Sleep and Parkinson’s Disease — Out-Thinking Parkinson’s

This continues a series of posts which reframe aspects of Idiopathic Parkinson’s Disease as the result of lifelong habitual patterns, behaviours or coping strategies that exacerbate and may even be causal of the symptoms. This is a more hopeful, growth mindset approach to living with the condition, which runs counter to the Medical Institutionalized Narrative of hopelessness and powerlessness, that we have no agency, and hence that only steady decline is possible. Instead, by identifying and addressing root causes and the contributing factors, a new narrative of progressive symptom reduction, growth and restoration emerges.

We have already explored how poor postural patterns, disordered breathing, unhealthy relationships with food, and anxiety driven thought processes can all impact on, increase severity of, and even cause, the symptoms, and hence how, by addressing these through adopting new habits and behaviours for life, we can support continual diminishment of PD symptoms over time. These interventions work by downregulating the Dorsal Vagus Nerve mediated freeze stress response and the Cell Danger Response in the body.

In this article, we consider the role of sleep on PD symptoms. I believe that getting good sleep is absolutely foundational, on which all other progressive symptom reduction strategies rest. Indeed, Florencia Cerruti, author of Rebirth at 50: in the end it was not The End, points out that poor sleep, along with stress, is to people with PD like Kryptonite is to Superman. Unfortunately, sleep problems are extremely common with PD.

This is to be expected, since PD involves severe dopamine dysregulation, and dopamine is now known to be intimately linked to wakefulness and sleep cycles, as covered for example in the recent article “Wake up and Smell the Dopamine: New Mechanisms Mediating Dopamine Activity Fluctuations Related to Sleep and Psychostimulant Sensitivity” published in Nature, and earlier articles such as “Evidence That Sleep Deprivation Downregulates Dopamine D2R in Ventral Striatum in the Human Brain” in the Journal of Neuroscience. So dopamine dysregulation and sleep dysregulation go hand in hand and feed off of each other. For example, many people with PD experience daytime sleepiness, but insomnia at night. It is difficult to get to sleep when one’s Nervous System is on the constant look out for danger!

I have experienced a vicious circle of this interplay between inappropriate dopamine levels, too much at the wrong times in my case, and severe sleep disruption. A very stressful situation at home resulted in an unbearable increase in levels of physical and mental pain, which led me to taking more and more (overdosing on) dopamine supplementing pills, including ingesting them throughout the night, which resulted in total insomnia, and this sleep deprivation in turn very rapidly increased the symptoms, stress and pain even further. The outcome was my emergency hospitalization two years ago, after I had gone weeks without any sleep at all.

Moreover, just like the other contributing factors covered previously, most people with PD, when honestly looking back on their lives, will see they already had, possibly life long, disrupted sleep patterns well before the dopamine dysregulation and PD symptoms became apparent. For myself, I had night terrors as a child, and slept under the covers into my twenties. As a teenager, I would go to bed very late, lie in for a long time and get up feeling absolutely wretched. As an adult, I resorted to alcohol almost nightly to be able to get to sleep at all, but suffered the restless forms of sleep which alcohol also causes. Also, like many people with PD, I was a lifelong mouth breather, which is known to have devastating effects on getting restorative rest, resulting in sleep apnea for example.

Yet, as for the other contributing factors we have already identified, just because things were always this way for us doesn’t mean that it always has to be. It is never too late to change nor to make different choices. In this article, we consider what we can do to fix our sleep.

I believe that once a person with PD who suffers from sleep disturbances has experienced the difference a few nights of consistently good sleep makes to symptoms and quality of life, this will be motivation enough to make sleep a priority for life. However, fixing our lifelong issues with sleep is not going to happen overnight. In order to become motivated enough to pursue this to a point where we can experience that vast difference which consistent good nights sleep has on symptoms for ourselves, I believe it is beneficial to educate ourselves about the subject. Not only in order to glean just what sleep can do for us, but also to begin to wield the factors which are under our control that have impact on it.

Let’s start with how sleep cleans the garbage from our brains. According to the Scientific American article “Deep Sleep Gives Your Brain a Deep Clean: Slow-wave activity during dreamless slumber helps wash out neural detritus”, sleep has restorative effects on cognition and brain health, and during deep sleep cerebrospinal fluid flushes out toxic waste. Conversely, if we aren’t getting good sleep, toxins will be building up in our brains. Clearly, for neurological conditions like PD, this is a disaster, and is likely to contribute to faster disease progression.

Indeed, according to the above mentioned recent article in Nature:

“Sleep serves a crucial survival function… proper sleep not only provides time for rest and metabolic recovery via glial and endocrine functioning, but also contributes critical cognitive processes like memory consolidation and mood stabilization… there is a growing consensus that most, if not all, neuropsychiatric disorders are associated with atypical sleep”.

Memory, mood and cognitive issues are common symptoms for people with PD.

Another article, from the Harvard Gazette, entitled “Probing the sleep-deprived brain”, reports that

“the cumulative effects of sleep deprivation may be more dangerous than is currently understood… it interferes with cognition, as well as its possible links to dementia and Alzheimer’s disease”.

One effect is that lack of sleep inhibits dopamine transmission, such that although brain cells may be able to release dopamine, they not to receive it. This is highly relevant for people with PD. Also, very relevant to people with PD who are on dopamine agonist drugs, is that the article reports, when people are sleep-deprived, they are less likely to regulate their desires, and they engage in impulsive behaviours. Severe life-changing impulsive and obsessive-compulsive behaviours are a hallmark of dopamine agonist drugs, and hence a lack of sleep may make these serious side-effects worse or harder to cope with.

PD is also associated with a build up of a mis-folded protein, alpha-synuclein, building up in the brain. A similar issues occurs in Alzheimer’s, for which the Harvard research suggests

“we can document an association between poor sleep quality and a higher [build up] in the brain… shows a scientific reason why sleep is necessary for a healthy brain.”

The report concludes that clinical research has too often neglected the importance of sleep, but the evidence is now clear it has an important role in the capacity of the brain to renew itself.

While the above may be daunting, the good news is that sleep is so restorative, if we can move towards better quality sleep, we can start undoing the damage accrued.

In terms of getting a better understanding of how sleep benefits us, the factors which affect it and practical measures we can start taking today to improve, Dr Andrew Huberman, Neuroscience Professor & Lab Director at Stanford University School of Medicine, has recently put together a very accessible series of lectures on all things sleep, bringing us right up to date with the science of sleep in a highly pragmatic way (see the videos dated January 2021 on the Huberman Lab YouTube channel). I urge anyone affected with PD, and everyone who has a care role for people with PD, to get familiar with this information, and review often.

Another great source on the science of sleep, especially how timing of food and light exposure has massive impacts on sleep, is Dr Satchin Panda, author of The Circadian Code.

A major part of the insomnia suffered by people with Parkinson’s Disease is that our body clocks are broken. In a very real sense, we are permanently severely jet-lagged, and our biorhythms are completely out of sync with the timing signals coming from the environment. This is reflected in our eyes and vision, which have a number of peculiar features, including being dark-adapted during the daytime, as if it was night. In his podcast episode, “Timing Your Light, Food, Temperature and Exercise”, Dr Huberman goes into details about these daily rhythms and how the body clock can be reset or the system recalibrated through timing exposure to changing light or temperature levels.

Indeed, in numerous scientific studies now, strategically timed light therapy has been shown to be able to produce significant reduction in PD symptoms, by resetting the body clock and thereby improving sleep quality. I strongly recommend people with PD to at least worth giving light therapy a good go as a first step, not least because it can have other benefits, such as helping to reduce depression and anxiety. Indeed, before my crisis and subsequent hospitalization a couple of years ago, I had consistently used timed light therapy delivered via a wearable device to keep my sleep under control.

However, after coming out of hospital I found that personally I couldn’t get that form of light therapy working for me in regards to sleep. This might have been due to the increased pain and anxiety I was experiencing, or more likely to interactions of the light therapy with the medication I was now on. While I had gone in to hospital on one drug, I came out on a cocktail. The new drugs included high levels of morphine, a dopamine agonist injection, and an anti-depressant, all of which can have significant impacts on sleep quality or insomnia.

Initially, I relied on the morphine to make me drowsy enough to sleep at night (not a good idea and not recommended), but as my body adjusted to it and it became less effective, my sleep started to become completely disrupted again. It appeared that the morphine had been masking the underlying problem of total insomnia which had resulted in my hospitalization in the first place, and was now coming back with a vengeance. This was a stark reminder to me of the impact of poor sleep on PD symptoms and on quality of life.

I rapidly devolved into a terrible state again, and after night after night with no sleep, the doctor gave me a prescription for a sleeping tablet. This hypnotic class of drug allowed me fall to sleep very quickly, and sleep through until morning. This quickly bought significant symptom relief.

There followed a time of a few months where I was guaranteed a good nights sleep, and my daytime symptoms were as well controlled as they’d ever been, and, while the sleeping drug was known to be highly problematic, in particular being contra-indicated for PD due to increase risk of falls, for me it had no obvious side-effects. In my mind, the long term risks of the drug were significantly outweighed by the very real risk of rapid neurodegeneration and faster disease progression, together with no quality of life in the now, caused by the alternative of total insomnia.

Then the UK regulatory authorities changed the guidelines on this class of drug, so that they can only be prescribed for short term use, due to their addictive and problematic natures. I was therefore unilaterally weaned off the drug, and the nightmare of total insomnia began again.

I resolved I needed to fix this issue once and for all and began to focus all my efforts on finding a way to address this, the Achille’s Heel of my progressive symptom reduction strategies, and this time repair my sleep in a way that didn’t rely on drugs.

My Parkinson’s Nurse first tried swapping out the sleeping drug that the doctor would no longer prescribe for pharmaceutical melatonin. This didn’t work for me and made my insomnia even worse. However, I was anxious about it, because there are contra-indications for long term use in PD. Some theories of PD even assert that it is not just a shortage of dopamine which is the issue, but the resulting imbalance between dopamine (too little) and melatonin (too much).

Whenever we look at other hormones and neurotransmitters in people with PD (e.g. histamine, insulin, adrenaline, serotonin, glutamate, etc.), the balances with dopamine are always off. It appears that it is more the relative levels between various biochemicals which are causal, rather than the absolute levels of any one individual chemical. The old-fashioned “dopamine producing cell death” narrative was naïve.

Indeed, a light therapy protocol developed by a clinic in Australia for PD, which has demonstrated real life long term symptom reduction [I was following a similar protocol before the crisis I had a couple of years back], works by attacking melatonin when it is at its peak value, thus bringing balance back to dopamine and melatonin levels.

Furthermore, Dr Andrew Huberman also expresses qualms about melatonin as a long term solution, as it reduces levels of sex hormones.

Nevertheless, if melatonin works to restore healthy sleep for a person with PD, my feeling is that the potential downsides are far outweighed by the very real risks of neurodegeneration/faster disease progression resulting from broken sleep, Therefore it is worth trying it, especially before risking even more problematic pharmaceutical interventions. At least, melatonin is a natural chemical we produce in our brain and body, and is therefore likely to have less of negative impact than getting hooked on man-made unnatural chemicals.

From here, I started looking into other natural, herbal, sleep remedies. I tried tinctures, as these avoid the fillers and problematic capsules which come with dry or powdered supplements, that I know from experience can have negative impact. I researched and came up with list of potential natural remedies: passion flower, valerian, lemon balm, hops, Californian poppy, chamomile. None of these really worked for me. However, by this stage, I was having intense sleep anxiety – so worried about not being able to sleep that the anxiousness about it was preventing me from sleeping. The sleep anxiety may have been a stronger effect than the herbal sedatives could counter. Since everyone’s body chemistry is different, I think it is still worth any one with PD trying any and all these to see if any of them are helpful.

Indeed, I discovered something interesting along the way. Taking the passion flower tincture reduced my pain and rigidity! I later found out that passion flower is a weak MAO inhibitor, and hence slows the break down of dopamine, works like the PD drug Rasagiline.

Several times along the way, I also I tried the Zeez Sleep Pebble, and had fruitful conversations with the developer, Anna McKay. This device, which is placed under the pillow, recreates the brain wave patterns of a good sleeper, via an extremely weak electric field. Unfortunately, I was one of the one in five people for which this didn’t work. This may be because I didn’t have sufficient control of EMFs in my environment, which can interfere with the very weak signal. Nevertheless, Anna reports significant benefits for people with PD who have used it, so is another potential solution to explore. Anna says

“We now have around fifteen people with Parkinson’s successfully using the Zeez Sleep Pebble who bought it from us, plus others who continue to use it following on from the case series study done on Parkinson’s related sleep disorder by Plymouth University. I do think that our device can really help: our success rate with people with Parkinson’s is around the same as for other people.”

I also tried mouth taping, since breathing through the mouth at night is known to be very deleterious to good sleep, resulting in snoring or sleep apnoea. Many people are reporting that gently taping the mouth closed improves their quality of sleep significantly, subsequent to the publication of the book Breathe: The New Science of a Lost Art by James Nestor, who describes the practice. For me, this seems to have no effect, but this may because I had already done years of work to restore my nasal breathing as default after a lifetime of being a mouth breather, including I believe, nasal breathing at night. It seems I had already pretty much rectified this, so taping my mouth made no difference. However, since most people with PD are chronic mouth breathers, mouth taping may have significant benefits, and is another possibility to try.

So, for myself, the hunt was still on for a solution.

At the same time as implementing the solutions below, I was already undertaking daily Block Therapy, the Safe and Sound Protocol sessions, and many breathing exercises, which have all been helping to lower, and continue lower, my pain and discomfort, my anxiety and my drug burden. I’m sure this has all also allowed me to sleep better in large part too. Also, even now, getting good rest still requires very strict adherence to sleep hygiene. For me this requires strictly no food or drink apart from water after 6 pm, no looking at computers or phone screens after 7:30 pm, being in bed for sleep before 10pm. In fact, according to the work of Dr Panda mentioned above, the time restricted eating in particular may have had a more significant impact on my sleep than I had realized.

What I’ve found really helped me start to resolve my total insomnia was the “Sleep RX” program of the Brain Tap app., which I first heard about in an episode of the Better Health Guy podcast. The app contains listening programs which consist of special combinations of guided meditations, hypnotherapy, tonal therapy and music. I started by listening to one of the half hour sessions mid-morning each day, after the first dose of PD medication has worn off, while I am in the “off” state. I quickly notice that the choice of the female voice worked better for me. After about a week, I found I was at least getting a couple of hours sleep a night.

I’ve continued to use it, and listen each morning instead of doing a Yoga Nidra mediation, as it seems to have the same benefits, but with a hypnotherapeutic/neurolinguistic programming component too, and because I find if I stop doing it for a couple of days, my sleep starts to suffer again. I also find listening to this helps the second dose of PD medication of the day more likely to work and kick in quicker.

The second piece of the puzzle for me was in exploring sleep music on YouTube. I found that if I played a particular track on low volume all night long, it further improved my sleep. I still do this, as again its effects seem cumulative, and if I don’t have it on, I sleep less well.

An additional intervention I discovered more recently a finger tapping exercise. It does seem to help quieten my mind, and increase the probability that I will drop off to sleep quickly. I have also added in breathing in and out through the left nostril (closing off the right with a finger) for a time after the tapping exercise, as I read in James Nestor’s book that this is parasympathetic Nervous System promoting. This does seem to enhance the affect of the tapping exercise for falling asleep too.

I have also been using a Sensate 2 device daily, an infrasound based calming/vagus nerve stimulating device, and I do feel this is also helping, probably through reducing overall levels of anxiety further, and hence lessening proneness to sleep anxiety.

I am currently exploring Dr Huberman’s and Dr Panda’s very pragmatic findings on how timing of meals and light exposure can optimize sleep, e.g. getting enough yellow-blue sunlight into my eyes before 10am and then viewing the sunset in the evening, as the most natural way to keep the body clock on time, and restricting eating and drinking (apart from water) to within a 10 hour time window per day.

My sleep is currently nowhere near perfect, and I tend to wake up a few times in the night, but am falling asleep again, and the quality of my sleep continues to improve. Nights with no sleep whatsoever are thankfully rarer now.

Both Dr Andrew Huberman and Dr Satchin Panda talk about the importance of regulating body temperature for circadian rhythm and sleep. Basically, oscillations in body temperature is the way that the brain signals time of day to the entire body, because changing temperature is the one thing which can be felt by all the cells of the body simultaneously.

A couple of weeks ago the heating broke down here and then they changed the heating system. Synchronously, my sleep got totally broken again. At first I was too hot, and when I did finally fall asleep, I soon woke up again, sweating and overheated, and had to take the bed clothes off. So then I turned the heating completely off at night. I still had very bad sleep, and woke up feeling cold which prevented me getting back to sleep.

After about a week of this, I starting playing with the thermostat setting to try to get a comfortable night temperature. As soon as I did this, I had a sudden improvement in sleep quality. I slept through every night for a week – this is completely unheard of for me. While there have been some up and downs since, the number of nights I sleep through is consistently much higher than it has ever been.

It seems that the moral of the story of good sleep, like that for Goldilocks and the Three Bears, is not too hot, not too cold, but just right!

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