Finding what works for you and your body

You wouldn’t think that it needs to be said, but it does: What works for some people just doesn’t work for others. 

It’s great to know lots about how to keep the body healthy, but you also have to listen to your body and figure out what makes you feel best (as well as what is healthy for you).

I feel that it is especially important for Narcoleptics to figure out what works for them because in some ways our bodies work differently than those without Narcolepsy.

Here’s my personal example: I recently have been trying not to eat or drink anything in the morning because I find that doing so makes me feel either tired or sick or both.  For years I have ignored my own observation that eating in the morning makes me feel badly, telling myself that breakfast is so important, etc., but it was only after I actually started getting nauseous after eating these past months that it hit me: clearly my body doesn’t want to eat in the morning! 

It’s been hard for me because I really like breakfast, but I am working on listening to my body instead of just doing what everyone else does and what people say is best.  (I’ve actually talked to multiple nutritionists over the years on the subject, and their response was: breakfast is the most important meal, can’t you eat something?   and that’s just it, no, I can’t.  Or at least, I shouldn’t.)

I’m pretty sure that my strange reaction to food in the mornings is because of my Narcolepsy, but I have no proof that this is true.  However, I also have much more cataplexy in the mornings when I exercise, so I think my body just reacts differently in the morning for some reason.

Anyways, it’s something to keep in mind: what works for “everyone else” might not work for you.  And at the end of the day, finding what works is most important, right?

Does anyone else have any examples they would care to share from their life?

God bless!

What would you like to find in a book about dealing with Narcolepsy?

Good morning to all of you, and Happy Sunday!  I just got back from a short vacation in Hamburg, and the weather is so beautiful here in Berlin .  Spring is here!

I was talking with my husband when we were in Hamburg, and we started talking about my writing a book about dealing with Narcolepsy.  This is not a new idea -  it’s an idea that I’ve been tossing around for a number of years now but it’s come up again and I think it might just be something that I would enjoy and that would probably be helpful to some struggling or new Narcoleptics.

Which brings me to where all of my dear readers come in (that’s you! ): I was hoping that some of you might be willing to write me a line or two (or more if you want) and share what you would like to see in such a book.  The book that I am envisioning would not be a memoir or a book primarily about me, but rather a sort of “idiot’s guide” to Narcolepsy, with relevant parts of my own story thrown in when I think it’s helpful.

I would especially like to know what topics would be most interesting and helpful to you and other Narcoleptics.

I know that there probably isn’t any money in writing such a book, and that there is a good chance that I would have to self publish it if I wanted it to be published, but money isn’t the reason that I am seriously thinking about a book.  I want to write a book on this for the same reason that I started this site: I know how hard it is to have Narcolepsy and how hard it is to find good information on dealing with it and I want to use what I have learned to help others.

Thank you so much for a minute of your time.  Your comments would mean so much to me and would go a long way towards helping me start this project.  (So if you want to see this happen – by all means write something!)

God bless you all!

A young boy’s experience with Xyrem and sleepdisorders.com

I was recently asked by Nader Ahmadnia, the webmaster for sleepdisorders.com, if I would be willing to have him as a guest blogger on my site.  As the content of the material was interesting, I agreed, and you can find the short article he wrote below.

“Xyrem Helps Narcoleptic UK Boy Live a Normal Life

A story published by the UK press last month had sympathizers smiling about advances in narcolepsy treatment. Reece Williams, a 7-year-old boy with severe narcolepsy symptoms, couldn’t even kick a soccer ball without falling asleep on the spot. A normal day for Reece consisted of 23 hours of slumber and approximately 25 drowsy falls during the hour that he wasn’t completely knocked out. But after taking the drug Xyrem, Reece’s symptoms have improved significantly.

Xyrem, a medication that claims to help daytime sleepiness and cataplexy symptoms in narcoleptic patients, has caused a lot of controversy among researchers who debate its very high cost. The drug also claims to improve quality of sleep. As of now, the drug is technically only licensed for prescription to adult patients. But Reece, who had undergone a multitude of tests and treatment plans prior to being put on Xyrem, now has the ability to enjoy a normal life.

It took almost two years for Reece and his family to receive a proper diagnose of narcolepsy. He had begun displaying symptoms at age 5 and was becoming increasingly irritable and aggressive. He fell behind at school because he kept falling asleep. His mother worried constantly that a fall might result if serious physical injury. But after countless misdiagnoses, including weeks spent in a hospital while Reece was put on high-dose steroids, a simple Internet search of the boy’s symptoms led to identifying Reece’s rare sleep disorder.

Reece’s parents tracked his symptoms by filming the boy. They noticed that whenever he laughed or got excited, his face would twitch and then he’d fall over sleepily. After taking the boy to a sleep center and letting him stay there overnight to be studied, doctors found that it only took Reece 19 seconds to achieve deep stages of sleep normally reached 40 minutes after going to bed.

Sleep doctors tried other sleep medications before turning to Xyrem, but nothing had worked. Now, Xyrem puts Reece on a 12-hour sleep cycle, and he remains more awake during the day. He still needs plenty of naps—crucial for any patient suffering from chronic daytime sleepiness—but overall, Reece’s parents and doctors are happy with Xyrem’s results. They’ve noticed a better sleep schedule and better quality of sleep, in general, presumably with fewer nightmares and less stress. If this treatment plan continues, Reece is going to grow up adhering to a strict schedule of three doses every night, but at least he will be able to wake up the next morning and kick a soccer ball around with his dad.

Sleepdisorders.com is designed to link sleep disorder sufferers to local sleep doctors and sleep study centers. In addition to our directory of sleep doctors, you can find informational articles related to your unique sleep disorder.”

I was surprised to read this story, as I had never heard of someone taking 3 doses of Xyrem, but apparently it is possible!

Thank you to Nader for the story.  (I myself do not have any affiliation with any sleep website.)

I also wanted to say a few words about sleepdisorders.com, as I checked out the site myself to see what it offered.  Two things on there site sparked my interest.  First, they have a free service where you enter your sleep disorder(s), where you live, and a little about yourself and they will recommend a sleep treatment center for you.   They also have a free service where you can ask a sleep professional a question online and they will send the answer back to you. 

Although I haven’t personally used either of these services myself, they looked like they might be helpful to some of my fellow Narcoleptics.  Let me know how it goes if any of you try out these services!

I hope that everyone is enjoying the spring, and I wish you all a Good Friday and an early Happy Easter!

(Easter egg trees like this are a classic German tradition.  So that’s your taste of Germany for the day!)

Narcolepsy in the News: Narcolepsy article from CNN Health

For those of you who might be interested, here is a one page article on Narcolepsy from CNN Health.  It does a very good job of describing the basics of Narcolepsy, while also incorporating the experience of a Narcoleptic.

Enjoy!

P.S.  If in the future, anyone finds an article on Narcolepsy that they think would be interesting to readers, please feel free to pass it on to me, either in the comments section or via e-mail.  That would be much appreciated .

A walk for Narcolepsy and sleep awareness

Good morning, dear readers!  Wow, I can’t believe that February is already almost over… it’s going to be Spring soon?  So that’s why I’ve been seeing so many stores selling daffodils and Spring looking flowers! lol.
Anyways, I’m a happy camper.  We haven’t had much of a Winter here in Berlin, but I’m more than happy to move onto spring ASAP.
Which brings me to the subject of this post: Sleep Walk 2012.  One of the things I like to do in the Spring is to take walks and admire the many parks here in Berlin.  For those of you who also like walks or are interested in Narcolepsy awareness efforts or both, there is a walk coming up in Washington, DC that you should know about: Sleep Walk 2012.
Sleep Walk 2012 is a walk for Narcolepsy awareness (and general sleep awareness), sponsored by Wake Up Narcolepsy.  It will take place in Washington, DC on March 10, 2012 as part of National Sleep Awareness Week (March 10 is “Suddenly Sleepy Saturday,” a special day dedicated to Narcolepsy). 
The event is free, although you need to register on the Sleep Walk website to participate.  There will also be an awards ceremony for people who have made important contributions to Narcolepsy awareness in the past year.
I heard that at least 65 people have already signed up for the walk, so no worries about being the only one there!
Unfortunately, I will not be able to go, as I live in another country, but if you live in the Washington, DC area, this walk might be something fun to do for a morning, while also raising awareness of Narcolepsy.  I would think that it would also be a good way to meet some people with Narcolepsy and their friends and family.
Even if you can’t go,  you might learn more about what’s going on for National Sleep Awareness Week and Suddenly Sleepy Saturday at the Narcolepsy Network website on the topic.
Enjoy your weekend!
Ellie

Now there’s a generic Concerta!

It’s funny, the way you find out about things sometimes. 

For example, I only recently found out that there is now a generic form of Concerta when my neurologist got multiple letters from an insurance company saying that they would only pay for the generic form of Concerta for people with ADD and that his patients needed to switch.  When I came in to get my monthly prescription, he called me into his office to switch me too, apparently forgetting that I don’t have ADD but Narcolepsy.  We switched me to the generic anyways, just in case the insurance companies decided to send him a letter about me as well.

I would have thought that doctors wouldn’t even prescribe the regular Concerta if there was a generic, but apparently I was wrong!

So, hooray for generic Concerta, all you Concerta takers!

Of course, having a generic doesn’t make much of a difference for me because I have German public health insurance (it actually doesn’t make any difference in what I pay), but it makes me happy knowing that there is one, both for all of you, and in case I should ever move back to the U.S. 

I feel so lucky to have such good health insurance here in Germany, even though we do pay a lot for it because we are in a high income bracket (you pay according to your income, plus fees for some things).  I know some people in the U.S. think that the government should stay out of health care and that perhaps the government is already too involved, but I’m not sure these people realize how great the benefits could be for them if we let our government get more involved. 

Yes, I do pay according to my income (to a certain maximum amount) for my insurance, but in return I get all the coverage I need, plus the knowledge that no matter what happens to me medically, I will never go bankrupt from medical expenses (or at least, it’s extremely unlikely).  I personally know many Americans who are opposed to having a system like our German one (although contrary to what you might think, our German system is run by private companies so you can pick your insurance company and what it covers), but in my opinion it’s hard to argue that the German system doesn’t have great benefits.  I won’t go into this topic too much more because I know that it is politically sensitive, but now that I am married and have German insurance, I get my monthly Concerta for 10 Euros a prescription (yes, 10 Euros each for each of my Concertas!!).  Birth control pills are not covered by insurance, but they are only 50 Euros for 6 months worth.  I pay a 10 Euro fee once each quarter to see a doctor(!), and then I can see any other doctor without paying for the duration of that quarter of a year.  My avian flu shot was free, etc., etc. 

Of course, the system doesn’t cover everything (for example, my private insurance covered acupuncture for lots of things, my current one only covers it for back problems), and sometimes it makes things difficult.  For example, I’m now seeing a private psychologist because I just couldn’t find a public one that speaks English and has room for new patients.  I am told that I could document the lack of a suitable psychologist in a painsaking manner (ie providing documentation that I’ve visited a number of psychologists and rejected them) in order to get my company to pay for a private person – and perhaps I will do that in the future – but for now I’m just going to pay for it privately.  I am actually lucky to have both private and public insurance, as my husband’s company pays for us to have private, so that’s not a problem.

I’m don’t mean to boast, I just think a lot of Americans don’t realize what a bad deal they are getting when it comes to health care when it comes to cost.  I mean, I think most Americans would agree that our system has big problems (especially when it comes to cost of care for some things – even if you have great insurance!), but many people imagine that things would be even worse – in quality of care, in what you pay, in availability of care, etc. – if we had a public system (in addition to a private one) and the government negotiated prices and so forth.  I think this is really sad, because, as I know from personal experience, there are a lot of benefits to be had from the government getting involved.  (And yes, need I say it, but in my opinion a system similar to the German one would be better for  upper middle class and wealthy people with “good” health insurance too!)

Here’s one more example of what a bad deal we’re getting, and then we’ll call it a day:  when I had private insurance and had to pay for things out of pocket, my two Concerta prescriptions (1 pill 36 mg and 1 pill 18 mg per day) together cost about 110 Euros per month… without any insurance at all!  That’s the normal price here.  If my memory serves me well, it would have cost me at least 300 to 400 dollars (I think it was 400) to buy the same medicine in the U.S. four years ago, without insurance.  With insurance, it would have been a $30 copay per prescription. 

But it gets even better… this medicine that I am buying in Germany is made in the U.S. and imported to Germany.  Which brings me to the shocking part, if you are an American: all of this means that it costs at least twice (if not three times) as much to buy American-made non-generic Concerta in the U.S. as it costs to buy it in Germany (without insurance).

This is part of what people are talking about when they talk about American pharmaceutical companies making a killing in the U.S. and a lot less in Europe… and how we need to also start negotiating prices and letting the government get more involved if we want better prices.

I am happy that President Obama managed to pass changes in health care, but I personally would have liked to see us switch to a public health care system more like Germany’s.  Hopefully things will get better once all the changes go into effect. 

I would like to think that this is a move in the right direction. 

On a more personal note, I personally think it is hard enough having a sleep disorder like Narcolepsy without having to stress about how to pay for your treatment, and unfortunately some of medicines used to treat Narcolepsy are very expensive. 

So, hooray again that one more Narcolepsy medicine has gone generic!

God bless you!

P.S.  If anyone has any specific things they would like me to write about that I haven’t already talked about, I would love it if you would mention it here or send me an e-mail.

Update on me and a Happy Fourth of July!

Happy 4th of July to all the Americans out there! 

I wish I could be with you today as you barbecue, eat watermelon, go to parades and see the fireworks!  Sigh.  Not much going on for the holiday here in Berlin, probably because this is Germany. 

I know that I only have been writing posts on this blog once in a blue moon for quite some time now, but I wanted to post an update on my life, as it seems that a number of people are still reading this site.  (Funny, back when I used to post here often, I would get excited when my site would make the first two or three pages of google search for “narcolepsy blog.”  Now that I almost never post, I come up as the fifth result!  Lol.)

Currently, I am just staying at home trying to get my health issues under control, especially depression and migraines (although weight is also a big issue for me, but not one keeping me from working).  Starting in November, I had a three month internship with a non-profit that does conferences on international politics and culture, however, it was a big problem that I was missing 2-3 days each week because of migraines.  Because of this, I decided not to look for other work when the internship ended and just focus on getting rid of the migraines.  I am fortunate that I can stay at home without running into financial worries, as my husband has a job that pays very well.

The good news is that, since then, I have managed to reduce my migraines by about 50%, since I changed my diet a bit to resemble the low glycemic index treatment. 

Out of the blue, my previously unhelpful neurologist told me about the ketogenic diet, which is traditionally used to treat epilepsy in children, saying that it might help my migraines and even my weight issues and narcolepsy.  (Those of you who know something about migraines might remember that many medications used to treat epilepsy are also used to prevent migraines.)  (Thank you, God, for answering my prayers ).    I then discovered the low glycemic index treatment, which is a much more liberal version of the ketogenic diet, through my own research about the diet on the internet.

Since I started trying to follow this diet, I have gone from one migraine (with me lying sick in bed 2-3 days) every week to a bit less than two migraines per month.  That, and I have been able to completely stop doing the other migraine diet I was doing, as I found that I didn’t find that helpful when I was doing this thing.  I haven’t seen any change in terms of weight or my Narcolepsy, but I was trying this because of the migraines. 

Having said that, I haven’t yet managed to get anywhere near the intended restrictions of the diet (namely, 40-60 grams of carb per day and staying within the low glycemic index) since the first month.  Let’s just say, I cheat.  A LOT.  And yet, I have still managed to see a dramatic improvement!  Which makes me very happy.  I’ve now gone on two vacations where I didn’t lie in bed for at least one day with a migraine (amazing!). 

It is my hope that I will be able to start eating better and with less carbs very soon, and that perhaps once I do that my migraines will decrease even more.  In the first month that I did the diet, I followed it more strictly and only had one migraine, so it is my hope that I can see even more improvement in this in the future.

(I should probably mention that if you do reduce your carbs to the level recommended with this diet, you should regularly see a doctor to make sure you don’t have any nutritional deficiencies or other problems.)

In other news, we got two bunny rabbits at the end of April, which has been quite fun.  The black one is named April and the white one is named Snowflake, both females.  They love to cuddle and groom each other.  It’s very cute. (I will try to post pictures in the future…)

I had really been wanting a dog, however, considering  my migraines and living on the 4th floor with no backyard, I decided that rabbits would be a better choice.  As I have been struggling with depression for some years now, it has been nice to have some furry company in the apartment, especially as my husband often travels for work.

I hope that everyone is enjoying the summer and doing well!

I also wanted to repeat something I’ve previously offered on this site, namely that if anyone is in need of advice or just some emotional support in a difficult time, please feel free to contact me at nisfornarcolepsy@google.com and we can talk.  I know that it can be quite tough to have narcolepsy on top of whatever other issues one might have, and I would be happy to lend an ear (either by e-mail or even by telephone, as I have a plan where I can basically call the U.S. for free).

Just in case anyone has been secretly praying for a narcolepsy buddy – and not just a message board sort of buddy, but a real person –to talk with.  If you live in the U.S., ideally you would seek out someone in your area in the form of a narcolepsy support group, but I recognize that not everyone lives in the U.S. or has access to such a group.  Or perhaps you have other reasons.  Regardless, I just wanted to say that you shouldn’t feel badly about reaching out if you need help (it happens to everyone).

God loves you, and I believe that he has good things planned for you.