Pillow Fight: Sleep and Chronic Illness (Part 2)

Trouble tossing and turning? Experts offer tips for getting better sleep, plus an overview of sleep disorders and sleep testing, from A to Zzzzzzzzzzz.

Timothy Morgenthaler, M.D., president of the American Academy of Sleep Medicine (AASM), and professor of medicine at Mayo Clinic, discusses sleep and chronic illnesses, including pulmonary hypertension, Huntington’s disease, and narcolepsy, and gives tips on regulating sleep, and testing for sleep disorders.

Click here to read part 1.

The current American College of Chest Physicians (ACCP) guidelines for evaluation and management of pulmonary hypertension strongly recommend an evaluation for sleep-disordered breathing, in particular obstructive sleep apnea syndrome, both because it can be contributory, and in severe cases, causative of pulmonary hypertension.

Recent literature shows a very high percentage of patients who have World Health Organization (WHO) Class 1 pulmonary hypertension have either obstructive or central sleep apnea. Furthermore, there’s really a growing body of evidence that shows that when you treat sleep apnea using positive airway pressure, not only does it treat the sleep consequences of having these sleep disorders, it also lowers the pulmonary artery pressure.

What I think the new information showing a high prevalence of central sleep apnea means for patients who have significant pulmonary hypertension, is that they will be best served to be evaluated by a board-certified sleep specialist, who has significant expertise in diagnosing sleep-disordered breathing and in management with the different devices that we can use to manage sleep apnea. People could find such specialists at an AASM-accredited sleep center, or they can look on www.sleepeducation.com, and locate sleep experts close to them.

Pulmonary hypertension patients can have other sleep diseases, but they do tend to have a high prevalence of fatigue as a symptom. Fatigue management can also sometimes be helped by a sleep specialist.

Huntington’s disease is less common than Parkinson’s or Alzheimer’s or Lewy body, all of which are degenerative central nervous system (CNS) diseases. What’s come to light in recent times is how significant sleep concerns are in Huntington’s patients. They basically weren’t asked in the past. Now that they’re asked, they tell.

A significant sleep problem is that their circadian rhythm gets quite upset, such that their wake and sleep patterns get very off-center from what the rest of their community wants to obey.

Given that, in some of the other diseases, like in Alzheimer’s disease, sleep issues are actually one of the primary reasons for institutionalization, it’s probably very important that we pay special attention to patients’ sleep complaints in Huntington’s disease as well.

Narcolepsy is probably best managed by sleep specialists who have gone through fellowship training to learn how to manage narcolepsy and other primary CNS hypersomnias.

It’s a very interesting hypersomnia that has increasingly known cause. At least at the anatomical level, we know about the hypocretin system and how that seems to be not functioning well in patients with narcolepsy.

We’re still at a point where narcolepsy diagnoses rely on well-done sleep studies. We have quite a large referral for narcolepsy here at the Mayo Clinic Center for Sleep Medicine. One of the real problems is that very often people coming to us have had less than optimal diagnostic evaluations.

Our current tools for diagnosing narcolepsy are sleep studies, and they involve, first of all, obtaining a very accurate history of peoples’ actual sleep patterns and how they are pursuing those, followed by an overnight polysomnogram, which is our most accurate tool for knowing exactly how that person sleeps and what sleep stages they have, followed by multiple sleep latency testing.

Very often, when patients are referred to us for management of narcolepsy or reevaluation, because something hasn’t quite worked out right, we find that the evaluation has been done inappropriately, or not very optimally.

Either it was not clear what medications they were on when they were having the test, and that turns out to be very important, or it was not objectively documented what their sleep schedule was prior to the testing. There are many things that can go wrong, and in order to really orchestrate getting that test sequence done correctly, it takes work.

I really think that, wherever possible, that type of diagnostic evaluation should be done at an accredited center that’s going to adhere to the guidelines and should be done very carefully. Because you are rendering a service, you hope, to a patient, and it’s one that’s going to give them a diagnosis, and it’s a chronic illness that we don’t have a cure for.

You’re really committing to a lifelong management of an illness, and we should take great care to make sure we have the right diagnosis, so that our treatments make sense.

Patients with advanced emphysema [such as the genetic or inherited emphysema caused by alpha-1 antitrypsin deficiency] certainly have a poor quality of sleep. They have a higher prevalence of, not only breathing problems, but also tend to have much more fragmented sleep.

How much of that is due to anxiety, depression, and discomfort, I don’t think is well known, but even there, there are guidelines that can help patients with such severe emphysema sleep better.

Althea Robinson-Shelton, M.D., assistant professor, Neurology-Sleep Division, Vanderbilt University, discusses the relationship of sleep to childhood epilepsies and pediatric narcolepsy, testing for pediatric sleep disorders, and the importance of pediatric sleep hygiene and ritual.

It is important to establish a consistent sleep ritual and sleep environment for children. Starting a wind-down time before bed is a good idea. This is a time, 45 minutes to an hour before bed, when all electronics are turned off, and non-stimulating activities, such as reading, drawing or writing are done.

‘What is bedtime? Is there a TV in the room? Are there electronics in the room?’ are just a few important sleep hygiene questions.

Narcolepsy may initially present solely with excessive daytime sleepiness. If cataplexy (loss of body tone with strong emotion) is not initially present, it may develop later. We now know that the [average] lag time from onset of symptoms to diagnosis is about eight years.

Many narcolepsy patients’ symptoms started in adolescence, but they were labeled as lazy, or [told] they weren’t trying hard enough. In reality, they are trying their best to stay awake. They’re not intentionally sleeping in class or sleeping all day. It’s really difficult for them to stay awake.

If your child is getting sufficient sleep, meaning they’re going to bed in a timely manner, falling asleep in a timely manner (within 30 minutes), and sleeping through the night, but they’re still having excessive daytime sleepiness, there is concern for a possible sleep disorder. It may not be narcolepsy, but narcolepsy is on the differential diagnosis.

Sleep and epilepsy are intertwined. Chronic sleep deprivation can lower seizure threshold, which in turn can increase seizure frequency. This phenomenon can become a perpetual cycle, where chronic sleep deprivation can lead to greater seizure frequency, and an increase in seizure frequency causes sleep disruption.

When a child comes in with a sleep-maintenance insomnia (they fall asleep without issue, but have difficulty maintaining sleep), there are potentially a number of causes, but if they have a history of epilepsy, nocturnal seizures may be the cause. Other disorders that can cause disruption in sleep, such as obstructive sleep apnea (OSA) and periodic limb movement disorder (PLMD), must also be considered.

Parents often don’t suspect children of having OSA, or [they think] that snoring is normal. Snoring, especially when it is in association with respiratory pauses, gasping and/or choking is concerning for OSA. Untreated OSA causes sleep deprivation, which can increase seizure frequency.

If a parent is concerned about a possible sleep disorder in their child, the first step is evaluation by a sleep specialist. Based on the clinical history and exam, a polysomnogram (PSG) may be recommended.

If narcolepsy is in the differential diagnosis, a PSG to exclude disorders that fragment sleep (for example, OSA or PLMD) will be ordered along with a multiple sleep latency test (MSLT).

Evaluating and treating sleep disorders in childhood improves quality of life and may improve seizure control in patients with epilepsy.

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