What is narcolepsy?

Narcolepsy is a term for a disorder of the part of our brain that controls sleep and wakefulness. As a result, sleep or parts of sleep intrude into periods when a person is awake, often at inappropriate times. Typically, individuals with narcolepsy get sleep attacks anytime during the day. They also feel sleepy all the time and suffer from tiredness [like they haven’t slept enough] no matter how much they sleep. If severe, the condition seriously affects a person’s quality of life. Although there is no cure for it, the good news is that it can be effectively managed with proper treatment.

What causes narcolepsy?

Although the exact cause is not known, it is certain that narcolepsy is not caused by psychiatric or psychological problems. Recent studies have found low levels of a brain chemical called hypocretin in people with narcolepsy. Some researchers have suggested that a problem with the gene responsible for making hypocretin, combined with other factors in a person’s life may cause the disorder.

Probable causes include:

• Autoimmune mechanisms
• Deficiency of hypocretin/Orexin
• HLA subtypes HLA-DQBI*0602 linked
• Other factors like infections/toxin stress/ hormonal/ dietary.

Symptoms of narcolepsy

The four cardinal features of narcolepsy are:

1. Excessive daytime sleepiness
2. Cataplexy
3. Sleep paralysis
4. Hypnagogic hallucinations.

These symptoms are now thought to include disrupted or non-refreshing sleep.

In most cases, excessive daytime sleepiness is the most bothersome symptom.

Excessive daytime sleepiness

This is usually the first symptom of narcolepsy that shows up. Narcoleptics report feeling continually sleepy and tired all the time, seemingly without any reason. The drowsiness or grogginess is felt at times when we are usually fully awake and alert or in situation where alertness is required, for instance while driving.

Sleep specialists access excessive daytime sleepiness using various scales such as the Epworth Sleepiness Scale. On the scale, 0= no chance of dozing, 1= slight chance of dozing, 2= moderate chance of dozing and 3= high chance of dozing.

Patients are asked to rate the everyday situations in their lives such as: sitting and reading, watching TV, sitting inactive in a public place [a theater or a meeting], as a passenger in a car for an hour without a break, lying down to rest in the afternoon when circumstances permit, sitting and talking to someone, sitting quietly after lunch without alcohol, in a car, while stuck in traffic. A score of more than 10 on this scale is worrisome.

Cataplexy

It is a condition in which strong emotions, laughter, anger, fear or surprise cause a person to suddenly feel weak. The mild form is characterised by a brief feeling of weakness, while the severe form is characterised by a complete physical collapse, resulting in fall and, sometimes, even injury.

Sleep paralysis

Sleep paralysis too is a brief loss of muscle strength. However, it occurs when a person is either falling asleep or waking up. The person may be somewhat aware of his or her surroundings, but is unable to move or speak—feels powerless and paralysed.

Hypnagogic hallucinations

These are vivid dreams—complete with disturbing images and sounds—that occur when a person is drowsy. These hallucinations may be frightening because the person is partly awake but has no control over the events.

How is narcolepsy diagnosed?

The first step in diagnosing this disorder would be an evaluation by your physician to eliminate other medical illness as the cause. The next step is usually a visit to a physician specialising in sleep disorders.

At a sleep disorders centre, the specialist will thoroughly review your medical history and give you a complete physical examination. If the specialist suspects narcolepsy, s/he will ask you to undergo the following steps:

1. Maintaining a sleep log over a period of two weeks.
2. Review of the antidepressants such as SSRI, TCAs and other medicines you have been taking
3. Polysomnogram [sleep study].
4. Multiple sleep latency test [MSLT] to confirm the diagnosis of narcolepsy.

Cerebrospinal fluid levels of ‘hyprocretin’ are also used to diagnose narcolepsy.

How is narcolepsy treated?

Narcolepsy cannot be cured but its symptoms can usually be controlled or improved. If you are diagnosed with narcolepsy your treatment plan would likely to have a multidisciplinary approach.

1. Medication
2. Behaviour modification
3. Environment management

Medications

Prescription medications effectively help control excessive daytime sleepiness, cataplexy,hallucinations, and sleep disruptions. These include:

1. Stimulants like methylphenidate and amphetamines
2. Wakefulness-promoting agents like modafinil
3. Medications to suppress the cataplexy sleep paralysis and hypagogic hallucinations— tricyclic anti-depressants.

Lifestyle modifications

• Following a regular sleep/wake schedule.
• Taking regular short naps.
• Following your healthcare professional’s instructions regarding medications.

Managing your environment

• Keep family, friends, co-workers, employers and other individuals with whom you have frequent contact informed about your condiion
• Make sure you plan ahead and stay prepared for the potential impact of your condition on family and work
• Seek help from the community and support groups like narcolepsy support groups

With the help of some modifications, medicines and positive attitude, narcoleptics can learn to effectively manage their situation.

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Unfortunately, this is not enough to lull you into the blissful oblivion for the required 7-8 hours. Women often find sleeping soundly more difficult than men. Let’s explore the reasons for the same.

Sleep snatchers

Normal sleep varies with age and sex. To begin with, men and women have different sleep patterns. What is normal for a man is definitely not so for a woman. Men do not have much variation in their hormonal levels in a month. Women, on the other hand, undergo several dramatic changes that affect their sleep pattern. This is also the reason that sleep studies use more men as subjects than women. But in the case of women, it’s not just the hormones; there are other factors influencing their sleep as well. These fall into three major groups: biological factors that involve fluctuations in hormones and temperature and genetic factors; psychological factors like expectations, stress responses and mood; and socio-cultural factors like child rearing, work and family commitments.To determine a proper sleep pattern for women one needs to know the complete menstrual cycle.

Sleep in women

Women’s sleep patterns have some typical highlights.

• Increased percentage of slow-wave sleep that tends to decay more slowly than men. [Slow-wave sleep is the stage of deepest sleep characterised by absence of eye movements, decreased body temperature, and involuntary body movements.]
• Young women have shorter sleep latency and higher sleep efficiency compared to young men. [Sleep latency is the amount of time it takes to fall asleep after the lights have been turned off.]
• Older women have a higher sleep efficiency [Sleep efficiency is the ratio of time spent asleep—total sleep time—to the amount of time spent in bed]. Elderly males, on the other hand, spend more time in bed.

Monthly cycles

Sleep in women gets affected due to the menstrual cycle. The changing landscape of sex hormones during the cycle appears to be associated with changes in overall structure of sleep [sleep architecture in medical terms]. Levels of melatonin, cortisol, thyroid stimulating hormone, and prolactin impact sleep.

Even during the menstrual cycle the characteristics of sleep differ as per the two phases of the cycle: follicular and luteal.

In general, sleep appears better [few arousals] in the early luteal phase when progesterone hormones are increasing. As those hormones recede, the number of arousals increases leading to a disturbed sleep. In the luteal phase, there is a higher percentage of NREM [non-rapid eye movement sleep] as compared with the follicular phases. The follicular phase also has more UARS [Upper airway resistance syndrome] as compared to the luteal phase. Upper airway resistance syndrome is a sleep-disordered breathing syndrome characterized by complaints of daytime fatigue and/or sleepiness, increased upper airway resistance during sleep, frequent transient arousals, and no significant hypoxemia.

During your menstrual cycle, there are chances of you suffering from menstrual related hypersomnia. [Usually hypersomnia is characterised recurring episodes of excessive daytime sleepiness {EDS} or prolonged night-time sleep] Though this is not common, it is a possibly treatable condition.

Menstrual related Hypersomnia can be characterised by:

• Recurrent episodes of sleepiness in association with menstrual cycle.
• The disorder begins within the first month of menarche [beginning of menstruation].
• Episodes last approximately a week.
• Rapid resolution at the time of menses.

Pregnancy patterns

Sleep patterns vary during pregnancy. The changes are trimester specific. An increase rate of sleep disorder is seen during pregnancy. Here how sleep gets affected when you are carrying.

First trimester

• Increased total sleep time, possibly due to the relative properties of progesterone.
• Sleep disruption.
• Nausea/vomiting, frequent urination.

Second trimester

• Many report improved sleep and daytime alertness
• Decreased nausea
• Normalisation of total sleep time

Third trimester

• Decreased total sleep time
• Increased insomnia/nocturnal awakening
• Increased daytime sleepiness
• General physical discomfort, frequent urination, back/front pains, nasal congestion, leg cramps, foetal movement and contractions

If you are pregnant, your sleep pattern can actually predict the lengthy labour and type of delivery you will have. Your WASO or Wake After Sleep Onset can tell you the probability of having a C-section. WASO is the total time spent awake during the night after having initially fallen asleep. A WASO of 15 per cent plus indicates 5.2 per cent odds of having a C-section, WASO of 10-14 per cent means 1.9 per cent odds of a C-section. If your total sleep time [TST] is less than six hours you have 4.5 per cent odds of assisted delivery. If your TST is over seven hours, you have 1.0 per cent odds of a C-section.

Several other sleep disorders can co-exist during pregnancy, which include: sleep disordered breathing; insomnia; restless leg syndrome [RLS] and parasomnia.

Pregnancy is a dynamic time of changing physiological and psychological state which can affect sleep. There is an alteration in sleep architecture. The changing sleep affects physiological symptoms. Medications to treat sleep disorder are often considered unsafe during this time, but a sleep specialist can relieve the problem with non-invasive recommendations.

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