Author Archives: CLGraves

L-Carnitine and Narcolepsy

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L-Carnitine: Carnitine is is an important essential nutrient, and has been demonstrated to be therapeutic for individuals with narcolepsy.

Carnitine and Narcolepsy. A recent study investigated the contribution of a gene polymorphism found in narcolepsy called CPT1B, which is important in fatty acid oxidation. They discovered that individuals File:Acyl-CoA from cytosol to the mitochondrial matrix.svgwith narcolepsy had very low levels of serum acylcarnitine (see right for the relationship between acylcarnitine and carnitine).

Reduced acylcarnitine means impaired fatty acid oxidation.

In addition, carnintine-deficient mice display phenotypes similar to narcolepsy, included impaired sleep regulation and reduced orexin cell functioning.

Oral supplementation of L-carnitine restores β-oxidation (fatty acid oxidation) and mitochondrial ATP generation from fatty acids.

Carnitine also has marked effects on proper intestinal development and function. 

Specifically, it has been shown that carnitine deficiencies lead to severe intestinal and immune phenotypes in mice. In addition to intestinal atrophy, the mice also displayed marked intestinal apoptosis, lymphocyte infiltration and inflammation.  There was an increase in CD45-B220(+) lymphocytes [CD45 perturbances have been linked with autoimmune disease], with increased production pro-inflammatory cytokines in immune cells. In addition, carnitine deficiency also causes a down-regulation of TGF-β-induced gene expression [ TGF-β is considered anti-inflammatory]. Carnitine supplementation may reduce intestinal inflammation and improve intestinal (and therefore systemic) health.

Carnitine and the immune system.

Carnitine has also been linked to proper immune cell functioning and improved antioxidant properties of cells. In the intestine, carnitine deficiency causes hyperactivation of CD4+ T cells and enhanced cytokine production.  Naive, memory, and regulatory T cells (Tregs; T cells which suppress inflammatory functions of other cells) rely on fatty acid oxidation, while “effector” T cells and pathogenic/inflammatory T cells (as seen in autoimmunity) rely on high rates of glycolysis. Furthermore, inihibiting glycolysis (or improving fatty acid oxidation?) in pathogenic Th17 (autoimmune T cells) will promote Treg development.

Carnitine supplementation can also improve obesity, glucose tolerance and energy expenditure

 

Anti-Narcoleptic Vitamin Regimen

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BIG FAT DISCLAIMER: I am not a medical doctor. The following is not advice or medical recommendation. Please see the official disclaimer here.

 

I have been off of conventional narcolepsy treatments for 3 years, and gluten free for 4 years. Over time, I have found a host of vitamins and non-prescription nutritional supplements that have greatly increased my wakefulness and helped with other aspects of daily functioning. Please note that this is my personal log. What they are, and how I think they are helping are below.

L-tyrosine :

I began taking L-tyrosine about a year ago following a blog post concerning “Narcolepsy, dopmine and tyrosine“. I started the tyrosine regimen (between six and nine grams a day, broken up into two doses [1 at breakfast, 1 at lunch]) following reading a paper in the Lancet that reported total remission of daytime sleep attacks and cataplexy after six months of treatment. The military has also used L-tyrosine in sleep-deprived pilots to improve performance during long flights. Another report which included more rigorous controls noted that only 3 of 10 patients noted a positive effect, and so L-tyrosine could not be considered therapeutically relevant. Personally, I noticed that at the 9 gm dose I experienced a great deal of anxiety – particularly in the evenings. However, lowering the dose to 3-5 gm per day and them in the morning and early afternoon gives me the benefits of wakefulness during work hours without increased evening anxiety. A summary of how I think it’s working is below:

L-carnitine: I take 1000 mg of L-carnitine per day (500 mg in the morning, 500 mg at night). Carnitine is is an important essential nutrient, and has been demonstrated to be therapeutic for individuals with narcolepsy. Click here for my long blog post on L-carnitine and narcolpesy.

In short, individuals with narcolepsy have very low levels of serum acylcarnitine. Reduced acylcarnitine means impaired fatty acid oxidation, disturbed sleep, and impaired orexin cell functioning.

Oral supplementation of L-carnitine restores β-oxidation (fatty acid oxidation) and mitochondrial ATP generation from fatty acids.

Carnitine also has marked effects on proper intestinal development and function and reduces intestinal inflammation.   Carnitine is also necessary for proper immune functioning and promotes regulatory cell function (think: anti-autoimmune). Carnitine supplementation can also improve obesity, glucose tolerance and energy expenditure

 

 

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Learning

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madcapmissadventures

From madcapmissadventures, I have learned I have to keep working at this anti-narcolepsy diet thing. If I slack off my diet (or exercise), my narcolepsy comes back with a vengeance. Thank you Gina for just being out there. We CAN beat narcolepsy!

gluten free + low carb = no narcolepsy

Dear Narcolepsy

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Dear Narcolepsy,

My name is Christina, you may or may not remember me – we first met a long time ago. Well, I remember you quite well, and there are a few things I need to say.

First, I want to begin by saying that I don’t hate you, but there are some things we need to work out together.

When I was a kid, you wouldn’t let me play on the playground with the other kids very much. I could play some, but I would often have to sit on the sidelines

Sometimes, you make me question my sanity. For example, one time you made me dream that I had a sexual encounter with someone I shouldn’t have. It was a very very life-like dream and when I woke up I was very mad, hurt, angry, and upset! Finally, after a few days of questioning myself, I realized you made me dream up the whole thing! What a cruel thing that was to do!

You made me fat. Ugh. I ate less and less and gained more and more. And that made people think I was even more lazy than I really was. It takes me so much more work to keep me weight normal than other people. I didn’t know this was your doing until much later in life. I spent a long time beating myself up about it.

I almost failed out of school. Yes. That’s right. Failing grades. Sleeping in class. Teachers questioned if I would ever go to grad school. Some even laughed at the thought I would.

You turned me into a zombie. Enough said.

You made me look drunk. When I get too tired I act weird and loopy. Some people think I look publicly intoxicated sometimes.

Sometimes I can’t drive. I can’t drive at night because of you. This is extremely inconvenient for me.

You make me mean.Thanks to you, my boyfriend hates me in the morning. I’m cruel, grumpy, and tired after fighting off monsters all night.

I haven’t been to a New Year’s Celebration in 5 years. 12 am is way to late for my brain.

I can’t finish more than 1/2 a movie. Oh? There’s some kind of happy ending? I wouldn’t know because I fall asleep during the climax when the whole world is going to sh*t.

I can’t eat cakewithout falling into some kind of 3 day coma. I hate birthday’s now.

You make me afraid to have children. Afraid that one day I won’t be able to hold down a job. Finish school. Have a productive life. You make me afraid.

All of these things aside, my dear friend narcolepsy, there are a few things that I am grateful to you for.

You have made me become a better person. 

Because of you, I have been forced to change my diet. I changed my diet and became a healthier person. (Which, in part made you back the hell off).

Because of you, I became a runner.

Because of you, I learned to treat people in a way that I would want to be treated. With understanding and compassion.. who knows how many people I meet have invisible illnesses?

Because of you I know the value of being awake. How precious simple things are that are continuously being taken for granted by others.

Because of you, I became a scientist. You made me need to know the answers to life’s funny questions.

Because of you, I’m the hardest f*ing worker anyone will ever meet.

You taught me to keep my head held high in the face of extreme physical limitation.

You taught me to have faith.

You taught me the value of executing a task while you can. Idleness is for ninnies.

So, you suck narcolepsy. But, also, thank you.

Christina

Titles

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A book about the narcoleptic journey? The autoimmune journey?

What a dream, what a dream.

 

Working titles for books:

 

No More Narcolepsy

A book about how a gluten free diet helped me reclaim my life and have days where I no longer suffered from narcolepsy.

Sleepy Scientist

A how-to guide on how to get the hell through higher education with a chronic sleep disorder.

 

Gluten Free Narcolepsy

A how-to guide on how to what to eat and what not to eat as a narcoleptic (or someone with an autoimmune disease).

Is that an alien in my room?

A picture-based book for children explaining hypnogogic hallucinations, sleep paralysis and other facets of narcolepsy to children suffering from the disease.

Your kid is not lazy.

I have talked to too many parents of children with narcolepsy that still insist their children lack motivation. Actually, it’s much the opposite…. you will never understand the kind of raw willpower it takes for a narcoleptic kid (or teenager, or adult) to get out of bed. This book will be a how-to-not-treat-your-kid-like-they-are-lazy guide. We do have motivation (a lot of it, in fact); this book will help you learn to recognize it.

 

“If I could do anything as a Health Activist…” WEGO Day 5

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If I could to anything as a health activist, I would start a rehabilitation facility for narcoleptics; lets call it the Sleepy Center. Here’s a few things we would feature:

Sleep specialists that know about narcolepsy. Heather has alluded to the recent survey that was taken about sleep specialist awareness of narcolepsy. At the Sleepy Center, we would only have doctors that know about us. 

Narcolepsy education. Learn what narcolepsy is, what it isn’t; and what hurts and helps your brain. Classes in basic neuroscience and autoimmunity for those more advanced.

School for narcoleptic kids that doesn’t start at 7 am. Actually, it doesn’t even start at noon. I’m thinking around 3 pm or so. Flexible due dates. Truancy not an issue. Learn at your own pace and in formats that are especially in tune with your individual needs (like learning while moving instead of sitting in a quiet room at a desk). Also, getting made fun of for sleeping on the bus won’t be a problem since we won’t have busses; we will also not tolerate people being made fun of for falling asleep.

100% gluten free and sugar free (low-carb) cafeteria. We’ll take care of your food so you don’t have to worry about it. In the mean time, we’ll also have classes to help you learn quick & healthy meal prep and how to do gluten free (or other allergen free) on your own time.

Allergists, nutritionists, and autoimmunologists to help identify any exogenous sources of inflammation that may be aggravating your narcolepsy. Eliminating as many of these as we can will help you recover more quickly.

A running track surrounding the building.We’ll also offer lighter indoor exercises (such as Yoga and water exercises) for those who just can’t get into running.

24 hour day care for non-narcoleptic children who are there with narcoleptic parents. That way, you can still be around your kids, but you can take the time necessary to focus on you for a while, while you learn tools to help you succeed in your effective parenting classes.

 

Effective parenting classes for narcoleptic parents of non-narcoleptic children. Parenting is hard work. Parenting is even harder with a chronic illness. The Sleepy Center’s effective parenting classes will teach you tricks from other narcoleptic parents on how to be extremely effective at parenting. Time savers and how to handle your kids when you’re tired (and grumpy).

Effective parenting classes for non-narcoleptic parents of narcoleptics. Your kid’s not just lazy. We’ll teach you how to parent a child with a chronic illness with compassion & how to help instead of harrass.

Family center where the whole family will come and learn about narcolepsy. All chronic illnesses are family illnesses.

Meditation/mindfulness based stress-reduction center. Learn how to handle yourself in a more compassionate way. You won’t always have control, and that’s ok.

Therapy. Therapy. and More Therapy. If you don’t like it, you’ll be rotated on different talk therapists until you find one you like. And then go to group therapy.

Art therapy. Paint your hypnagogic hallucinations. Unless you want to keep it, these paintings will be auctioned at an annual fundraiser to raise money for narcolepsy research.

Narcolepsy Care Page – WEGO Health Activist Writer’s Month Challenge Day 4

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Narcolepsy Care Page

Newly diagnosed – now what? Below is a list of useful resources to help you self-advocate.

Educate Yourself

       Knowing about your disease is the first step in self-advocating. This includes knowing what it is, and (more importantly) what it isn’t. The Wikipedia page on Narcolepsy is one of the most comprehensive sources for information about narcolepsy. And, since it’s Wikipedia, it’s updated often with new developments.

Find other People

      Many narcoleptics have never met another narcoleptic. Meeting someone like you can be an important and emotional event. There are several patient support organizations that have been created for the purpose of outreach and education. The best of these for finding others and becoming involved in the narcolepsy community is the Narcolepsy Network. In addition to yearly conferences (highly recommended), they also have a plethora of resources for doctors and educators that can be useful in self-advocacy work you may do.

        Online communities (particularly Facebook groups) are another good way to connect with others.

Below are a few blogs of individuals with narcolepsy that are particularly inspiring when you’re feeling down:

REM runner : Author and narcolepsy spokesperson Julie Flygare is an influential and inspiring person.

The Madcap MissAdventures of a Narcoleptic: Gina tells her personal stories and struggles with narcolepsy, including her dietary intervention strategy.

Strides Against Narcolepsy: Heather the Runner blogs primarily about symptom management and other goings on in the community.

Dee Daud: Best known for his television appearances, Dee has a great Youtube channel with many videos relating to narcolepsy and narcolepsy awareness.

Facebook Pages:

Gluten Free PWN: a group for people who are using a gluten free diet to mitigate symptoms of Narcolepsy

North Florida Narco

PWN (Persons with Narcolepsy)

Narcolepsy Friends

Strides Against Narcolepsy