About Narcolepsy / Cataplexy

Narcolepsy / Cataplexy

Research & Treatments

Narcolepsy is a chronic neurological disorder caused by the brains inability to regulate a stable sleep-wake cycle. People who suffer from narcolepsy have mixed signals sent from their brain about when to sleep, which is why narcoleptics fall asleep at inopportune times. One may develop narcolepsy at any time, although onset of the first symptom usually occurs after puberty, in late teens to young adulthood. Excessive daytime sleepiness is the first noticeable symptom of narcolepsy. It can take a number of years for this symptom to progress to a point of concern and for other related symptoms to present. Narcolepsy commonly goes undiagnosed or misdiagnosed because few people realize they are experiencing a neurological disorder when the symptoms begin. It is thought that as many as 125,000 to 200,000 Americans have narcolepsy, although fewer than 50,000 have been properly diagnosed.

What is Narcolepsy?

Causes of Narcolepsy

  The cause of narcolepsy is still unknown, however there is much research being done to find the cause of the disorder. Scientists and researchers believe there are multiple factors that influence the disorder. A recent discovery has shown that people who suffer from narcolepsy lack the chemical hypocretin. This chemical is responsible for the feeling of alertness and aids in sleep regulation. Researchers have also found abnormalities in some regions of the brain that regulate REM cycles in narcoleptics. The current position is that all of these factors contribute to narcolepsy.

Symptoms of Narcolepsy

  People who suffer from narcolepsy can experience a number of symptoms, excessive daytime sleepiness being the most common. Many people who suffer from narcolepsy do not realize excessive daytime sleepiness is a symptom, because daytime sleepiness in their mind is not an indicator of disease. There are other symptoms associated with narcolepsy as well, such as cataplexy and sleep paralysis. Below is a brief description and explanation of the most prominent symptoms most commonly associated with narcolepsy.

Excessive Daytime Sleepiness

  The first symptom to appear is excessive daytime sleepiness, often referred to as EDS. This primary symptom may persist for years before any other symptoms present. EDS is the most prevalent symptom, reported in 100% of narcoleptics. Unlike daytime sleepiness, excessive daytime sleepiness occurs whether or not a narcoleptic has gotten enough sleep. The urge to sleep is almost unbearable, almost an overwhelming urge to fall asleep at in appropriate times. This urge can come and go multiple times though out the day.  People who have EDS often report feeling very fatigued or having low energy. Some related symptoms of EDS are mental cloudiness, lack of energy, depressed mood, extreme exhaustion and automatic behavior. Often when one suffers from EDS, they will also experiences “microsleeps”. These tiny instances of sleep are very brief and last for only a few seconds or minutes at a time. When people awake from a microsleep, they tend to report feeling very refreshed and will be alert for about an hour or two before sleepiness sets in again. During a microsleep, one may continue an activity as if they were awake; these occurrences are referred to as automatic behavior. For instance, if a person had been in a meeting taking notes, they may fall asleep and continue taking notes. However, since a person would truly be sleeping, their cognitive ability is impaired and their note taking would result in scrawling on a notepad.

Cataplexy

Cataplexy is a sudden loss of muscle tone that causes feelings of weakness and loss of voluntary muscle control. Usually cataplexy is the second symptom to present after EDS. By itself, cataplexy could be wrongfully diagnosed as a seizure disorder. Cataplectic attacks vary in severity from slight momentary drooping of the eyelids, to quite severe with the inability to stand. Most commonly, persons with narcolepsy experience mild cataplectic attacks, where arm or leg muscles become weak, speech is slurred or their head droops.  Even in the most severe attacks, sufferers remain fully conscious, entirely aware of what is occurring, and what is happening around them. These attacks can occur randomly, but most often are brought on by any strong emotions. Laughter is reported as the most common stimulus.

Sleep Paralysis

Sleep paralysis is literally the paralysis brought on by ones mind and body entering into REM sleep. This occurs naturally every night when a person is sleeping. When sleep paralysis occurs with narcolepsy, it can happen at any point during ones wakeful hours. Like cataplexy, the person having the episode will remain conscious during the attack. The paralysis lasts briefly, after which the affected muscles will return to normal. Sufferers will rapidly recover from these episodes. The paralysis will not result in any permanent damage, or long-term paralysis. Some who suffer from sleep paralysis report the feeling that they cannot breathe, even though they are able to the entire time.

Hallucinations

There are two different types of hallucinations associated with narcolepsy. Hypnagogic hallucinations occur at the onset of sleep, while hypnopompic hallucinations occur while waking. These hallucinations can occur along with sleep paralysis or as one is falling asleep or waking up.  Both of these hallucinations are a portion of the REM sleep cycle interfering with normal wakefulness. The hallucinations are very vivid and can incorporate what is occurring around the person who is hallucinating. People who have experienced these events report are very frightening and disturbing. Most often, the hallucinations are visual, but they can incorporate all of the senses.

Diagnosis of Narcolepsy and Cataplexy

The first step in diagnosing narcolepsy or cataplexy is discussing symptoms with your healthcare provider.  Generally, narcolepsy and cataplexy are clinical diagnoses – the diagnosis is made by symptom presentation.  Your health care professional may diagnose your condition based on symptoms alone or they may want you to have some testing done. For testing, you may be referred to a sleep specialist or to a sleep center. Most health care providers, whether they are a primary care provider, or a specialist may want a sleep study done to confirm their diagnosis.

If one is visiting their provider for an initial evaluation there are a few different diagnostic tools a health care provider may use to determine your diagnosis.  The Stanford Narcolepsy Questionnaire, which is a rather extensive survey, will aide in diagnosing the severity of ones condition and help determine weather or not you have been experiencing cataplexy and to what degree. The provider may also ask you to fill out the Epworth Sleepiness scale, a brief quiz, designed to determine to what extent you suffer from daytime sleepiness and what the possible causes are. In addition, your provider may ask you to keep a sleep diary for a couple of weeks. This will work as a “log” of a persons’ typical sleep patterns for a health care provider and will assist him or her in proper diagnosis and treatment.

Generally, a health care provider will want to confirm the diagnosis of narcolepsy with a sleep study. The sleep study most commonly includes a polysomnogram (PSG) and a Multiple Sleep Latency Test (MSLT).

A PSG will electrically monitor your psychological state, heart rate, breathing and muscle activity throughout the night. A sleep specialist and your health care provider will analyze the records created to determine what the cause of ones symptoms are. A Multiple Sleep Latency Test (MSLT) will simply measure how long it takes you to fall asleep, or if you are apt to fall asleep when you would normally be awake. The MSLT is usually a videotaped record of a persons’ normal nights sleep.

Through both of these tests, a health care provider will be able to determine if there are any abnormalities during ones REM cycle. In addition, these tests will determine what a persons’ normal level of sleepiness is at night. The results from these tests may also provide a health care professional the opportunity to rule out any external causes of daytime sleepiness.

 

Treatment of Narcolepsy and Cataplexy

  Currently there is no cure for narcolepsy, although research continues. Fortunately, there is treatment for the most disruptive symptoms. At this time, there is more than one treatment option available.

Recently there have been some new medications approved by the FDA for the control of symptoms associated with narcolepsy. Some of these medications work specifically to reduce cataplectic attacks, while others to reduce episodes of EDS. Some health care providers may determine that a combination of antidepressants and stimulants will suffice to manage ones symptoms. As with many medications, there are side effects. Be sure to speak with a health care professional about what the benefits of using a medication could be and about any possible side effects.

Ones health care provider may also suggest some behavioral therapies or lifestyle changes to combat symptoms.  The first step may be to adhere to a sleep schedule and, if possible, avoid shift work. Having ones internal clock set on a regular sleep-wake cycle can aide in alleviating EDS. Your health care provider may also suggest naps of about 15-20 minutes in length scheduled through out the day. Avoidance of heavy meals or alcohol may also leave one feeling less sleepy at inopportune times.

In addition, there are several steps one can take to ensure a restful nights’ sleep; avoidance of caffeine and nicotine are suggested. Regular exercise, as long as it done well before bedtime, does promote restfulness. Make sure ones sleep environment is comfortable and is used only for rest or sex. Also, try to relax before bed by reading a book or taking a warm bath.

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16 Replies to “About Narcolepsy / Cataplexy”

  1. Penny Bloom

    I passed out and when I came to I couldn’t see and then I had double vision and slurred speech. I do not remember passing out or going to the ER. I only remember bits and pieces of the day. They kept me in the hospital from that morning until the next evening. I have narcolepsy. Do you think it could have been cataplexy also? They said it wasn’t a stroke or a TIA.

    • Anonymous

      My mom has narcolepsy cataplexy and says some times it feels like she passes out and comes to very briefly during her episodes

    • Eric Landsman

      I am 52 yrs old and have had catoplexy attacks since my teens. This does not sound to me like a catoplexy attack. I can sometimes have a dozen a day depending how much sleep I don’t get, and mine are severe enough that I fall to the ground, however never have I experienced any of your symptoms. I remember everything before during and after.

    • Steph

      My hypnagogic hallucinations are often demonic in nature although I don’t ever see one. I’ve experienced being lifted off my bed and moving slowly around the room near the ceiling, feeling the softness of the curtains brushing against my arm and then being dropped. I’ve also woken up feeling like I was being dragged off the bed by something clutching my ankle. I’ve had to physically grab onto the mattress to stop myself ending up on the floor. I’ve started screaming because of an intruder in my bedroom. He’s there even though I’m awake with my eyes wide open. Narcoleptics experience a very fine line between dreaming and reality I remember these things as if they actually happened… although, logically, I know they didn’t. It’s not something that’s often talked about but I think it’s one of the worst things about Narcolepsy. The other stuff I can work round by having people around me who know what to do when the cataplexy strikes and I hit the floor. The hallucinations can sometimes get so bad that I fear getting into bed and will just sleep where I fall. I’ve spent a couple of nights sleeping in the dog’s bed!! It’s not all doom and gloom though. There are some decent drugs out there that can alleviate the symptoms to some extent.. and I’ve got loads of funny stories to tell people about the scrapes I’ve gotten into thanks to n/c!

      • Eric

        I have similar day/night dreams, about 15 years ago I saw myself sleeping in bed as I was looking down, scared me so much I can still remember it like it was yesterday and I was straight as could be lol. That’s when I went to doc to find out what the heck is wrong with me. I deal with it the best I can I fact I call myself a professional cataplectic as I know when one is coming and the suverity it’s going to be. Sad but true, you learn how to safely fall.

  2. Coco

    My daughter scared the life out of me last night. I have seen her falling down episodes usually due to laughter and she recovers immediately but last night she was on the floor not moving for at least 5 minutes. I was considering calling the ambulance but she recovered. She is on medication for cataplexy but it is not really effective. Does anyone take anything that actually helps ?

    • Judy

      Yes, I have been taking Zoloft for 20 years and have not had any attacks unless I am very , very tired. Sometimes You need to try several medications to see which works best. Please don’t give up until you find one.

  3. Dona

    What medications are helpful, my sister in law is have a terrible time with narcolepsy and cataplexy. Her cataplexy is severe and she is falling and having horrible days. My brother gets no help from the medical system and he is feeling helpless and frustrated. Help!!! Are there any on line support groups?

    • sleepymedstudent

      Currently the recommended treatments include Effexor Xr(venlafaxine) and modafinil(or another stimulant). Xyrem is also another treatment choice, it is a GHB salt that is taken at bed time and 2 hours later to improve night time sleep. (Many of the the problems with narcolepsy stem from a lack of NREM deep sleep). It is rare disease so you have to be willing to try more than one thing to get what works for you. Physicians are very comfortable giving you what UpToDate says, but there are other medications. Tricyclic antidepressents have worse side effects but are more potent in their treatment of cataplexy. There are many case reports about other treatments, but since narcolepsy is such a rare disease it falls way in the back of the line when it comes to research.

  4. Bobbie Sue

    I’m 32 and was recently diagnosed with Narcolepsy with Cataplexy. For the last 7 years, my parents/fiance thought I was having a seizure or hyperventilating. I would be rushed to the hospital only to be sent home with hyperventilating and passing out. It got to the point where I started hitting my face and my head . In the last year, I’ve managed to obtain 13 beautiful deep scars on my face alone. I’m on mandofinil, two times a day. Some change, but we’re gaining. It’s been a royal pain the Arsenal, but finally grateful I have an answer.

  5. Lisa

    I was just diagnosed a week ago having cataplexy. I never even had any trouble sleeping or attacks until one day I fell in the kitchen floor helpless. I couldn’t use my limbs or talk. I was scared to death thinking I had had a stroke. Spent 2 days in the hospital with the first dr saying it was phycological, which made me my husband and whole family furious because we knew it wasn’t just in my head. As I layed in the hospital wondering what was next my daughter and I started searching the internet for comparable symptoms when I ran across cataplexy. I could have been the poster board for it every symptom explained what I was doing. My Nurse talked to the neuro dr and we finally got some answers. Now at home but my family won’t even think about me driving or going back to work. Do people with narcolepsy/ cataplexy drive and work or is that just me thinking I can still do everything I did before?

    • Sleeping Beauty

      It took me forever to self-diagnose what was going on with me. After years of searching the internet for possible solutions & trying to explain to multiple doctors that I would not only have these “sleep attacks” throughout the day and also while DRIVING, but also lose control of my limbs & speech whenever I laughed or told a joke, I was finally able to convince them to have me tested and sure enough I was right. Diagnosis: narcolepsy/cataplexy. People hear me say it and laugh- their minds seem to automatically think of the movie, “Deuce Bigalow Male Gigolo with Rob Schneider.” Although a great movie, the real thing is so unlike that. The excessive uncontrollable sleepiness throughout the day. Eyelids shutting down on you. My vision gets blurry when this happens and for anywhere between 5-30 minutes I feel like I’m in a complete transe… but when I immediately snap out of it, I barely remember a thing. There is no telling when it will happen but of course, the sleep episodes always have bad timing. It’s when I almost crashed my car on the way home from work one day when I decided to get this shit taken care of.
      The night terrors, like one commenter said above, it’s that fine line between dreaming & reality- like the levels of consciousness based from the movie Inception with gopod ol’ Leo Decaprio… you’re somewhere stuck in the middle and although you know it’s not real, it FEELS real and can be horrifying. Often times I wake up and can’t move. I try to speak or yell for help and nothing comes out- just quiet mumbling until I gain movement.
      The mild paralysis that comes with “heightened” emotions such as laughter can be embarrassing. I’ll be saying or talking about something funny and all of a sudden my eye droops, head gets heavy, speech slurs and knees buckle. I can be on the ground anywhere between seconds to minutes. Hardly anyone in my life really seems to understand it until they’ve witnessed it. I convinced my Doctor to prescribe me adderall. I know I know, It’s not designed for this disease but the other stuff I was taking didn’t work and I knew from always borrowing my roommate’s adderall in college that I would be able to stay awake & focused- which was my main objective. It’s worked 110% for me. It helps with my mood, motivation and of course, staying awake. Of course, over time I’ve developed a tolerance so it’s obviously not AS effective.

  6. Denise

    I was diagnosed with narcolepsy in 1998. I have gone through variou drug treatments. Today I take modafinil. However, lately I fall aseep at inappropriate times, like when I am talking to someone at night. This usually happens between 6 and 9 pm. For the past year I have been getting only 4-5 hours of sleep per night. I use a very good meditation tape to fall asleep and take lorazapam. I go to sleep relative easy but wake up at 2-3:30 am. I am wide awake and sometimes stay up until morning. Other times I am able to get back to sleep for about 2 hours. This sleep pattern is frustrating to say the least. I am wondering if something is happening along with the narcolepsy? I see a new doctor next month and am wondering if a sleep test would be appropriate again. I also have bipolar disorder and experience horrid nightmares.

    • Suraj

      Consult your physician. You may be suffering from insomnia additionally. Please check if it is emerging from medications.

  7. LEEANN S MOONEY

    Lee-Lee

    For me, it started at around four years old and I had awakened my parents in the middle of the night; I was walking in circles in the living room, in a quickened pace, arms perpendicular
    to the floor, rapidly repeating a new found friend’s name. Then the screaming nightmares, the living nightmares which included sleep paralysis and the inability to scream or whisper, or talk at all. Collapses, knee buckling, the fading in and out and EDS, memory lapses, and the reactions from people in your life, family, loved ones. Disbelief and accusations from a few of them. And really bizarre symptoms and since both are considered auto-immune disorders, I had been diagnosed with many AI disorders already– by that point I was diagnosed with Narcolepsy and Cataplexy, about 28 ears ago, and I have been diagnosed with many more AII disorders, too. Right now, I am to ill to work but HERE’S A TIP: every two hours, take a 5-12 minute break, according to what your body is telling you. Is it a nap? Nourishment? Medication? A walk? Sit quietly or maybe just text, or just roll your neck and get on back to work. It’s been one hell of a ride… and not particularly nice. I have been through every kind of episode and took Xyrem for 27 years but voluntarily got off that stuff. If you have questions, please ask. The Cataplexy I found to be dangerous; ditto that for Xyrem.

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