Question 1

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

Accepted Answer

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.

Question 2

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

Accepted Answer

Possibly: There is a genetic connection with narcolepsy, meaning it can run in families. However, having the genetic risk alone is not sufficient to cause the condition. Some other unidentified event appears needed to trigger the development of narcolepsy. Has your sister seen a sleep specialist yet? That would be necessary to make the diagnosis.

Question 3

can i get narcolepsy or you're born with it?

Accepted Answer

Not born with it: Narcolepsy is a disorder of hypersomnolence, usually presenting in late-teenage to late-20's.  Many patients with narcolepsy may have a "hypocretin" deficiency.  This is purely academic, however, and no one checks hypocretin (requires a spinal tap) regularly.  If you have narcolepsy, the test to diagnose it would be a psg with following day mslt.  See a sleep specialist.

Question 4

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

Accepted Answer

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

Question 5

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.

Accepted Answer

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 an mslt (napping test).

Question 6

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?

Accepted Answer

Sudden attacks: Sudden sleep attacks  are not normal.  Always difficult to come to a conclusion with seem or maybe. I would see a physician.

Question 7

suffer from narcolepsy, i think.  should i get a sleep study?

Accepted Answer

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.

Question 8

when i don't get enough sleep i have symptoms. could it be narcolepsy?

Accepted Answer

Insuff sleep: Probably not.  Insufficient sleep is the real problem.  Naroclepsy is a problem with the brain and the sleep/wake turn on and off.  This is not a problem that "gets better or changes day to day."  insufficient sleep can make you feel terrible and last longer than 1-2 days after a bad night.  The only way to solve is making more time for sleep.

Question 9

started nuvigil for narcolepsy. experiencing some diarrhea. will this go away as i get used to the medication?

Accepted Answer

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.

Question 10

i need to get an "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?

Accepted Answer

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

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Doctor answers about:

Can narcolepsy get worse

A member asked:

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

A member asked:

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

A member asked:

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

A member asked:

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

A member asked:

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.

A member asked:

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?

A member asked:

Suffer from narcolepsy, i think. should i get a sleep study?

A member asked:

When i don't get enough sleep i have symptoms. could it be narcolepsy?

A member asked:

Started nuvigil for narcolepsy. experiencing some diarrhea. will this go away as i get used to the medication?

A member asked:

I need to get an "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?

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