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Narcolepsy

Category: Illness or disabilities

Type

Involuntary

Introduction and description

Narcolepsy is a neurologic disorder characterized by sleepiness and manifestations of disrupted rapid eye movement sleep. Sufferers experience uneven sleep patterns, such as insomnia during the night and excessive daytime sleepiness. 

They experience muscle weakness (cataplexy)  and sometimes sleep paralysis.  Even with 12 hours of sleep someone with narcolepsy may still fall asleep “at inappropriate and often unsafe times”.

I'm so tired of falling asleep all the time
Once, when walking back from work, I woke up in a hedge. Fortunately, it is usually less embarrassing, although the number of shoulders I have fallen asleep on while on trains and buses is too cringeworthy to count. This daytime sleepiness is mirrored by a propensity to wake throughout the night, creating a vicious cycle of sleep interruption and catch-up.

My first realisation that something was not right was aged 15, when I used to fall asleep in lessons. At the time, I put it down to boredom as it only happened at school. But gradually, the uncontrolled exhaustion crept across all subjects taking its toll on my A-levels - resulting in a spell at college to do retakes.
My end-of-term report was something along the lines of: "We are not sure if Edward is any good at maths or not as he is not awake long enough for us to find out."
And so I scraped into university, where I learnt how to mimic a semblance of alertness by balancing my sleeping head on the rubber end of a pencil, whose business end was jammed into my notebook
By this stage I was nodding off four or five times a day. I was banished from attending lectures by visiting speakers, due to the inevitable embarrassment of having one of the students nod off within the opening ten minutes.

Between 60% to 90% of patients [depending on the study] with narcolepsy have cataplexy, characterized by sudden loss of muscle tone.

I'm so tired of falling asleep all the time -  EDDIE BATHA   First paralysis claims your legs - if you don't quickly find somewhere to rest, they'll crumple beneath you. Then, in rapid succession, the muscle tone and sense of feeling ebbs from your arms and torso, and your neck flops over.
You're aware of all this as it happens, but you're powerless to halt the process. Next you lose contact with your voice and mouth and then your sight closes down. Finally, all that is left of you is your hearing and brain, spinning, still alert, in the void of your rag-doll body. But often this, too, closes down. Then suddenly, you wake up again, fully functioning once more.

The condition often goes unrecognised and untreated in people for many years.  It is not uncommon for it to be misdiagnosed and for the person to receive medication that makes them very ill……….

Extracted from the account given by Miranda 
My survival instinct kicked in. I … decided to find a doctor that would listen to me. At my workplace, we had a Neurology outpatient clinic. Without an appointment, I took my chance and slipped into one of the neurologist's offices. I asked him if he could spare me a few minutes to listen to my problem.
This time I went about it in a different way. I described my symptoms to him, not telling him that I knew what it was. He looked at me for a while and asked me if I had ever heard of narcolepsy. .. He made a phone call, and after some time asked me if he could refer me to someone that specialized in sleep disorders.
The neurologist and sleep specialist called me in to their office. I was assured psychiatric evaluation was normal. However, the blood tests came back positive for the narcolepsy gene!
Over the past 12 years since my diagnosis of Narcolepsy, I have had to learn to live with myself, accept that there are things I cannot do. I do not go out in the evening during the week. or I risk the danger of falling asleep at work the next day.
I HAVE to take a two-hour nap in the afternoon otherwise I will be wide-awake at two in the morning. I wake up every two hours during the night, but try not to worry about it. The more I worry the less I sleep!
I practice self-hypnosis to help me fall asleep. Hypnosis, done by a professional, helped me get rid of some of my recurrent nightmares and gave me the skill of self -control, especially of my emotions, because it can get a bit out of hand when I get over tired. The hypnotherapist understands my need to be in control, and has taught me a life long skill to alter my subconscious mind. I am OK!
Miranda is from South Africa.

One very common symptom of those with narcolepsy is hypnagogic hallucinations, quite surreal and rather stunning ones.

Sometimes they are exciting and wonderful, at other times they are frightening, but they are like lucid dreams or hypnagogic states. 

There is a sort of irony in this because those with narcolepsy struggle to maintain a semi normal life receiving more spiritual experiences in a week than most people have in a lifetime and those desperate to have a spiritual experience pay good money for books and courses, practise every day for weeks, months and years to get a lucid dream or into a hypnagogic state and often get nowhere.  

In our western based society, where there is the emphasis all the time on the need to contribute and function ‘normally’ [whatever that means], and achieve and be something or somebody, narcolepsy is treated as an illness.

In the USA in particular there is the constant drive to compete, to do ‘better’, to keep going and pass exams and be top dog and be the best and so on.  It is go go go without rest or respite.  Being sleepy or being a day dreamer, are not options in the American culture [a culture that has sadly seeped perniciously into Europe as well].  So any form of relaxed attitude  - narcolepsy or not - can be diagnosed as a ‘sleep disorder’ and treated with the same drugs. 

For people with narcolepsy the symptoms are obviously distressing in a society in which one is expected to ‘function’, possibly in another type of society where they were simply left to sleep and accepted, then things may be different…

   

Lewis Carroll’s dormouse was a narcoleptic:

Twinkle, Twinkle, Little Bat,
How I wonder what you're at:
Up above the world you fly
Like a tea tray in the sky,
Up above the world you fly
Like at tea tray in the sky.
Twinkle, Twinkle, Little Bat,
How I wonder what you're at:
Up above the world you fly
Like a tea tray in the sky

Extract from Daily Mail article

One woman from Sussex, whose narcolepsy is at the extreme end of the spectrum, has been pronounced dead and taken to the mortuary on three separate occasions, all the while able to hear the fuss going on around her but powerless to do anything to let anyone know she is still alive

Causes

Practically all the medical text books agree that one cause of narcolepsy is “loss of hypocretin/orexin neurons in the hypothalamus likely triggered by environmental factors in a susceptible individual”.   This gets repeated over and over again in all the papers on this subject as if it explained things.  There are some more helpful papers, ……….

Narcolepsy: a review
- Akintomide GS, Rickards H;  Department of Neuropsychiatry, University of Birmingham, Edgbaston, Birmingham, UK.
……….It is thought that narcolepsy with cataplexy is secondary to loss of hypothalamic hypocretin neurons in those genetically predisposed to the disorder by possession of human leukocyte antigen DQB1*0602.
PMID:  21931493

Human leukocyte antigens – HLAs – are  related to immune system functions. [The word antigen is use to mean the proteins encoded by certain genes].  So the cause is genetic in some senses, but is also an auto-immune reaction to some forms of stressor. What is thus important, is that this auto-immune reaction has to be turned on or affected in some way for the narcolepsy to start.

So, if we hypothesise at this stage…… an autoimmune reaction to an external environmental stressor causes the body to believe that hypocretin/orexin is a pathogen.  The immune system then starts to destroy what it thinks is the source of the pathogen and attacks the body’s own orexin producing cells in the hypothalamus.  This in turn then upsets the normal sleep/wake cycle.

Complex movement disorders at disease onset in childhood narcolepsy with cataplexy
- Plazzi G, et al;  Dipartimento di Scienze Neurologiche, Via Ugo Foscolo 7, 40123, Bologna, Italy.

Narcolepsy with cataplexy is most often associated with human leucocyte antigen-DQB1*0602 and is caused by the loss of hypocretin-producing neurons in the hypothalamus of likely autoimmune aetiology.

So what causes the auto-immune response? 

Stress

Stress and very high emotion appears to be a major event that triggers the reaction.  But here we need to be careful.  I think that stress weakens the immune sysytem and once weakened, the actual causes of narcolepsy can do their damage 

Extracted from the account given by Miranda……..
a registered nurse, I decided to work in an acute psychiatric ward. That was a BIG mistake. I encountered my first major stressor in life, and narcolepsy symptoms started developing.

Complex movement disorders at disease onset in childhood narcolepsy with cataplexy
- Plazzi G, et al;  Dipartimento di Scienze Neurologiche, Via Ugo Foscolo 7, 40123, Bologna, Italy.
Narcolepsy with cataplexy is characterized by daytime sleepiness, cataplexy  - sudden loss of bilateral muscle tone triggered by emotions - , sleep paralysis, hypnagogic hallucinations and disturbed nocturnal sleep

Viruses

There is strong evidence that viruses can trigger the reaction.  I have provided an observation to show the link.

Vaccines

Again there is also more and more evidence that vaccination and certain vaccines trigger the autoimmune reaction.  The vaccines that appear to be the problem are those containing 'live' viruses

 

Recently, attention has been raised regarding a spike in cases of childhood narcolepsy in 2010 following the 2009 H1N1 pandemic (pH1N1) in China and vaccination with Pandemrix, an adjuvanted H1N1 vaccine that was used in Europe. PMID: 23725858

Bacteria

"J Clin Sleep Med. 2013 Mar 15;9(3):269-70. doi: 10.5664/jcsm.2498. Narcolepsy-cataplexy: is streptococcal infection a trigger? Natarajan N, Jain SV, Chaudhry H, Hallinan BE, Simakajornboon N. “We report a case of an 8-year-old presenting with narcolepsy-cataplexy following a streptococcal infection . Autoimmune etiology for narcolepsy has been suggested”. PMID: 23493659

 

 

More recently, narcolepsy was identified in association with seasonal streptococcus, H1N1 infections and following AS03-adjuvanted pH1N1 influenza vaccination in Northern Europe. As the brain is not an easily accessible organ, mechanisms of disease initiation and progression remain a challenge to researchers. PMID: 23497937

Pharmaceuticals

A gradually increasing number of pharmaceuticals appear to cause narcolepsy, a number which is in the hundreds.  see LINK.

Toxins

see the observation

Parasites

There is one Pubmed article of 1987 only available as a fulltext scanned copy that also links parasites with narcolepsy 

How it works

How does it work to give you a spiritual experience – hallucinations, visions and waking dreams?

Hypocretin is but one of the neurotransmitters affected by the sleep wake cycle and this cycle – although controlled by the hypothalamus is actually very closely related to GABA – the neurotransmitter which controls total relaxation.  There is a GABA related action during sleep which has knock on effects that affect the hypocretin levels.

The neurotransmitters of sleep
- Siegel JM;  Center for Sleep Research, University of California, Los Angeles, CA 91343, USA.

The part of the brain most important in regulating sleep duration is the hypothalamus. Certain groups of hypothalamic neurons and adjacent groups of basal forebrain neurons produce the neurotransmitter gamma-aminobutyric acid (GABA). Projections of these GABA neurons inhibit the firing of cells involved in wakefulness. Several groups of neurons have been shown to be inhibited by this action--including neurons containing 

  • Histamine
  • Norepinephrine
  • Serotonin
  • Hypocretin
  • Glutamate

 --and this inhibition promotes sleep.  Hypocretin (also called orexin) was discovered in 1998, and its role in sleep and narcolepsy was identified in 2001. Other as-yet undiscovered transmitters are undoubtedly involved in sleep control. The transmitters discussed in this article have been the most thoroughly studied, and many aspects of the role of each of these transmitters in relation to sleep are reasonably well understood.
PMID: 15575797

So GABA inhibits the hypocretin, but in turn the hypocretin then affects the degree of sleep wakefulness in a sort of cyclical action, we have here a control cycle……….

Hypocretin/Orexin excites hypocretin neurons via a local glutamate neuron-A potential mechanism for orchestrating the hypothalamic arousal system
- Li Y, Gao XB, Sakurai T, van den Pol AN.;  Department of Neurosurgery, Yale University, New Haven, CT 06520, USA.
Neurons that release hypocretin/orexin modulate sleep, arousal, and energy homeostasis; the absence of hypocretin results in narcolepsy. ………….The mechanism for this appears to be hypocretin-mediated excitation of local glutamatergic neurons that regulate hypocretin neuron activity, in part by presynaptic facilitation of glutamate release. This represents a possible mechanism for orchestrating the output of the diffuse hypothalamic arousal system.
PMID: 12495630

So the patterns of sleep are managed by the release of glutamate which excites the neurons and brings you out of deeper levels of sleep followed by the release of GABA which sedates you further and further until you fall into a truly deep deep sleep.

The damage to the hypocretin/orexin neurons simply disrupts this cycle because there is not enough release of the hypocretin to cause glutamate to excite you a bit and keep you awake.  You stay awake because of hypocretin and its facilitation of glutamate; you fall asleep or dream or drift off once the GABA calming and sedating influence kicks in.  When hypocretin doesn’t work anymore that is the point you become sedated.

Orexin neuronal circuitry: role in the regulation of sleep and wakefulness. 
-
Ohno K, Sakurai T;  Department of Pharmacology, Institute of Basic Medical Science, University of Tsukuba, Tsukuba, Ibaraki 305-8575, Japan.
Orexin A and orexin B ………activate waking-active monoaminergic and cholinergic neurons in the hypothalamus/brain stem regions to maintain a long, consolidated awake period. …. A link between the limbic system and orexin neurons might be important for increasing vigilance during emotional stimuli. …. These observations suggest that orexin neurons sense the outer and inner environment of the body, and maintain proper wakefulness of animals for survival
PMID: 17910982

So as we can see the cause of the spiritual experience is twofold: 

–   Brain damage to the hypothalamus [caused by an auto-immune reaction] disrupts  the supply of orexin/hypocretin in a random pattern probably related to the degree of damage.  Normally the orexin would cause a release of the glutamate ‘awake’ neurotransmitter, but because there is damage, it doesn’t always work and we fall into a sleep state in which the ‘will’ is still semi active 

–   GABA activity predominates – and its ability to induce a hypnotic state – a sedated state and a resulting state of total relaxation.  This activity is centred in the brain stem – the reticular system

these work together to give you the waking dreams. 

The two centres are inter communicating – in effect the Composer  is intercommunicating with the Will but the communication is being sorely disrupted by the damage to the hypothalamus, so sometimes the Composer is in control giving you a hallucination or dream and at other times the Will is back in control and you snap out of it.

It is worth mentioning that narcolepsy has also been associated with actual damage to areas of the brainstem itself and in this case there may be a different route of action or the damage may be caused by the constant GABA related activity – much as it is with overdoses of benzodiazepines or other GABA agonists

Degenerative pontine lesions in patients with familial narcolepsy
- Stepien A  Staszewski et al;  Clinic of Neurology, Military Medical Institute, Szaserów St., Warsaw, Poland.
The authors present eleven patients from a five-generation family with many members who suffer from episodic excessive daytime sleepiness. Narcolepsy was diagnosed in 9 patients. Sleepiness was frequently associated with cataplexy, hypnagogic-hypnopompic hallucinations and sleep paralysis.  In 9 patients with narcolepsy, decreased thickness of the substantia nigra was found and in six of them degenerative lesions in the pontine substantia nigra were also noticed.

Related observations