In part 2 of my blog series on Narcolepsy, I will address how this illness is diagnosed and what treatments are available. For more information on the symptoms and consequences of narcolepsy, please see my last posting, Notes on Narcolepsy.
As indicated above, many patients with narcolepsy don’t receive the proper diagnosis for upwards of 10-15 years after the onset of their first symptoms. If you find that any of the symptoms of narcolepsy (e.g. excessive daytime sleepiness, cataplexy, broken nighttime sleep, vivid dreaming or hallucinations around sleep) are making it difficult to drive, attend work or school, perform daily activities and chores, or socialize, talk with your doctor to rule out any other medical problems that may be the culprit. If nothing else is found to contribute to these symptoms (especially excessive sleepiness), ask for a referral to a sleep specialist.
The initial appointment with a sleep specialist usually consists of a very thorough review of your medical and psychiatric history as well as a complete physical examination. The specialist will likely ask you to keep track of your sleep patterns for a few weeks before your initial appointment.
If narcolepsy is suspected, you will typically be asked to have a sleep study with two tests involved: a polysomnogram (PSG) and a multiple sleep latency test (MSLT). A PSG is a completely painless test that requires you to spend the night in a sleep center in a private room. Small electrodes are placed on your skin that record muscle activity, breathing, eye movements, and brain waves. The PSG helps to determine your sleep stages, how fast you fall asleep/wake up, and if there are any other sleep problems interfering (e.g. obstructive sleep apnea). The MSLT is conducted during the day and consists of sequenced, planned naps to be taken every few hours. This test helps to determine sleep stages as well as diagnose how sleepy you are during the daytime.
There is not yet a cure for narcolepsy. However, a proper medication and behavioral management plan can help lessen the frequency and severity of the symptoms.
There are a number of medications available that can help target specific symptoms of narcolepsy (and some target multiple symptoms). Some stimulants (e.g. methylphenidate, amphetamines) or newer wakefulness-promoting medications (modafinil, armodafinil) can help combat daytime sleepiness. Certain antidepressant medications can be used to help with cataplexy, hypnagogic hallucinations and sleep paralysis. Sodium oxybate may help with cataplexy, daytime sleepiness, and broken nighttime sleep.
It is especially important that you talk with your sleep specialist to find the proper fit for your needs/lifestyle as medication management for narcolepsy isn’t a “one size fits all” deal. Over-the-counter medications are typically not recommended for the treatment of narcolepsy.
Medication management for narcolepsy typically does not suffice unless combined with behavioral strategies. Some patients do not wish to use medications (can’t tolerate side effects, desire to get pregnant, etc.) and rely solely on behavioral techniques. Some of these strategies include:
1) Plan out a regular napping schedule. Short naps taken proactively during the day can combat excessive daytime sleepiness. Experiment with the length and timing of naps. Enlisting the help of others is important in the success of this strategy, as you might have to work or take care of children and will need to sneak away for a quick 20 minute nap.
2) Keep a regular sleep-wake schedule, go to bed at around the same time every single day and awaken at the same time. Working rotating shifts or very long days typically can be very challenging for patients with narcolepsy.
3) Note when you tend to be most alert and plan to do certain activities during those times (e.g. driving, cooking).
4) Strategic use of caffeine during the day can help with excessive sleepiness, but talk with your doctor first about this as too much caffeine can negatively impact your nighttime sleep even more.
5) Avoid alcohol as this can increase sleepiness and disrupt nighttime sleep.
6) Work on factors that might impact insomnia such as lying in bed awake (the bed is only for sleep and sex!), worrying, alcohol/tobacco/drug intake, and overall sleep hygiene.
7) Since narcolepsy is often poorly misunderstood by the public, many patients are mistakenly labeled as lazy, depressed or unmotivated. Educate family, friends and coworkers about the disease. Oftentimes, having a sleep specialist or a therapist help with the education process can increase the beneficial impact. Asking to take a nap break at work might be difficult to do, but taking a short nap can make you even more productive overall.
8) Narcolepsy support groups exist, and they can be extremely powerful. Others can empathize with your issues, and they may give you tips on what has worked well for them. For some, talking with a therapist who has a thorough understanding of narcolepsy and its impact on physical and emotional functioning can help alleviate stress. Organizations such as the Narcolepsy Network and Wake up Narcolepsy are additional resources for support.
9) Don’t be afraid to ask for help when you need it. Pushing yourself beyond your limits will only serve to worsen the symptoms.
Please check back soon for the third, and final, installment in this series. I have asked friend, narcolepsy patient, and devoted narcolepsy advocate, Julie Flygare to write a guest post about her experience with narcolepsy.