Using music to boost your energy

You may have noticed that I haven’t written anything for over a week now(!)…

Fear not, dear readers, I have not abandoned my dear blog!  Rather, I’ve just been too busy traveling and spending time with my family to blog.  I also have been having trouble getting internet access, especially when I was at my mother’s house.  Unfortunately, I expect that my family will continue to drag me away from my computer up until I’m back in Berlin on January 10th, but I will aim to post at least once every few days in the time being.  I hope that everyone has been enjoying the holiday season.

Now, on to my first entry in way too long! :-)

Last week, I re-discovered an energy tip that seems so obvious now that I feel a little silly mentioning it, but here it is: you can use music to give you an energy boost.  More specifically, playing music can sometimes make dreaded chores or boring, monotonous tasks palatable and even (gasp!) somewhat enjoyable. 

I don’t understand exactly why this works for me, but it does (when I actually bother to use it).

You know how it is: some days you drag yourself out of bed and it seems hard to find the energy to take a shower, not to mention blow dry your hair, get dressed, do your makeup (for girls), and eat a healthy breakfast.  It’s like your whole being cries, “No!  Please don’t make me do that!  I HATE doing that!  I’m soooo tired!  Do we REALLY need to?”  Argh. 

Or, you come home exhausted after a day’s work and collapse in bed for a nap, only to wake up feeling less tired but still drained of energy.  The thought of cooking dinner makes you cringe – hey, even the fastest dinner you can think of takes time and effort and you HATE making dinner (kudos to you if you love it!).  Maybe you should just make a frozen pizza.

Or maybe you should try playing some of your favorite (preferably upbeat) music while you do said dreaded task.  It just might make it a bit more enjoyable and help you to get over that energy lull (or at least keep you out of bed).

This works the best if you really like the music you are listening to and it’s upbeat (i.e. not a ballad or a classical sonata).  Extra points if it’s the sort of music you can’t help jamming to, singing along to, or dancing to. 

It needs to be something you’ll enjoy listening to enough to make whatever you’re doing more enjoyable.  You may just find yourself forgetting about how much you hate to do the dishes – or not, lol, but at least you’ll be singing and dancing around the kitchen (if you’re like me).  You may find that the time doesn’t drag by as much, and that you feel happier.  Double extra points if the music is new and awesome, the sort of music you just can’t stop listening too :-).

Of course, even with music you will still have to drag yourself to start said task, but it might just be a little easier to get started if you add in this factor (assuming that you aren’t doing this already).   

I tried this a long time ago with getting myself to cook dinner or clean the kitchen when I just didn’t think I had the energy to do it, and it worked pretty well, but I didn’t keep it up and then my ipod went missing, so I kind of forgot about this.  I recently re-discovered this when I needed to take a shower before going out to dinner but just wanted to lie in bed.  I decided that I would play some music while I did it, which made the task seem not so daunting, and I ended up having the energy to do my makeup all nice and everything.

I even came up with a way to listen to music when I’m in the shower and getting ready/blow drying my hair/etc. : I just put my laptop on the washer or dryer in the bathroom and use my itunes player on the highest setting.  There you go, music for boring bathroom tasks without a stereo system or speakers in  your bathroom! 

I personally hate taking showers in the morning when it’s cold and I’m tired, but this way I can sing along to music when I’m in the shower, which I think is awesome.

I’m not sure exactly why this works for me but I can take a guess.  My guess is that turning on some music helps improve my mood and gives me something fun and enjoyable to focus on (as opposed to the focus being on how tired I feel and how much I don’t want to do xyz.)  Also, for some reason, listening to upbeat music that I love can make me feel more upbeat and alert and energetic.  I’m sure that somewhere there are studies that show that music can influence not only your mood but also your energy levels, although I didn’t find anything using a quick google search.  I’ll have to keep an eye out for such a study…

Has anyone tried this?  If yes, have you found that what I described works for you?  What do you think?

P.S. Merry belated Christmas to everyone and Happy Holidays!

Provigil and birth control (plus some lessons on taking medication)

One of the reasons I decided to write this blog is that one of the things I’ve learned over the years is the importance of having general knowledge about Narcolepsy treatment (as opposed to, say, only knowing something about the medication you are personally taking and what your doctor tells you).  Over the years, I’ve learned a lot about Narcolepsy and Narcolepsy treatment, some of it from my sleep doctor and from personal experience, but much of it from talking with or reading about other Narcoleptics.  (This is especially true after having had Narcolepsy for so long: I know the basics but I am always learning more from other people.)

I mention the importance of general knowledge because there have been times when I have learned things that later made a big difference for me, even though at the time I did not think that it was particularly important.

The main example of this that comes to mind brings me to the topic of this post: Provigil and birth control. 

When I was a junior or a senior in high school, I met another Narcoleptic for the first time (at least, my first human Narcoleptic – my dog had Narcolepsy – more on that another time).  My mother arranged for me to have a meeting with the girlfriend of a family friend, who had Narcolepsy.  She was in her late 20s, and we talked for awhile.

She told me about how she deals with Narcolepsy: she was seeing a naturopath and following this low GI diet, but not taking any medication other than vitamins and such.  At the time, this worked well for her.  (Last I heard, she takes Xyrem.)  

I was taking a combination of Concerta and Provigil back then, and I asked her why didn’t she take Provigil.  I believe she might not have wanted to take traditional stimulants for some reason or was unable to do so. 

Her answer surprised me: she can’t take Provigil because she takes the birth control pill and Provigil makes that less effective.

This was news to me.  Here I had been on Provigil for multiple years and I had never heard about this.  Fortunately, I was not taking birth control and had no plans to, but my doctor had never mentioned that I shouldn’t combine the two.  I was shocked that I didn’t know something like this about my own medication.

I later asked my doctor about this when I decided to start taking birth control (a few years later), and I discovered that he had forgotten to mention the interaction.  At the time he put me on the drug, I was only 15 and being very shy, no boys were in the picture (and wouldn’t be until college), but I still should have known about this.  Having learned about the interaction from this one conversation with another Narcoleptic, years later when I wanted to take birth control, I knew I had to ask my doctor about whether I should still take Provigil, and in the end I decided to not take the drug anymore.

I hope that I would have found out about this interaction anyways before adding this medication, but it scares me that I might not have. 

Which brings me to a few more general lessons about taking medication:

1. Always read the information that comes with your medication, as you might learn something important. Doctors only have a limited time to spend with us and they might forget to mention something important or they might not know about something.  (Had I read the Provigil medication information in detail, I would have known about its interaction with birth control.)
2. It’s not a bad idea to learn as much about Narcolepsy and treatment as you can, even if you are satisfied with what you are currently doing.  You might just learn something that will be useful in the future.
3. Always check to make sure there are no drug interactions you aren’t aware of when you are adding a new medication.  It would probably be a good idea to re-read the information that comes with your other medications when you add a new one to make sure that there is no interactions you have forgotten about.  This seems like obvious advice, but I know I personally haven’t always done this.

Finally, I firmly believe that when it comes to medical problems (and especially Narcolepsy), knowledge is power.  That’s one of the main reasons why I’m writing this blog, and I suspect that that is why some of you are here: not because you are searching for one piece of information (say, experiences with a certain drug) but because you are looking for information in general in the hopes of finding something that is meaningful or helpful to you.

I think it’s good to keep this in mind when you read this blog: although you might not be looking for information on a certain topic, I believe that knowledge itself broadens your options and may prove useful some day. 

I think that there is a lot that we can learn from each other, and I’m enjoying sharing my story and experience and hearing from all of you. 

I only wish I had started this blog a long time ago!  :-)

Thoughts? Comments?

P.S.  I am so excited: on Saturday I go to the US (first time in two years)!  Oh, and yesterday I discovered some new music: Keane’s Perfect Symmetry.  If you like Keane, then you must check it out because it is AWESOME (way better than there other albums, in my opinion).  I can’t stop listening to it.  :-)  Sorry, I just had to share!

Happy Wednesday, everyone!

Nap like me (part 1): creative ways to fit in that nap

As I’ve mentioned previously, I take two 25 minute naps each day (one at noon and one at 3 pm) and I take them very seriously.  This is one of the main ways that I cope with Narcolepsy, and it is this that allows me to lead a normal life. 

For me, these naps are essential, like air or food or water.  Without them, I would probably sleep most of the day and/ or be extremely tired, often nodding off and fighting to stay awake.  I would have serious trouble getting things done, not to mention driving a car or walking down a flight of stairs.  Without them, I simply would not be myself: overly emotional, slow both mentally and physically, and seriously tired.

I don’t feel like I have a choice, when it comes to my naps.  It’s a necessity.

For me, noon is not lunchtime but ‘time to squeeze in a nap’ time.  Lunch can wait a bit, my nap cannot – at least it cannot wait more than a short period of time without me paying a very high price.  I may not always be perfect about my naps (for example, sometimes I’m bad and sleep longer than my designated timeframe), but i am generally pretty good about it, especially if there is something happening afterwards the makes it especially important that I be awake, alert and at my best.

Here is a list of some of the strangest and most uncomfortable ways I’ve managed to fit in a nap over the years:

1. At an amusement park: I took a nap on a bench once, with my dad waking me up
2. At the zoo: Multiple times I’ve taken a nap lying on a bench – or putting my head down on a picnic table, with my head on a sweater/jacket.  I did this once with my sister and once with my husband.
3. Before a high school tennis match: I once took a nap lying on the pavement (!) next to the tennis courts with my head on a sweater before a junior varsity tennis match.  (We had an away match and for some reason I hadn’t been able to take a nap before we got there…).  As you can imagine, this one was not very comfortable.  I cringe just thinking about it.
4. During lunch break at a Model United Nations Conference (at another school) in high school: One time I had to take a nap curled up in my formal attire in an auditorium seat (kind of like the ones in movie theaters).  The auditorium was empty, it was lunch time, and I needed my nap: but I can tell you it’s no small feat pulling this one off, considering that I was wearing a very very short skirt.  lol.
5. On a high school trip with a bunch of kids to Italy (during the summer): I didn’t know these people very well, so I had to make do, as far as my naps went (as we were a very large group).  I actually put my head down on the table of one Italian restaurant and slept while we waited for our pizza to arrive.  This is not a very fond memory: these people were not my close friends, and they continued to talk and drink and so forth all around me while I was trying to sleep.
6. At my wedding: I took my noon nap on the table of the restaurant during the champagne reception, as you may remember from my first post.
7. During a 6 week cultural, leadership and business program at my university during the summer: I had to take a nap in a free meeting room in the business center with a “bed” made of two chairs (i.e. my head and shoulders on one chair and everything else on the other).  NOT very fun – and I had to do this many times (whenever we had days with lots of people coming to speak with us).  Unfortunately, this was the only way we could come up with, but fortunately I only had to do this for my noon nap.
8. On a trip with my then boyfriend (now husband) to Budapest, where my husband proposed: I was completely exhausted and we couldn’t find anywhere decent for me to take a nap, so I finally ended up taking nap on a grassy stretch next to the side walk with my head on one of our jacket and the other either on the ground or covering me (it wasn’t very cold).  I think we had got caught up in seeing stuff, to the point that I was breaking down from not having a nap – so we just stopped.
9. In an art museum: on a bench with my head on my husband’s shoulder, with him keeping time.
10. In IKEA in Berlin, waiting in the area where you arrange your stuff to be delivered: We had been there for many hours (this was when we had just moved here) and I was desperately in need of a nap.  There just happened to be large bed display right there, so I kind of half laid down (my feet on the floor, but I was lying back).  Unfortunately, two different people thought this was really strange and woke me up.  A little boy kept coming up to me and speaking German and I knew basically no German and my husband was away for a moment.  I think he thought maybe I was sick or something, I don’t know (I couldn’t understand).  Then an employee came up to me and woke me up (after I was sleeping for, oh, 6 minutes) to ask me if I was sick or what have you.  I finally figured it out: the employee was worried that I had fainted (lol)!  Didn’t it occur to them that maybe I’m just waiting and really tired?  I was quite annoyed. 

Some of these aren’t THAT strange, but they are not things that your average person does (at least, I don’t think they do).  The way I see it: sometimes you just need to take a nap, and you have to make do.  So what if strangers think I’m weird or sick or what have you, so long as they leave me alone.

I should note that if you ever want to try such napping strategies as these, it’s best if you have someone sitting with you so other people will leave you alone (or if they insist on checking on you, this person can explain that yes, the sleeping woman is fine, she just needs a short nap because she has a sleep disorder). 

I would especially recommend you do this with another person if you are here in Germany.  Most of the times that I’ve tried to take a nap on a table by myself in cafés or restaurants here in Germany an employee has bothered me to see if I’m sick or what is wrong.  A few times I had trouble understanding why they were waking me up (I didn’t understand why they were waking me even after I had explained what I was doing), but I think they just were not okay with me sleeping for a little bit, even though I was a paying customer.  How annoying.

It’s occurred to me a few times that perhaps if I want to do this I should put up a little standing sign in German- or even better- German AND English.  It would read: “Hello.  I am currently taking a 25 minute nap here on the table because I have a sleep disorder called Narcolepsy.  Please leave me alone.  I am not sick/I have not fainted/etc.  Thank you, sleeping woman.”

Lol.  Don’t worry, I’m only half serious.  :-)  If I thought such a sign would work, I would definitely try it, but I think it would mainly cause lots of people to come near me in order to read the sign, which would make it difficult for me to take a nap.  In other words, it probably wouldn’t help much.

Do you nap in strange places?  Where are some of the more unusual places you’ve slept?

(P.S. Just so you are aware, unless I mention otherwise, you can assume that the pictures that go with each post are not my own (i.e. the sleeping woman is not me.) 

international travel and combating jet lag

This year, I got lucky.  I’m going to the US to visit my family for a few weeks for Christmas, and I ended up getting a business class(!) ticket on Lufthansa.  For various reasons, we ended up booking my flight much later than usual, and could only get the flights I needed using business class.  My husband was very jealous: he flies a lot for work (which has the benefit that we almost always fly using his miles), but he has only ever flown on an international flight with them once – and apparently it was awesome.

Me?  I thought it sounded cool, but I got really excited when I found out about two things: your chair reclines into an almost flat bed and you can take off your shoes and wear slippers they give you (I love slippers).  Multiple course meals designed by 5 star chefs?  Nope, this Narcoleptic is psyched about the “bed”!

If we ever become really wealthy, this is one thing that it might be worth paying extra for… lol.  I generally don’t sleep the greatest on planes anyways, except when I am ridiculously tired.  I sleep so lightly at night that the littlest thing wakes me up. 

Maybe I’ll be happier on this flight…

Anyway, I am psyched about business class and visiting my family, but I am NOT looking forward to the jet lag.  I’m not sure why this is exactly, but it takes way longer for me to adjust to time changes than other people (I’m guessing this is Narcolepsy again). 

The last time I flew back from the US, it took me at least a month to stop being extremely sleepy.  A month!  Even a shorter flight from California to Connecticut has a big effect on me for weeks.  It makes me think hard before I fly on a plane – business class or no.

But this year I decided I’m going to try something I haven’t done before, in hopes of combating the jet lag or at least making it not as bad: I am going to try using my light box to adjust myself.

(this is my light box above)

I’ve found other tips about adjusting, and I’ll do my best to use them, but I think this light box therapy idea is something that might make a huge difference.

Here is the article with the advice on how to use a light box to help you adjust to a time change due to travel.

I’m excited.  I hope it works! 

I’ll get back to you when I use this advice next week, as to whether it helps me or not.

Does anyone also struggle with unusual jet leg when you travel?  Have you tried this light therapy idea?

Christmas gift ideas for Narcoleptics (or, for yourself!)

 

1. Good Night: The Sleep Doctor’s 4 week program to better sleep and better health.  This is an excellent guide to getting a better night’s sleep.  I own it, and it is full of interesting information and lots of tips.  It is not written for people with Narcolepsy, but I still think it’s a helpful book.
2. a cool alarm clock other than the ordinary one: I would like to try the one that rolls onto the floor so you actually have to get up (for example, Clocky).  Sunrise clocks (which have UV light to wake you up) also sound cool, but I don’t think my husband would be happy if I tried that because he comes to bed so late and wakes up much later than me.  Here is an example of a sunrise clock. 
3. membership subscription to the Narcolepsy Network, a non-profit (Narcoleptic) patient support organization.  In return, you will get a quarterly newsletter, have the opportunity to attend the conference it hosts each year, and you will have the ability to request material on Narcolepsy that is not available on their website.  You will also help to support their continued efforts and organization.  I am not a member, but I intend to become one soon.
4. a slow cooker, an indoor George Foreman style grill, or other cooking devices that save time and energy when you are cooking.
5. a new, super warm and comfy blanket or a down comforter.  At least, these are two things I personally have been wanting!
6. Make it fast, cook it slow cookbook: more slow cooker recipes than you could ever want!  (I am planning on using some of the recipes from the website at some point, but the blogger also has this cookbook, which sounds cool).
7. Heal Your Headache book by Buchholz.  This is the book I previously mentioned using, the one with the intense “migraine diet.”  If you get migraines and haven’t read it, I would highly recommend it.  And if you still need convincing: the book has an average review of 5 stars with 260 reviewers (!).  Seriously, I’m not joking.  I didn’t even realize that this was actually possible – I mean, even Harry Potter (book 7) only gets 4 1/2 stars… 
8. Aberrations, a novel by Penelope Przekop, whose main character struggles with Narcolepsy (along with a number of other things).  I haven’t actually read it, but I have read some good things about it.  So if you’ve been looking for a novel featuring a Narcoleptic, this might be for you…

Are you asking for anything Narcolepsy related for Christmas?  Do you have any gift suggestions of your own?

My Story, Part 2: Xyrem, anti-depressants, Provigil (again) and Concerta

 

When we left off in part one, I was only taking Concerta.  This post continues my story, especially as far as medications are concerned.

By the summer after my junior year, I was feeling really tired again and my doctor recommended I try Xyrem.

I was initially reluctant to try it because it sounded so scary (you want to prescribe me GHB, the date rape drug?!!), but my doctor convinced me to give it a shot – and I was sleepy enough to try anything he thought might help. 

At first, Xyrem worked well for me: I slept much better at night and felt much more awake during the day, although I still needed to take my Concerta and naps.

Unfortunately, I soon developed major side effects that led me to question being on Xyrem.  About 6 weeks or so after starting Xyrem, I developed strange stomach and bladder issues.   

Every day, I would wake up in the morning, get up, and be overcome with nausea, throwing up nothing.  As long as I did that each morning, I would generally be okay as long as I didn’t eat anything before noon.

I also had weird issues with bladder retention.  I needed to urinate extremely frequently, yet even after going to the bathroom I would often still feel like I needed to urinate.  You can imagine that this was highly annoying, and it took me some time before I figured out for sure that this was a side effect of Xyrem.  (I originally thought I had some sort of bladder issue and the college nurse’s office gave me some drugs, but I eventually realized it was just the Xyrem and nothing else).

As bad as these two side effects were, I was willing to put up with them in order to sleep well at night and feel awake during the day.  It wasn’t until February, when I decided to stop Xyrem to make sure it was causing these issues, that I suspected that I had two far more serious side effects: depression and anxiety. 

When I stopped taking the Xyrem, the stomach and bladder issues went away, but after 4 days I also felt like a different person.  It was like this giant black cloud of sadness and pessimism and worry was lifted off my shoulders.  Suddenly, I felt happy again.  I didn’t have to check that the door was locked three or four times.  Sure, I had problems, but I could deal with them instead of feeling things were hopeless.  I probably had minor depression and anxiety without Xyrem (although never diagnosed), but on it I was miserable.

Convinced that the Xyrem was causing serious psychological problems for me, I decided to stop taking it, only to go back on it one or two months later.  I felt better psychologically without the Xyrem, but off of it I struggled to stay out of bed, and my schoolwork was suffering.  With one month to finish my honors thesis and study for exams before graduation, I went back on it.  As I saw it, I didn’t have any choice – I had to get this work done and I was too sleepy to do it.

Once again on Xyrem, I finished my honors thesis and exams and graduated from college.  However, I didn’t even think about going off Xyrem.  Now that the pressure of school was over, the pressure to get a job was on.  It didn’t occur to me that I was once again depressed and anxious because of the Xyrem, and clearly I needed to be awake for my job search.  (Besides, when is there ever a good time to feel really really sleepy, right?)

I had forgotten what it was like to be off Xyrem, except as far as the sleepiness was concerned.  Unfortunately, I couldn’t see why I should get off of the drug until months later when my life was turned upside down. 

This was the problem with these psychological side effects: When I was on Xyrem, I would think, this (how I’m feeling psychologically) is just me!  These are MY negative depressed and anxious thoughts, after all, and of course I am miserable, it’s entirely logical – I have so many problems and anyone can see that I’m completely hopeless! 

Whereas off the Xyrem, I still had the problems, I just wasn’t overwhelmed by them, crying in bed and having trouble dealing with life.  (This is probably the best explanation why I kept going back on Xyrem even after I “knew” the associated side effects: while the other two side effects from Xyrem and the sleepiness I felt off the drug were obvious, it was hard for me to see the depression and anxiety as side effects because they became inseparable from ME.  Nausea and bladder issues were clearly side effects/problems, but it was more difficult for me to see the situation clearly when it was my THOUGHTS that were affected.)

So instead of stopping Xyrem after finishing my thesis, as I had planned, I made a big mistake: five days after graduation, still on Xyrem, I was offered a job in NYC – and I took it.  It wasn’t really what I wanted to do and I didn’t love it, but I was convinced that I had to have a job the second I graduated – and here I was already 5 days after graduation and this was my first job offer. 

I didn’t feel that I had any choice but to take it.  So I did. 

It was a doomed combination from the start.  To start, the job was a terrible match for me.  I hated the job, it wasn’t the sort of thing I was especially good at, and on top of that a bunch of things about it were a mess.  However, I probably could have dealt with it had I not been struggling with serious depression and anxiety, not to mention the loneliness of moving alone to a big city.

In a job that consisted primarily of bringing various giant folders from department to department as fast as possible, my anxiety was evident, and I had a hard time hiding my depression and insecurity.  (It seems ironic now – here I was working in a pharmaceutical ad agency for teams designing ads for anti-depressants while I suffered from depression myself.)  

After less than a month, I was fired, which came as a shock to me.  I had never lost a job, and I was devastated, although I was somewhat relieved to leave because I had been so miserable.

Having lost my job, I moved back in with my longtime boyfriend/now husband (who I had lived with before I moved away for the job).  I finally decided that I really had to do something about the Xyrem and my depression and anxiety, and unemployed, I had the time to do it.

Thus began a number of months of sleepiness and trying new medications.  I went on and off Xyrem a few times over the course of the month, still hoping that I was wrong about Xyrem causing  the anxiety and depression.  Although my doctor originally thought the Xyrem wasn’t causing my problems, I soon became firmly convinced.  As I figured it, it took four days on Xyrem to make me feel seriously depressed and anxious and four days off of it to make me feel okay.  (Yes, I went on and off of it enough times to know the number of days.)

To make a long story short, I proceeded to try a number of antidepressants and anxiety drugs to counteract the Xyrem side effects – including (but not limited to) Effexor, Proxac, and Wellbutrin – before giving up and deciding to get off the Xyrem in August (2006).  None of the drugs I tried both helped and didn’t have terrible side effects (namely, headaches). 

It was pure trial and error, and I was tired of trying a different medication every two weeks only to still feel badly.

All of this medication changing was proving hard to do long-distance, so I switched to a sleep doctor near me in Pennsylvania, hoping that seeing someone in person would make a difference.  (It didn’t really help, but it sounded like a good idea.)

Upon the insistence of my doctor, I tried taking a high dose of Provigil (I think it was 600 mg) plus my Concerta, even though I had previously tried Provigil without it being much help.  I was right: it didn’t help my sleepiness, I felt “foggy” and had weird vision issues, plus it gave me terrible headaches.

In the end, I ended up just taking the Concerta, but increasing my dose to 90 mg (54 in the morning and 36 at 3 pm).  This was a very high dose, but my doctor was okay with it so long as I didn’t do this long term.  Having messed around with so many meds for so many months, a solution that worked for a few years was fine with me.  I was sick of playing this med changing game.

About a year and a half ago, I reduced my Concerta dosage because I didn’t think the higher dose was helping me much.  First I cut my afternoon dosage (which is less important to me than the morning one) to 18 mg and then many months later moved back to taking just 36 mg in the morning.

Although I feel more tired than I would like to be and do not sleep well at night, I have come to accept that taking Concerta is my best bet for now.  Unfortunately, I have not come up with a better option as far as medication goes.  I still have not tried the higher class of stimulants, having decided against this because I have read that they have many more side effects.  I also suspect that it might be difficult to get a doctor here to prescribe them, as for some weird reason sleep, sleep doctors here in Germany don’t normally prescribe traditional stimulants for Narcoleptics (only Provigil and Xyrem).  As it is, my prescription for Concerta falls under “off the label use.”  We’ll see, perhaps I will look into trying one of these some time in the future. 

Knowing that I am stuck with my current treatment regimen for the time being, I am constantly looking for ways to make changes to feel more awake and have more energy.  I find that a lot of things affect my alertness other than medications and my naps, and I continue to search for better ways to cope with Narcolepsy.

You might say this blog is a reflection of my efforts, as if I had found my own personal Narcolepsy “miracle drug,” I expect that I would have a lot less to write about.  In fact, I’m not sure that I would even be writing this blog…

Thoughts? Questions?  Comments?

Thanks for listening!

My Story, Part 1: Cylert, Provigil, Ritalin and Concerta

Eleven posts into my blog, I thought it was time to tell you my story, as far as dealing with Narcolepsy is concerned.  Over the years I have tried a number of medications, and considering that I will certainly be talking about my experiences with each one in future posts, it seems that it would useful to know where I have been and where I am now.

As I have mentioned in previous posts, I was diagnosed with Narcolepsy at age nine.  More specifically, I was diagnosed with a relatively mild case of “classic Narcolepsy” (Narcolepsy with cataplexy) and very mild sleep apnea.  For me, the main concern was (and is) the EDS (Excessive Daytime Sleepiness).  I only have mild cataplexy, and it mainly happens to me when I am way overtired (namely, late at night or if I miss my naps).

For years, my treatment program was the same as the one given to me when I was diagnosed: the stimulant Cylert (first a low dose, then a bit higher but still not very high) and two scheduled naps.  Having first showed symptoms of Narcolepsy sometime in the second half of third grade, when I went back to school after the summer I was being treated for Narcolepsy (although it wasn’t until mid-Fall that I had my sleep study).

Although I was quite young to have Narcolepsy, I was lucky to have a classic “textbook case”: both my neurologist and my sleep doctor suspected Narcolepsy early on. 

I was also fortunate to be diagnosed within the year (with part of the time being during the summer), as this meant that my studies weren’t effected in the long term.  I had always been an excellent student, and with treatment I was able to go back to being one of the best students in the class. 

Although I still felt sleepy sometimes even with treatment, my medication and naps clearly made a huge difference, especially when it came to school.  I had always been an excellent (albeit a bit perfectionist) student, but before diagnosis I had a terrible time staying awake in class. 

The most telling example I can remember was (yes, the dreaded) yearly standardized tests, which took place towards the end of the school year.  My third grade score (prior to Narcolepsy diagnosis and treatment) was poor to average, as I kept nodding off during the test.  In comparison, my fourth grade score (after diagnosis and with treatment) was so high that the school sent me a letter saying I was being put in the gifted and talented program.  I thought this was amusing in an ironic way, as I got the letter after I had already moved to the East Coast (and thus wouldn’t be attending that school anyway).

So things make more sense, I should probably explain that I have lived part of my life in California, where my dad lives, and part of my life in Connecticut, where my mother lives (and where she grew up).  We all lived in California until my parents got separated(later, divorced) and my siblings and I moved with my mom to Connecticut.  (I was diagnosed about a year before we moved to CT.)

This is why sometimes you will hear me talk about doctors on two different coasts (and for some of the time, a doctor on each coast).  (In fact, my diagnosis was done partly in Connecticut and partly in California because my family always spent part of the summer in CT visiting my mother’s side of the family.)

My freshman year of high school, it was discovered that Cylert can cause severe liver damage in rare cases, which led to me change medications.  (The manufacturer recommended that people on the medication start having VERY frequent blood tests to check for liver damage—I believe the recommendation was to get tested every two weeks, which is ridiculous .  After a number of times getting such frequent blood tests, I finally said enough, no one is drawing more blood from me!, I’m changing medications.) 

Upon the recommendation of my sleep doctor, I decided to try Provigil.  Unfortunately it wasn’t the “miracle drug” it is for some people; it wasn’t enough to keep me awake.

I basically slept for the better part of the month or so that I tried it, which really hurt my studies.  I was at a very difficult private prep school, and it was impossible for me to keep up with the workload and other activities when I felt sleepy all the time.  However, I thought that I had less crazy dreams during my naps and felt a little better, so I continued taking a low dose of Provigil in combination with Ritalin (to replace the Cylert). 

At this point I had switched to seeing only my California sleep doctor (the one who gave me the final diagnosis and original treatment plan), with him treating me long distance but seeing me regularly.  Although it was a bit unusual to combine Provigil with Ritalin, he was okay with it.  This was one thing I liked about my doctor: he knew all about the latest Narcolepsy research and was willing to try unusual combinations of medications, as long as there was no medical concern about doing so. 

I don’t remember the exact story of how I came to change doctors, but I think my dad decided to come with me to visit my old Stanford doctor in California because he wanted to learn more about my sleep disorder (as my mom had always been the one taking me to see the doctors).  I believe that this led to the two doctors corresponding via letter (with my sleep doctor trying to convince my (Connecticut) neurologist to have me try Provigil because I was sleepy).  Then, I ended up leaving my neurologist to just be treated long distance by my sleep doctor. 

I was a very shy and sensitive kid, and while my neurologist had been instrumental in diagnosing me with Narcolepsy, I thought he was really intimidating and hated going to see him.  He also didn’t seem to be doing much to help me: I never tried any medication except Cylert under his care, even when I complained of feeling very sleepy and a problem with talking too fast.  I don’t remember him ever suggesting I try anything else, even though later I would learn that my sleep doctor had written him a letter trying to convince him to have me try Provigil (which back then was the newest Narcolepsy drug).

So I switched to my very friendly, caring, extremely knowledgeable and talkative California doctor, who was okay with treating me over the phone if I had a problem. 

I continued taking these medications until the second half of my freshman year of college, when I decided to stop taking Provigil and just take Ritalin.  (I no longer thought that Provigil really helped me and I wanted to start taking the birth control pill.  Provigil reduces the effectiveness of birth control, although it is not known to what degree.)  My sophomore year, I switched from Ritalin to Concerta (the long acting form of Ritalin), taking 36 mg in the morning and 18 at 3 pm, in the hopes that this would work better to keep me awake.

I will continue the rest of my story in a separate post titled “My Story, Part 2,” as otherwise this would be a REALLY long post.  In this post I will cover my experience with Xyrem, trying Provigil (again), various anti-depressants, and increasing my Concerta dose.  I’ll post this either later today or sometime tomorrow.

low energy, low effort cooking: the saga begins!

I have this problem.  I don’t like to cook, and lately I haven’t been doing a lot of it.

This past week, for example, I’ve only cooked dinner a few times.  Most of the time we pick up food, order food, or go somewhere to eat.  This works in Berlin because eating out here is cheap, however I miss the joy of the home cooked meal and as someone who is quite overweight, I know that this shortage of home cooking is probably the main reason why I’ve gained weight (and struggle to lose it). 

While I lost 15 pounds or so when I was on Xyrem, in the three and a half years since I stopped taking it I have gained it all back plus 40 pounds.

I know that being overweight certainly isn’t helping my energy levels: I have mild sleep apnea and being overweight exaggerates it.  I also know that being overweight or obese effects one’s energy levels in general and as a Narcoleptic I would expect that this would effect me even more than it would someone without Narcolepsy, as I already have less energy than a PWN.  Clearly, I have plenty of reason to be cooking dinner every night.

The answer is simple, right?  Just get in the kitchen and cook a healthy dinner every night, right?

Except if it was that easy, I don’t think I would be struggling with this problem, not to mention writing a blog post about it. :-)

Why is it not that easy?  Well, here are a few reasons why cooking dinner every night is such a challenge for me – and why I haven’t been doing it enough.

1. First, the time one normally makes dinner at (say, somewhere around 6 pm) is not a time when I have a lot of energy – and most of the recipes I would like to cook (even the “quick” ones) take significant energy, not to mention time.
2. I think this is mainly me with a little Narcolepsy thrown in, but I’m not a master chef and I am SLOW when it comes to cooking.  Those 15 minute recipes?  Yeah, they take me double, triple, even four times that to make.  Part of it is the time of day – after a full day I’m likely beat and a bit tired.  Part of it is I tend to just start the recipe instead of planning it first and thus run in to problems (OH, it has to sit for an hour!).  And part of it is I’m not an expert multi-tasker and most recipes assume you’re doing a million things at once (thus it takes me more time sometimes).  And then there is the clean kitchen thing – do I need to wash something to cook this?  When I do make dinner, it generally takes me waaay longer than it should, which is really frustrating and leaves me not wanting to cook again, not to mention exhausted.  Most days I just have trouble getting myself to spend an hour in the kitchen.  It doesn’t help that (like I said before), Berlin is a cheap city and it doesn’t cost much more to eat out at a casual place than it does to cook.  Which doesn’t help me drag myself into the kitchen every night.
3. Is it just me, or do most “quick and easy” recipes or “15 minute meals” recipes take way longer than 15 minutes? (even if you don’t have most of my problems with cooking from reason 2)  Rachel Ray can do it in 30 minutes, but can you?
4. My husband complains about this: I don’t have a set collection of recipes I regularly make, so I’m constantly trying new ones, which means that they take longer and I’m more prone to mess things up (especially since I use American recipes but have to make adjustments since I’m here in Germany).
5. The whole clean kitchen and everything perfectly prepared for me to start cooking thing.  (Okay, so I’m a bit messy – but at least I’m being honest! :-))
6. I know this would all be easier if I would plan my meals, but why bother when I’m probably not going to actually use my “starting tomorrow I will cook a magnificent dinner every day for a month” plan.   (Plus, “meal plan” can be code for more grocery shopping or buying more food – and since I have to carry it all from the grocery store, buying more food means I need to shop more often (or order it from somewhere)).

Which brings me to the challenge: How can I manage to cook a nice and healthful dinner for my husband and I each night?  How can I feed us without resorting to frozen pizza, takeout spaghetti Bolognese, or eating out? 

I’m still working on the answer, but I decided today that I’m going to put some energy into finding ways to get better at this, including finding/ coming up with some truly quick and easy recipes that don’t take a lot of effort.  You are welcome to join me as I share what I try and what works for me.

I suspect that the winning plan for me will be a combination of meal planning (especially defrosting the chicken in advance!), recipes using my large George Foreman grill, slow cooker recipes, and “oven meals” (that’s all in one meals you throw in the oven, like a roast chicken with potatoes and veggies in the same pan).

As I speak, I am making dinner.  :-) 

The meal?  One cubed (very large) sweet potato seasoned with spices, a little parmesan and olive oil and cooked in the oven in a pan and seasoned (just salt and pepper) chicken breasts done on the grill.  I think I’ll also add some canned cranberry sauce, a little ketchup for the potatoes and some pre-cut veggies from the store I have in the fridge with some Ranch dressing. 

I am happy, and the meal hasn’t taken much time or effort.  I’m psyched.  :-)

Tomorrow, I swear I am going to get out my slow cooker and try a new recipe from a website called A Year of Slow Cooking.  Really.  I’ve never tried anything from there, but most of the recipes look quick and easy best of all, there’s usually no standing around fiddling at the stove, flipping, etc.!  If you have a slow cooker/Crockpot, you should check this site out: it has more than 365 free slow cooker recipes (if you have celiac or a gluten allergy, this would be a good site for you, as almost all the recipes are gluten free).

How do you deal with dinner?  Is it difficult for you to get a good meal on the table each night?  What works for you?

(If you want, you can comment anonymously, just so you know.)

Happy Monday!

Narcolepsy research: Genetic Study Confirms the Immune System’s Role in Narcolepsy

Last May, scientists funded by the National Institutes for Health identified a second gene associated with Narcolepsy, which relates to the autoimmune system. 

According to the press release, the researchers discovered that Narcoleptics with cataplexy are more likely to “unique variants” of a gene called TCRA, which encodes a receptor protein on the surface of T cells.  (The T cells play an important part in the immune system.)

For the full description of this research, which also includes a short explanation of the previous research connecting variants of a gene called HLA with Narcolepsy, see the article below.  It’s only one page, and it is a good summary of much of the current research on what causes Narcolepsy.

Here is the link to the article:

Genetic Study Confirms the Immune System’s Role in Narcolepsy

What do you think?  Has anyone been tested for the HLA gene? 

I haven’t been tested, but if I recall correctly sometimes doctors test for this when they are trying to figure out if someone has Narcolepsy.  I believe I’ve heard some people discuss this on Talk About Sleep.

the benefits of short scheduled naps

When I was diagnosed with Narcolepsy at age 9, my sleep doctor handed me (and my mother) a prescription for Cylert and instructions to take two 15 to 25 minute naps, one at 12 pm and one at 3 pm.

The naps were not to be longer than 25 minutes.  More than this would put me into a different stage of sleep and I would wake up feeling sleepy as opposed to refreshed. 

It sounds strange, but the two hour naps I had been taking were actually counterproductive, I was told.  For Narcoleptics, 25 minutes will actually leave you feeling better than two hours, my doctor said. 

When my doctor told me I had Narcolepsy and there was no cure or magic pill, I broke down in tears.

“But you said you would cure me and make me better!” I insisted.

  (As far as I remember, some doctor early on had reassured me that they would cure me and everything would be fine, probably back when they thought I had mono.  Through all the tests and the doctors, I had clung to this statement to the end, even though I know now that my parents knew early on that my doctors suspected Narcolepsy.) 

I would have to take naps FOR THE REST OF MY LIFE!

Every nine year old knows that only babies take naps, right?  I was very upset.

But I got over it, and I got used to it.

I took my doctor’s advice and have been taking it ever since. 

I didn’t realize it back then, but I can see now that I was very lucky. 

First, I was diagnosed very young, which meant that I grew up having already made some difficult changes to cope with Narcolepsy, the most important one being these naps. 

Second, I was fortunate to be diagnosed and treated by a renown sleep center and an excellent doctor.  I happened to live two hours from Stanford University, where some of the most important research on Narcolepsy has been done, and they have an excellent sleep center. 

And finally, I was lucky to have a doctor who knew his stuff and gave me this advice on taking naps.  (Years later when I changed doctors I would understand just how lucky I was: not all sleep doctors are created equal.  They also don’t all give the same recommendations or advice.)

In 17 years, this nap advice is the best advice I’ve ever gotten as far as Narcolepsy is concerned.

For me, this advice was invaluable and just as important as my medication.  I’ve tried a number of medications, but none of them managed to keep me awake except in combination with my naps.

I need both naps and medication.

I’d like to claim that I am just the perfect patient who always follows the doctor’s advice, but the truth is that when it came to the nap recommendation, I never felt that I had a choice as to whether I would follow it. 

While it was difficult to adjust to taking short naps in the beginning, it was this advice that allowed me live a relatively normal life. 

Now, I fit in my naps every day- no matter what- because without them I can’t be myself. 

If I have to sleep on the grass, on a bench, on the bus, in the nurse’s office at school, then so be it.  I’m taking my naps.

It was only many years after I was diagnosed that I realized that all Narcoleptics haven’t been given the same advice as I had been, or if they were given it, most haven’t adopted it.  (At least, I have never heard another Narcoleptic mention taking scheduled naps like this.  I am sure that there must be some people that do it, but I personally don’t know of any.)

I only realized that I was a bit unusual in this way when I started talking to other Narcoleptics on Talk About Sleep (about five years ago).

Now, don’t get me wrong, I’m not claiming that every Narcoleptic needs to take naps or should take naps.

If there is one thing I can say about Narcolepsy, it’s that what works for one person doesn’t work for everyone.  There is no magic pill or advice that works for everyone.

This is just what works for me, and I share it with you so can understand where I’m coming from. 

Perhaps there are also some Narcoleptics who haven’t tried this or heard this advice who might benefit from it. 

I’m not suggesting that everyone should ‘nap like me.’  I don’t like taking naps, and if it didn’t work so well for me I certainly wouldn’t do it.

Taking naps, especially scheduled naps, is difficult, in fact if you’re used to taking two hour naps like I was, it’s a very difficult change.  (I think in the beginning I could only get up if an actual human being forced me to.  Now I can use an alarm clock.) 

Unfortunately, the schedule part is the most important part for me, and it’s the part that is hardest to fit into my day.  I suspect most Narcoleptics take naps, they just might not take them at the same time every day. 

I happen to get very sleepy (like clockwork) around 12 pm and 3 pm, and if I don’t take my naps around those times, bad things happen.

If I miss one nap, I’ll be very sleepy and not myself.  If I miss both naps, and this only happens if I’m with people who somehow prevent me from taking them, I slowly fall apart.

I’ll struggle to stay awake.  I’ll jump at small noises.  I’ll fall asleep for a second while standing up. 

I’ll start to feel shaky and have to be careful not to fall down the stairs.  I’ll slur my words and I’ll get overly emotional. 

In fact, if after all of this I feel that for some reason I still can’t take a nap (and for some reason I haven’t at this point insisted on it), I will have to fight to hold back tears, despite myself.

That’s right, if I can’t take my two naps, I will get so tired that I might just start to cry. 

I need to sleep that badly.

Naps are most important part of my schedule, and although I can be a bit flexible as to the exact time, I have to fit them in every day if I want to function.  To me, taking naps is like brushing my teeth: you don’t skip it. 

What do you think about naps?  Do you take them?  If so, do you schedule them and how long do you sleep for? 

What works for you?

shopping without dropping

Noting the date on the calendar, I realized today that I’m going to have to start thinking about Christmas shopping soon.  (Groan.)

I always dread having to do lots of shopping because it so time and energy consuming.

In my opinion, shopping is a lot more fun to talk about than it is to do.  

Somehow when I enter a big department store, the energy just drains right out of me. 

There’s just way too much stuff, and it’s noisy and crowded and it takes forever to find what you’re looking for. 

I’ll go there with a list of ten items, and then having spent multiple hours only to buy two items, I’ll feel exhausted and head home.  Talk about frustrating.

I always thought this might have something to do with Narcolepsy until my husband admitted that he also feels like all the energy is being sucked out of him when we go to KaDaWe (a giant department store with seven floors in Berlin). 

I thought to myself, Yes! This happens to PWN too! :-)

I do think that one of the main reasons I hate shopping is that it consumes a lot of energy.  Perhaps if I didn’t have Narcolepsy, I would enjoy it more, but I don’t think so. 

However, I do think I would do it more often if it didn’t take so much out of me.

When you have a limited amount of energy each day, you tend to notice when things take a lot of energy and leave you feeling drained and tired.  As a Narcoleptic who already struggles with alertness and energy, I do my best to avoid activities like this when I can.

While we’re on the topic of energy, yesterday I found a good explanation on a forum of how Narcoleptics have a limited amount of energy.  I thought that it was worth sharing.

“A chronic fatigue specialist puts it like this: All healthy "normal" people have 100% energy to use each day. Think of it as 100 pennies to spend.  You spend so much getting up, showered, dressed, getting to work, working, etc. There are still quite a few pennies that you chose how you will spend.  If you have a health condition that limits your ability to remain awake, or lessens your energy, you don't have 100 pennies. Maybe you have 80- if you do, you will have to make more careful choices, but you can "fake" a normal 100 penny day pretty well.  If you only have 60 or 70 pennies, it's not so easy.

Bottom line- you can spend your pennies however, but there aren't as many as most people have, so you'll have to economize somewhere. You can probably do any of the things you want, but maybe not all of them at the same time.  For a lot of PWN, it seems that the right treatment can give you more pennies, but you probably will never have 100. I found this a good way to visualize the struggle- but I don't have narcolepsy.”

Knowing that I have less “pennies” than people without Narcolepsy, this year I’m going to try to stress less about shopping and be more efficient with my time and energy.

I’ve even brainstormed a list for myself of a few new ways to do this.  :-)  Here they are below…

Ellie’s ideas for saving time and energy on shopping for gifts:

1. If I am going to use the internet to shop for something, I am going to pick ONE website and then buy what I want from there.  As opposed to what I usually do: look at eight different sites for the same thing and then worry about which item I should be buying.
2. If I go to the mall, I’m going to decide what I want to buy for someone BEFORE I buy it and where I’m going to do it.  In other words, I’m not going to look in 20 stores for one person, hoping to magically discover the perfect present (normally it doesn’t happen, and I have to just pick something anyways).  I’m going to decide what to buy each person before I leave the apartment.
3. This year I’m going to ask my sister (who likes shopping and is good at it) in advance what she is doing for our other family members, so I can contribute to whatever she is doing. She always knows what everyone wants, and we usually buy some gifts together anyways.
4. I am going to remind myself that Christmas (or the holidays) is not about giving “the best” gift but spending time with family and friends and giving thanks (in addition to whatever religious activities you might do). Sure, if I spend less time on this I might end up giving less original gifts, but quite honestly, I don’t think anyone will notice, while I will feel much better.  I might even be able to avoid a migraine or two. 
5. When in doubt, stick with the stores/places you know (i.e. amazon, Nordstrom’s, etc.).  This is not the time to be venturing into places you know nothing about.

How do you feel about shopping?  Do you have any strategies or tips for saving time and energy?

Narcolepsy, post-meal sleepiness, and what to eat to stay alert

For years, I’ve struggled with a strange problem: eating in the morning makes me really tired.  Tired as in I might just have to go back to sleep tired.

Version 1 goes like this: I wake up after my eight or so hours of sleep feeling okay but not as refreshed as a “normal” person.  I drag myself out of bed, take my medicine and am awake and ready to start the day. 

I eat something, ANYTHING, and WHAM, maybe 10 or 20 minutes later I AM IRRESTIBLY TIRED.  I do my best to resist the sudden (and continuing) urge to return to bed, but I often lose the battle and go back to bed.

(Just to clarify, because if you tell someone about this they often will go on to ask: yes, ANYTHING includes a healthy breakfast like oatmeal with nuts.  It also includes the “low carb” breakfast.)

Version 2 is a bit better, but still not great: I wake up and get ready but leave without eating anything.  I eat breakfast or something wherever I am, and sometimes I feel about the same afterwards or only slightly tired.  (For some reason, I sometimes can eat and be okay when I eat somewhere other than at home.) 

However, other times I will feel very tired and if I’m in a situation where I am unable to take a short nap, I might struggle to stay awake, kind of half asleep and half awake.  (I suspect that this second situation generally happens when I eat and then do a non-stimulating and sedentary activity, such listening to a lecture in school).

For years this half asleep, half awake version used to happen to me in 1st period classes, regardless of how much I used to struggle, and I never knew what was going on.

Unfortunately, my problem was so strange that it took me over 10 years to figure out that I even had it.  I just never quite made the definite connection between the food and the sleepiness. 

I suppose I must have thought I just had a problem with wanting to sleep shortly after getting up…

It was only in my last years of college that I finally realized what was going on.  But I never understood why this happened to me – or how to stop it (other than skipping breakfast, which is hard when you wake up hungry).

Five or so years later, I still don’t understand it completely, but a few days ago I found an explanation while doing Internet research for this article.   

It turns out, my experience is a documented medical phenomenon (!) – not for Narcoleptics – but for people in general.

I suspect that I may just be more sensitive to it than your average person because of Narcolepsy, although I still don’t understand why this happens to me in the morning.

My experience is called Postprandial somnolence, which is a fancy term for a state of drowsiness or fatigue following a meal.   

Basically, postprandial somnolence has two components, both of which causes one to feel sleepy after a meal.  First, there is a general state of low energy and a desire to be at rest related to the activation of one part of the nervous system (and decrease in activity of another part) in response to the arrival of food in the stomach and small intestine. 

And second, there is the sleepiness “caused by hormonal and neurochemical changes related to the rate at which glucose enters the bloodstream and its downstream effects on amino acid transport in the central nervous system.”  As Wikipedia explains, when you eat foods with a high Glycemic index, this ultimately results in increased brain serotonin and melatonin levels, which makes you feel sleepy.

What can you do if you want to stay awake but don’t want to starve yourself all day?  Well, some of the research I found was a bit conflicted, but I’ll share with you what seemed to me the best answer.

Apparently, what is important when it comes to staying awake after a meal is not how much you eat but what you eat.  Although eating almost anything can cause this sleepiness, the worst things to eat are simple carbs, food high in tryptophan, and high fat foods. 

The nutritionist in the video above suggested eating foods high in tyrosine when you need to stay alert, with her ideal meal being a low to moderate amount of lean protein, a half cup of veggies, and a half cup of rice (to give some carbs to “keep the brain happy”).

I also read a few places that supposedly staying active after eating (as opposed to lounging on the couch) and drinking water can help to prevent this sleepiness, although there seems to be a lot of conflicting advice surrounding how to deal with this (for instance, some people say it matters how much you eat, others say the opposite).

Perhaps the staying active advice explains why sometimes I do okay when I do something stimulating immediately after eating.

Here are two excerpts from another source that had good advice:

“Two factors influence whether the brain perks up or slows down following a meal: the ratio of protein to carbohydrate, and the ratio of the amino acids tryptophan and tyrosine. High protein, low carbohydrate, high tyrosine foods that are likely to jumpstart the brain are seafood, soy, meat, eggs, and dairy. High carbohydrate, low protein, high tryptophan foods that are likely to relax the brain include: chocolate, pastries and desserts, bean burritos, nuts and seeds (e.g., almonds, filberts, sunflower and sesame seeds), and legumes.”

“Brain performance following a meal is also affected by the carbohydrates consumed with the protein. Carbohydrates stimulate the release of insulin, which helps more tryptophan to enter the brain where it makes more serotonin. The more simple sugars in the meal, the more serotonin is produced, and the more the brain is sedated. Complex carbohydrates - slower insulin-release sugars - on the other hand, will cause less drastic serotonin production. … So, to perk up the brain, eat a meal that is:

• High in tyrosine-containing proteins.
• Moderate in the amount of sugars, containing mainly complex carbohydrates.“

Although I still don’t understand why this happens to me mainly in the morning, I will have to try this advice and see if it works.  I don’t know how much of this can be attributed to Narcolepsy, but perhaps I am  just unusually sensitive to the changes in the body caused by food. 

Considering how sensitive I am to food in the morning, I think I will have to try eating food with a very low Glycemic index or high in tryosine, while at the same time staying active and drinking water.  I know I previously have tried eating a low carb breakfast without noticing any benefits, but I am going to try to reserve judgment and hope for the best.

What do you think?  Do you get post-meal sleepiness, and if so, do you find that anything helps?  I’m curious to see if this happens to many other Narcoleptics…