About TSC

Sleep Problems in TSC

More than 30 percent of adults and children with TSC describe sleep problems when asked. These include daytime sleepiness, initiation of sleep, maintenance of sleep and intrinsic sleep disorders. However, the most common sleep problem is insufficient sleep affecting both those with TSC and their caregivers. The result of poor sleep is daytime sleepiness. In children, this sleepiness may manifest as hyperactivity as they fight this sense of sleepiness increasing their motor activity to stay awake. (Stimulants prescribed for attention deficit hyperactivity disorder {ADHD} are the same medicines prescribed to help keep you awake. Studies suggest up to one-third of children with ADHD have an underlying sleep disorder.)

Epilepsy is often a confounding variable in sleep problems associated with TSC. Seizures disrupt sleep, and lack of sleep increases seizures. In addition, anticonvulsant medicines cause daytime sleepiness, which can be misinterpreted as the result of poor sleep. Daytime sleepiness may be caused by insufficient sleep or frequent interruption or fragmentation of nighttime sleep. Insufficient sleep is the most common cause of daytime sleepiness.

Good sleep hygiene is key to a good restful night sleep.

Regular sleep habits are the foundation to a good night sleep. For most adolescents and adults, 8-10 hours of sleep are recommended. The bedroom and bed should be for sleep only. Our body has its internal clock that tells the brain when to fall asleep. Sleep times should be regular, especially wake time, as this helps to solidify our intrinsic body clock. Bright light in the morning also acts to reinforce of this clock. Bright light at night moves your internal clock so your body wants to stay awake. Avoid excessive screen time (TV, computer, PDA, smartphone) especially near bedtime. For children, remove these devices from their bedrooms.  Regular exercise is also important but should not be undertaken in the evening.  No caffeine in the evening; it disrupts sleep even if you don’t think it bothers you. Alcohol disrupts normal sleep patterns and interferes with the refreshing nature of good sleep. Smoking interferes with sleep (which is another reason to quit the habit).  If you can’t sleep get out of bed and engage in a quiet activity, such as reading, until you feel sleepy. For people whose worries always seen to interfere with falling asleep, try “worry time.”  After dinner spend 10 minutes to write down the day’s concerns and try to develop a plan to deal with them instead of at bedtime.

Is an underlying sleep disorder the cause?

In approaching sleep problems the first step is to determine if there is an underlying sleep disorder causing sleepiness or interfering with sleep continuity.   Snoring or overt apnea (respiratory pauses) occur in 5-10% of the population and at higher frequencies over the age of 60. In children large tonsil and adenoids, small jaws, and muscle hypotonia are the major causes.  In adults, obesity is the major cause.  Restless leg syndrome, the urge or need to move the legs and often associated with an abnormal sensation in the legs, usually occurs at sleep onset. It can lead to difficulty falling asleep and these movements can occur during sleep-producing arousals, which disrupt sleep. Both of these disorders cause daytime sleepiness.  Diagnosis may require an overnight sleep study called a polysomnogram, which records brain activity, breathing pattern, oxygen saturation, and muscle activity. Treatment of intrinsic sleep disorders should be individualized. Consultation with a sleep medicine specialist is recommended.

Insomnia is defined as a disorder of initiating or maintaining sleep. Sleep onset and sleep maintenance problems often occur in children with developmental disabilities. For sleep onset problems a review of sleep patterns is the first step. Has a regular sleep schedule been established with normal waking times?  Are naps limited to 1 hour before age 6 and eliminated in older children? Are there family issues that keep child up, such as waiting for a parent to come home?  For younger children is there a bedtime ritual that helps the child wind down and fall asleep?  Examples include: a shower or bath, reading a story, or offering a favorite transitional object (toy, stuffed animal).

For sleep maintenance problems are there intrinsic causes for arousal? Are there loud noises, temperature regulation issues, or people leaving the house at night? If the child arouses at night what is your response? Does the child see nighttime arousals as an opportunity to have 1:1 attention with their caregivers? If seizures are the cause of the nighttime arousals you can discuss giving more of the total daily dose of medicine at night and less during the day to hopefully decrease nocturnal seizures. In both adult and children, insomnia and nighttime awakenings may be symptoms of depression. Any concerns about depression should be promptly evaluated by a physician, as there are many effective and safe therapeutic options.

Treatments

Treatment for insomnia in adults can include cognitive behavioral therapy and/or short-acting non-benzodiazepine GABA agonist1 sleep medications.  Both therapies are equally effective.  There are no FDA-approved medicines with indications for insomnia for children.

Melatonin is the natural hormone that regulates our body clock. Melatonin is sold as a dietary supplement and can vary in potency. However, melatonin is typically the first drug used for insomnia.  It is given 30 minutes before bedtime. Starting doses range from 1-3 mg, and limited data suggest up to 10 mg can be used.

Clonidine, a drug used for hypertension, is the most often prescribed drug for sleep onset problems.  Its major side effect is sedation and can be an effective sleep aid.  The first few doses should be given in bed as initially dosing can cause a fall in blood pressure when standing up quickly and a possible fainting episode. Typical dosing is 0.05-0.01 mg one half hour prior to sleep onset. The non-benzodiazepine GABA agonists may also be used.  For children with severe behavior problems Risperdal or other antipsychotics may be useful.  For sleep maintenance issues if melatonin is not successful then Clonazepam, a long-acting benzodiazepine, may be effective; however, at higher doses it may cause morning hangover.

All treatment should be individualized and you should consult your physician or a sleep medicine specialist prior to starting any medical therapy.

This is a brief outline of sleep issues in TSC. Please consult with your physician or sleep specialist if these issues affect your or a family member.  Often physicians do not ask about sleep problems so you may have to initiate the questions.

References

  • 1GABA, also known as gamma-aminobutyric acid, is a chemical made in the brain that blocks impulses between nerve cells (think of it as a calming effect).   An agonist is a substance that stimulates an activity, so a “GABA agonist” is a chemical that stimulates GABA’s activity in the brain.
  • Written by Michael H. Kohrman, MS, MD^, Professor of Pediatrics, Neurology and Surgery,
  • University of Chicago.  Director of the Pediatric Epilepsy Program and TSC Clinic at Comer Children’s Hospital (May 2015).
    ^As of August 2015, Director of Neurology, Akron Children’s Hospital, Akron, OH