Narcolepsy & IH

Disorders of Primary Hypersomnia have usual age of onset from 15-20 years of age, But many times diagnosis is not made till decades later

Narcolepsy and Idiopathic Hypersomnia are disorders of sleepiness that are due to brain reasons, that is why they are called “Central Hypersomnias”.

Narcolepsy is known as being a disorder of sleepiness. And though that is true, it is more then that. I describe Narcolepsy more as a problem with sleep-wake regulation, more specifically a REM sleep dysregulation.

Symptoms of Narcolepsy include Sleepiness, Cataplexy, Sleep Paralysis, Hypnopompic Hallucinations, and Fragmented Sleep. What?

Remember in Sleep 101, in REM we dream and our bodies have low muscle tone, almost a paralysis.

Sleepiness: Patients with Narcolepsy do have a sleepiness that is objectively measured to be more then that of the general population. And they can have sleep attacks, uncontrollable urges to sleep.

Cataplexy: This is a low muscle tone through the body. Remember, in REM our muscle tone is lower. It is an intrusion of the REM low muscle tone while one is awake. Specific triggers do include emotion such as laughter, anxiety, fear, excitement.

Sleep Paralysis: You are awake, you know you are awake, but your body cannot move, cannot yell. Terrifying experience, especially if you do not know you have Narcolepsy and cannot understand what is happening. But it is the REM paralysis that is intruding to the daytime.

Hallucinations: Narcolepsy is not psychosis. The images are dreams while you are awake. The text book says they are visual, however many people have also mentioned hearing sounds and even feeling as if they have been touched.

Fragmented Sleep: Just as one has REM intruding to their wake pattern, wake can intrude into there sleep pattern. The complaint of insomnia in people with Narcolepsy is about as common as cataplexy.

How do we test for Narcolepsy?

But what if there were no SOREMPs?

Idiopathic Hypersomnia is another disorder of sleepiness. To better understand both disorders I advise to review some of the science of alertness.

What influences wake?

There are neurotransmitters that are wake promoting. Examples include Dopamine, Norepinephrine, Histamine, Serotonin, and Hypocretin/Orexin. This explains why an “anti”histamine makes one sleepy. Of all of these, serotonin is actually the least alerting. Most medications that influence wakefulness increase levels of Norepinephrine and Dopamine.

Hypocretin/Orexin is a neurotransmitter that promotes wake/alertness. It is also involved in the regulation of REM sleep. Patients with Narcolepsy have less Hypocretin/Orexin when spinal fluid measurements are done. This helps explain why they have sleepiness. It also helps explain why patients with Narcolepsy have intrusions of REM sleep into the daytime giving symptoms of cataplexy, vivid dream like hallucinations, and sleep paralysis.

Less is known about Idiopathic Hypersomnia, however studies that have been done on spinal fluid showed less levels of Histamine. This may help explain why patients with IH have sleepiness, but without some of the REM like symptoms.

A common concern in Narcolepsy and Idiopathic Hypersomnia is a feeling of having no control of their symptoms. This leads to despair and loss of hope.

Patients with Narcolepsy and IH do not have control of the decrease of their affected wake/alertness promoting neurotransmitters. But what do they have control of? There are several other factors that influence sleepiness and wakefulness. Let’s discuss these.

Adenosine.

Anything that gives energy also gives a waste product. Gasoline gives your car energy, and the waste product of exhaust comes out the muffler. Our brain uses glucose for energy, and the waste product is Adenosine which makes one the feeling of “exhaust”. In the first half of one’s sleep, the deep slow wave sleep washes away the Adenosine/exhaust. Having inadequate sleep at night may result in feeling exhausted in morning. Also, Caffeine inhibits the build up of Adenosine/exhaust in one’s brain.

In Control:

– Scheduling naps allow for an early portion to help reduce some Adenosine/exhaust build up.

– Caffeine consumption can allow to help lower levels of Adenosine/exhaust.

– Setting regular bed times to allow for sufficient sleep.

Hydration.

Have you ever woken up at night because you had to use the bathroom? So being well hydrated is alerting! Have you ever felt fatigued after excessive sweat or on a go-go-go day that you didn’t have time drink any water? People commonly ask how much water one needs to drink per day. My answer is to look at your urine. If it is yellow you are slightly dehydrated, and if it is clear like water you are well hydrated.

In Control:

– Staying well hydrated.

– I commonly write a letter allowing for a student to be allowed to carry water with them at school, as well as allowing for frequent bathroom breaks.

Sleep Disorders.

An estimated 50% of patients with Narcolepsy have insomnia. An estimated 25-50% of patients with Narcolepsy can have sleep apnea. Large portions of the general population can have these disorders, as well as other disorders (ex: Restless Legs Syndrome).

In Control:

– Evaluation for identification and treatment of other sleep disorders that may further contribute to sleepiness.

Posture.

It is commonly observed in many people, when they slouch they get tired. There is a reason a teacher will tell one to sit up straight, the spinal muscles send messages to stimulate nerves in the Reticular Activating System (wake/alertness promoting area of the brain).

In Control:

– Taking moments to regularly sit up straight.

– Exercising one’s core muscles to promote good posture.

– Comfortable chairs that promote good posture.

Food.

Ghrelin is a hormone that gives one a sensation of hunger, and it also equally causes alertness. In no way am I suggesting to self induce hunger for alertness. However heavy meals have the opposite effect, they are sleep inducing. Also fat cells secrete leptin which helps regulate feeding drive as well. Leptin is secreted in proportion to the amount of fat cells one has. High levels of leptin have been associated with sleepiness.

In Control:

– Avoiding heavy sedating meals.

– Regular exercise decreases body fat which also decreases leptin levels.

Mindfulness.

An observation that I have made is that when people practice Mindfulness and other types of meditation, they get sleepy. This has been universally observed to the point where techniques have been cultivated to be wake promoting to help keep one from falling asleep. Posture is one as discussed above. Another is the visualization of white light, such techniques allow Buddhist monks to stay alert for very long durations of meditation. Also, Mindfulness can be practiced to improve attention span and decrease anxieties.

In Control:

– Finding a studio or a mentor that can help one build meditation skills.

REM Dysregulation.

Patients with Narcolepsy have less Hypocretin/Orexin which causes intrusions of REM sleep into the daytime giving symptoms of cataplexy, vivid dream like hallucinations, and sleep paralysis. These are commonly triggered by emotions. Antidepressants commonly suppress REM, which is why they can reduce these symptoms. Sodium Oxybate is a medication that consolidates sleep at night, and with better sleep consolidation there are less daytime REM intrusion symptoms.

In Control:

– Choice of whether to take REM suppressing medication, and avoidance of such medications that cause sleepiness in daytime.

Emotions.

Emotions commonly bring symptoms of REM intrusion to a person with Narcolepsy. It is NOT a simple “mind over matter”. It is biological and due to less Hypocretin/Orexin levels. However all people may benefit from emotional regulation. It is not okay for someone with problems with impulse control to yell “fire” in a crowded building or for an angry person to hit another in domestic violence. Emotions do influence our biology in many ways.

In Control:

– Counseling on emotional regulation.

– Finding a mentor in Mindfulness may also be helpful.

Company.

When a person walks into a party with people smiling, they feel happy. When one walks into a principal’s office and there’s a boy with the look of dread staring at the floor, one may feel anxious. One can’t control their Hypocretin/Orexin levels, but we do have control of the company we keep. Friends of mine with Narcolepsy tell me that she feels more upbeat when they are around people that are motivated and energized, and likewise they feel more drained when they are around negativity. There is a neurobiology to this as well, and it is called mirror neurons. This is how a baby will stick its tongue out when you do. Through mirror neurons a smaller child may imitate the kicking that an older sibling does in a karate class, and equally it’s why an older sibling with a well formed vocabulary engages in the baby talk of its younger sibling. Winnie the Pooh can choose to hang out with Tigger vs. Eeyore and Smurfette can choose whether to date Handy vs. Grouchy.

In Control:

– There are moments that it is okay to disconnect with people that infuse negativity.

Smile.

Stand in front of the mirror and smile for 10 seconds. Did that make you feel happy? Now do the opposite, stand in front of the mirror and frown. Does that give you a sensation in your gut that is not pleasant? There is a neurobiology to this as well. The nerves of our muscles of facial expression come from our brainstem. The brainstem also has connections to our limbic system which is our emotional area. The brainstem actually has other nerves that communicate with the emotional limbic area that then go back to our body including our heart and gut. In feelings of happiness we are contracting muscles that raise the cheek in combination which pulls up the corners of the lips. This also sends input to our emotional area and to our body as well as it gives a “heartfelt” feeling. And when we frown we indeed feel sad. When inner parts of his eyebrows shoot up you may feel distress and anguish. Narrowing of the red margin of the the lips is a reliable anger sign. This is also communicate with nerves that go down to our body and give us a “gut feeling” that something is wrong. Once again, this is also where mirror neurons will make us feel what others our feeling. The emotion of anguish can be exhausting!

In Control:

– Take the time to smile whenever you come across a mirror.

– Notice when you feel sad, attempt to find something that brings you a happy thought and smile.

– Tell a child you like their smile, it will build confidence in their smile. When they are confident in their smile, they will smile more. When you smile more, you will feel better.

Monitoring.

Have you ever had a bad night’s sleep but still got through the day? Have you ever had great sleep and still felt tired the next day? When you get a bandaid taken off as a child do you instruct the child to stare at it, or to look away and distract them? PWN and IH can’t control that they have a disease with objective sleepiness, once again it is not mind over matter. However if anyone monitors for signs of fatigue, they will eventually find the sensations of tense shoulders, heavy eyes, and mental fog.

In Control:

– Regular practice with Mindfulness, Yoga, or any other type of meditative practice.

Alerting Medications.

Generally medications that are wake/alertness promoting increase levels Dopamine and/or Norepinephrine. These medications may last for different durations in different people.

In Control:

– Choice of whether one takes medications or not.

– Taking a long acting medication if we need to get through the day.

– Taking a short acting medication either as needed, or when one feels a long acting medication wearing off.

– Avoidance of sedating medications is also advised.

Caffeine Use:

I am not advocating caffeine overuse. It is my general experience that patients with hypersomnia have and will use caffeine for symptoms of Excessive Daytime Sleepiness. I am not advocating caffeine pills or other preparations. I have provided caffeine content of FDA approved formulations as a point of reference. I have advised not to exceed the FDA studied dose at 200 mg every 3-4 hours. I have advised not to mix different types of caffeine preparations. I have advised against caffeine in afternoon as it may cause insomnia, though I have advised that a dose of a caffeinated beverage after lunch may help in staying alert during a physiological tendency towards sleepiness. I have advised not to consume caffeine after that after lunch period if they should choose to use such. I have advised to look at serving size of all caffeinated beverage preparations in order to not exceed doses beyond FDA approved safety dosages. I advise that if a patient is to use caffeine, that they choose a particular formulation that they have found to be effective and tolerated and that they consistently use that particular preparation.

CAFFEINE CONTENT:

FDA Approved Caffeine Preparations:

NoDoz, Vivarin – 1 tablet contains 200mg of caffeine – Q 3-4 hrs; Max 8 tabs in 24 hrs

Excedrin Migraine (Acetaminophen, ASA, Caffeine) – 1 tab 65 mg of caffeine

FDA official limit for cola or pepper soft drink – 12 oz – 71 mg (range 35-72mg)

Other Caffeine:

Coffee – (8 oz) Generic Brewed – range 102-200 mg

Coffee – (8 oz) Generic Decaf – range 3-12 mg

Starbucks Brewed Coffee – (16 oz) Grande – 320 mg

Tea – (8 oz) Generic Brewed – range 40-120 mg

Red Bull – (8.3 oz) – 80 mg

Monster – (16 oz) – 160 mg

5-Hour Energy – (2 oz) – 138 mg

Caution: Spike Shooter – (8.3 oz) – 300 mg

Always check serving size!

Hershey Chocolate bar (1.5 oz) or Hot Cocoa (8 oz) 3-13 mg (However sugar content induces sleepiness).

My heart goes to people with Narcolepsy and Idiopathic Hypersomnia. Where my heart goes, so does my thoughts and energy.

My goal is to encourage others to encourage others.

www.ParadiseSleep.com