How Can I Help Research
The NINDS supports the NIH NeuroBioBank, a national resource for investigators using human post-mortem brain tissue and related biospecimens for their research to understand conditions of the nervous system. The NeuroBioBank serves as a central point of access to collections that span neurological, neuropsychiatric, and neurodevelopmental diseases and disorders. Tissue from individuals with narcolepsy is needed to enable scientists to study this disorder more intensely. Participating groups include brain and tissue repositories, researchers, NIH program staff, information technology experts, disease advocacy groups, and, most importantly, individuals seeking information about opportunities to donate. More information about NeuroBioBank and opportunities to donate tissue is available at .
Additionally, the NINDS supports genetic and immunological research in narcolepsy at Stanford University. Blood samples from individuals with narcolepsy can be sent by mail and are needed to enable scientists to study this disorder more intensely. Prospective donors may contact:
Stanford University Center for Narcolepsy450 Broadway Street
Office of Communications and Public LiaisonNational Institute of Neurological Disorders and StrokeNational Institutes of HealthBethesda, MD 20892
Low Levels Of Hypocretin
Almost everybody who suffers from narcolepsy and experiences the symptom of cataplexy has very low levels of a neurotransmitter known as hypocretin, which controls REM sleep and promotes wakefulness. However, hypocretin levels are typically normal in those who suffer from narcolepsy without cataplexy.
Delete Negative Messages Or Influences From Your Life
If you want to manage narcolepsy, positive thinking is a must. You have to know you CAN deal with what you have. That may require you to ask for help, or take things off your plate. You have to decide that YOU are in control and can find a way to live well.
Surround yourself with positive messages, practice positive affirmations, and follow hashtags or pages with positive messages. Research shows that we are constantly comparing ourselves to what we see on social media, so the best thing to do may be to delete it! But if that is not an option, make it a positive space for yourself!
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Our Emotional Experiences And Dreams
People with narcolepsy type 1 and narcolepsy type 2 have different emotional experiences, even during sleep than healthy subjects. The research indicates that people with narcolepsy use coping strategies to avoid unpleasant thoughts and emotions in the form of lucid dreaming.
The emotions during sleep are also different than control groups with people who have narcolepsy experiencing more vivid, frightening, and bizarre dreams.1
Do Vaccines Cause Narcolepsy
Vaccines do not cause narcolepsy. Only one specific flu vaccine, Pandemrix, used in some northern European countries circa 2009, has ever been implicated in raising the risk for narcolepsy in some children. Pandemrix is no longer in use anywhere in the world. No other vaccines have been connected with the development of narcolepsy.
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Narcolepsy Treatment And Pregnancy
There is limited data about the safety of most drugs used to treat narcolepsy in women who are pregnant, trying to get pregnant, or breastfeeding. A survey found that the majority of experts recommend stopping narcolepsy medications when trying to conceive as well as when pregnant and breastfeeding. Discontinuing medication may require changes to behavioral approaches and other accommodations to safely cope with symptoms without medication.
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Frustrated With An Inefficient System
I wish the testing system was online so we could find out our results right away or get an email within a few days. Instead, we have to wait for the testing instructor to mail in our tests, and then we have to wait for the fire service training bureau to mail us a letter with our scores on it.
It is also annoying that we have to wait so long to test because if we dont pass, we have to schedule a retake, and most testing sites fill up quickly or are far away. We cant even sign up “just in case” because they said it screws with their numbers, which I get, but I feel like they could do things differently.
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Does Narcolepsy Count As A Disability
Narcolepsy isn’t one of the conditions the SSA considers a disability. But if your symptoms interfere with your ability to do your job, you may still qualify for benefits. The Disability Benefits Help website offers a free evaluation to help you determine whether your condition is considered a disability.
Is It Legal To Drive With Narcolepsy
Yes, but it may not be safe. You need to be medically able to drive, which includes being able to stay awake.
The National Highway Traffic Safety Administration , the government agency that oversees highway safety, says that people with narcolepsy should only drive if they’re on a treatment that helps them stay awake.
Driving laws vary from state to state. Most states ask you to voluntarily report any medical conditions that could affect your ability to drive when you apply for a driver’s license. A few states, like California and Pennsylvania, require you to report conditions like narcolepsy that might affect your driving ability.
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National Congenital Anomaly And Rare Disease Registration Service
If you or your child has narcolepsy, your clinical team will pass information about you or your child on to the National Congenital Anomaly and Rare Disease Registration Service .
The NCARDRS helps scientists look for better ways to prevent and treat narcolepsy. You can opt out of the register at any time.
Meditate Or Be Mindful
It is easier to manage narcolepsy when you can manage your own mind. Meditation and mindfulness are tools that have allowed me to quiet my mind, feel more centered and in control of myself, and even get better quality sleep!
Dawn from Going Beyond Coping has made an amazing adapted method if you are intimidated by mindfulness practices!
This paper shows that mind wandering makes us feel bad and concludes that average people mind wander 46.9% of the time! As a person with narcolepsy, I wonder if mine was even worse before discovering mindfulness techniques. The physical and mental health benefits of meditation are real and long lasting! It can increase grey matter in the brain, improve memory, and help you feel more socially connected!
Each one of these chips away at the layers of sleepiness and fog that we walk through every day. You can drop what you are doing and try any of them right now. They may not be formally recognized narcolepsy treatments, but I believe all of them help to relieve the stress that exacerbates our symptoms. Anyone you know that is not happy tends to be tired, so it makes sense that as people with narcolepsy we also have to work toward happiness to reduce our fatigue.
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Can Stress Cause Sleep Paralysis
Have you ever felt the sensation of being awake, but you are unable to move? This might happen right as you are falling asleep or waking up. You might also feel pressure on your chest or like someone is pinning you down. This is known as sleep paralysis, and it is often accompanied by feelings of fear and can even cause hallucinations to appear.
What Is The State Of The Science Involving Narcolepsy
In the past few decades, scientists have made considerable progress in understanding narcolepsy and identifying genes strongly associated with the disorder.
Groups of neurons in several parts of the brain interact to control sleep, and the activity of these neurons is controlled by a large number of genes. The loss of hypocretin-producing neurons in the hypothalamus is the primary cause of type 1 narcolepsy. These neurons are important for stabilizing sleep and wake states. When these neurons are gone, changes between wake, REM sleep, and non-REM sleep can happen spontaneously. This results in the sleep fragmentation and daytime symptoms that people with narcolepsy experience.
However, it is important to note that these gene variations are common in the general population and only a small portion of the people with the HLA-DQB1*06:02 variation will develop narcolepsy. This indicates that other genetic and environmental factors are important in determining if an individual will develop the disorder.
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Can Stress Cause Sleep Apnea
Stress and sleeping disorders often go hand in hand. The burdens that you bear throughout the day can affect your ability to get a good nights sleep, contributing to more serious health issues down the line. Its no secret that stress and worry can lead to nights of restlessness and fear. But can stress cause sleep apnea as well?
What Is The Multiple Sleep Latency Test
After waking from an overnight sleep study, you will stay in the sleep laboratory until late that afternoon. Every two hours after waking in the morning, you will be asked to return to bed for 20 minutes and try to fall asleep. There will usually be 4-5 of these nap opportunities through the day. During each of the sessions, the time taken to fall asleep and whether any REM sleep occurs are recorded. . Falling asleep quickly and experiencing REM sleep during the multiple sleep latency test are features of narcolepsy.
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Can Narcolepsy Be Prevented
There is not much that can be done to prevent narcolepsy. Narcolepsy is caused by a loss of a neurotransmitter in the brain called hypocretin. Hypocretin is important for regulating the sleep/wake cycle. Other causes include an autoimmune disease that could be attacking the cells that produce hypocretin, family history, brain injury or tumor, infections or exposure to toxins.
Common Narcolepsy Symptoms Include:
Cataplexy . Often, narcolepsy may cause you to have sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying.
Hallucinations. Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.
Sleep paralysis. You may be unable to move or talk at the beginning or end of sleep.
Microsleep is a very brief sleep episode during which you continue to function and then awaken with no memory of the activities.
Nighttime wakefulness. If you suffer from narcolepsy, you may have periods of wakefulness at night with hot flashes, elevated heart rate, or intense alertness.
Rapid entry to REM sleep. Narcoleptics have unique sleep cycles. Whereas most people take about 90 minutes to enter the REM or dream phase of sleep, a narcoleptic may do so right after falling asleep. Therefore, youll experience the characteristics of REM sleep at the beginning of sleep, even if that sleep is during the day.
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When To See Your Doctor
Narcolepsy is a chronic condition. It won’t ever completely go away, but once you get on the right treatment, “you should be able to function,” Javaheri says. “If your quality of life is significantly affected, that’s an indication to see your doctor.”
Symptoms like excessive sleepiness or trouble staying awake at school or work in someone who hasn’t been diagnosed with narcolepsy are reasons to see a doctor for an evaluation, she says. Narcolepsy symptoms can overlap with mood disorders like depression and anxiety, and with sleep disorders such as obstructive sleep apnea. As a result, it can sometimes take years to get the right diagnosis.
Best Sleep Apnea Treatments
A diagnosis of sleep apnea may be a scary thing at first, but rest assured that there are several effective treatment solutions available. When you know your diagnosis, you will be able to sleep better at night literally! Several different treatment options have been designed to provide you comfort while helping you get your sleep schedule back on track.
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Stress And Sleep Paralysis
A recent study connected sleep paralysis and stress in patients with PTSD. Similarly, those who have been diagnosed with social anxiety, generalized stress, and depression were also shown to have higher occurrences of sleep paralysis. But this still begs the question, what comes first? The sleep issues or the stress? Which causes which?
It is a good idea to visit your doctor if you are experiencing sleep paralysis very often. Stress puts a huge toll on the body, often causing disruptions in your natural sleep patterns. The best way to prevent further sleep paralysis is to speak with your sleep doctor about improving your sleep hygiene.
Hypocretin And Hla Testing
A lumbar puncture removes some cerebrospinal fluid from the lower spine that can be tested for its levels of hypocretin. Also called orexin, hypocretin is a chemical that helps control sleep and wakefulness. Low levels are indicative of narcolepsy type 1, which involves the loss of neurons in the brain that produce hypocretin.
Along with low hypocretin levels, almost everyone with NT1 carries a variation in a gene called HLA-DQB1*06:02. Human leukocyte antigen testing can look for this variation, but, because it exists in many people without narcolepsy, it alone is not capable of providing a diagnosis.
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Behavioral Approaches To Treatment
Behavioral approaches are non-medical forms of therapy, and there are multiple ways that they can be incorporated into the daily habits of people with narcolepsy.
- Planning short naps: Because brief naps are refreshing for people with narcolepsy, budgeting time for naps during the day can reduce EDS. Accommodations at school or work may be necessary to make time for naps.
- Having healthy sleep hygiene: To combat poor sleep at night, people with narcolepsy can benefit from good sleep habits. Good sleep hygiene includes a consistent sleep schedule , a sleep environment with minimal distractions and disruptions, and limited use of electronic devices before bed.
- Avoiding alcohol and other sedatives: Any substance that contributes to sleepiness may worsen daytime narcolepsy symptoms.
- Driving with caution: People with narcolepsy should talk with the doctor about safe driving. Napping before driving and avoiding long or monotonous drives are examples of measures to improve safety.
- Eating a balanced diet: People with narcolepsy have a higher risk of obesity, which makes eating well an important part of their overall health.
- Exercising: Being active can help prevent obesity and may contribute to improved sleep at night.
- Seeking support: Support groups and mental health professionals can promote emotional health and counteract the risks of social withdrawal, depression, and anxiety in people with narcolepsy.
Does Narcolepsy Get Worse As You Get Older
Narcolepsy is a chronic disorder that causes a disturbing pattern of sleep at night leading to severe sleepiness or sleep attacks in the day. It develops usually at the age of 15-30 years. It can causes uncontrollable sleep at any time in the day that keeps the patient awake throughout the night. Its causes are not known clearly. Its symptoms include restless sleep, daytime sleepiness, loss of muscle tone, hallucinations, and sleep paralysis. It can be detected by polysomnography and EKG test. It can be treated with medicines and lifestyle modifications. There is no definite cure for this disease. If it is left untreated, its symptoms become worse.
Waiting For My Results Is Stressful
When I was done with the test, I was so relieved. I had studied hard for that test and was glad to be done with it. The downside is that the fire service training bureau isnt up to date with the testing system, and I have to wait a week or 2 before I find out my results.
That would be fine if stress didnt mess with my symptoms so much. I have found myself waking up before 7 AM every day this week, and it is starting to really show. Today I was ready for a nap by 9 AM, and normally I am good until at least 10 AM.
Polysomnography And The Multiple Sleep Latency Test
If your doctor suspects that you may have narcolepsy or another sleep disorder, its common for them to recommend two specialized sleep studies:
- Polysomnography tracks your breathing, eye movement, muscle movement, and brain activity, and is usually conducted overnight in a sleep clinic. PSG documents your sleep stages and awakenings, and it can also reveal the presence of other disorders such as sleep apnea.
- The Multiple Sleep Latency Test is normally conducted in the morning immediately following the PSG. During this test, you remain connected to the sensors used in the PSG. At five separate intervals, you are instructed to try to fall asleep, and the MSLT measures how quickly you fall asleep and how quickly you enter rapid eye movement sleep.
Both PSG and MSLT are complex tests performed in a specialized sleep clinic. At-home testing is not an option for narcolepsy because it lacks the necessary monitoring of brain activity.
The results of the PSG and MSLT can be critical in diagnosing narcolepsy. People with both NT1 and NT2 tend to fall asleep in less than eight minutes on average, and they usually enter REM sleep much earlier than people without narcolepsy.
Your doctor or a technician at the sleep clinic can provide specific instructions and let you know what to expect before you go in for these sleep studies.
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