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Doctor insights on: Are You Born With Narcolepsy Or Can You Get It Later In Life

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Are you born with narcolepsy or can you get it later in life?

Are you born with narcolepsy or can you get it later in life?

Not born with it: Narcolepsy is a sleep disorder that usually develops over the teenage years. It is likely autoimmune related. There are rare situations when narcolepsy occurs in multiple sclerosis, trauma or brain tumor. Narcolepsy is caused in most patients by a "hypocretin" deficiency in the hypothalamus. ...Read more

Dr. Michelle Zetoony
287 doctors shared insights

Narcolepsy (Definition)

A condition characterized by extreme sleepiness every few hours during the day and frequent, unexpected sleep attacks. This sleep disorder is believed to be caused by a decrease in a protein in the brain. There is no cure for narcolepsy, but its ...Read more


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Can I get narcolepsy or you're born with it?

Acquired : Narcolepsy develops usually around teenager years and is felt to be acquired. We don't know the exact mechanism, but some type on immunological event might trigger it. It is very rare to be born with narcolepsy. ...Read more

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How can someone get diagnosed with narcolepsy?

How can someone get diagnosed with narcolepsy?

Narcolepsy: Excess daytime sleepiness, Cataplexy (sudden loss of muscle tone while awake), sleep paralysis, disrupted sleep. ...Read more

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How common is it for somebody to get narcolepsy?

How common is it for somebody to get narcolepsy?

It depends: The answer depends on what population you are talking about. In the us, narcolepsy is estimated to affect 1 in 2000 people. It is much more common in japan, very rare in israel. ...Read more

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My sister says she has narcolepsy. Are family members more likely to get the same thing?

My sister says she has narcolepsy. Are family members more likely to get the same thing?

Yes: Narcolepsy is a genetic abnormality and can occur in multiple family members although many single isolated cases also occur. Symptoms generally begin in adolescence. There are tests that can be done to see if you have the genetic susceptibility to narcolepsy, but they don't necessarily indicate you have the condition. ...Read more

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Does narcolepsy and cataplexy usually get worse over time? Is rapid change in severity over 12 months normal?

Does narcolepsy and cataplexy usually get worse over time?  Is rapid change in severity over 12 months normal?

It slowly progresses: Both narcolepsy and cataplexy gradually worsen over decades. Rapid change is likely some other factor; consider a repeat overnight sleep study to rule out coexisting sleep apnea, restless legs, poor sleep efficiency, or other causes of unrestful sleep. General tips: daytime naps, regular sleep-wake cycle, good sleep hygiene, routine activity during daytime, aerobic exercise, and sunlight exposure. ...Read more

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Can you have narcolepsy but rarely get sleep attacks? I usually can feel it coming and lie down to sleep, but I meet all the other criteria.

Can you have narcolepsy but rarely get sleep attacks? I usually can feel it coming and lie down to sleep, but I meet all the other criteria.

Yes: Yes. You can still have narcolepsy and not have significantly evident abrupt sleep intrusions, but usually this is when treated. If you feel sleepiness coming on and are able to go lie down, likely excessive daytime sleepiness. Need a sleep study then a mslt (napping test). ...Read more

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I get occasional, sudden sleep attacks when doing normal day-2-day activities. I don't seem to have symptoms that resemble narcolepsy, could this be a disorder or an overall health related issue?

I get occasional, sudden sleep attacks when doing normal day-2-day activities. I don't seem to have symptoms that resemble narcolepsy, could this be a disorder or an overall health related issue?

Sleep attacks: I would investigate by having a physician take a thorough history of symptoms and system review, perform a complete physical examination and order appropriate tests. If no sleep apnea or obvious general health issues are noted, then a referral to a neurologist to look for a type of narcolepsy would be helpful. ...Read more

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Suffer from narcolepsy, I think. Should I get a sleep study?

Yes you should: The test you need is called a multiple sleep latency test which is performed in a sleep lab. It involves being monitored overnight and then taking a series of naps the next day to assess your level of excessive sleepiness. ...Read more

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When I don't get enough sleep I have symptoms. Could it be narcolepsy?

When I don't get enough sleep I have symptoms. Could it be narcolepsy?

Probably not: Inadequate sleep can cause lots of symptoms: fatigue, irritability, headaches, memory and attention problems, increased accidents, etc. The symptoms resolve with adequate sleep. Narcolepsy is a chronic medical condition which is associated with excessive daytime sleepiness, sleep paralysis, vivid dreams, and sudden drop attacks associated with strong emotion. The epworth sleepiness scale can help. ...Read more

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What type of doctors have the legal authority to issue the "wakefulness test" to people with narcolepsy so that they can get a driver's license?

What type of doctors have the legal authority to issue the "wakefulness test" to people with narcolepsy so that they can get a driver's license?

Medical Expertise: What you mean to say is MEDICAL EXPERTISE which is then, recognized by an entity such as the BMV & translated into a legal right for a person to operate a motor vehicle. Typically, you'll find those with a specialization in Sleep Medicine. Doctors who have specialty training in SLEEP MEDICINE typically do this testing. More questions? www.healthtap.com/drsaghafi ...Read more

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Started nuvigil for narcolepsy. Experiencing some diarrhea. Will this go away as I get used to the medication?

Started nuvigil for narcolepsy. Experiencing some diarrhea. Will this go away as I get used to the medication?

Probably: We always blame the last med for any changes. Diarrhea may not be due to Nuvigil. However, I have had a couple of patients on Nuvigil who developed diarrhea after the first dose and it went away in 3 days with one and a week with the other. That is pretty common with meds that change the body response. The body tries to resume its normal activity and frequently does. Side effects go away. ...Read more

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I need to get a "wakefulness" test because I have narcolepsy. The hospital that I go to is taking FOREVER but I need to drive. Where else can I go?

Choices: Some pulmonary specialists also do sleep work, but some neurologists, and psychiatrists may help here as well. Meds are available to control your issues, and treated narcolepsy should allow you to fully function. ...Read more

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Was lobotomy ever done as a treatment for Narcolepsy? I was born in 1995 in PA. Diagnosed when I was 5-7. Concerned about if I ever had it done to me.

Was lobotomy ever done as a treatment for Narcolepsy? I was born in 1995 in PA. Diagnosed when I was 5-7. Concerned about if I ever had it done to me.

Would not worry : Yes, Lobotomies were frequent in the early to mid 19th century for a range of conditions that included narcolepsy — these procedures largely went away around the early 1960s in the United States. As a result, it is not likely that you were exposed to this procedure having been born in 1995 and diagnosed around 2000. ...Read more

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What is the most effective way to get an er's staff accept that narcolepsy with cataplexy is a neurological problem not a psych problem?

What is the most effective way to get an er's staff accept that narcolepsy with cataplexy is a neurological problem not a psych problem?

Why to the ER?: Why would a person go to the er for narcolepsy? And why would it be an issue in the er? Narcolepsy isn't an er kind of issue. Anyway if the er doesn't believe it's neurological then explaining hypocretin levels probably won't help and you won't be able to convince them. ...Read more

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What is the best treatment to get all the right amount of sleep cycles at night for person with narcolepsy? I feel like I am stuck dreaming too.

What is the best treatment to get all the right amount of sleep cycles at night for person with narcolepsy? I feel like I am stuck dreaming too.

Lifestyle changes: Amphetamines and similar medicines can be very helpful short term. Long term there is no substitute for a lot of hard work with a sleep specialist to re-examine all aspects of your daily life...diet, exercise, mental health, work...and try to better allign your natural physiological processes. Starting with an academic based center specializing in sleep issues is a good idea. ...Read more

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Who can administer a sleep test? What are the symptoms of narcolepsy? Is there a cure for chronic sleep paralysis? Where can I get it treated (US/UK)?

Who can administer a sleep test? What are the symptoms of narcolepsy? Is there a cure for chronic sleep paralysis? Where can I get it treated (US/UK)?

MSLT: A polysomnogram (overnight sleep test) followed by an MSLT (multiple sleep latency test) is reasonable to rule out sleep apnea and narcolepsy. There are effective treatments for both conditions including pharmacotherapy for narcolepsy. Although any physician may order these tests it would be wise to see a sleep physician. ...Read more

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I was diagnosed as having narcolepsy almost 2 years ago. I have been to 2 neurologist and they aren't able to get my narcolepsy under control. I am on 2 different kinds of medicine for my condition. I had to quit my job due to this issue. So i h

I was diagnosed as having narcolepsy almost 2 years ago. I have been to 2 neurologist and they aren't able to get my narcolepsy under control. I am on 2 different kinds of medicine for my condition. I had to quit my job due to this issue. So i h

Narcolepsy: Narcolepsy as other diseases might be very straightforward to control or on the other hand might be hard to control.
You did not mention if you also have cataplexy or just narcolepsy, then which symptoms, daytime sleepiness, fragmented nighttime sleep or cataplexy are hard to control. I suggest you see a sleep doctor. ...Read more

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Is narcolepsy real?

Is narcolepsy real?

Absolutely : Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks. Narcolepsy is a nervous system disorder. It is caused by a hypocretin deficiency in the hypothalamus. Symptoms include sleepiness, hallucinations, paralysis when laughing. The treatment of narcolepsy has much improved in the last decade. ...Read more

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Is narcolepsy inherited?

Is narcolepsy inherited?

Yes: Up to 10% of narcolepsy patients have family members with the illness. Twins have an even higher chance of both having the illness. ...Read more

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Is narcolepsy a disability?

Is narcolepsy a disability?

Not usually : Usually we can control daytime sleepiness and cataplexy with meds. Most narcoleptics don't need disability. ...Read more

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What can be done for narcolepsy?

A lot: There are powerful medications available to make to symptoms of narcolepsy tolerable. A sleep specialist can help you. We hope in the near future to have hypocretin modifying medications available. Trials are currently underway. Ultimately, stem cell therapy may be the cure for the disease. ...Read more

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What do you recommend for narcolepsy?

See your doctor: Narcolepsy is a chronic disorder which results in excessive daytime sleepiness, vivid dreams, sleep paralysis, and poor sleep. It occurs in 1 in 2, 000 people. If you think you have narcolepsy, see your doctor. You may need a referral to a sleep center to have tests performed. These tests would distinguish between narcolepsy and other sleep problems. ...Read more

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What are the pros & cons of narcolepsy?

Narcolepsy: I know of no positives for narcolepsy. It can be embarrassing and dangerous. ...Read more

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Can you develop narcolepsy after age 40?

Yes, you can.: Yes, you can. Although narcolepsy most often begins early in life (teens and 20s), it can begin at any age including in young children and in midde-aged or older people. It causes daytime sleepiness. However, with daytime sleepiness beginning in the 40s, other causes including insufficient sleep and sleep apnea must be considered. ...Read more