Could I Have Narcolepsy?
If you have come to this page, you’re probably worried that you or someone you care about may have narcolepsy. Perhaps you’ve read descriptions of narcolepsy on the Internet that sounded like symptoms you are experiencing. Maybe someone else in your family has narcolepsy and you’re worried about your own chances of developing it. Or, perhaps you’ve been told by your doctor that you might have narcolepsy because you have experienced one or more of the symptoms.
Whatever your situation, we’re glad that you have come to the Wake Up Narcolepsy, Inc. website for assistance. We are here to help you — with information about narcolepsy and tips for navigating the stages from initial concerns to diagnosis and treatment. Here is some information to get you started:
I’m tired often, but is it narcolepsy?
This is an important conversation to have with your doctor. Tiredness, fatigue and sleepiness are associated with many disorders and health risks. Evaluating your sleepiness is an important first step to better understanding what’s going on. The EPWORTH SLEEPINESS SCALE (PDF) and the AASM Sleep Evaluation are good places to start. You can bring results to your doctor.
Why hasn’t my doctor mentioned narcolepsy?
Many doctors are unfamiliar with narcolepsy. Symptoms are often confused with epilepsy, depression and other psychological disorders. Visiting this site is a positive step towards figuring out what’s wrong and seeking help.
Where do I go if I think I have narcolepsy?
A sleep center is a good place to start. Visit SleepCenters.org to find one near you. You may need a referral from your primary care doctor.
What kind of doctor should I visit if I think I have narcolepsy?
Narcolepsy is a neurological sleep disorder. Different types of doctors treat narcolepsy, including neurologists, sleep doctors, pulmonologists, psychiatrists and primary care doctors.
Many “sleep doctors” at sleep centers are primarily pulmonologists specializing in sleep-related respiratory/breathing disorders like sleep apnea. A sleep doctor who is primarily a pulmonologist may be sufficient for initial consultation and diagnosis. A pulmonologist may or may not be familiar with current narcolepsy treatments. Once receiving diagnosis, one may inquire about the doctor’s familiarity and experience with treating narcolepsy.
You can always seek a second opinion about your diagnosis or treatment. You may look for a doctor with specific experience treating narcolepsy.
What if I can’t find a doctor specializing in narcolepsy?
Unfortunately, there aren’t enough narcolepsy specialist in America. If you think you may have narcolepsy, bring it up to your primary care doctor or sleep specialist.
Conduct independent research (from reputable sources) and start the conversation. Do not wait for your doctor to think of narcolepsy. You may wait years!
How do I find out if my doctor’s familiar with narcolepsy?
Ask your doctor how many patients he/she is successfully treating. Has he/she ever diagnosed or treated narcolepsy? Is he/she currently treating others with narcolepsy? Inquire whether he/she stays up-to-date on narcolepsy treatments.
Treatment options have increased in the past 10 years so it’s important that your doctor be well-informed.
Are there any treatments available to help me in the meantime?
If your symptoms are making you uncomfortable or creating safety concerns, be sure to discuss these concerns with your doctor. Some symptoms may be successfully managed before a confirmed diagnosis.
If you’re feeling stressed or overwhelmed by your symptoms or the uncertainty of the diagnosis, consider talking with a counselor about it.
My knees give out with emotion, but I’ve never collapsed. Is this cataplexy?
Cataplexy is a loss of muscle tone with emotions such as humor, happiness, annoyance and anger. The weakness ranges and may be as small as a brief buckling of the knee, jaw sagging, neck dropping, or eyes fluttering. Small episodes may go unnoticed by those around you.
Cataplexy can also lead to full-body paralysis, where one is unable to move or speak for a few seconds to a few minutes. Cataplexy includes small and big episodes. Be sure to tell your doctor about any episodes of muscle weakness.
I’ve never fallen asleep standing up, could I still have narcolepsy?
Narcolepsy is often mischaracterized in comedic portrayals as causing individuals to fall asleep “without warning” while standing or speaking. This is not a typical experience of people with narcolepsy.
Narcolepsy causes episodes of excessive daytime sleepiness making an individual feel extremely tired multiple times a day, as if having stayed awake for 48 to 72 hours straight. This extreme sleepiness may lead to sleep, but generally with the warning of feeling very tired. Circumstances that would make anyone sleepy (dark rooms, warm rooms, jet-lag, big heavy meals, monotonous activities) make a person with narcolepsy tired too, just much more tired than average.
I have some symptoms, but not all – could this still be narcolepsy?
Not everyone with narcolepsy experiences all of the symptoms. In addition, people experience the symptoms to different degrees and frequencies. It is important to speak with your doctor about all possible symptoms.
Excessive daytime sleepiness (EDS) is a symptom experienced by all people with narcolepsy.
Hypnagogic and hypnopompic hallucinations and sleep paralysis are not unique to narcolepsy. These symptoms may be experienced by people without narcolepsy, generally during periods of high stress or sleep deprivation. People with narcolepsy experience these symptoms with greater frequency over longer periods of time.