Manage Cataplexy & Narcolepsy With Apps To Improve Your Quality Of Life

Cataplexy

Narcolepsy is a neurological disorder of chronic nature that affects the ability of the brain to control sleep-wake cycles. (R) The occurrence of interrupted sleep by frequently waking up during the night affects many individuals. Even though you might feel relaxed after waking, you would be feeling sleepy almost all day. Sleepiness is a result of your sleep with multiple interruptions and disturbs your activities during the daytime. Narcolepsy has two major types. The first one is type 1 narcolepsy or narcolepsy with cataplexy. The other one is type 2 narcolepsy or narcolepsy without cataplexy. Cataplexy is one of the symptoms to diagnose narcolepsy and we will look into in detail in the upcoming texts.

Sleep

Sleep consumes a significant part of your daily routine – roughly about one-third of your day is spent for sleep. Quality sleep is vital for your brain and body to do some housekeeping.  Even though we think it is a resting time, the brain and body cells will continue to stay active while you sleep. Especially the cells of your brain called neurons, stay active to communicate with them and form your memory. They process your learnings into new memories during sleep.

Sleep affects almost all types of tissues, systems, and processes of your body – not only organs like the brain, heart, lungs, and kidneys but also affect your immune function and mood. Lack of quality sleep for a long time increases the risk of multiple diseases. For example, poor sleep might contribute to the increased occurrence of diabetes, obesity, high blood pressure, cardiovascular diseases, and depression.

When it comes to sleep and its steps, they are complex and dynamic processes and out of the scope of this article. Still, since you might encounter the words REM and non-REM when we discuss sleep and sleep disorders, let me just brief what they are.

Rapid eye movement (REM) sleep and non-rapid eye movement sleep (non-REM) are two basic types of sleep. They have stages as well. But the only thing you should remember is, both REM and non-REM sleep are dependent on brain signals, and you go through both of them in any order or combination throughout your sleep. More towards morning, you will have longer and deeper REM sleep periods.

To give an idea about the symptoms of narcolepsy, let’s just know about REM sleep.

REM Sleep

The name rapid eye movement sleep is because your eyes move rapidly, from side to side behind closed eyelids. During a typical sleep cycle, you will enter into REM sleep about 60 – 90 minutes after falling asleep. Note that most of your dreams happen during REM sleep. Think what would happen if someone in your dreams was chasing you and your muscles are not paralyzed? Funny right. Since your voluntary muscles paralyze temporarily during sleep, you will not be able to act out of your dreams, and it is kind of a safety lock. With age, this REM sleep duration becomes shorter.

REM and narcolepsy

People with narcolepsy enter REM sleep quickly. The occurrence of sleep happens at any time, even though the person is engaged in any act, for example, eating, talking, driving, etc. Some people might encounter a sudden state of muscle weakness which makes a person unable to move. Meanwhile, some others might have hallucinations and dreams. Another set of people might have total paralysis either before falling asleep or just after waking up.

When left without diagnosis or treatment, narcolepsy can interfere with your health by affecting psychological, social, and cognitive wellbeing resulting in problems in your family, school, work, and society.

Their rapid entry into REM sleep within 15 minutes, and the muscle paralysis or dreams happening outside the REM, would give you an idea about why those symptoms occur. Read further to know more about symptoms of narcolepsy.

Symptoms of Narcolepsy

Even though narcolepsy is a problem to exist throughout your life, its course usually does not change with your age. The symptoms might improve; still, they will not completely go away. The most typical five symptoms of narcolepsy are explained below. All the affected individuals will have daytime sleepiness, but about 10 – 25 percent of them would experience all the symptoms during their illness.

Daytime sleepiness

All people suffering from narcolepsy will have daytime sleepiness. It is obvious and characterized by insistent sleepiness, despite the amount of sleep you had last night. Sleepiness varies between individuals and usually occurs instantaneously. It does not matter whether you are working or relaxing. For example, you might doze off even while you are driving. But in between episodes of ‘dozing off,’ you would be perfectly attentive to the task you are carrying out.

Cataplexy

Cataplexy is a condition where someone suddenly loses muscle tone while they are awake. The voluntary muscles lose control and become weak. Strong emotions precipitate cataplexy. For instance, the sudden and intense occurrence of laughter, excitement, stress, fear, or anger may cause this. The frequency is not limited but ranges from few to many.

Milder attacks might cause a brief involvement of a small number of muscles. Meanwhile, severe episodes might result in the collapse of the body, during which the patient does not move or react. Due to this nature, in many instances, cataplexy is misdiagnosed as a seizure. In comparison to seizures, a person who experiences cataplexy will be fully conscious, which differentiates cataplexy and seizure disorders. But, the loss of muscle tone is similar to what happens to muscles during normal REM sleep.

Sleep paralysis

You might have experienced that you were unable to talk when you fall asleep or waking up. This inability lasts very briefly and for a few seconds or minutes. On the other hand, with narcolepsy, you might experience episodes similar to cataplexy, except it occurs when you fall asleep or waking up. You can be as normal as usual after the attacks.

Hallucinations

Visual hallucinations are common to occur, with very vivid dreams or frightening scenes. These hallucinations might accompany sleep paralysis. Even though the hallucinations are primarily visual, other senses may also involve.

Fragmented sleep and insomnia

As described earlier, when you have narcolepsy, you will be excessively sleepy during the daytime but will have a night of disturbed sleep. Insomnia, vivid dreams, sleep apnea, are few examples that disturb sleep. Any of these disturbances occur for 10-20 minutes but multiple episodes during a night’s sleep. Eventually, the sleepless night would contribute to daytime sleepiness.

Causes for narcolepsy

Narcolepsy may have several causes, but they are not understood completely. A possibility is that the combination of the following factors is considered to produce the result in reduced levels of hormone hypocretin, which causes narcolepsy.

Autoimmune disorders

Autoimmune disorders are diseases that make your immune cells fight against your healthy cells. In individuals with narcolepsy, it is suspected that an autoimmune disease targets their cells that are secreting hypocretin. Consequently, narcolepsy sets in due to less hypocretin hormone.

Family history

Even though there were no strong links to the family history, around 10% of the diagnosed individuals have a relative with the same symptoms.

Brain injuries

Brain injuries are an infrequent cause. Still, a traumatic injury involving the sleep controlling center of the brain will affect sleep.

Diagnosing narcolepsy

Diagnosing and treating people with narcolepsy is essential. Since symptoms may cause life-threatening situations for the patient and others, it is compulsory to treat the symptoms appropriately. At times, cataplexy can even make a simple action into a hazard. For example, a person with narcolepsy climbing stairs can have an episode of cataplexy and fall from heights. Similarly, drivers with cataplexy may cause life-threatening automobile accidents that are harmful to them and others.

As usual, detailed medical history and a clinical examination are fundamental and crucial for any diagnosis. Excluding other related causes for the symptoms also should be done through performing neurological examinations. Following are two tests performed to assist the diagnosis of narcolepsy.

  • Polysomnogram (PSG or sleep study) is an overnight recording and study of the brain and muscle activity, eye movements, and breathing.  It can help to identify how quickly REM sleep occurs in the sleep cycle or those symptoms are resulting from another condition such as sleep apnea.
  • Multiple sleep latency tests (MSLT). This test measures the tendency of a person to fall asleep and assesses their sleep mode. It usually considers the time by having a series of nap sessions throughout the day. If you are interested to know more about MSLT, you can read it here.
  • Hormonal studies – Occasionally, assessing the hypocretin level in the cerebrospinal fluid (that surrounds your brain and spinal cord) would give an insight into the reason behind your symptoms of narcolepsy.

Treating narcolepsy

Although narcolepsy does not have a definite cure, medications and lifestyle changes can minimize the symptoms. Not everyone with narcolepsy can consistently maintain an entirely normal state of alertness using currently available medications alone.  Lifestyle changes should accompany drug therapy.

Medications

There are a variety of medications available to treat narcolepsy. They can be central nervous system stimulants or antidepressants. Even though they are reducing the symptoms of narcolepsy, dependency on drugs should be considered while prescribing. Also, they can experience side effects such as irritability and nervousness, irregularities in heartbeats, and sleep disruption. The fine details about the drugs are unnecessary here since this article focuses more on identifying symptoms and tracking them.

Lifestyle changes

Medication alone cannot help with narcolepsy. Lifestyle changes would help to make the drug therapy more effective. An adult need at least 7 to 9 hours of sleep a day. (R) Sleep will keep you refreshed, energetic, and concentrate on daily activities.

Following are a few dos and don’ts to consider.

Do

  • have short naps. Take short, regular naps at times when you feel sleepiest.
  • make a regular sleep schedule a habit – go to sleep and wake up at a fixed time every day, including weekends.
  • relax at least an hour before bed – for example, read a book or have a warm shower. Relaxing activities before bedtime can promote sleepiness.
  • make sure your bedroom is favorable for sleep – adequately dark and quiet – i.e., use thick curtains or blinds, an eye mask or earplugs, a comfortable mattress, pillows, and covers. Also, make sure the room is comfortably cool.
  • exercise daily – exercising for at least 20 minutes a day, at least 4 or 5 hours before bedtime improves sleep quality. Also, it can help to maintain your fitness.
  • engage with a support group – to develop better-coping strategies and have a mentally and emotionally supportive peer group.

Do not

  • drink alcohol, coffee, or tea minimum of 6 hours before bed since they reduce chances of quick sleep.
  • have a big meal late at night since eating close to going to bed can make it harder to sleep.
  • smoke, especially at night.
  • exercise a minimum of 4 hours before bed.
  • use mobile devices or watch television right before going to bed.
  • sleep during the day.

Work and school

The Americans with Disabilities Act in the US mandates employers to provide reasonable accommodations for employees with disabilities. People with narcolepsy can discuss their issues with the employer to have convenient accommodation at work. For example, they can ask for few breaks to have naps during their schedule while they engage in their work when they are alert. Children and adolescents can also discuss with the school to arrange necessary and practically possible accommodation.

Monitoring narcolepsy with CareClinic cataplexy

As I mentioned above, diagnosing and treating people with narcolepsy is essential. With narcolepsy, any simple

action would turn out to be a threat to life. Recognizing your symptoms and the correlation between your symptoms and sleep would help you and your healthcare provider to diagnose narcolepsy at its earliest.

CareClinic is a one-stop personal health app, providing numerous valuable features to help you maintain a personal health record. Create a self-care action plan, add medications, supplements, diet, physical activities, and therapies you receive. You can even set your healthcare team that manages your health and pregnancy. Add your physician, registered nurse, therapists, and family members to keep them in the loop of your healthcare.

Remembering things can be difficult. We do not always remember everything happening around us, to us, and inside of us. Practicing regular tracking of your health is essential and valuable for everyone.

Diary Entry

The name says it all. The diary entry feature lets you make entries about your daily life. Use the app’s diary entry feature to track day-to-day activities or events you encounter. You can track your sleep hours, quality, mention your episodes of sleepiness or falling asleep without controls, dreams, or hallucinations as well. The diary entries you make here will be helpful to create a report correlating with entries in other trackers of the app, such as symptom tracker.

Symptom Tracker

The symptom tracker lets you add symptoms you are experiencing. You can start tracking them whenever you experience any of the symptoms mentioned above. Apart from symptoms for narcolepsy, if you have any other medical conditions or medications, you can start tracking your symptoms before seeking medical attention and compare how well the therapy relieves you from symptoms after visiting the doctor’s office. Plus, you can identify the side effects caused by the medications you use when you review your symptoms with your medications and reports. Symptom tracking helps seek medical attention during the most intensive symptoms or side effects.

Pill Tracker & Remindercataplexy

Medications are always important. Do not forget your medicines with the CareClinic app. Set reminders to give you heads-up before you run out of drugs. Have a look at our blog article on pill tracking.

Nutrition

CareClinic offers a nutrition tracker, which helps you maintain your diet log. With this feature, you can ensure the intake of adequate nutrition for your wellbeing. Meanwhile, this nutrition tracker will help identify your cravings and help you manage them. If you have a specific diet to change your food habit, you can follow your diet and reflect on how you can live a healthy life. It does not have anything to do with narcolepsy directly. But, by using this feature, you would be able to identify and follow the dos and don’ts to have an adequate sleep.

Activity

Use this feature to track all activities you do. CareClinic’s activity tracker lets you identify any actions that worsen or relieves your moods and symptoms. In general, you can figure out which activities help improve your symptoms and which don’t. It is more beneficial for patients with narcolepsy. You can identify the time of occurrence of symptoms during various activities, work out on your schedule of work or discuss with your healthcare provider to customize your treatment.

Also, you can look back to see if there are any correlations between your symptoms and any activity you may have participated in.

Therapy

Keep a record of therapies you may be receiving. Maybe you are seeing a specialist or even your family doctor. You can record all your appointments so that you never forget something.

Reportscataplexy

Reports are another great and important feature in the CareClinic app. They can provide a lot of perception into your disease and lifestyle. CareClinic’s reports consider your logs in all features – for example, diary, nutrition, activities, symptoms, etc., and subsequently, generate reports to show the associations between those entries. This connection would be helpful to learn more about yourself and your disease-related changes.

Conclusion

Narcolepsy is a neurological disorder of chronic nature that affects the ability of the brain to control sleep-wake cycles and characterized by the symptoms, excessive daytime sleep, cataplexy, sleep paralysis, hallucinations, and fragmented sleep episodes/insomnia.

This article is just a brief about narcolepsy. You should always seek medical advice if you have any concerns about your sleeplessness symptoms or an altered sleep pattern. Using an all-in-one app like CareClinic can help you find the symptoms early by getting into the habit of tracking to help yourself getting treatment at the earliest.

Download CareClinic now to track and control your narcoleptic symptoms.

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Mariano R Kanagaratnam