Sleep and Dystonia
A. Background
Most researchers comment that dystonia seems to disappear in sleep.The surveys confirm that lying down does often help but they are not consistent about claims the dystonia actually is gone.
If muscle function returns to normal during sleep this may suggest that sleep operates like a sensory trick .If the mechanism for dystonia can be turned on and off so easily this may suggest routes to treatment and possibly cure.
However anecdotally not all patients report that dystonia is gone during sleep. The difference may be important to study to see what types of dystonia have that effect or for which patients.
B. Factors
Other factors may complicate the question.
the level of sleep.
It may be useful to study whether during deep sleep dystonia is gone but during other lighter levels is still present.
getting to sleep
When people try to get to sleep, factors affecting success such as physical exhaustion, mental exhaustion, room temperature, air circulation, humidity, silence or noise may also be important. Many in the general population report that getting to sleep is a challenge some nights and it is likely that for those with dystonia, such cnnditions also matter. It may be useful to study if those factors are more dramatic with dystonia. Some of the surveys suggest sensitivity to heat and light are more pronounced in some patients. Some report greater sensitivity to noise, a pronounced startle reflect, a calming of vibrationns or in some cases an irritation due to nearby vibrations.
Those with dystonia that causes painful body position, spasms, failing, jerking motions are dealing with an additional challenge in just finding a position which permit them to sleep. Those who experience the ’45 second rule’ phenomenon where any body position is comfortable at first but within 45 minutes becomes increasingly painful also report difficulty just getting to sleep.
staying asleep
Sleep disturbance may be due to room temperature, noise, vibrations nearby and other external factors. It may also be due to internal factors such as worry, or problems moving between sleep levels when the body is in physical discomfort. Man patients report that their sleep is sporadic and some even nickname themselves as members of the 2AM or No Sleep Club for Dystonia. It may be useful to study sleep levels that are achieved and if they differ for those with dystonia.
sleepto permit shut down of many systems so the body can rest.
The fact a person can get some sleep, briefly, does not prove they are not in pain, seriously ill or under great emotional stress. In such circumstances sleep is however usually briefer than normal.
less battle to fight against gravity
Those with cervical dystonia who are constantly battling to hold their head in a position to permit daily activity, may find that simply not having to fight gravity is a relief. Being able to ‘take a load off’ the feet, the runk, to sink into cushions and let them support some of the body weight is reported to bring relief to many people with dystonia. This effect however may be mainly in less need to resist gravity.
cushions, blankets, objects to brace against or lean on
Those with body spasms or strong pressure to tilt the body may find relief leaning against a wall, room divider, chair back or cushion that provides some help resisting the dystonia. The placement of cushions and pillows is reported as very important to those with dystonia as they try to sleep. The benefit may be from the gentle push to resist dystonia or brace the body against dystonia pressure taking the neck to extreme positions. The benefit may be partly the reassurance of a soft brace to prevent chin pushing in so much the person may fear choking or the benefit may be just of tactile reassurance of a soft material touching the body.
the touch of some objects on the body may provide a sensory trick
If the cushion at the neck or on the cheek activates the mechanism of a sensory trick, this may also be a factor in the benefit of a sleep position.
If sleep does alter dystonia, the type of benefit may be useful to study.
Whether spasms disappear, or pain, or muscle tightness, or pressure are all reduced or just some of them may provide useful information.
C. The nature of sleep
1. Sleep has four cycles. The body usually cycles through these 4 stages during the night 70-120 minutes per cycle
nonREM stage 1 – first asleep 7 minutes
non REM stage 2 – light sleep
non REM stage 3 – deep sleep
During this stage brain activity is less, there are pulses of activity. There is prevention of unwanted awakening and there is atonia, muscle paralysis so a person does not move around. Some patients report that with dystonia the muscles seem tight and somewhat stuck in position anyway.
stage 4 – REM sleep – 90 minutes- dreaming
During this stage many muscles are paralyzed to prevent acting out dreams
but the eyes and respiration are very active, with rapid eye movement under the eyelids. The body is immobile and relaxed though the brain is apparently very active imagining scenarios some of which involve imagined body action. Research suggests that signals are sent to spinal cord to shut off movement so there is temporarily paralysis
of arms and legs. If the message to suppress is not given the person may sleep walk
It may be useful to study how dystonia differs from sleep, since both tend to in some ways immobilize muscles.
2. what happens in the body during sleep
Sleep studies in the general population have found that during sleep some processes slow down as if to give the body a rest. Body temperature drops, heartbeat slows, breathing slows, brain waves slow, muscles relax. The body uses less glucose than during the day.
Other functions increase, to repair and replenish. There is more blood sent to muscles, there is tissue growth and repair. The brain organizes information and gets rid of toxic waste. Nerve cells communicate with each other, the body releases different proteins. The body now can take up glucose better and use insulin more efficiently. There is more activity in amygdala that helps the mind respond to fear.
When a person lacks sleep the body seems to work harder to keep awake and compensate for the lack of repair. There is more activity in striatum, hippocampus, insula and medial prefrontal cortex If dystonia interferes with sleep, one might assume that this lack of sleep would produce therefore its own negative effects.
3. hormone regulation during sleep
Studies have found in the general population that during sleep melatonin is produced to promote sleep. growth hormone is regulated for bone and muscle development, leptin and ghrelin are regulated for appetite control. cortisol is regulated to handle stress
Since dystonia seems linked to changes in neurotransmitter levels it may be useful to study if this effect is due to the dystonia itself or to lack of sleep time to make normal adjustments to those levels..
4. effect of lack of sleep
Clinical tudies have shown that in the general population prolonged loss of sleep can lead to higher blood pressure, increase in sympathetic nervous system activity as the body works harder to stay awake. It also can lead to shutting down of some functions, poorer focus, poorer concentration . poor memory. a weaker immune system and poor motor function. Since people with dystonia already have challenges to motor function, long term effects of lack of sleep may make motion even more difficult.
The surveys found that some patients have fewer symptoms even a better voice in the first hour after waking, which suggests that the repair function does work but is usually not enough.
5. stress regulation and sleep
Sleep is a key resource to handle daily stressors and lack of sleep seems to produce significant challenges to the brain. Normally stress response goes through these stage. stress response
-there is a perceived current or impending crisis
-cortisol is produced
-in the amygdala region near center of brain is alerted for dramatic reaction
-the hippocampus calms down the amygdala response
If a person gets enough sleep, some brain areas help cope with stress.
-in the insula tissue is built up to help control the stress response over time
-the anterior cingulate cortext is strengthened to help handle stress over time
-the corpus callosum connecting the left and right hemispheres of the brain
integrates word, images, logic, intuition is also strengthened to handle stress over time
When people with dystonia suffer loss of sleep or lower quality of sleep, the impact may be profound in ability to handle daily ups and downs and dystonia usually adds to those ups and downs.
D. Possible solutions
If patients experience problems sleeping, a first response is often to try means available in the home such as drinking warm milk, having a warm bath, listening to music, avoiding use of technology before sleep, avoiding eating a large meal before sleep. Some patients report using meditation or listening to calming lulling voices on tape.
When doctors are consulted, particularly when loss of sleep has built up to a crisis level, it is common for patients to be prescribed sleeping pills or anxiety reducing medication. Patients have however reported that this avenue of solution can also present problems. For some the medication does not quite provide deep or satisfying sleep and the person does not wake refreshed anyway. For some the medication produces vivid and sometimes upsetting dreams while others find the dreams vivid but pleasant. For some the medication however is addictive and does not seem to actually affect dystonia.
It may be useful to practitioners to consider that sleeplessness of those with dystonia is not necessarily due to anxiety. It may be due to the painful positions of dystonia and the lower qualify of sleep that results in less body repair. Patients have expressed a sadness that their simple lack of sleep is sometimes treated as a mental health problem when it may be more physical.
The general public in sleep is integrating the day’s experiences and reworking connections, discarding, sorting, This seems to also happen quite well with dystonia. Patients report and clinical studies confirm that dystonia itself does not seem interfere with cognition or executive function in general .
However sometimes medication to assist with sleep has been known to increase certain mental health challenges, causing forgetfulness, short term memory loss, dizziness and in some cases anxiety.. Patients often express frustration at the double bind some feel in where they need sleep but the pills prescribed may sometimes make their situation even seem worse.
These areas may be of use :
For patients
-a better understanding of dystonia in the public so that the condition is less stigmatized and problems sleeping are understood more as medical than psychiatric
-a reassurance to patients that they are normal in their experience of the condition , reducing any added burden of guilt over loss of sleep
-reassuring patients that home strategies of reading a boring book, getting up and doing some distracting activity like research, changing heat pads can all help and that trying them out is normal adjustment to dystonia
For clinicians it may be useful:
-to do a thorough study of patient medical history, allergies and sensitivities to medication before prescribing sleep medication to ensure that a given pill is appropriate for them
-to inform patients of the doses of the medication and reasons for the recommendations about dose adjustments. Patients may risk fewer side effects from sudden stopping or starting of pills or making dose adjustments if they understand how this medication should be used.
E. Survey results;
Survey results that dystonia is less or absent during sleep
61.11% The pressure is less when I lie down or sleep (9-4)
48.15% The pressure is less when I rest my head against a soft cushion (9 -4)
42.86% I have fewer symptoms when I lie down (12B-5)
40.00% My spasms or tremors seem less in deep sleep (4-23)
40.00% My pain is less in deep sleep (4-23)
40.00% My muscle tightness seems less in deep sleep (4-23)
37.50% A daytime nap helps me (25-17)
26.00% My jerky involuntary movements seem less in deep sleep (4-23)
24.39% My eye spasms don’t happen when I sleep ) 5-17)
20.00% The dystonia is least at night (28-16)
3.28% People tell me that my talking in my sleep is normal voice (8-28)
Survey results that dystonia does not affect sleep
50.53% My sleeping has not changed over time with dystonia (2B – 16)
50.00% Lying on my back is comfortable (25-18)
37.50% Lying on my dystonic side is comfortable (25-18)
37.50% I can sleep in many positions comfortably (25-18)
30.30% My pillow needs have not changed (13-47)
25.00% Dystonia has not affected my sleep (25-17)
20.00% The dystonia has not required me to adjust my sleeping position (34-3)
17.20% My sleep is the same as before dystonia (3A-25)
14.29% The dystonia is always the same (12B-50)
12.50% Lying on my stomach is comfortable (25-18)
12.50% Lying on my nondystonic side is comfortable (25-18)
12.50% Dystonia has not affected the positions I can sleep in (25-18)
7.14% It makes no difference lying on my stomach for comfort (12B-49)
Survey results that suggest that dystonia is till active during sleep
66.53% dystonia has affected my energy, sleep (1-12)
60.00% I have a way to make lying down comfortable (34-3)
50.00% My sleep is turbulent because of pain. trying to get comfortable (25-17)
50.00% I am often awake in the night, member of the no-sleep club (25-17)
40.91% the pain so intense that it sometimes interferes with my sleep (23-16)
38.46% I arch my arm over my head at night to reduce the dystonia(12B- 31)
33.33% It is hard to life flat, as if my body wants to arch (12B – 28)
20.00% The dystonia can suddenly create intense pain in the night (28-16)
19.05% I sweat more in my sleep since dystonia (23-21)
16.93% The dystonia is intense at night ( 2A-26)
14.00% My dystonia is always intense, even during sleep (4-23)
12.50% A daytime nap makes me stiffen up (25-17)
10.75% I have more trouble getting to sleep due to pain (3A-25)
sleeping position to get comfortable
78.57% Lying on my stomach is actually uncomfortable (12B- 49)
70.00% I am very particular about pillow position because of dystonia (9-18)
60.61% Yes and pillow arrangement matters a lot to me now (13-47)
58.00% I have found a sleeping position that is eventually comfortable (9-18)
50.00% Some sleeping positions lead to spasms (25-18)
50.00% In a new position pain builds up pain so I have to shift position (25-18)
48.39% It helps to have a soft pillow against the muscle at night (13-35)
38.00% To avoid pain I change sleeping position till I fall asleep (9-18)
37.50% Some sleeping positions are painful (25-18)
36.00% I like to have a pillow behind my head (9-18)
33.33% I have changed my sleeping position to lessen dystonia (32-12)
32.26% I sleep better near constant furnace or fan noise(13-43
30.00% I go into spasms in some sleeping positions (9-18)
25.81% I wake more often in the night due to pain or spasms (3A-25)
22.00% I like to have a pillow beside my head (9-18)
20.99% I am able to have a pretty good sleep most nights (2A-38)
19.35% I have trouble getting to sleep due to spasms (3A- 25)
17.68% I have only found one or two positions where I can finally sleep (2A-38)
12.15% I feel sorry for anyone I sleep near because I am so restless (2A-38)
10.50% In sleep I keep having involuntary movements (2A-38)
10.00% Over time I have found sleeping positions that are comfortable ( 9-18)
9.68% I am not sure if sleep change is due to dystonia or medications(3A -25)
6.63% I put myself into odd body position in order to sleep (2A-38)
6.00% I sometimes have a soft cushion in front of my neck (9-18)
4.97% In sleep I experience pressure and pain to go to one body position (2A-38)
3.87% In sleep I have spasms every time I try to change position (2A-38)
strategies that help sleep
87.50% I use a special pillow -memory foam, feather or double pillow (25-19)
75.00% I sleep best with silence, no radio or TV or voices nearby (25-19)
75.00% I sleep well with lights off, dark curtains, tech devices turned off (25-19)
60.00% With dystonia, pillow arrangement has become very important to me
60.00% I really need the neck support of a pillow (34-4)
38.71% I find it reassuring to listen to a person or pet sleeping near me (13-44)
36.67% Yes usually it helps to have a window open at night(13-42)
25.00% When I can’t sleep I write down new ideas (25-20)
25.00% I sleep well with soft music, sound of waves , lulling voices (25-19)
25.00% I sleep better if I had warm milk before bed (25-20)
25.00% I like to have pillows or a soft brace touching my skin (25-19)
20.00% To get to sleep, I breathe in the nose and out the mouth (34-3)
20.00% A dark room relaxes me (34-3)
12.50% It helps me get to sleep to listen to audio books (25-20)
12.50% I sleep well with a vibration near me like on a train or airplane (25-19)
strategies that hinder sleep
50.00% I sleep better if I have not had caffeine recently (25-20)
37.50% A heavy or weighted blanket feels too constricting for me (25-19)
25.00% I sleep better if I have not had a big meal in the last few hours (25-20)
10.00% Fresh air can disrupt my comfort (13-42)
sleep strategies that have no effect
43.33% An open window makes no difference to me (13-42)
41.94% constant fan noise makes no difference to my sleep (13-43)
lying down, cushions or resting even without sleep
The position of lying down
61.11% report that the pressure on their neck is less when they lie down or sleep
A cushion or pillow seems to also help in general with dystonia, even as a preference when some patients are standing and lean on something, are seated, are driving. The benefit of the cushion may be to help support the weight of the head or may be a help to resist the need to constantly fight against gravity
60.38% when seated try to find a place to lean the head against a wall, cushion or
room divider
60.38% report that when possible, to read they lie down and rest the head against cushions
48.15% report the pressure is less when they rest their head against a soft cushion
20.00% report they sometimes use a soft cushion at the back of the neck
20.00% use a soft cushion at the front of the neck
20.00% report they sometimes use a scarf for neck support
Getting into a comfortable, nonpainful position seems also a challenge.
58.00% report they have found at least one sleeping position that is eventually
comfortable. Though statistically one cannot make a lot of conclusions
based on who did not answer, this statistic may suggest that a large
number do not find comfortable positions much at all.
10.00% report that over time and with exercise they have found other sleeping
positions that are also comfortable
effect of treatment on sleep
-Since the treatment have you been sleeping better?
50.00% No, there was no effect of treatment on my sleep (15-40)
17.86% Yes, a little better (14-40)
7.14% Yes, a lot better
3.57% No, my sleep became less comfortable after treatment (15-40
value of sleep
58.33% My symptoms are worse if I miss sleep(24-5)
25.00%- 42.86% It felt like my only escape from worry was sleep (17A-31)
the first interval after waking
41.67% When I first get up from sleeping I am wobbly (23-3)
37.50% When I first wake up my dystonia seems gone (25-17)
25.00% When I first wake up I am a bit dizzy (25-17)
F. Conclusion:
The relationship of dystonia to sleep may be very useful to study.
Lived Experience With Dystonia 