Narcolepsy awareness is on the rise but many people are still not well educated on what Narcolepsy is or how it affects someone who has it. Some of the responsibility falls on those who have it but keep quiet, which I completely understand because there tends to be a stigma associated with Narcolepsy (due to lack of awareness) so it's a vicious cycle.
I am going to do my best to explain this as clearly as possible but I warn you, there will be some science jargon so put on your learning hat. ONWARD!
Narcolepsy is an autoimmune disease
This was confirmed quite recently so let me break this down.
Your immune system is a complex network of structures and biological processes that protects your body from disease.
An autoimmune disease is when "something" causes your immune system to attack normal cells instead of a foreign infection. In the case Narcolepsy the immune system kills neurons in the brain that produce Hypocretin(also called Orexin). I am going to briefly explain Hypocretin with the magic of "copy and paste" in a moment because I have tried to explain it and had to rewrite this part so many times that I just noticed 2 hours have gone by! The problem with explaining the science behind narcolepsy is that so much is still unknown and "some science jargon" turned into me writing a research paper that could have been submitted to some medical science board. So copy and paste time! (Yes it is incredibly over simplified but I TRIED AND FAILED)
Narcolepsy is mostly caused by the gradual loss of neurons that produce hypocretin, a hormone that keeps us awake. Many scientists had suspected that the immune system was responsible, but the Stanford team has found the first direct evidence: a special group of CD4+ T cells (a type of immune cell) that targets hypocretin and is found only in people with narcolepsy.
LINK Here
Oh, and there is no cure.
Moving on...FINALLY!
Narcolepsy side effects (These effects affect people differently)
1.Cataplexy
About half of the people that have narcolepsy experience cataplexy, the reason for this is still unknown. It is a sudden, short loss of muscle strength that is usually triggered by strong emotion such as anger, surprise, or even laughter. Cataplexy can range in severity from mild (brief weakness in the face or knees) to severe (resulting in a complete physical collapse).
2. Excessive daytime sleepiness "EDS"
Though it sounds mild, I assure you that this can be debilitating. Feeling extreme exhaustion. EDS can intensify after experiencing the emotions that also trigger cataplexy.
3.Nighttime wakefulness
Some may have periods of wakefulness at night with hot flashes, elevated heart rate, and sometimes intense alertness.
4. Hypnagogic Hallucinations "HH"
Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.
5.Sleep paralysis
A breif loss in muscle tone that occurs when a person is alert while their body is in the process of falling asleep or waking up. It can be very frightening because they can not move or speak and sometimes HH occurs at the same time.
6. Disrupted nighttime sleep
Despite experiencing EDS during the day, many narcolepsy sufferers also report having insomnia or disrupted sleep. Sleep is described as "not restorative".
7. Automatic behaviors
Some people may report performing habitual tasks while not being fully aware of it at the time. (Micro Sleep) they may even fall asleep and continue an activity.
8.Rapid entry into REM
Entering into REM(dream phase) right after falling asleep where as most people usually enter REM 90 minutes after falling asleep. This explains HH and sleep paralysis if the person isn't completely asleep yet.
9.Other symptoms reported
Problems with concentration/memory/attention(brain fog), occasional double vision, trouble losing weight, depression, anxiety..
Alright, I would like to keep going but I am done for the day. I slept quite horribly last night, which really bums me out. I was hopeful that I would get to sleep pretty quickly because I did a lot throughout the day and was super ready for bed by the end of the day but I had a hard time falling asleep and I was in and out a lot. I promise my next post will be a lot more personal, I just wanted to give people a brief look at what Narcolepsy is. I really wish I didn't waste all that time getting way too in depth with the science of it! As I said, there is so much we still don't know but what I do know is that Narcolepsy is complicated, it makes everything I do more difficult than it has to be, it has caused me to lose friends, it has caused me to live/act/come off in a way that resulted in people calling me unmotivated, unhealthy, flaky and lazy, people telling me that I am depressing to be around and that I am going no where in life. Narcolepsy is widely misunderstood but as I said at the beginning, awareness is on the rise and I am taking part in it. This blog is my first contribution to the cause. I plan on having many more.
Before I go, please feel free to ask questions! There is a contact button near the top of the page, also links to my email and facebook in the upper right hand corner of the page. Read the contact page for information about contacting me =)
I am going to do my best to explain this as clearly as possible but I warn you, there will be some science jargon so put on your learning hat. ONWARD!
Narcolepsy is an autoimmune disease
This was confirmed quite recently so let me break this down.
Your immune system is a complex network of structures and biological processes that protects your body from disease.
An autoimmune disease is when "something" causes your immune system to attack normal cells instead of a foreign infection. In the case Narcolepsy the immune system kills neurons in the brain that produce Hypocretin(also called Orexin). I am going to briefly explain Hypocretin with the magic of "copy and paste" in a moment because I have tried to explain it and had to rewrite this part so many times that I just noticed 2 hours have gone by! The problem with explaining the science behind narcolepsy is that so much is still unknown and "some science jargon" turned into me writing a research paper that could have been submitted to some medical science board. So copy and paste time! (Yes it is incredibly over simplified but I TRIED AND FAILED)
Narcolepsy is mostly caused by the gradual loss of neurons that produce hypocretin, a hormone that keeps us awake. Many scientists had suspected that the immune system was responsible, but the Stanford team has found the first direct evidence: a special group of CD4+ T cells (a type of immune cell) that targets hypocretin and is found only in people with narcolepsy.
LINK Here
Oh, and there is no cure.
Moving on...FINALLY!
Narcolepsy side effects (These effects affect people differently)
1.Cataplexy
About half of the people that have narcolepsy experience cataplexy, the reason for this is still unknown. It is a sudden, short loss of muscle strength that is usually triggered by strong emotion such as anger, surprise, or even laughter. Cataplexy can range in severity from mild (brief weakness in the face or knees) to severe (resulting in a complete physical collapse).
2. Excessive daytime sleepiness "EDS"
Though it sounds mild, I assure you that this can be debilitating. Feeling extreme exhaustion. EDS can intensify after experiencing the emotions that also trigger cataplexy.
3.Nighttime wakefulness
Some may have periods of wakefulness at night with hot flashes, elevated heart rate, and sometimes intense alertness.
4. Hypnagogic Hallucinations "HH"
Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.
5.Sleep paralysis
A breif loss in muscle tone that occurs when a person is alert while their body is in the process of falling asleep or waking up. It can be very frightening because they can not move or speak and sometimes HH occurs at the same time.
6. Disrupted nighttime sleep
Despite experiencing EDS during the day, many narcolepsy sufferers also report having insomnia or disrupted sleep. Sleep is described as "not restorative".
7. Automatic behaviors
Some people may report performing habitual tasks while not being fully aware of it at the time. (Micro Sleep) they may even fall asleep and continue an activity.
8.Rapid entry into REM
Entering into REM(dream phase) right after falling asleep where as most people usually enter REM 90 minutes after falling asleep. This explains HH and sleep paralysis if the person isn't completely asleep yet.
9.Other symptoms reported
Problems with concentration/memory/attention(brain fog), occasional double vision, trouble losing weight, depression, anxiety..
Alright, I would like to keep going but I am done for the day. I slept quite horribly last night, which really bums me out. I was hopeful that I would get to sleep pretty quickly because I did a lot throughout the day and was super ready for bed by the end of the day but I had a hard time falling asleep and I was in and out a lot. I promise my next post will be a lot more personal, I just wanted to give people a brief look at what Narcolepsy is. I really wish I didn't waste all that time getting way too in depth with the science of it! As I said, there is so much we still don't know but what I do know is that Narcolepsy is complicated, it makes everything I do more difficult than it has to be, it has caused me to lose friends, it has caused me to live/act/come off in a way that resulted in people calling me unmotivated, unhealthy, flaky and lazy, people telling me that I am depressing to be around and that I am going no where in life. Narcolepsy is widely misunderstood but as I said at the beginning, awareness is on the rise and I am taking part in it. This blog is my first contribution to the cause. I plan on having many more.
Before I go, please feel free to ask questions! There is a contact button near the top of the page, also links to my email and facebook in the upper right hand corner of the page. Read the contact page for information about contacting me =)