People with narcolepsy fall asleep without warning, anywhere, anytime. Falling asleep can occur while stationary or in unexpected situations such as walking, eating, or talking. The narcoleptic falls asleep quickly and is tired before falling asleep. Falling asleep episodes last 1-30 minutes and occur several times during the day, usually 1 -8 times. These naps are refreshing.
Self-care for narcolepsy
In the treatment of narcolepsy, it is important to maintain a regular lifestyle and implement a regular sleep-wake rhythm. A few pre-planned daytime naps of 10 to 20 minutes are desirable in reducing daytime fatigue. The narcoleptic should avoid heavy and high-carbohydrate diets as well as excessive caffeine intake and overweight. Smoking, alcohol, and intoxicants make symptoms worse, so it would be a good idea to use them with caution as well. Exercise helps to get a better night’s sleep and also reduces daytime fatigue. It is good to remember that many medications cause fatigue, and also exacerbate the symptoms of narcolepsy. People with narcolepsy should tell their relatives, teachers, employers and co-workers about their illness, for example, so that the symptom is understood and possibly taken into account during the working day.
It is also a good idea for a person with narcolepsy to avoid situations that trigger symptoms, such as being long still or strong emotional states. Narcolepsy may be helped by supportive psychotherapy and peer support. Drug-free treatments can be of great benefit to a person with narcolepsy, but most still need drug treatment for the rest of their lives.
Drug treatment of narcolepsy
The treatment of narcolepsy has changed very much in the last century. Before, caffeine, among other things, was used to relieve symptoms. The goal of medication is to keep the patient alert and alert during the day and to minimize unwanted side effects. Amphetamines and similar stimulants have generally been used for narcolepsy and tricyclic antidepressants for cataplexy. Recently, new drugs have become available for the drug treatment of narcolepsy and there is good evidence of their efficacy and safety, so drug treatment recommendations have been renewed due to new products. Today, modafinil is the primary drug for fatigue and somnolence and sodium oxybate for cataplexy. Methylphenidate, tricyclics (clomipramine) or other antidepressants (serotonin reuptake inhibitors, venlafaxine, reboxetine) are used as secondary medicines.
If the above drugs are not effective or the problem is severe side effects, it is possible to try previous drugs used for narcolepsy, such as ephedrine, selegiline, or d-amphetamine. Sleeping pills can be used for night sleep interruption, but the use of the drug affects the level of alertness the next day. Sodium oxybate improves nighttime sleep, so it can be a good treatment. Although there is no cure for narcolepsy, many people with the disease get a lot of help with their symptoms and quality of life. The treatment of each person with narcolepsy must be individually adjusted.
The recommended dose of modafinil is 100 to 400 mg daily. The maximum daily dose is 600 mg, which should not be exceeded. Part of the dose is taken in the morning and the rest in the early afternoon. The studies showed that the medicine was effective and that 80% of the patients had a reduction in their symptoms. In contrast, according to a US study, 71% of those taking modafinil had a reduction in sleep attacks. This medicine has no effect on cataplexy. Although the drug relieves fatigue, patients eating 400 mg are still, on average, abnormally tired compared to normal. The most common side effects are headache and nausea, but they disappear in the early weeks of starting treatment. Modafinil may also reduce the effectiveness of birth control pills. Dependence is considered low.
Sodium oxybate reduces nocturnal awakening and enhances the phase of REM sleep, which has reduced cataplexy attacks by a maximum of more than 80%, and the drug has had a significant effect on reducing daytime fatigue. The medicine is a liquid that is swallowed and half of the dose is taken before going to bed and the rest after 2.5 -4 hours, so that the medicine works all night. The starting dose is 4.5 g and the maximum dose is 9 g per night. Sodium oxybate reduces fatigue in the same way as modafinil, but when used at the same time, the medicines are much more effective. Sodium oxybate also increases sleep depth and reduces nocturnal awakenings.
The most common side effects are sleep disturbances, dizziness, nausea, and headache. Sometimes parasomnias also increase. The side effects are usually mild and go away with the medicine or when the dose is reduced. Confusion, depression, and other neuropsychiatric symptoms have also been reported. For example, alcohol or sleeping pills should not be used at the same time as sodium oxybate suppresses respiration and central nervous system function. Driving a car or tasks that require alertness should be avoided for at least six hours after taking the medicine. Pregnant women should not use the product. There is a risk of addiction and abuse, but after years of use, no addiction has been observed with narcoleptics.
Although there are several treatments for narcolepsy, we still need new therapeutic advice and several medications that work. New treatments for narcolepsy are being developed, such as hypocretin and its analogues, immunotherapy, thyrotropin with analogues, and histamine 3 receptor antagonists.
The effect of narcolepsy on quality of life
Narcolepsy is a multifaceted and chronic neurological sleep-disorder that affects a person’s quality of life. However, fatigue and falling asleep persist as symptoms in narcolepsy patients stabilize. Symptoms of REM dysregulation, such as cataplexy, sleep paralysis, and hallucinations associated with falling asleep or waking up, in turn, resolve over the years. Narcoleptics usually wake up at night, and thus sleep is intermittent and affects the alertness of the next day. Many people with narcolepsy become significantly obese, which increases the risk of developing obstructive sleep apnea. This in turn exacerbates fatigue.
Half of those with narcolepsy also suffer from varying degrees of depression. The severity of patients ’symptoms varies greatly between different people, as does everyone’s ability to adapt to the disease and the limitations it requires. In some cases, the symptoms are mild and the ability to function does not change significantly, but at its most severe, the symptoms significantly impair the ability to function. In this case, for example, the ability to function may only be normal for a few hours after falling asleep.
The ability to work or study with narcolepsy
A person with narcolepsy may be able to cope with even demanding work tasks, but for many, the ability to work has deteriorated to some extent. This must be taken into account when choosing a profession and especially in safety-critical occupations. The narcoleptic must not drive heavy vehicles or professional passenger traffic, nor is flying allowed. Obtaining or keeping a driving license can be difficult if the patient has sudden or uncontrollable symptoms, in which case driving the car would put the patient himself as well as bystanders at risk. The greatest susceptibility to falling asleep just comes out when traveling in a car. Therefore, short naps before driving are recommended, and during a long drive you should take short breaks and even take short sleeps. It is advisable to take the medication in such a way that its effect is stronger when driving. Traveling by bus can also be awkward if you fall asleep in the middle of the trip and sleep past the stop. Studies show that younger people with narcolepsy have more professional problems because of their illness than older narcoleptics. Younger people are also more prone to depression.
Studies show that 20 to 80% of narcoleptics have automatisms, in which case, as the activity continues, the control of the situation weakens or ceases and the person with narcolepsy does things incompletely or incorrectly and does not remember what happened afterwards. Fatigue impairs memory and may alter the content of the memory image, making it difficult for the patient to know or remember the true course of events. In REM sleep, the narcoleptic may see events from the previous waking period or very real hallucinations. However, they often realize that the events are not true, but they can sometimes be very distressing. This is one more stress factor and may further impair intermittent nighttime sleep. Quality of life is also impaired in some patients by amphetamine-induced psychoses.
Narcolepsy also makes it difficult to study, as falling asleep in lectures affects learning. The cognitive performance of a person with narcolepsy has not been studied much, but it has been found that intellectual performance is not impaired. However, the disease affects memory and ability to concentrate. These are the most difficult symptoms for studying. Daytime fatigue affects, for example, the day’s activities, hobbies and friendships. Fatigue due to narcolepsy often contributes to social isolation.
According to an Australian study, men are more sensitive to change than women. Men have more problems with health care and difficulties in sexual relationships than women with narcolepsy. They also have more psychosocial problems. Narcoleptics with drug-free treatment for their disease are less involved in social and leisure events. However, this does not mean that they are more mentally anxious or maladaptive compared to drug-using narcoleptics.
Some patients say that cataplexy is often mild and does not affect life. Some, on the other hand, consider it the most troublesome symptom and hope to get medication for it. However, many easily learn to avoid situations and behaviors where seizures have occurred in the past. For example, they may suddenly become serious, stop laughing, sit down, or take support from something supportive. Cataplexy may also cause social withdrawal. It is important to start medication if cataplexy causes inconvenience and danger, as well as accidents. Anyone who suffers from these symptoms should be prohibited from doing things that could cause a dangerous situation, such as taking a bath alone. It is also good to use the safest routes in traffic.