Narcolepsy is a chronic sleep disorder effecting an estimated 1 in ever 2,000 people – but only 25% of those are diagnosed and receive treatment. Those who suffer from it have overwhelming daytime drowsiness, regardless of the circumstances and can fall asleep when they don’t want to and when it’s unsafe. They may find it difficult to stay awake for extended periods of time. This can have a major impact on people’s routines and negatively impinge on their lives.
Research has determined that narcolepsy is caused when the brain doesn’t produce enough hypocretin chemicals that help keep you alert and prevent you from slipping into REM sleep at the wrong time. The possible development of this condition may be genetic.
Excessive daytime sleepiness – persistent daytime sleepiness regardless of how much sleep you got the night before.
Sudden onset of muscle tone loss (cataplexy) – leads to weakness and loss of control, usually triggered by emotion (laughter, excitement, fear, anger).
Sleep paralysis – the temporary inability to speak or move while falling asleep or waking up.
Alterations in REM sleep patterns – while narcoleptics fall asleep during the day, they also often find it difficult to stay asleep at night.
Hallucinations: extremely vivid and often frightening hallucinations can also be experienced during sleep paralysis. Most often these are visual, but other senses can be affected.
Narcolepsy Diagnosis Criteria
Formal diagnosis criteria for narcolepsy requires a patient to take part in a sleep study, which involves staying overnight in a sleep center where doctors can monitor you to determine what, if any, sleep disorder you may be suffering from You will be required to provide a detailed sleep history and keep and ongoing sleep journal, outlining your sleep habits. One test conducted during a sleep study is polysomnography. This test measures signals to your brain during sleep, via electrodes that are placed on your scalp. Asleep latency test will also be conducted, to measure how long it takes you to fall asleep during normal waking hours. During this test, you are asked to take a nap every two hours under the supervision sleep specialists. People with narcolepsy fall asleep more quickly than normal and enter into REM sleep very early in the sleep cycle.
Some good questions to ask your doctor if you suspect you may fit the narcolepsy diagnosis criteria:
- What’s the most likely cause of my sleepiness?
- Could it be something else?
- Is there a test I can take to find out what’s causing it’?
- Do I need a sleep study? Is my condition temporary or permanent?
- What treatment do you recommend?
- Are there alternatives to traditional treatment?
- I have other health concerns, what do I need to know about managing all this together?
- Is there information I can take home on the narcolepsy diagnosis criteria and review or can you suggest a website?
Epworth Sleepiness Scale
Because narcolepsy is difficult to diagnose and may go unrecognized for years before properly treated, the Epworth Sleepiness Scale – was developed as a way to determine if your daytime sleepiness is just a lack of good nighttime slumber or if you may have narcolepsy and need to see a physician.
The test gives you a series of situations and asks you to rate on a scale of 0-10 the likeliness you would fall asleep. Those who score 11 or higher on the Epworth Sleepiness Scale are urged to seek out a sleep specialist to determine and treat the cause of their sleepiness – whether it’s narcolepsy or something else.
While there is no cure no narcolepsy, medications, and changes in your habits can help to keep the systems under control and let you return to a normal lifestyle. Some medications often prescribed include:
Stimulants: The most common treatment for narcolepsy is drugs that stimulate the central nervous system. These drugs can help keep people awake during the daytime. Two commonly used medications are modafinil and armodafinil.
Serotonin reuptake inhibitors (SSRIs): These medications suppress your body’s REM sleep. They include medications like fluoxetine and venlafaxine.
Sodium oxybate (Xyrem) : Used to treat cataplexy. In high doses, this medication help with daytime sleepiness.
Tricyclic antidepressants: This class of older antidepressants has been found to be effective in treating cataplexy.
Medications taken for other health conditions like high blood pressure and diabetes can interact with narcolepsy medications and should always be disclosed to your doctor. Over the counter medications, especially those for allergies and colds often cause sleepiness and are often recommended staying on the “do not take” list if you have narcolepsy.
New research on the causes of narcolepsy has led to new research on its treatment. Doctors are investigating ways to increase histamine levels in the brain, a neurotransmitter that helps keep us awake. They are also looking into ways of restoring hypocretin levels in the brain. These new treatments are still in the research stages, but scientists are hopeful that new treatments could mean a better quality of life for those with narcolepsy.
It’s important to talk about your diagnosis with the people in your life. Your employer or teachers will likely try to find ways to help accommodate any special needs. The Americans with Disabilities Act ensures that you can not be discriminated against because of your condition and that responsible allowances are made to help you do your work.
Another important thing to remember is to always be safe. If you are a driver and have to be on the road for extended periods, make sure that you talk about it with your doctor and come up with a game plan for staying safe. Whether that means a medication schedule, regular naps or an exercise regime, it’s important to be prepared.
What about Quinine for restless legs? In a release sent to health care providers across the United States, AR Scientific warns that using Quinine for the treatment or prevention of nocturnal leg cramps may lead to thrombocytopenia and hemolytic-uremic syndrome/thrombotic thrombocytopenic purpura (HUS/TTP). Chronic renal impairment associated with the development of TTP has been reported. The release also states that there is no evidence that Quinine is effective in treating or preventing nocturnal leg cramps.