Narcoleptic with a Poor Memory?

For as long as I can remember, my sister has always impressed me with her ability to remember things that I never could. My memories of childhood are usually vague at best. As I became older and entered college, I realized that I required a LOT more studying than my colleagues. Where most people could get by on “cramming” material for a few hours before, I had to study all materials for several hours a day before I got it right. When it came to learning something new, it was like.. things just didn’t stick.

After I was diagnosed with narcolepsy, and I went to several patient conferences, I realized that complaints of poor memory were very common among us – yet, again, I was not alone. Indeed, it has been shown that memory and cognition are impaired in narcolepsy.

dendritic spineIt’s been suspected for a long time that sleep can help consolidate memories. So, for a disease like narcolepsy where the basic sleep architecture is disrupted, it makes sense that narcoleptics might have impaired memory.

A recent study reports that sleep promotes memory formation through the formation and maintenance of dendritic spines on neurons. It would be interesting to see if spine formation is impaired in narcolepsy.

Image credit:



Narco Track Bio Hack

January 1st

Narco Track Bio Hack

Use the link above to access the first page of a .PDF which will soon become a 365-day calendar to track your sleep quality.

The calendar is intended for individuals with narcolepsy or other sleep disturbances to be able to track:

  • Time and quality of sleep of the previous night upon waking. Specific sleep disturbances are noted, with an additional column so that you can add your own particular sleep disturbance (restless legs, how many times you awakened, auditory hallucinations, etc.)
  • Medication or vitamin regimen to track how certain vitamins or new prescriptions may be affecting your daily functioning; these are separated in to morning, noon, and night dosages.
  • Modifications or exercise. Many individuals have had a great deal of success in managing excessive daytime sleepiness (EDS) using an exercise routine. You can also note other “mods” here, including light box/blue light therapy, stretching, or whatever you do to help you wake up and stay awake.
  • A quick food log. While this isn’t a place to keep a detailed food diary, you can make quick notes about what you ate. It is also encouraged that you keep track of the carbohydrate content of each meal and snacks throughout the day; many narcoleptics note that carbohydrates in the diet significantly increase morning and daytime sleepiness.
  • Narcolepsy and cataplexy attacks.  You can note how many EDS/naps/cat attacks you have throughout the day. They are positioned strategically between meal times to help you pinpoint specific food triggers that you may be experiencing (for example, I have noticed that I will nap after meals containing more than 30g / carbohydrate).
  • Daily Epworth Sleepiness Scale. Use the Epworth Sleepiness Scale form at Narcolepsy to track how tired you are feeling on a day to day basis. Over time this can let you know how your changes in exercise, daily routine, diet, and medications  are affecting your symptoms of narcolepsy overall.
  • Red box summary. This is my favorite part of Narco Hack Bio Track. It has a one box summary of whether or not you had daily consumption (or potential exposure) to gluten, your alcohol consumption, and your total carb count for the day. For days you don’t have time to fill out the entire form, try just using this box (in combination with the Epworth Sleepiness Scale box) for a quick and dirty for your gluten/carb count.

Happy Tracking!

Wheat Woes: All In Your Head?

Gluten free is without a doubt, one of the newest “fad diets”, and the issue is being hotly debated in the blogosphere and medical communities alike [1,2].  Gluten free is being criticized as trendy, and as an option for individuals who “just want to lose weight,” or believe that a gluten free diet will make them feel better. “Self-diagnosis” of a gluten sensitivity igluten frees common and shunned upon by most of the medical community, even though a diagnosis by exclusion is still the best and only way to diagnose non-celiac gluten sensitivities. The reaction by some when you chose not to eat a particular food group is shock and concern for your health, as if not eating bread will cause you more harm and this concept that you could end up with “severe nutritional deficiencies“. Let’s be clear, so long as you replace the gluten in your diet with healthy alternatives, you are likely not going to “miss out” on any nutrients, which are usually artificially added to wheat, anyway.  Check out The Paleo Mom for a great article on the subject here.

When I first became gluten free, you either had biopsy-confirmed celiac disease or it was all in your head. I had the good fortune of having a doctor trained in Greece, who was more a fan of “if it made you feel better, then do it.” I did a rotation diet under his guidance, and discovered a severe sensitivity to wheat, although I was never diagnosed with “celiac disease,” (nor do I have the most commonly recognized susceptibility genes for it).

Initially in the literature, many scientists and practitioners argued if “non-celiac gluten sensitivity” was even a real thing. Apparently, many doctors had experienced people insisting they were sensitive to gluten, without any trace of official celiac disease on their medical records or diagnostic exams. For the last 3-5 yearsthe health community at large did, and still does to a considerable degree, consider non-celiac gluten sensitivity a fad-diet.  Even still, perception and opinion persists among the medical and scientific communities, that if people don’t have “markers” for celiac disease, “there’s no evidence that the protein can do any lasting harm,” and only individuals with biopsy-confirmed celiac disease can benefit from a gluten free diet. There are even some with biopsy-confirmed celiac disease who have grown resentful of the “gluten free craze” and can’t wait for it to end.

Fortunately, very recent literature has done two things for us. In the first case, a study was conducted to determine that individuals with non-celiac gluten sensitivity weren’t just a bunch of liars with personality problems — whew, what a relief!

Secondly, current literature has refuted the fad-hypothesis and identifies non-celiac wheat sensitivity as a distinct clinical condition, which may present as a spectrum of related complications — from migrane to skin rashes to psychosis or depression.  What’s more is that wheat/gluten sensitivity looks different in different individuals.  Moreover, you’re talking about a patient population of 18 million Americans (compare that to only 100,000 American narcoleptics)

That’s not to say that there are probably people adopting a gluten free diet that don’t necessarily need to. These people are otherwise healthy, are completely gluten tolerant, get no (obvious) positive benefits from removing gluten from their diets and are really getting ripped off by a lot of companies trying to make a buck.

However, there are many ways that gluten can cause ill-effects outside of classical celiac disease. Indeed, gluten sensitivity often lies outside of intestinal pathology, per se, and rather manifests with extra-intestinal symptoms, including neurological issues. Take the case of celiac and non-celiac gluten sensitivity in schizophrenia, for example.

Sleep architecture has also been shown to be impaired in those with celiac disease, but whether these same disturbances occur in “non-celiac” sensitivities are not yet fully reported. Anecdotal evidence would suggest yes. Reports of hypnagogic hallucinations, sleep paralysis, and nightmares are common in people who have discovered an underlying gluten intolerance.

So, how could this be?

Firstly, you can’t find what you aren’t looking for.

It is apparent that non-celiac disease gluten sensitivity is not celiac diseaseIn that way, if you go looking for classical diagnostic markers of celiac disease, they won’t be there. Does this mean that you aren’t still gluten intolerant or wheat-sensitive? Absolutely not.

At the end of the day, elimination diets are still the clinically best way to determine if you have a non-celiac gluten sensitivity. After you have determined with your doctor that you do not have celiac disease, remove gluten for three weeks. If you feel better after removing it, you are likely sensitive.

Passive Transfer of “Narcolepsy” in Mice

J Autoimmun. 2013 Jul 5. pii: S0896-8411(13)00084-X. doi: 10.1016/j.jaut.2013.06.010. [Epub ahead of print]

Passive transfer of narcolepsy: Anti-TRIB2 autoantibody positive patient IgG causes hypothalamic orexin neuron loss and sleep attacks in mice.


Dept. Neurology and Sagol Neuroscience Center, Sheba Medical Center, Tel-Hashomer, Israel; Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center, Tel-Hashomer, Affiliated to Sackler Medical School, Tel Aviv University, Israel.


Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness and cataplexy (a sudden weakening of posture muscle tone usually triggered by emotion) caused by the loss of orexin neurons in the hypothalamus. Autoimmune mechanisms are implicated in narcolepsy by increased frequency of specific HLA alleles and the presence of specific autoantibody (anti-Tribbles homolog 2 (TRIB2) antibodies) in the sera of patients with narcolepsy. Presently, we passively transferred narcolepsy to naïve mice by injecting intra-cerebra-ventricularly (ICV) pooled IgG positive for anti-TRIB2 antibodies. Narcolepsy-IgG-injected mice had a loss of the NeuN (neuronal marker), synaptophysin (synaptic marker) and orexin-positive neurons in the lateral hypothalamus area in narcolepsy compared to control-IgG-injected mice and these changes were associated with narcolepsy-like immobility attacks at four weeks post injection and with hyperactivity and long term memory deficits in the staircase and novel object recognition tests. Similar behavioral and cognitive deficits are observed in narcoleptic patients. This is the first report of passive transfer of experimental narcolepsy to naïve mice induced by autoantibodies and supports the autoimmune pathogenesis in narcolepsy.

Copyright © 2013 Elsevier Ltd. All rights reserved.


Anti-Tribbles homolog 2 (TRIB2) antibodies, Behavioral deficits, Narcolepsy, Orexin, Passive transfer


Histamine, narcolepsy and “idiopathic” hypersomnia

Histamine is critical for maintaining arousal and wakefulness. The sole source of histamine in the brain is a region called the TMN (tuberomammillary nucleus) in the posterior hypothalamus. The hypothalamus is also where orexin comes from in the brain. Like orexin, neurons which make histamine (called histaminergic neurons) have far-reaching projections in the brain. Because of this, again, like orexin, these neurons are implicated in many different physiological states including sleep-wake control, learning, emotional status, and memory formation.

Most of us have experienced the histamine wakefulness-promoting effect when we have taken anti-histamines (Benadryl, etc.). The #1 side effect that most people notice is drowsiness. This is due to the fact that anti-histamines bind and antagonize histamine receptors (H1 receptors). Anti-histamines block histamine signaling in the brain.

In health, histominergic neuron activity is highest during wakefulness, and is becomes nearly undetectable during sleep (REM and NREM).

It has been shown previously that  people with narcolepsy have low CSF histamine. In addition, the lower the corresponding orexin levels, the lower the histamine levels; indicating that proper orexin signaling in the brain is crucial for proper histaminergic signaling. The same trend has been shown for those with idiopathic hypersomnia.

Mouse models have also demonstarted a link between histamine and sleep impairment. Histamine deficient (HDC KO) mice display sleep fragmentation and increased REM sleep during the light period along with profound wakefulness deficit at dark onset, a condition that sounds intriguingingly similar to narcolepsy. Moreover, sex differences in histamine deficiency have been demonstated in mice: female HDC KO mice demonstrated “hypoactivity, increased measures of anxiety, impairments in water-maze performance, but enhanced passive avoidance memory retention.”

Currently, it has been hypothesized that histaminergic neuron activity of the TMN may be reduced in individuals with narcolepsy.

Somewhat unexpectedly, researchers have also recently discovered an increase in the number of histaminergic neurons in people with narcolepsy. And, they didn’t find just a modest increase – they found narcoleptics had up to 94% more histaminergic neurons! They also confirmed their human findings using orexin knock-out mice, which displayed a similar increase.  It has now been suggested that this drastic increase in histaminergic neurons may be a compensatory effect of orexin loss.
It was recently demonstrated that, contrary to expectation, individuals with narcolepy may have more histaminergic neurons in the TMN.

It was recently demonstrated that, contrary to expectation, individuals with narcolepy may have more histaminergic neurons in the TMN.

It is important to note that just because there are more histaminergic neurons, does not mean that there is more histamine. This previously mentioned study has been incorrectly represented in mainstream media already. As mentioned before, we already know that narcoleptics have lower CSF histamine.
Histamine has been implicated in neuroinflammation. Experimentally, histamine has been demonstrated to be neuromodulatory/regulatory in multiple sclerosis (“EAE” is the murine experimental version of the human disease MS).  Unlike individuals with narcolpesy, people with active multiple sclerosis have higher levels of CSF histamine, although it is probable that elevated histamine is a feature of neuroinflammation in general.  If narcolepsy is a true neurological autoimmune disease, one would expect elevated CSF histamine. It’s important to note that how CSF histamine changes over time in narcolepsy is not known.
Histamine has also been implicated in neurogenesis. I’ve already discussed this concept to some degree here (although I should point out that was discussing a different region of adult neurogenesis).  This has been demonstrated largely in the subventricular zone (SVZ), which is a known area of adult neurogenesis and has implications for repair following injury. The image below shows the respective regions (SVZ) in relation to the hypothalamus (where orexin neurons are).CaptureWhat does it mean for narcolepsy?  Why would narcoleptics have low histamine and a compensatory increase in the number of histmaine-containing neurons?

L-Carnitine and Narcolepsy

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




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

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

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

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.