally ingest.
5. Vitamins and supplements: I have heard many Narcoleptics talk about how vitamins and supplements help them on Talk About Sleep.  Recently people have been talking about vitamin D supplements, but there are others that I have heard people talk about (such as B vitamins).  I personally don’t take any supplements to help with Narcolepsy, although I may do so in the future.  Some people have had vitamin testing at the doctor to see if they have a deficiency in something.  If you decide to take something, please research possible side effects and interactions beforehand.  Just because it’s over the counter doesn’t mean it can’t hurt you.
6. Acupressure: I have tried this in the past and I think that it helps some, although I haven’t been doing it lately.  I have a book on doing acupressure on oneself and I used the Chronic Fatigue Syndrome and better sleep points, as there was no Narcolepsy section.  If you are interested in acupressure, I would recommend this book. 

Wow, this is turning out to be a very long article (one of those, “you wouldn’t think it, but this took me hours to write articles,” lol). 

As a final note, please take alternative medicine as seriously as you do traditional medicine.  As I mentioned before with vitamins and supplements, remember that just because it’s “natural” or over the counter doesn’t mean that it’s safe or can’t hurt you.  You should always check to see if there are any interactions with your medications before trying something, and do your research.  Medicine is still medicine, regardless of how you label it, and even something like vitamins can cause harm.

Also, because alternative medicine isn’t regulated like traditional medicine, you have to be extra careful about both safety and not being ripped off.  Someone must click on those “all natural Narcolepsy cure!!!” ads on google, right?  Don’t be fooled by these quack remedies, the siren song of medicine.  But wait, you already knew this, right? :-)

Have you tried any of these alternative treatments?  If so, did you find that what you tried helped you?  Did I miss a treatment that you think is useful?  

Happy New Year!

Happy New Year, everyone!  I hope that all of you enjoyed the holidays/holiday season and some much needed vacation.  Me, I’m psyched about the new year and am itching to be back in Berlin and back to my normal routine.  Vacation is fun, but after awhile I start to… miss working (lol, really!) and everyday life.  And I miss making my daily blog posts and hearing from all of you :-).

I thought I would share my New Year’s Resolutions with you.  I made them with my sister, and we tried to make them doable and not overwhelming. 

1. I will cook dinner at least 5 times a week.  (I need to lose a lot of weight, and I think that eating out all the time and not eating real meals is one of my biggest challenges as far as this is concerned.  Also, although I don’t like the cooking part, there is a sort of comfort and satisfaction in eating a home cooked meal that you don’t get from eating fast food or in a restaurant.)
2. I will try out the Flylady book plan for 30 days.  (I’ve never managed to finish the whole plan and I figure if I can make it work for 30 days, it will be a habit and I will hopefully be able to keep it up.  Flylady is a housecleaning program for perfectionists (messy perfectionists, that is) and the author breaks the plan down into”baby steps” to make it more doable.  I know that I (and my husband) would be happier if I could keep the house (or at least the kitchen) clean, and I think that if I could manage to keep things clean and organized a lot of things in my life would be easier…)
3. I will post something on this blog at least 5 times a week.  I will also keep learning about Narcolepsy and sleep so that I will continue to have things to write about and share with all of you.  :-)
4. “bonus resolution” (as my sister called it): I want to find a hobby that excites me and stick with it.  I’ve been toying with the idea of learning or re-learning a musical instrument…

What are your New Year’s Resolutions?  Are they realistic?

Doze-Alert, a device that combats “drowsy driving”

 

One of the unexpected perks of writing this blog has been that I have been learning new things while I do research for blog articles. 

Today, for example, I ran across a one liner about a device called Doze-Alert while researching the ideal length of a nap.  I still can’t believe that I never heard of it in all these years I have been dealing with Narcolepsy.  It is awesome! :-)

What is this awesome Doze-Alert?  The Sav-A-Life Doze-Alert is a device that slips behind one ear.  When your head falls forward as it does when you fall asleep or nod off, the device will make a buzzing noise, causing you to wake up and bring your head back up.  Then, knowing you are too sleepy to drive, you will be able to pull over ASAP and take a nap or let someone else drive, as falling asleep while driving is extremely dangerous.

The good news is that the device is reasonably priced (at least, it is in my opinion). The device is only $40, plus $15 for batteries. You can also adjust what angle your head needs to be at for the device to go off, which is helpful.

Here is a picture of the device:

The device is not designed for Narcoleptics or people with sleep disorders.  Rather, it is meant to be used by your average driver to prevent accidents and deaths from fatigue and drowsiness.  According to the National Highway Traffic Safety Administration, fatigue causes an estimated 100,000 crashes and 1500 deaths each year.  Clearly, Narcoleptics are not the only people who should be worried about drowsiness while driving. 

As Narcoleptics have to be especially careful about feeling drowsy while driving, I thought that the device was something we should all know about. This device sounds like it would be a good thing for many people to have, not just Narcoleptics.

While I’m on the topic of drowsy driving and Narcoleptics, I thought I should add that Narcoleptics aren’t necessarily more at risk for fatigue related accidents, assuming that they are driving with a doctor’s permission.  In fact, Narcoleptics who are under a doctor’s care and taking the necessary precautions might actually be less at risk for fatigue related accidents than non-Narcoleptics.  My sleep doctor once told me that Narcoleptics (under a doctor’s care) are actually less likely to get in fatigue-related automobile accidents because they pay much more attention to whether they are sleepy before and while they are driving and they are less likely to ignore their sleepiness and keep driving.  Whereas someone without Narcolepsy might say to themselves, “I know I’m exhausted and nodding off but I’m fine to drive home anyways (thinking they can keep themselves from falling asleep when in reality they can’t)”, a Narcoleptic would recognize that they aren’t going to be able to stop themselves from nodding off when they are very tired and will take a nap before driving, find another way to get home, etc.

For general information on drowsy driving, you can visit drowsydriving.org.

What do you think?  Do you struggle with drowsy driving?  Do you think this device would be helpful?  Has anyone actually tried this device or know of someone who has?