I was spending the night during a retreat on an uncomfortable couch. No one else seemed concerned that there was a small animal, no, more like a sea creature slipping around the corners of the room while the women settled in for the night. “Just don’t provoke it”, the retreat leader warned me, “If you try and fight it will become violent”.
Everyone falls asleep while I lay awake listening to the sound of dry leaves being moved as this thing moved through the room. Suddenly it is on me. I grab it by its body which feels like raw calamari, its long tentacle snapping back and forth with tremendous power. It becomes a life or death struggle as I realize it intends to go inside of me. I must stop it at all costs. The tentacle was progressing down my nostril and into the back of my throat. I scream in terror and pull as hard as I can to dislodge the thing, and finally I am able to pull the long tentacle back out of my nose and I throw it to the ground.
It is 5:45 am and I awake to the nurse knocking on the door to my hospital room. “I heard you screaming from down the hall, is everything alright?” My nasal-gastric tube lay on the floor. I touch my face. The tape which had been holding the tube that ran through my nose and into my stomach was gone, in its place a smear of warm sticky blood. Am I awake or asleep? The nurse sees the tube and turns on the lights for a better look. I had done something that I would have considered an act of highest desperation. Maybe an addict trying to leave the hospital or a confused elderly patient after surgery could pull off this level of self-inflicted pain. I am crying now in humiliation. I am that confused patient.
Usually when we dream our muscle activity is dialed back, allowing us to dream we can fly without feeling the need to jump out of bed thinking we can fly. The “off switch” in our brains allows for all kinds of wonderful and at times terrifying dream experiences with no harm to the dreamer or anyone nearby. When the muscle activity isn’t turned off and individuals act out their dreams, this is a REM sleep disorder called without Atonia. Atonia refers to the muscular paralysis that occurs following sleep to keep the body from physically reacting to dreams while in REM sleep, so when “without Atonia” occurs the keys have been left in the ignition of a Maserati and your dream state is raring to go.
This behavior, known as Hospitalization Psychosis, can be one of a group of psychiatric issues that one in three patients experienc after as few as 3 days in the hospital. More common in the Intensive Care Unit, patients suffer stress because of sleep disturbances, the continuous light levels, a lack of reference to day or night, a feeling od loss of control, and all the medical monitoring. Of course well people do not go into the hospital so the stress of critical illness, new medications, lower oxygen levels, electrolyte imbalances, dehydration and getting poked and hooked up to a multitude a devices can make anyone lose some marbles. Luckily these symptoms usually subside when the patient returns to their own living environment.
There is also a group of neurodegenerative disorders including Idiopathic (of unknown cause) Parkinson Disease, Lewy Body Dementia, and Multiple Systems Atrophy. It was Lewy Body Dementia that took the life of Robin Williams. I am sure that his widow and my spouse could exchange stories of sleep disorders that started as quirky and became onerous.
Often poorly diagnosed, the sleep disorder aspect of these syndromes can become obvious within a hospital setting. I went into a long hospitalization with the symptoms already of this sleep disorder. At home I was dealing with screaming in my sleep, trying to get up out of bed, and occasionally pinching my poor husband. The drugs which I take have put the brakes on, causing some amount of relief, but they were not the panacea I had hoped for. After eight days in the hospital for yet other symptoms of a neurodegenerative disorder, my vivid dreaming without Atonia has followed me home. It is getting better, but I needed to consider that I could fall, plus I have another tube besides the nasal-gastric tube that I could decide was a sea creature trying to invade my body. It would be damaging to my body to start pulling it out willy-nilly.
For now the solution is a pair of lovely mitts my sister-in-law graciously created for me to wear at night. With my hands safely strapped in to my “Angel Mitts” I have extra time before my Ninja hands escape from the mitts that are made to keep Houdini captive. Last night it took me 4 hours to get them off. Hours of safe rest, as my mind raced off into unlikely scenarios. My husband of 43 years woke when I started to wake up. I did not ask him if I was yelling, or giving a speech on Democracy, one of my most recent recurrent dreams, influenced I am sure by the looming election. He has loved me through some pretty weird stuff, but there I was with my mitts on. We have entered a new phase.
Standing in the doorway he smiles and sighs, “We should have held onto those handcuffs”.
From the MSA Coalition website:
REM Behavior Disorder:
Non-Pharmacological Treatment Options
REM sleep behavior disorder (RBD), also referred to as REM sleep without atonia (RSWA), is a
condition in which muscles fail to relax during REM sleep, instead, remaining active or contracted.
RSWA is diagnosed via sleep study (polysomnogram) and is distinct from sleep walking, sleep terrors
and nocturnal panic disorder. Bed partners of patients with RSWA often describe that their partners
display highly active and/or violent behavior during sleep, such as flailing limbs, dream enactment and
walking from or falling out of bed. Patients often recall their dreams, which corroborate with their
enactment behavior. However, rather than being aggressive in nature, patients usually report their
dreams as being defensive, such as fending off an attack as opposed to being the attacker. Though not
all patients with RSWA experience dream enactment, when present, it causes actual or potential injury
to both themselves and their partners.
RBD is regarded as a potential early sign of MSA and other alpha-synuclein disorders. Risk for
developing Parkinsonism after being diagnosed with RBD is 20 to 45 percent within 5 years and 45 to
55 percent within 12 years. MSA is the most common of the alpha-synucleinopathies to be associated
with RBD, with 68 to 88 percent of MSA patients affected. Antidepressant use increases risk of
developing RBD by 500 percent (all facts this section ref 1).
If this story reminds you of you, or someone you love please see a Sleep Specialist.
For more information of other symptoms of MSA and other diseases involving misfolded alpha-synucleins please check out https://www.multiplesystematrophy.org/
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