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“Sleep Matters: A Review of Sleep Issues in Parkinson’s” – Webinar Notes

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In mid-October, the American Parkinson Disease Association’s Massachusetts chapter (APDA MA) hosted a webinar on sleep issues in Parkinson’s disease (PD).  The webinar featured movement disorder specialist Dr. Okeanis Vaou who described common sleep disorders in PD and how to treat them.  Sleep disorders are present in about 66-99% of people with PD.

Dr. Vaou discussed different sleep disorders in PD including:

  • REM sleep behavior disorder (RBD) (25-50% of people with PD)
  • Daytime sleepiness (15-50% of people with PD)
  • Insomnia (60-98% of people with PD)
  • Nocturnal motor fluctuations:
  • Restless legs syndrome (3-52% of people with PD)

Dr. Vaou ended the webinar by giving tips on how to maintain good sleep hygiene, such as regular wakening and bed times, avoiding stimulants, and minimizing light and noise. 

For more information on sleep please see this Stanford Parkinson’s Community Outreach webpage: 

Sleep and PD

For a recording of this webinar, please see this APDA MA chapter YouTube webpage

See below for notes on the October 12th webinar. This webinar started with general information about PD but we did not include it in these notes, as we focused on sleep issues. 

Regards, 

– Joëlle Kuehn

“Sleep Matters: A Review of Sleep Issues in Parkinson’s” – Webinar Notes (related to sleep issues)

Speaker: Okeanis Vaou, MD, director, movement disorders program, St. Elizabeth Medical Center, Boston, Massachusetts

Webinar Host: APDA Massachusetts chapter

Webinar Date: October 12, 2021

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Sleep disorders:

  • Present in about 66% – 90% of PD patients
  • REM sleep behavior disorder (RBD)
  • Daytime sleepiness
  • Insomnia (increased sleep latency, reduced sleep efficiency)  
  • Restless legs syndrome
  • Periodic limb movements of sleep

REM sleep behavior disorder (RBD):

  • 25-50% of PD patients
  • RBD may precede the onset of PD by 12.7 +/- 7 years and may serve as an early marker for PD:
    • It may be an early marker, but it is also a early marker for other diseases, so hard to say if someone has RBD that it means they will have PD
    • Having said that, a recent meta-analysis of longitudinal studies (long term) revealed that 97% of RBD patients converted to a neurodegenerative disorder after a follow up of 14.2 years, and a significantly higher risk for developing PD than for any other disorder.  Most common was PD, second most common was Dementia with Lewy Bodies.
  • Loss of normal absence of muscle tone during REM sleep which manifests as dream reenactment
  • Abnormal or disruptive behaviors emerging during REM sleep and having potential to cause behaviors:
    • Falling off the bed, kicking a bed partner, lacerations, fractures, dislocations
    • Injuries to self and bed partner
  • Behaviors: smiling, talking, laughing, shouting, gesturing, grabbing, flailing arms, punching, kicking, sitting or leaping out of bed, running
  • Diagnosed using an overnight sleep study manifesting muscle activity during REM sleep in the chin EMG (electromyography) or limb EMG 
  • Risk factors: hallucinations, dementia, male gender, antidepressants, alcohol withdrawal

Management of RBD:

  • First assess how dangerous/aggressive the patient is
  • Goal is to minimize dream enactment behaviors, associated injuries and unpleasant dreams, and to improve bedpartner quality of life
  • Education for patient/bed partner and counseling
  • Discontinue any RBD aggravators (medication): 
    • SSRIs, SNRIs, TCAs 
    • These are antidepressants, and antianxiety medications if possible
  • Low doses of clonazepam (effective but may alter cognition, which is not good for those who already have cognitive impairments)
  • Melatonin – it is the first treatment tried in patients with cognitive impairments

Excessive daytime sleepiness:

  • PD patients sleep most of the day and are awake during the night
  • 15-50% of PD patient
  • Impaired arousal systems, circadian rhythm, dopaminergic medication, nocturnal disturbances, and concurrent primary sleep disorders such as sleep apnea, RBD, and RLS, exhaustion from motor symptoms of PD
  • More common in more severe PD, and is associated with older age, male gender, dementia or depression, long duration of levodopa therapy and hallucinations 

Managing excessive daytime sleepiness:

  • Dopamine agonists should be decreased or stopped if the patient feels drowsy
  • Keep the patient awake during the day.  Easier said than done, but do your best
  • Increased mental and physical activity
  • Light exposure – go outside for a walk, can help with sleep patterns and circadian rhythm
  • Stimulants such as modafinil, methylphenidate and amphetamine
  • For adequate sleep at night, a hypnotic may be added to the daytime stimulant
  • Keep in mind: Increased risk of traffic accidents and should be cautioned not to drive.  Do not drive if you are sleepy

Insomnia:

  • Sleep maintenance is a major problem in the PD population
  • Causes for insomnia:  Frequent urination (79%), difficulty turning over in bed (65%), muscle cramps (medications wear off at night) (55%), nightmares (48%), limb or facial dystonia (constant muscle contraction that can lead to pain) (34%), leg jerks (33%), RBD and periodic limb movements of sleep
  • Risk factors for insomnia:  Depression, anxiety, duration of levodopa therapy, duration of the disease
  • Who gets insomnia:
    • General population: 6 – 30%
    • PD population: 60-98%%
      • Affects women more than men
      • Mild PD – 25% report sleep onset/maintenance insomnia
      • Moderate PD: 39% sleep onset/maintenance insomnia 
      • 18% of individuals report Difficulty falling asleep, 31% report difficulty staying asleep, 39% reported nonrestorative sleep
      • Difficulty maintaining sleep appears to be the most common complaint and prevalence increases with worsening PD severity      
  • What is insomnia:
    • Difficulty initiating/falling asleep
    • Difficulty maintaining sleep.  Staying asleep
    • Early morning awakenings:  Ex. waking up at 4am and not being able to go back to sleep
    • Accompanied by daytime impairments related to sleeping difficulties
  • Diagnosis of chronic insomnia disorder requires that the complaints be present at least 3 times per week for at least 3 months

Nocturnal motor fluctuations:

  • PD patients with greater baseline motor fluctuations during the day reported greater insomnia over time
  • Nocturnal bradykinesia (slowness) and rigidity
  • Tremor with nocturnal awakening
  • Nocturnal dystonia
  • Nocturia (have to go to the bathroom) and nocturnal pain      
  • Discomfort from difficulty changing positions in bed

Managing nocturnal motor fluctuations:

  • Long-acting dopaminergic medication:  Sometimes the motor fluctuations mean the symptoms are not treated enough and you are undermedicated
  • Rotigotine patch – also improves morning off items and motor scores
  • Intrajejunal levodopa gel:  Jejunum – part of the small intestine
  • DBS – deep brain stimulation – improvement in sleep quality, sleep duration and sleep onset, and sleep maintenance insomnia, wake up after sleep onset time, and sleep efficiency

Restless legs syndrome:

  • Sensory problem
  • Urge to move limbs often with uncomfortable sensation
  • Symptoms:
    • Creepy, crawly, tingly, painful, burning, achy
    • Like worms or bugs crawling deep in the muscle, water running under the skin
    • Affects both legs, may affect the arms but that isn’t that common
    • May be unilateral or alternating   
  • Symptoms are worse exclusively at rest (sitting or laying down), or during periods of inactivity
  • Symptoms are partially or totally relieved by movement:  “Walking it off”
  • Circadian rhythm: symptoms must be worse or exclusively in the evening or night
  • RLS:
    • PD patients: 3-52% had RLS
    • Non-PD population: 0-10% had RLS 
  • Sleep disturbances in RLS:
    • Difficulty getting to sleep
    • Fewer hours of sleep
    • Increased number of awakenings for patient and bed partner
    • Periodic limb movements of sleep-jerking movements of the legs during sleep that are not uncomfortable but can result in nighttime awakenings

Managing RLS:

  • Avoid: caffeine, alcohol, several medications (antihistamines, tricyclic antidepressants, and serotonergic reuptake inhibitors
  • Iron supplements
  • Can treat with dopamine agonists: pramipexole, ropinirole, rotigotine patch
  • If you can’t tolerate dopamine agonists (have side effects), other options are: Gabapentin, pregabalin, opioids (rare)

Management of Nocturia:

  • Urinary urgency, overactive bladder, patient wakes up thinking they need to urinate
  • Patient needs to get a urological evaluation to see if it is anything else that is causing the symptoms
  • If it is a symptom of PD, we try to treat nocturia with medications that will relax the bladder muscle so the patient is able to sleep better
  • Medication treatments of urinary urgency and frequency:
    • Oxybutynin (Ditropan), Tolterodine (Detrol), Trospium (Sanctura), Solifenacin (Vesicare), Myrbetriq  
    • A tricyclic antidepressant (Amitriptyline) may also be used to improve sleep as well as urinary urgency
  • Limit fluid intake before bedtime 

 Mood disorders that may affect sleep:

  • Depression
  • Anxiety
  • Hallucinations
  • Psychosis

Behaviors that may affect sleep:

  • Excessive napping may significantly weaken the nocturnal homeostatic sleep drive 
  • Anxiety/depression: prevalence rates of major depressive disorder and minor depression is 17% and 22% in PD patients
  • Rumination
  • Dysfunctional sleep beliefs – people think watching TV in bed will help with sleep but in fact it doesn’t

Medication effects:

  • Dopaminergic medications – daytime somnolence, sudden episodes of sleep, insomnia
  • Medication associated with insomnia and affect patients ability to sleep at night:
    • Acetylcholinesterase inhibitors (used for dementia): galantamine, donepezil, rivastigmine
    • SSRIs: fluvoxamine, sertraline, fluoxetine
    • SNRI: venlafaxine
    • PD medication: Selegiline 

Medication treatment of insomnia in PD:

  • Eszopiclone (Lunesta)
  • Doxepin
  • Melatonin
  • Sovorexant (Belsomra)
  • Pimavanserin (Nuplazid)
  • Strong recommendation against use of all “z-drugs”, such as eszopiclone and against the use of doxepin at doses over 6pm
  • For patients over the age of 65, melatonin formations and doxepin should stay under 6mg, ramelteon (Rozerem) under 8mg, and Sovorexant under 8 mg

Medication by symptom:

  • Sleep onset: favor of the “z-drugs” (zaleplon, zolpidem, eszopiclone), ramelteon, temazepam, triazolam
  • Sleep maintenance: zolpidem, eszopiclone, doxepin, temazepam, suvorexant

Non-pharmacological treatment of insomnia:

  • Cognitive behavior therapy
  • Light therapy:
    • 1 hour of light exposure in the morning and afternoon
    • Has proven to help with difficulty in initiating sleep and improves sleep scores and efficiency
    • Good for people with moderate to severe dementia/PD who are unable to engage in other non-pharmacological interventions for insomnia
  • Exercise – good to keep someone awake 
  • Qigong/Tai Chi:
    • Low-intensity physical activity, meditative movements and breathing exercises to achieve relaxed state
    • Could be done before bed
  • Deep brain stimulation (DBS)

Steps to better sleep hygiene: getting to sleep/falling asleep

  • Regular rise-time and bedtime – brain is a creature of habit 
  • Get plenty of bright natural light exposure, preferably in the morning along with exercise
  • Avoid stimulants, such as caffeine and nicotine
  • Avoid thoughts or discussions about topics that cause anxiety, anger, and frustration before bedtime
  • Institute and maintain a definitely bedtime routine that is relaxing
  • Reserve the bedroom and especially the bed for sleeping
  • Avoid daytime napping
  • Don’t spend more than 15 minutes trying to sleep – if you cannot sleep after 15 minutes get out of bed and engage in a quiet activity.  Return to bed only when you are sleepy

Steps to better sleep hygiene: staying asleep:

  • Minimize light and noise at bedtime and throughout the night
  • Avoid heavy exercise within 6 hours of bedtime:
    • Exercise increases body temperature
    • Sleep onset normally occurs as the core body temperature is decreasing
  • Avoid heavy late night meals
  • Assure the bedroom environment is right for sleep: comfortable bed, dark, quiet, and a cool temperature for sleeping  
  • Avoid looking at the bedroom clock if you awaken.  If necessary, face the clock to the wall
  • Use of satin sheets on the bed or pajamas to help with moving and turning in bed can minimize the effects of stiffness or pain
  • A commode placed at the bedside will minimize the activity and necessary light needed for nighttime toileting:
    • If you go to the bathroom try not to turn on bright lights
    • Use a nightlight or something that still allows you to see where you are going but isn’t very bright

Question & Answer:

Question: How important is it to have a formal sleep study?

Answer:  For REM behavior disorder, you don’t really need a sleep study to diagnose. If you know the patient has PD and you know the symptoms that the patient tells you, you can diagnose it from there. However, if a patient says they have additional symptoms, like waking up many times during the night, they’re snoring, or can’t breathe, then we need to get a sleep study because they may have obstructive sleep apnea.We also might want to get a sleep study if the patient has severe periodic limb movements of sleep, you may want to know the severity of the condition. If it’s very severe, it can lead to waking someone up during the night. What is also very useful in diagnosing sleep disorder is actigraphy which is where the patient wears something that tracks their sleep habits. It usually is worn for 2 weeks and can help with diagnosis. 

Question: How many consecutive hours of sleep does one need to be restored?

Answer: We recommend 7-8 hours. Sleeping too much is not good either, so we don’t want the patient sleeping more than 9 hours or less than 7 hours. 

Question: My doctor says I have mixed sleep apnea. Is this more common in PD patients and what is it?

Answer: There are two kinds of apnea. Obstructive apnea is where there is a physical mechanical obstruction in the airway. Central sleep apnea is when the brain does not give the signal to take a breath in your sleep. Eventually you do, but there is a pause. Some people have both. The most common condition in which people have both is a heart condition called congestive heart failure. In PD we don’t see that there is a high risk for having sleep apnea, the odds are the same for PD patients as the general population. 

Question:  Since my tremors do not occur while I sleep, why can’t we turn off whatever quiets my tremors when I’m asleep, when I wake?

Answer: When we are sleeping, the tremors are not present. The tremors are part of the motor symptoms, but the tremors usually coexist with muscle stiffness, cramping, and slow movements and discomfort. Overall, people who are undermedicated or not being treated during the nighttime, patients become very uncomfortable and in pain due to the lack of dopamine, before the morning medications kick in.

Question: How long can we nap per day?

Answer: Anything over 20 minutes per day is too long. If you can sleep at night and nap, you can continue napping. You shouldn’t nap more than 20 minutes if you have trouble sleeping at night. 

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