What happens with narcolepsy
Normally, the brain maintains clear boundaries between wakefulness, normal sleep and the REM sleep phase, during which we dream and our muscles almost completely relax. With narcolepsy, these boundaries are blurred: elements of REM sleep break into wakefulness. Hence the characteristic set of manifestations - sudden relaxation of muscles in reality, vivid dreams when falling asleep, a feeling of immobility when waking up. In the first type of disease, there are almost no cells left in the brain that produce orexin; suggest an autoimmune mechanism for their death.
- Narcolepsy type 1 - with cataplexy and orexin deficiency
- Narcolepsy type 2 - without cataplexy
- Secondary forms in tumors, injuries, multiple sclerosis
- Often begins in adolescence or young adulthood
- The disease is not related to lack of sleep or character
Main symptoms
A mandatory symptom is excessive daytime sleepiness, which is present every day for months. The bouts of sleep are short and refreshing, but after an hour or two the drowsiness returns. Cataplexy manifests itself as sudden weakness: the knees buckle, the head drops, speech becomes slurred, but the person hears and understands everything. The picture is completed by sleep paralysis, when it is impossible to move when falling asleep or waking up, and very vivid, frightening visions on the border of sleep. Night sleep is often shallow and intermittent.
- Attacks of uncontrollable sleepiness during the day
- Cataplexy against a background of laughter, anger, surprise
- Sleep paralysis
- Vivid hallucinations when falling asleep and waking up
- Interrupted night sleep
- Automatic actions without memory of them
How does this affect life?
Because of drowsiness, study and work suffer, and others often perceive a person as lazy or inattentive, which is difficult for teenagers to bear. A separate problem is safety: falling asleep while driving and when working with equipment is life-threatening. Sudden falls with cataplexy can cause injury. Some patients experience low mood and anxiety, so psychological support is also important in treatment. Driving issues are discussed individually with your doctor based on symptom control.
- Decreased academic performance and performance
- Risk of falling asleep while driving
- Injuries due to cataplexy
- Misunderstanding from others
- Anxiety and low mood
- Weight gain in the first type of disease
Diagnostics
First, the doctor excludes more common causes of drowsiness: chronic lack of sleep, shift work, sleep apnea, medication, depression, anemia, hypothyroidism. To do this, they keep a sleep diary and undergo basic tests. The key study is overnight polysomnography followed by a multiple sleep latency test: during the day, the patient is given several attempts to fall asleep and assessed how quickly sleep occurs and whether REM sleep appears. An EEG is needed to rule out epilepsy, and an MRI of the brain is needed if a secondary form is suspected.
- Sleep diary and sleepiness scale
- Overnight polysomnography
- Multiple Sleep Latency Test
- EEG to rule out epilepsy
- TSH, complete blood count, ferritin
- MRI of the brain with an atypical picture
Treatment and lifestyle
It is not yet possible to completely cure narcolepsy, but its symptoms are well controlled. The basis is a combination of regimen and medications, which are selected by a neurologist or somnologist. Short planned naps of 15–20 minutes at a certain time of the day are very effective: they significantly reduce drowsiness. For wakefulness, special drugs are used; some drugs help with cataplexy and night awakenings. A consistent bedtime routine, avoiding alcohol, limiting caffeine in the afternoon, and talking to your employer or school about possible concessions are important.
- Scheduled short naps
- Stable sleep and wake-up routine
- Drugs that increase wakefulness, as prescribed by a doctor
- Products to control cataplexy
- Avoiding alcohol and limiting caffeine in the evening
- Be careful with driving and dangerous machinery
- Psychological support and information for loved ones