Learning

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

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

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.

 

Wordless Wednesday: WEGO Health Activist Writer’s Month Challenge Day3

I painted this last year for a dear friend of mine who also has narcolepsy.

A few of my favorite things about the piece:

1) Black areas of the brain “dotted out” to demonstrate the areas of neurodegeneration seen in narcolepsy.
2) Hand and eyeball to demonstrate the visual hypnagogic hallucinations which are a specific feature of narcolepsy.
3) wave-like motions and sound waves above the reclining spine and brain reminiscent of the wave-like physical and auditory experiences in individuals experiencing hypnagogic hallucinations
4) Lilluptutian hallucinations (the little black men), a not-uncommon feature of hypnagogic hallucinations.. It is also significant that the dreams (i.e. little black men) invade the surrounding space and reside on the area where the chest would be of the person. A “Witch sitting on the chest” is also a common feature of hypnagogic hallucinations and sleep paralysis events.
5) A symbol for science in the upper right hand corner, as a reminder that our scientific efforts can shed light, hope and relief, on all neurodegenerative disorders, among them narcolepsy.
6) White speckles resembling migraine-related auras. These are seen in vascular and neurodegenerative dementia, in epilepsy, neurotoxicities, multiple sclerosis, among others, and may also be seen in narcolepsy on occasion.
 Here’s a close up of the piece. I’m a huge fan of 3D-ness.

 

Starving yourself awake

One day when I was in college, about my second year, I suddenly realized I felt awake. At the time, I had just been diagnosed with narcolepsy, and hadn’t yet discovered gluten free, so to feel actually awake was mind-blowing. After a few days of thinking about it, I realized I was feeling awake because I wasn’t eating. Not only that, but I found several other people talking about not being able to eat without going to sleep, too.  Apparently it was a common experience for some of us.

There is a good blog article documenting this, as well as comments from many other sufferers at N is for Narcolepsy.  While the author describes the opposite of what I previously stated (eating = asleep vs. no eating = awake), the concept is exactly the same.  There’s something about eating that makes many of us tired. Maybe it has to do with glycemic control, carbohydrate content, insulin spikes, and maybe it is a food intolerance, but the it is clear that the orexin/hypocrein system plays a role in controlling postprandial somnolence.

All of this brings me to these four articles:

  1. Sleepiness after glucose in Narcolepsy,
  2. Widespread Distribution of Orexin in Rat Brain and Its Regulation upon Fasting
  3. Differential distribution and regulation of OX1 and OX2 orexin/hypocretin receptor messenger RNA in the brain upon fasting, and
  4. Plasma levels of leptin and orexin A in the restrictive type of anorexia nervosa.

In the first paper, Sleepiness after glucose in narcolepsy, the authors investigated the anecdotal claim (such as those from N is for Narcolepsy shown above), that narcoleptic patients were more tired after ingesting glucose. In this study, they gave 12 narcoleptics (and 12 controls) an additional 50g of glucose in a punch just before allowing them to take a nap.  Overall, they found that narcoleptic patients who ingested glucose had increased sleepiness and decreased wake duration. Additionally, 11 of 12 demonstrated increased REM. This also corroborates the effect of low-carbohydrate diets on sleepiness in narcolepsy demonstrated by Husain et al. covered elsewhere on Autoimmune Patient.com. So, in response to N is for Narcolepsy, I would say that there is good evidence that eating (especially sugar and carbohydrates) makes us narcos sleepy. 

I’m not going to review the second paper, but allow it to serve as a segway to the third paper (Differential distribution and regulation of OX1 and OX2 orexin/hypocretin receptor messenger RNA in the brain upon fasting). In it, the authors examined expression of the orexin 1 and orexin 2 receptor subtypes (OX1R and OX2R; i.e.  receptors for orexin) in the brain. They looked at where the receptors were, and if they were upregulated in different areas of the brain in response to fasting. It should be noted here that OX1R has a moderate specificity for Orexin A, and OX2R can respond probably equally well to both Orexin A and B. Overall, the found that the different receptors had different distribution patterns, but they had some overlapping areas in their expression as well.  I’ve uploaded a graphic below summarizing where the receptors were found and in which areas of the brain.

The importance of differential expression of orexin receptors in different structures of the brain suggests that they play novel roles in multiple circuits, each of which do different things.

For example, expression of these receptors in the lateral hypothalamic and dosomedial hypothalamic regions implicates orexin involvement in feeding behavior, circadian activity, and body-weight regulation.  

Expression in the hippocampal regions suggest orexins are also involved in regulating the monoaminergic systems (for example, histamines, dopamine, serotonin, melatonin, norepinephrine, epinephine and others).  These systems are of obvious importance, particularly because this is the only region of the brain which produces histamine. Histamine has been shown to be critical for wakefulness, and ablation of histamine in the CNS results in hypersomnolence, sleep fragmentation, and increased REM. Additionally, low levels of histamine are found in the CSF of narcoleptics, and is also reduced in animal models.

Additionally, expression of these receptors in the amygdala implicates partial orexin-regulation of memory, attention and emotion. 

In addition to the receptors, orexin itself has also been shown to be upregulated during fasting (and, interestingly, also by insulin-induced hypoglycemia).  

In another interesting study that investigated circulating orexinA levels in recovering anorexic women, found that as anorexic women who began a recovery program and gained weight (as shown by an increase in BMI and leptin levels), their circulating levels of orexin decreased significantly at every time point during the course study.

So what does this all mean? In the first place, it means that the sleepiness exhibited by narcoleptics after eating is real. For some, this may mean that not eating all day, in order to maintain wakefulness.  While certainly this doesn’t seem optimally healthy, it may be a legitimate alternative method to controlling daytime sleepiness for some, particularly in younger patients who may still have functioning hypocretin neurons that have not yet been destroyed by autoimmune attack.  In the second place, it means that dietary restriction can modulate expression of orexin/hypocretin and their receptors in the brain (and speculatively in the gut and pancreas as well).

While it is certain that more literature on the gut/brain axis and the role of the enteric nervous system in narcolepsy is sure to come, it is an exciting time to theorize major players of the disease that may extend beyond the hypothalamus, which may also pave the way for novel treatments or palliative care.