NarcolepsyNetwork

Narcolepsy Medications | Lifestyle Adjustments | Alternative Therapies

The ideas presented below are provided for educational purposes only and do not constitute medical diagnosis, treatment or advice. Anyone using the information provided does so at their own risk. It is advised that anyone wishing to put any of the following ideas into practice check with their treating physician first. Narcolepsy Network, Inc. does not endorse or vouch for the completeness, reliability or accuracy of any person or entity referred to or linked to on its website.

A healthy way of dealing with any chronic medical condition is to learn as much as you can about it and become involved in one’s own treatment. Generally speaking, the more a person becomes involved in his/her own treatment the more control they feel over the disorder and their lives.

Every case of narcolepsy is different, as are the lives and needs of every person. Any good treatment plan is built upon a person’s strengths while keeping their needs and goals in mind. Good two-way communication between a person and their doctor is essential to achieving the optimal balance between possible treatment, effect and these needs and goals.

It is important to maintain objectivity when trying new ideas to deal with narcolepsy or its symptoms. One tool that can be quite helpful in evaluating the effectiveness of a new approach is a detailed diary or journal. Record everything that has to with your disorder, its symptoms and treatment. One should start the diary several weeks to a month before starting treatment to become accustomed to it, work out the fine points and get a baseline for later comparisons. An excellent computer based selection of health trackers (including sleep and exercise trackers, food diary and personal health records) can be found at the Med Help website at: http://www.medhelp.org/land/health-trackers

There are a number of adjustments and adaptations people with narcolepsy can make in their lives that can positively impact symptoms and quality of life. They are discussed below.

Practice Good Sleep Hygiene

The most important and effective lifestyle change one can adopt is the practice of good sleep hygiene. The human body functions best on a regular daily schedule. In narcolepsy, this natural daily cycle is disrupted by the absence of one of the regulating hormones, hypocretin (a/k/a orexin). By faithfully following the practice of sleep hygiene a person imposes and strengthens a regular sleep/wake cycle that can benefit the whole person.

Tips for Wakefulness

Former Narcolepsy Network Board of Trustees Member and Sleep Activist Ann Austin published a document titled “Tips for Wakefulness” on Facebook.  It became the basis of a presentation she made in a breakout session at the 2011 Annual Confrence in Las Vegas.  It is a fine example of the lifestyle adjustment she made to live better with narcolepsy.  Other people have found these tips to be helpful or may addopt other strategies that fit better into their lives.

Dietary Modifications

It is probably not so much that a good diet can improve the symptoms of narcolepsy as a poor diet can make the symptoms more pronounced and/or frequent. The most often recommended type of diet for a person with narcolepsy is one that is high in protein and complex carbohydrates and low in simple carbohydrates. Simple sugars and starches cause a sudden rise in energy followed by an equally sudden profound loss of energy and alertness. Proteins and complex carbohydrates bring on slower, more controlled rise of energy that is longer-lasting and slow to dissipate.

To further reduce these feelings of decreased energy, it is also advisable to eat several smaller meals rather than the traditional three large meals per day. The exact number, size and timing of meals to minimize foods’ affect on narcolepsy will differ from one person to another and is best arrived at by trial and documentation. No abrupt or broad changes in diet should be made without consulting with your treating physician.

Limit Consumption of Stimulating Foods, Beverages, Alcohol and Tobacco

Stimulant foods and beverages can have effects similar to, but often more intense than, those of simple sugars. This is because these products usually contain sugar as a main ingredient plus caffeine and/or other quick-acting stimulants. Tobacco and other products that contain nicotine also have a stimulating effect. Many people with excessive sleepiness including narcolepsy have a history of using coffee, cola, other caffeinated products, tobacco and products that contain nicotine consciously or unconsciously to help deal with their sleepiness. It is usually best to avoid the use of these substances for several hours before sleep and naps.

Alcohol is a depressant that can relax the body and help a person fall asleep. It is a false sleep aid. Even though alcohol can help a person fall asleep it also interferes with proper sleep and prevents restful sleep. It is usually a good idea to avoid drinking alcoholic beverages for several hours before sleep and naps.

Exercise

Regular exercise helps a person develop strength and endurance and improves metabolism. All of these help to reduce and combat sleepiness and helps a person to get better quality sleep. Check with your doctor before beginning an exercise program to be sure that you are healthy enough.

Let Natural and/or Simulated Sunlight Work for You

Exposure to bright sunlight stimulates the brain to produce serotonin and norepinephrine. These are the brain chemicals that give us a positive feeling and promote wakefulness. While our need for light is best satisfied by natural sunlight it is not always available at the times and in the amounts we need. Modern science has devised special lights that simulate sunlight. These can be used to treat a variety of sleep and other disorders. Used improperly, these lights may cause hazardous effects. They should be used only under the supervision of a physician.

Schedule Naps, Work and Activities

In narcolepsy one of the major problems is the loss of control of the natural daily rhythm. People with narcolepsy need regularity in their lives as a substitute for the loss of this natural circadian rhythm. Imposing and maintaining a regular daily schedule of wake and sleep, medications, naps, work, exercise, meals, etc. can make a big difference. It is usually best to schedule daily tasks like work, shopping, exercise, cleaning, yard work, etc. for the times of day that one feels the most alert and capable.

Irregularly occurring events like doctor visits, outings with friends and family, holiday festivities, etc. need extra planning. It is useful to schedule backwards from the planned event to achieve and sustain the desired level of alertness during a scheduled event or activity.

Keep a To-Do List

List-making also helps people organize their lives. A list serves as a reminder, an organizer of tasks and planning aid.

Seek Support

Support Systems help us to understand that there are others with some of the same issues as we have. They also give one the opportunity to share issues, coping mechanisms, stories, information and to feel accepted. Face-to-face support group meetings are best because they allow both verbal and non verbal communications but for those who do not have access to a local support group there are many online support options available, including Narcolepsy Network’s Online Community.

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