Please note that Walker does not discuss chronic fatigue syndrome or fibromyalgia in his book, and this blog does not specifically pertain to either disease: it is not meant to be a prescription for sleep for either disease. (That will come later in the sleep series.) Rather, it’s a general overview of sleep topics from a leader in the field as Health Rising starts its Sleep Series.
This is the second part of a two-part series reviewing Matthew Walker’s book “Why We Sleep: Unlocking the Power of Sleep and Dreams” . Walker PhD, is a Professor of Neuroscience and Psychology at the UC Berkeley, and the founder and director of the Center for Human Sleep Science. He’s co-authored over a 100 sleep studies. A self-proclaimed “Sleep Diplomat“, Walker has been on a mission to convince the world to take sleep more seriously.
The most controversial chapter in Walker’s book is undoubtedly the one on sleeping pills. During an interview he said the publisher assiduously fact-checked that chapter, in particular, to avoid being sued by the pharmaceutical companies.
Approximately 10 million people take some sleep aid every month and the numbers rise as we get older. One estimate suggests that 20% of older Americans regularly take sleep drugs. People in the U.S. spend $30 billion dollars a year on prescription drug and over-the-counter sleep remedies.
Walker is not a fan of sleeping pills.
Walker isn’t having it, though. If he had his way, one gets the feeling all sleeping pills would be removed from the market. Sleeping pills, he bluntly states, at the beginning of the chapter, “do not provide natural sleep, can damage health, and increase the risk of life-threatening diseases”. Ouch.
In fact, Walker doesn’t believe these are “sleeping pills” at all. They’re basically sedating agents or knock-out drugs. The older sleep drugs, such as diazepam, basically did knock you out, but Walker doesn’t believe the newer sleep drugs are much better. They don’t improve sleep – they simply shut down the higher regions of our brains’ cortexes.
(This is not quite true. Some studies suggest that Ambien, for instance, improves spindle activation and short-term memory. Studies suggest that sleep drugs do improve total time asleep, reduce time to fall asleep, etc., and that people may feel better using them; i.e. they experience more restorative sleep.)
Putting sleep in parentheses, Walker reports that the type of “sleep” drugs like Ambien or Lunesta promotes lacks the large, deep brainwaves produced during normal NREM (non-rapid eye movement) sleep.
Walker’s assertion that these drugs can’t reproduce natural sleep is borne out in the grogginess, forgetfulness and slowed reaction times during the day that some people experience with them.
There’s also the potential problem of “rebound insomnia” in which insomnia worsens when one stops the drugs, as well as possible problems with drug withdrawal.
Increased Mortality
Walker goes further, suggesting that the drugs don’t do a great job of inducing real sleep, though. He asserts that they’re actually dangerous.
Walker reached back to a very large (n=10,500 patients) 2012 study by University of California at San Diego which found that over a 2 1/2 year period that people taking hypnotic sleep drugs (zolpidem (Ambien), temazepam (Restoril), eszopiclone (Lunesta), zaleplon (Sonata), other benzodiazepines, barbiturates and sedative antihistamines (ketotifen) were almost 5 times more likely to die. Even people using sleeping pills 1 1/2 times a month showed an 3.6 fold increase in mortality.
(The participants were age and gender, smoking, body mass index, ethnicity, marital status, alcohol use and prior cancer matched people; i.e. none of these other factors could have caused the increase in death rates.)
Possible reasons for the increased death rates included increased rates of drug-induced depression or suicide (several sleep drugs come with suicide warnings), car accidents from impaired motor skills, increased falls due to reduced coordination, increased rates of sleep apnea and increased rates of cancer.
Given the important immunological boosts, which occur during natural sleep, but which Walker implies don’t take place with sleep drugs, he suggests that higher rates of infection may contribute as well.
Instead of going down, as one would expect from a helpful drugs, most studies show mortality rate increasing when sleeping pills are used. (Image by Mediamodifier from Pixabay.)
The UCSD study is just one of 24 studies which have found that using hypnotic sleep drugs increased mortality rates. No studies have found that using them has improved mortality rates – as one would expect from a helpful drug. A 2018 500,000-person, 13-year study found that Ambien carried the highest mortality risk. Two recent studies found that using hypnotics for sleep was associated with an increased risk of coming down with Alzheimer’s Disease.
But doesn’t having a sleep disorder, by itself, increase one’s risk of mortality or of coming down with a disease? Throughout his book, after all, Walker has harped on the dangers of not getting a good night’s sleep. Maybe it’s the poor sleep, not the drugs, which is causing the increased mortality and other issues.
A meta-review of 17 studies which including a total of 36 million people over 11 years, however, found no increase in mortality in people with symptoms of insomnia compared with those who didn’t have those symptoms. It did, however, find an increase in mortality for people with insomnia who were taking hypnotic-type sleep aids.
A large (n=158,000) Women’s Health Initiative sleep study also found no association between insomnia and mortality but did find an association between hypnotic sleep drugs and insomnia. It also found a “small but robust” association between amount of sleep (either too much (9 hours or too little (<5 hours) and mortality. Sleep abundance, rather than insomnia, is the contributor to increased mortality.
Walker’s Prescription for Good Sleep
“Eighty percent of my patients make their sleep worse.” Dr. Lucinda Bateman
So what to do about insomnia and/or poor sleep? Walker has spent hundreds of pages attempting to convince everyone how important sleep is. He’s just skewered the most common sleep remedy – sleep drugs. After all that, Walker’s prescription for good sleep comes as something of a letdown. It’s called sleep hygiene, and if that doesn’t work, there’s CBT-I (cognitive behavioral therapy for insomnia).
Many people have heard of sleep hygiene which involves preparing a good environment for sleep – the consistent sleep times, the darkened, cooled room, turning off digital media (avoiding blue light), using the bed only for sleep, avoiding napping after 3 pm, avoiding caffeine and alcohol, taking a warm bath before bed (to cool down your core), relaxing before sleeping, getting out of bed if you’re not sleeping.
That’s all good, but there is a more powerful approach. Virtually every sleep drug mortality study suggested that insomniacs turn to a therapy – the name of which will likely to raise the hackles of many people with ME/CFS – cognitive behavioral therapy for insomnia (CBT-I) instead of drugs. In 2016, in fact, the American College of Physicians recommended that CBT-I, not sleep drugs, be used as a “first-line” treatment for insomnia.
CBT-I is more effective and produces less side effects. Plus, you don’t have to worry about kicking off early or developing Alzheimer’s or other diseases. It is, however, more difficult than taking a pill.
Treatment Takeaways
- Matthew Walker, a neuroscientist at UC Berkeley and the author of Why We Sleep: Unlocking the Power of Sleep and Dreams” argues that while sleep drugs do knock one out, that they don’t provide natural sleep, and can even be harmful. (Sleep drugs can increase sleep time, reduce awakenings, etc. and may help some people achieve more refreshing sleep.)
- Walker reports that most sleep studies report that taking sleep drugs is associated with an increased risk of mortality, as well as some cancers and diseases like Alzheimer’s disease.
- Studies that have tracked people with symptoms of insomnia do not find that insomnia, itself, increases the risk of death – but have found that taking insomnia drugs may.
- Noting the many ways that sympathetic nervous system activation (which is prevalent in ME/CFS and FM) impairs one’s ability to enter into sleep and then to enter into deep sleep, Walker promotes practices like sleep hygiene and CBT for Insomnia.
- CBT for Insomnia or CBT-I is now recommended as a first line treatment for insomnia (over sleep drugs.).
Sleep drugs are generally recommended only for short-term use.
Insomnia and Sympathetic Nervous System Activation
Walker showed that activation of the “fight or flight” system (sympathetic nervous system (SNS) activation), a common problem in both ME/CFS and FM, has multiple impacts on insomnia and sleep. SNS activation makes it more difficult to transition from light to deep sleep. By keeping the core body temperature higher SNS activation also makes it more difficult to get into light sleep.
A hyperactive sympathetic nervous system makes it difficult to relax enough to get good sleep.
(A drop in core body temperature is associated with entering into sleep. The benefit of a warm bath occurs not while you’re in the bath but when you step out of the bath into the colder air, spilling body heat into the air, and sending your core body temperature down.)
Not only do the vigilance centers of the brain remain on guard in insomnia, but the sensory gates that usually stop the flow of stimuli to the brain remain open. When people with insomnia do get to sleep, their sleep tends to be shallower and is more punctuated by awakenings, and they tend to wake up feeling unrefreshed – a common experience in FM and ME/CFS.
CBT-I studies have not, to my knowledge, been done in ME/CFS but in general (2 positive, 1 negative study) have had positive results in fibromyalgia.
CBT-I uses a variety of behavioral techniques and practices to, among other things, calm the fight-or-flight response down. They include sleep hygiene and go well beyond it. The practices can include such things as:
Aspects of CBT-I
Keeping a Sleep Diary – check out an example from the National Sleep Foundation.
Sleep Restriction Therapy (SRT) – SRT has been called the “most effective sleep hygiene technique” available. That’s the good news. The bad news is that it’s also the toughest one and can in the short term (weeks!) actually make your sleep temporarily worse. Still, many swear by it.
In sleep restriction therapy, you determine how much sleep you’ve been getting (a minimum of 5.8 hours), set a wake time and a bedtime that will allow you to get that much sleep, and then stick to it through thick and thin. No napping is allowed. Over time, sleep will hopefully even out, your circadian rhythms will return to normal, and you will experience more refreshing sleep.
- Check out the National Sleep Foundation’s Bedtime Calculator to get good times to go to bed and wake up.
Stimulus Control Instructions – A sleep behaviorist identifies factors that may be inhibiting good sleep (doing things other than sleeping in your bedroom, avoiding caffeine, etc.).
Relaxation training. In his experience, Dr. Friedberg has found that 30 minutes or more of relaxation exercises (focused breathing, progressive muscle relaxation, visualization exercises) help ME/CFS and FM patients sleep better and have more energy the next day.
Cognitive training aims to reduce thoughts that interfere with sleep. These include catastrophic thoughts around not getting a good night’s sleep, attempts to stop trying to get to sleep, practices to stop worrying about sleep.
Acceptance and Commitment Therapy– this rather Buddhist approach of non-judgmental acceptance of what life brings us has been called the “third wave of cognitive behavioral therapy”. It’s different from CBT-I in that it doesn’t attempt to change thoughts. Rather, the goal is to “just notice,” accept, and embrace your thoughts and feelings – especially negative ones – leaving one at peace and ready to take the appropriate actions. It can be summed up with this acronym: ACT. Accept your reactions and be present; Choose a valued direction; Take action.
Remaining passively awake. This practice involves actively letting go of fears and worries about going to sleep, as worrying about going to sleep will actually keep you up.
Paradoxical Intention – involves staying awake as long as you can (!), thereby removing the anxiety that keeps you awake.
Biofeedback – a biofeedback device can help reduce muscle tension and heart rate, and help you relax.
Sleep Drug Poll
Conclusions
Walker provides no magic bullets for improving sleep but does provide some practices that may help.
Walker’s goal was to wake up the general population about the importance of sleep, and the downsides of sleep drugs. (He does not acknowledge that sleep drugs can increase sleep time, etc. and have some other benefits. Nor does he address more severe sleep disorders.)
Where one feels an almost inevitable letdown are in his prescriptions for better sleep. His general recommendations for better sleep are just that – general recommendations. (Besides recommending CBT-I, he says little about it.)
On the other hand, Dr. Bateman has said that 80% of her patients do things that hurt their sleep, and any technique which ramps down the “fight-or-flight” response could be helpful for sleep. There’s clearly opportunity for improvement for some.
The many, many other things people try for sleep – from raising the head of one’s bed, to supplements, to cannabanoid products, to bio-rhythm devices, Walker leaves untouched. In short, Walker plays it safe and sticks to the information found in scientific journals.
Nor does he speculate about future drugs. He’s more interested in digital advances that could pinpoint optimum temperatures for sleep or light bulbs which could optimize wave-lengths for sleep. Rather surprisingly, he doesn’t hold sway on the efficacy of sleep tracking devices.
Still, Walker’s main point – that getting good sleep is an important part of health – is well made.
Health Rising’s ME/CFS and FM Sleep Series
Dedicated to Darden Burns
- Sleep Pt. I: Why We Sleep (and What Happens When We Don’t)
- Why We Sleep Pt II: Walker on the Dark Side of Sleeping Pills and a CBT That Works?
This is tough to read because I have been on Lunesta 3mg for the past two and half years and has been the only thing that has given me life and sleep so that I can work everyday. But I also get the gist of what he is saying. My goal has always been to ween off but my sleep has not gotten better as my other symptoms have declined over the years.. It’s the one thing that has truly been effected and is still to this day.. We really need more research in this area and willing to try any less intrusive sleeping aid because I do not want to get any dementia related diseases.. Don’t know if this article will help my anxiety for sure but do know that I don’t want to be on a medication. Frustrating……
I have had mild ME/CFS since 2017
I agree. It was quite frustrating to see Walker slam sleeping pills and then provide only a behavioral option. If you’re getting more refreshing sleep with Lunesta than without it (watch for a temporary rebound effect if you try to get off it) I would say that it’s helping.
The increased mortality risk was shocking – although even there because I don’t know how to read the figures it’s hard to know how much of an increase there was; i.e. how much more risk you or anyone else might actually be. The risk could be greatly increased overall but your individual risk could still be very low. I saw this in the increased risk of demential for FM – the risk was significantly increased but it translated to only a few extra cases overall.
Note that if you’re not having issues with depression/suicide – that is a major risk factor. Other risk factors circle around doing things while being groggy and getting into an accident or, if you’re a senior, having more falls. Since seniors take more sleep medications than anyone these surveys may be more weighted to them as well. Except for some studies on the risk for Alzheimer’s and a possible risk of cancer, it seems like it’s more depression, accidents and stuff like.
Thanks Cort! I am in my 40s. And I have taken the lunesta 3mg every night for two and a half years . I have not had suicide thoughts and maybe some depression but can’t link that to the pill. But to be honest I think I have had some memory issues. Though – as in a lot of us ME/CFS patients we also struggle with all sorts of cognitive issues. So again Can’t just blame the pill. I have also tried a more natural approach with Neuroscience products like Kavinace and Calm CP. They help but not overall sleep time.. It’s also Not easy to hear from a scientist or doctor that just Has not gone through what we have and know that this dysfunctional neurological disease has directly effected my sleep. When this all started for me it felt what seemed like a bomb went off in the back of my head, I literally could not sleep for a month in the beginning.. I somehow made it through while working.. Dont know how but I did. I really hope we all push For more emphasis in this area of research for us! I think It would benefit us all around and eager to see your next article.. Love and empathy to all my Me/CFS fibro family on here. Thanks again Cort for all you do!
Just watched a current interview with Dr Andrew weil who has now evolved past cannabis for sleep still advocates for the 4-7-8 breathing technique and now suggests kava as the ne plus ultra for sleep…. diazepams are darkly suggested as inducing demonic possession or worse.
I have been taking multiple sleep aids for several years without problems. Ambien, 10 mg time release melatonin, 25mg Benedryl, Tylenol 500mg and 2.5-5 mg of diazepam and GABA. I also put Bluetooth ear buds in and have a nighttime playlist, go to bed at 10PM, temp at 68 degrees and it is working well. And I am 70 years old. I don’t seem to have any problem other than short term memory loss but I don’t worry about it. I can still get Final Jeopardy sometimes even when all three contestants miss it. ???
I wouldn’t recommend this regimen but it’s working for me. I’ve had ME/CFS for almost 10 years. I worked in nursing until I was 63 in a busy PACU and Ambien made it possible. I had to quit when I was finally too tired to work anymore. Luckily my husband made enough to support us. I really feel for all of you who are unable to work and on disability.
I can’t handle any sleep scripts, not even many OTC “sleep” formulas. NOTHING with melatonin, as it greatly aggravates the chronic depression. The sleep meds I’ve tried in the past just made the brain fog much worse and I was so groggy the next day I was worthless. Cannabis and alcohol make me sleepy, but the cannabis again, aggravated the brain fog. I don’t like alcohol nor do I need the extra calories or other effects as I am pre-diabetic. (I can only tolerate it if it’s real sweet and fruity.) I’ve only tried CBD once, and didn’t like the brain fog again…I DO like Theanine Serene to help me relax. Have found a couple other mild herbal remedies, too, including NAPZ and “Silent Night”,
but even Valerian Root seems a bit strong for me.
Do you approve of 5htp and or tryptophan
5-HTP can trigger Dr. Phair’s metabolic trap. My labs showed I had it, after 5-HTP was prescribed for sleep The way out was 2 years of hyperbaric oxygen fine twice a week.
I didn’t find CBT insomnia treatment helpful. I work with a sleep specialist who teach it. I had an epiphany practicing the CBT and restricted sleep etc for 18 months. I…. don’t…go to work or take care of children. So what I stay up until 3 to 5 am. Sleep 4 to 5 hrs then bounce off the wall until a short nap. I don’t worry about my insomnia anymore. I do have good night sleep at times so I’m good.
If I understand this correctly, this is geared toward the general population and not specifically cfs ,correct? I do believe people in general should not jump to medication for sleep and should try alternatives first and be mindful of things that may affect their ability to sleep; however, I cannot speak for everyone else but I know for myself, cbt will not reproducibly help me sleep. I wish it would and have tried.
Even meds are not a guarantee for me. I even bought the ebb sleep device in hopes it would help me sleep, even occasionally, without medication, it didn’t. I’m not anxious, my mind doesn’t race and I do many of the things suggested like no caffeine after noon and not napping and have tried many of the cbt suggestions. My body just doesn’t switch to sleep, whatever the cfs reason.
After many decades of shunning sleep medications, I have realized that some sleep is better than being up all night and sleeping all day which totally throws my body rhythm off and DOES make me feel depressed. I have personally found ambien to be the cleanest of sleep medications with less next day impairment and use this 3 to 4 times a week at most and some weeks I don’t use any at all. Not because I sleep well the other days but because I do not want to become totally dependent on it and get rebound insomnia. The other days I use nothing I go to sleep late and wake up later than ideal.
I also try to rotate medications and sometimes use flexeril to sleep if I’m in pain or Advil pm/Benadryl if it is early enough to get out of my system by morning. I also sometimes use Lunesta but this like the last few medications I list I find I must take very early like 5-8 pm at latest in order for it to work optimally. But for me, while not perfect, I’ve found medication is the only way to increase my ability to sleep.
Yes, as the blog noted – this was a review of Mathew Walker’s book on sleep – not on ME/CFS.
Hi Michael,
Read your post and just wanted to mention that, for me, even one cup of coffee before noon was too much. Have retried many times (I love coffee!) but each time my deep sleep is greatly affected and I feel less rested as well. So I don’t drink coffee at all, bummer! I have a friend, healthy 67yr old, and he’s the same, any coffee at all even on rising and his next night of sleep is disturbed. Hope this helps.
The half-life of caffeine in the body is 5-6 hours which means a cuppa of coffee at noon will still leave 1/4 of the caffeine in the your system at midnight – depending, of course, on how you metabolize it. Bummer indeed.
My hackles are raised with CBT–at least for myself. My biggest problem is night sweats. Baking, drenching, soaking night sweats. Nothing has worked and I cannot take the one thing that does–estrogen.
I also have hyper-POTS which jolts me awake with adrenalin rushes and tachycardia. I cannot control those when I am unconscious and I haven’t found a doctor who wants to mess about trying to find some kind of off-label medication much less get a proper Dx! I also wake periodically from achalasia choking and swallowing difficulties.
Talking drugs, cannabis or melatonin do make me sleepy, but that’s not my problem. I have NO problem falling asleep but my body’s malfunctions are constantly waking me up.
Maybe I’m the odd one out, but my hackles are still standing on end to suggest CBT could solve my problems!
It was off-putting to see that for me as well. In other contexts where CBT was not used as the basis of configuring a disease as a psychological disorder or funded almost to the exception of everything else (in the UK) it’s probably viewed differently – as one of many potential helps.
I agree – with hyper-POTS and drenching night sweats – you are beyond Walker’s ideas.
As with everything – there is no one size fits all prescription. Some people will surely benefit from sleep hygiene and similar techniques while others will not. This is but one of a series of blogs which was launched by Darden’s tragic inability to sleep. Neither the drugs or the techniques mentioned in Walker’s book helped Darden. As the series goes on it will dig deeper into more alternatives.
Yes, the night sweats are so strange. I can throw off all the covers and it makes no difference. I have to get up and move around to stop whatever is happening. Then an hour or two later I wake up cold and add covers.
I used to have the sudden episodes of tachycardia until I figured out they were (for me, anyways) allergic reactions to peanuts and almonds.
Is sleep hygiene and magic CBT going to fix any of that? When the patient “fails to respond to the treatment” it is the patient’s fault. “Drugs are too risky” but study promoters pretend that correlation is causation. When one understands that most medical research is just marketing and everything in the media is about eyeballs and clicks, it is easier to ignore the endless parade of scare stories.
I have found Benedryl (diphenhydramine) and cannabis allows me to have somewhat close to “normal” sleep. I chose Benedryl because it crosses the blood-brain barrier and down-regulates mast cells near the hypothalamus, which regulates temperature, etc.
Maybe someone should find out what is going wrong with the hypothalamus, or why mast cells act like they are up-regulated? Nah, forget that. It is much easier to crank out another useless magic CBT study.
Well said! Berkeley is not the same place I attended back in the day..as you seem to be informed about MCAS which I have recently self diagnosed, do you have any suggestions re: reading sources. I’ve read Dr. Afrins book but in last few years I can’t find anything published other than diet hustle style stuff. Have you found any relief beyond antihistamines?
Walter, the best source I have found is the mastattack.org website. Also, I read abstracts on Pubmed and download the full papers from Sci-Hub. Trying to study medicine and be my own doctor was not how I planned to spend my Rust Years (“Golden Years” was always an illusion) but doctors will never help us.
Fifty more years and if CDC and NIH still exist they will still be maligning sick people and running a public relations program instead of a competent research program.
I have tried just about Everything for trying to get to sleep which only became a problem after I go M.E. 27 years ago. Have tried CBT several times, but not at all helpful for me. I really do not like being on prescription meds, but after not being able to fall asleep after one hour of my sleep/meditation sessions I find the only solution for me is to take a 10mg stilnox -zolpidem, and nibble just a quarter of it and let it dissolve in my mouth. If I wake to go to the toilet and cannot get back to sleep I then nibble another quarter, I really do not like having to take this, but having severe ME and POTS my health suffers even more without sleep. I would like to try and get off this medication and am most interested jimells in how much Benedryl and what sort of cannabis do you take. I would REALLY appreciate in letting me know this.
CBT has become yet another ‘shut up and go away’ pill, in far too many cases.
In other words, the medical establishment can’t be bothered to find out what the problem is (or they do know, but can’t be bothered to ‘go there’) and instead endlessly prescribe something suitable for the worried well (for whom, I have no doubt, CBT might have some efficacy). I can’t imagine the originators of CBT can be happy it’s being used this way.
In my opinion, knowingly, and stubbornly, prescribing something which proves to have no treatment value for that particular patient *in lieu of* something which could help alleviate their symptoms, and refusing to go beyond it, can be nothing more than a ‘go away, I can’t be bothered to listen and don’t want to treat people like you’ message. There is MORE than enough research to prove (yes, prove) that these are real physical illness conditions we struggle with. Any physician or medical body at this point who stubbornly sticks to this and disregards the evidence in front of his/her nose, is lazy, incompetent, or compromised.
Harsh words, but that’s how I’ve come to feel after decades of looking down their noses ‘treatment’ from medical professionals. I dread going for Dr’s appointments, and pretty much only go in to get prescription renewals (which, it seems are physicians bread and butter go-to appointment).
Yep! I went to see Dr Selsick in London (the hospital for integrated medicine! Hah) and was told to read a really naff and patronising book on CBT for insomnia. I was also supposed to attend a course in CBT but for practical reasons, could not have gone even if I’d wanted to. Which I did not. How could I even have sustained a whole long day of attention from early morning to afternoon? No one cared that my illness puts serious limitations on me.
I was so upset by the dismissal I spent months (even years) trying to stop myself from getting agitated every time I thought about it! I’ve been treated like drug seeking trash all my life, had prescriptions and harsh words thrown at me. I probably suffer from ptsd because of it, which could be making things worse, had I not finally started to sleep more and feel less raw thanks to all the yummy sleep I’m now getting through the late morning.
Hi Nancy, I don’t know how old you are but the night sweats make me think 40+, I’m 48. My gyno wanted me on estrogen but instead started DHEA after getting my levels tested. They were at the low end of normal, after much research I started taking a $5 supplement from Amazon against my endocrinologist and primary doc advice. I’ve had great improvement, joint pains gone within days, hair loss seems to be slowing. As a matter of fact I was trying to skip today for a break and sure enough aches and pains were gone. Helped with fatigue for 2 weeks but that didn’t last. I would look into it to as it balances all your hormones. I’m up to 50mg (started on 25) I may go up next week to see if the fatigue lifts as I am desperate. I’d say sleep seems better but the weird thing is that stimulants, currently Vyvanse, help me sleep. The days I skip them I’m up all night. Too bad they do nothing for my energy, could sleep all day/night on the highest dose. I also started taking l-theannine and melatonin, but they don’t do much on their own.
I went 10 years (1994) after contracting ME/CFS & Fibro (1984) with an average 2-3 hours of sleep a night. I saw an article in the paper about Ambien and asked the pain doctor I was going to if she’d prescribe it for me and she did. I took the first pill that night and for the first time in 10 years I got 6 hours of uninterrupted sleep. I was able to some nights get up to 8 hours of sleep.
Each doctor I went to after that questioned the use of ambien and I said “calmly” that since I was working that nobody had ever try to take that away from me. I asked how they thought they would do if they’d gone 10 years on 2-3 hours of sleep, without exception) and had to keep up a job and take care of a home.
Nobody “ever” fought me on the issue when I explained it that way. I’m now 80 and a while back my then primary said that it would be safer for me to move from 10mg to 5mg. I tried and I did quite well. At that point I wasn’t work so that made a difference anyway. If I had a bad night, which isn’t often, I’d just take a nap in the afternoon.
I developed chronic fatigue and insomnia at the same time, 20 years ago. Ambien has been the only sleep med that works, first few weeks I was a bit groggy waking but after that, had no sides other than waking up refreshed after 6 hours. Even in my pre fatigue days, I needed min 8-9. Now I’m in FL and my doctors refuse to prescribe it. The days I don’t take ADD meds I’m up all night.
Hey Cort, have I don’t something to raise your displeasure? I just got a notice that my comments are awaiting moderation. That hasn’t happened before…
I have nothing to do with the moderation queue. It has a mind of its own!
Interesting article. It would’ve benefitted me more to read what the writer had to say about getting restorative sleep from cannabis oil (not smoking cannabis). I would have liked to know the writers thoughts on that. I get zero sleep without it and when waking I have no brain fog or grogginess 90% of time. So having a bad case of chronic Lyme I think I am doing ok by using cannabis oil, but I am definitely getting dementia from which? See, dementia is a normal path for Chronic Lyme but the writers comments would’ve been helpful to know what he thinks of the ability to have restorative sleep using cannabis oil. I can’t tell if dementia is coming from non-restorative sleep or from the Borrelia, because I am asleep. ?
This blog finished up an overview of Walker’s book. Since Walker didn’t mention Cannabis it was not covered but it will be in future blogs. I use Cannabis when I need help with sleep and it works well!
Check out our Cannabis Review section – https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/cannabis-fibromyalgia/cannabis-fibromyalgia-chronic-fatigue-reviews/
This sounds like the work of somebody who doesn’t know what it’s really like to have severe chronic insomnia, and to have ME/CFS to boot, which responds to nothing better than a good night’s sleep. I will concede that there are problems and risks involved with sleep medication, but until somebody comes up with a real solution, it’s better than not sleeping. CFS insomnia is a different beast from insomnia in the general population (IMO), and therapies like CBT-I just aren’t enough. I take a number of pharmaceuticals to get a good night’s sleep, and I would hate to think what my life would be without them. I think it’s too easy to vilify sleep medication because of the potential side effects, but it’s not very helpful. Every drug has risks. I would rather live with the risks than not have the supreme relief and restoration that a good night’s sleep — medicated or not — brings to my life.
Well said Chris B! Totally different beast and with you on taking the risk but do hope we have some more healthier advancements in the sleep area with therapeutics. I know we will be the first population willing to try!
While I think that’s true the sicker you get I would be wary of assuming that just because you have ME/CFS you have something that’s not amenable to solutions that help other people. There are widely varying degrees of ME/CFS and, of course, people who are less ill have better luck with all sorts of treatments.
The one biological factor that’s been tied to poor sleep in ME/CFS is sympathetic nervous system activation (low HRV) which is what some of these techniques are designed to combat. It’s found in the deeper wave sleep patterns in ME/CFS.
https://pubmed.ncbi.nlm.nih.gov/31957647/?from_term=sleep+chronic+fatigue+syndrome+vollmer-conna&from_sort=date&from_pos=1
The authors called it “autonomic hypervigilance” which sounds similar to what Walker described regarding SNS activation and the difficulty getting a good sleep when it’s present. Given that it actually makes sense that some of these practices would work for some people with ME/CFS.
A similar problem exists in FM. Two of the three CBT-I FM studies I found had positive outcomes. Dr. Friedberg who has ME/CFS and has treated ME/CFS patients has reported that in his experience relaxation techniques before bed were helpful.
Even if they don’t do the complete job as they certainly wouldn’t in people with more severe sleep issues such as Nancy, these practices might still be able to help others. As Dr. Bateman reported 80% of her patients do things that hurt their sleep. If you consider that important immune boosts occur during the early stages of REM sleep, simply finding a way to get to bed earlier could help.
I’ve lain awake at night, as I’m sure many others have, desperately trying to get to sleep because of thoughts how blasted I was going to be the next day. That really didn’t help matters!
I agree he is too hard on sleep drugs.
Cort, I’d tried various things over the years to deal with the sympathetic activation, and none of the usual suspects helped – and many made it worse. Then I stumbled on to two things which helped immensely:
1) Pursed lip breathing:
I have MCAD, like so many of us on here, and at time found breathing difficult. I learned about ‘pursed lip breathing’ which is a technique taught to asthma and COPD patients. It *immediately* helps relax me, and I always start yawning after the 3rd or 4th breath (yawning is a sign you’re in parasympathetic mode). Using that technique allows me to fall asleep much faster and easier than any ‘control your thoughts’ technique I’ve tried.
“As you breathe in, imagine “smelling the flowers” and as you breathe out through pursed lips, imagine “cooling the soup on a spoon.” And please don’t blow your soup clear across the room. Just try to cool it off a little.”
https://www.pulmonarywellness.com/book/chapter-3-best-breathing-techniques/
Not sure why it’s so helpful for me, but it really works.
2) Liver massage:
I’ve started to develop NAFLD (yet another lovely gift from this disease), and have a lot of pain in my abdomen, which if unaddressed goes to my joints and then connective tissue. I discovered liver massage, which my husband now does regularly. When he does it enough to soften things, I *immediately feel like I can breathe and naturally start taking deep breaths, and usually yawning, and go into a relaxed and happy state.
https://www.youtube.com/watch?v=7_RmmAS8WPE
I know there is a connection there with the Vagus nerve, and at least one researcher (Dutch?) thinks the VN is one of the keys to MECFS. I don’t know if any of that is valid – I just know it has a powerful relaxing effect, if we can do it enough to get the inflammation knocked down.
Just throwing these out in case they’re of any benefit to others on here. Both of these have helped my sleep immensely, after years of wasting time with CBT & relaxation techniques.
I can’t help but notice that the suggested sleep techniques all start with the assumption that our anxious thoughts are creating our physical symptoms, instead of considering that our physical illness might be creating our anxious thoughts. Considering the disease burden we all carry, that’s a pretty major oversight.
Thank you for that all too often forgotten insight. We know that the SNS is overactive / the parasympathetic nervous system is underactive and we know that’s associated with poor sleep in ME/CFS. We also know that mood disorders are not associated with any of the biological findings in ME/CFS. So why do we kind of automatically assume anxious thoughts are the source of our physical symptoms instead of the known biological issues triggering them?
Fair enough, Cort. Mind-body approaches like CBT-I, DNRS, meditation, etc, can all help move the needle for some people, and certainly should not be dismissed out of hand. I’ve definitely benefited some from meditation, and plan to start working with DNRS soon. But I think, for me at least, it’s a both/and kind of scenario, not an either/or.
Thanks for getting this discussion going. Sleep is so important!
I wouldn’t be here if I hadn’t been allowed to take sleep medication. Even a 7 hour night was too short for me, and made me feel suicidal. I can cope with any kind of pain – and do – but not sleep deprivation. Sleep deprivation also lowers my tolerance for pain… I’d definitely say I’d be a very dead case if I hadn’t found ways of getting 9-10 hour sleep.
“Walker doesn’t believe these are ‘sleeping pills’ at all. They’re basically sedating agents or knock-out drugs.” I disagree with Walker here. Propofol, the drug Michael Jackson took for sleep, is a knock-out drug. I’ve taken it before minor surgery, and when I awoke I did not feel as if I had slept. When I awaken from sleeping pills, I do feel that I have slept.
Sometimes I wish we could go back and edit our responses. I realized that I typed ‘don’t’ rather than ‘done’ in one post and typed CBD rather than CBT in another.
Am I losing my mind? (From lack of sleep?)
I look forward to further discussion of this topic because it is so very important–not only sleep, but the QUALITY of sleep as well. I much appreciate all your informative blogs, even though in this case I disagree with the content (as apparently you did too).
I am an almost recovered ME sufferer. I use 12.5 mg of Benadryl. It does not come in such a low dosage, I have to cut myself the 25mg pill. Most nights it does the job. And it takes care of the multiple little allergies I have.
13th year of ME/CFS. My latest quality sleep program is: 3 mg or so of Zolpidem Tartrate (yep, I break 10 mg into thirds), 450 mg. Mugwort (Artemisa Annua) and 100 mg of L-Theanine. The zolpidem keeps me asleep. The Mugwort works to get to sleep, less anxiety and less muscle pain. L-Theanine to get to sleep, less anxiety. Even though my body does not like Valerian extract and Melatonin, I do take 1 capsule of a product called Luna off and on and it works for good dreams and sleep. Just hard to wake up, which is probably due to the Valerian Extract, in my case. Calms Forte works quite well to get to sleep too. In the a.m. I take L-Tyrozine 500 mg and Phosphatidfyl Serine 100 mg daily, and 50 mcg of Huperzine A every two or three days. I like and use CBD products, but not for sleep.
I feel like his research may be all well and good for an average person with some sleep issues but doesn’t really have much helpful insight for people with other chronic illnesses and chronic pain that either fully cause or exacerbate already existing sleep issues.
I’ve been sick with ME/CFS and fibromyalgia since I was 11 though with some unusual health things before that. I was already having insomnia at age 8-9 and it kept getting worse with every passing year but of course made a huge jump once the chronic pain and other symptoms started (yay painsomnia). No parent wants to put their kid on medication young so we tried everything non-medication we could for the sleep disorder for a long time (and continued even after I started sleep meds). I’ve done all the sleep hygiene stuff and it’s like a pin drop of help if any help at all. Eventually I had to use sleep aids just to get any sleep.
I have an incredibly severe case of insomnia. My body does not seem to follow the rule that “eventually you have to fall asleep at some point”. I regularly go 2-9 days without sleep even with sleep aids. I have been on 5 sleep meds and still very long periods without sleep. I got down to 2 sleep meds and about 5 years ago and tried to titrate off one (which also made some body pain and other symptoms a lot worse, so this med must be a double duty helper) and my parents made me call my doc to go back up on the med because I didn’t sleep for 9 days then had a night of sleep, rinse and repeat, then almost 3 weeks without any sleep and I was too sleep deprived to make the decision myself. I can tell you at what point of sleep deprivation emotions go haywire, then the hallucinations start, then muscles and nerves start twitching and spasming and then I can’t hardly move my body but I’m still awake. All of my symptoms get worse when I go without sleep for so long; migraines (which can require hospital intervention), body pain, muscle weakness, nausea, etc etc. All the sleep hygiene techniques in the world can’t touch this. Even sleep aids only help so much but when sleep deprivation is this severe it’s a hell of a lot more risky to not take the sleep aids.
Ouch. Yes, your sleep issues go beyond these techniques and you may be right regarding pain in general. Since as impaired sleep does result, as you note in increased pain sensitivity, CBT-I theoretically should be able to improve sleep.
Mirtazapine has been helpful for me. The hypnotics often had a rebound that was just a bad as the cure. Mirtazapine feels more natural. It’s no cure-all, but a hand tool in my box.
I struggle with disrupted sleep and at times insomnia, but can’t tolerate sleeping meds at all. Sleep hygiene practices, NLP to calm down flight or fight have really helped. But the med that really makes a difference when I’m struggling is an antihistamine (doxylamine). This calms down the buzzing in my head. This makes me suspect it is neurotransmitter issues (excess glutamate, histamine, and not enough GABA) causing the sleep disruption.
Have you tried either Lamictal (blocks glutamate) or Topamax (mimics GABA) ? Either may help but also have side effects that must be monitored. Topomax also helps for migraine prevention, and helps with weight loss as opposed to weight gain that most others similar meds can cause.
I’ll look into it, thanks Bryan! My neurological symptoms have been bad lately so it could be beneficial.
This expert seems similar to those that have data-proven research that CBT/Physical therapy/Tylenol are more beneficial for Chronic Pain than opiates. If you can sleep without Ambien, etc that is obviously better for you in general. But, if those medications work for you, then there is no reason to try to change other than pushing an agenda.
Plus, CBT/Sleep specialist evaluation/Psychiatric sessions are going to be out of most patient’s price range. This aspect is never considered by these “experts”.
Cort, after what is happening in the world today, I don’t trust the powers that we have been listening to for our care.
Judy Mikovits was right!!! We have XMRV, look up the info on Youtube. She uncovered pandoras box.
The Judy Mikovits information lately has been an eye-opener, hasn’t it! A friend of mine turned me on to Amazing Polly’s research (YouTube vids, @99freemind on Twitter), and she mentions Dr. Mikovits and Robert Kennedy Jr frequently.
Their information hasn’t supplied me with any concrete answers that can help me, but thanks to her I now listen to my body more and have learned to be skeptical of any medical advice unless I can vet it for myself through multiple sources. And thanks to Dr. Mikovits I’ve now started openly acknowledging that my MECFS was triggered by a vaccination (truth that I’ve learned to keep to myself over the years for fear of being labelled crazy or hostile). Well, not to my doctor’s of course; I’m not that crazy… 🙂
I’ve gotten FAR more, and much better, advice here on HealthRising to help my conditions than I ever got from any medical professional I’ve seen. Thank you to Cort for keeping this going, and making the world a better place for all of us who struggle.
Hi Anne,
I find Dr Stephanie Seneff very interesting on the subject of vaccinations and Glyphosate. You can find videos of her on You Tube.
I have PTSD and MECFS, and I was put on Imovane/Zopiclone (maximum dose) 25 years ago. It has literally been a life-saver for me, for both conditions. I truly believe if I hadn’t had this I would have been dead long before now.
What we all have is NOT garden-variety insomnia, in my opinion, and we shouldn’t be treated as if that’s the case. CBT is for the worried well (or more accurately the worried well with bad sleep practices). The only thing from that advice that has helped me (more my husband, actually, which helps me, is relaxing before bed and getting to sleep at a normal time).
Strangely, after finding several things – via suggestions from this forum – that have helped me alleviate my symptoms, I am now finally weaning myself off of my sleeping aid, and sleeping much better most days (except the days I’m in overwhelming pain, or having allergic reactions or high oxalates/uric acid). I am now down to 1/2 dose, and working on reducing that even further. Pill cutting gets difficult at that point.
One thing about using hot baths to reduce our night-time body temperature: I have always had abnormally low body temperature, so I’m not sure of the wisdom of trying to reduce it further. Someone on here once suggested using hot water bottles at night. Magic!!! Doing this has significantly reduced my pain and has allowed me to for the first time have a chance at sleeping deeply. I always use two, one at my feet, one at the level of my abdomen. I don’t need to have them on my body; I make them very hot and use them to warm up the bed beforehand, and leave them beside me while I sleep. I still wake up, even several times, but am able to go back to sleep most times. The times I forget makes sleep a real difficulty. Now if I’ve forgotten, my husband makes sure to set them up!
The other things that have made the difference is reducing oxalates, watching my histamine levels, and addressing my elevated uric acid levels before bed (all of which reduce pain). I’ve started having tart cherry juice and HistDao before bed (even though they aren’t supposed to work that way), and also a histamine safe probiotic. Between that and the hot water bottles, I’ve seen an astounding difference in my sleep.
I’m not sure if it’s directly related, but someone on here mentioned taking l-tyrosine in very small doses (as much as would stay after dipping the top of her finger in the powder), and that’s helped me a great deal. I feel my sleep has been better after that, for whatever that’s worth.
Not only have I been able to reduce my sleeping pills, I’m now starting to consider exercising after years of being severely disabled. Good sleep is critical; how we get to that isn’t as easy as CBT for those of us with so many physical symptoms.
What probiotic is histamine safe, and how is that determined?
I believe MCAS is causing my worsening food intolerances, maybe a safe probiotic would help?
Hi Birdie,
I initially used these pages to find something that worked for me:
– https://healinghistamine.com/best-probiotics-for-histamine-intolerance/
– https://healinghistamine.com/this-probiotic-strain-helps-fight-allergies-rather-than-causing-them/
The pages have changed since I used them (Yasmina used to update them frequently, and her family appears to have continued this since her death from breast cancer); these articles are slightly different than the ones I used initially to find a suitable strain. And she always listed the research papers &/or resources that she used as her sources. The first article used to list the bad probiotics to stay away from – not sure why they deleted that information, as that helped me a great deal.
However, using those first two articles (the originals) I found two sources which helped me (especially the first one):
1) Florababy: https://www.renewlife.com/ultimate-flora-baby-probiotic.html
2) Culturelle: https://www.culturelle.com/products/adult/digestive-health-probiotic-capsules
Both are found in most health stores. I have to micro-dose the Culturelle or I get constipation. The Florababy helped my pain immensely, and I take huge amounts at one time – with only positive benefits. Others on the list had no impact that I could tell – so you’ll have to experiment.
There is also this from Yasmina’s site – although I can’t attest to the information on this page: https://healinghistamine.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/
She also has some pages on histamine friendly ferments, which also helped me.
If you have worsening food intolerances, you’re probably dealing with more than just histamine issues, which is a ‘bucket too full’ syndrome, so just a word of caution: what might help you (or hurt you) today, might give a different reaction depending on what else is going on with your system/health. I
I hope this helps you. Best of luck with this. It isn’t an easy road, but gets better with experience.
It is hard to believe that huge study’s result that longer life requires sleep between 5.5 and 9 hours a night, no longer, no shorter. Presumably those were otherwise healthy people. When my body shifted from sleeping every time I laid down, in the early years, to no sleep at all for several days, and then “crash sleep”, I did not think I was long for this world, from the chaos that had entered my life, ruining nights and days both. For a while I worked with a sleep neurologist who taught me sleep hygiene and I learned it. Her view in non-medical terms, was that something was blocking me from sleeping, and whatever that something was, it was overwhelmed after 5 or so days, and then allowed me to sleep. She tried to figure out what the something might be, but never could figure that out.
When I did sleep, I was not getting all the stages of sleep, just the lightest sleep. No stage 4, the older term for when almost no electrical activity is recorded by an EEG, and not enough dream sleep / REM sleep. When I took two medications, doxepin elixir and 2 mg of clonazepam, then I experienced all the stages of sleep. There was still a problem, that my brain went to full awake for a second or two from every sleep stage all the time I slept, a couple hundred times in a sleep period. I have not been in a sleep lab in many years, but I assume it is the same now, as I will fully wake up if there is a lot of noise at one of those moments my brain jumps out of sleep up to awake for a second. That doctor retired and I found no one to replace her.
Even when I sleep as well as I can now, I never feel awake as I did before this disease, so that question in your survey seemed phrased for a degree of improvement that is unrealistic, at least for me. Having dreams and all the stages of sleep makes a huge difference, but I still have M.E., and it still messes with my brain in other ways.
My sleep issues include no way to predict when I will fall asleep. I tried many strategies to sleep at night, each night, but there is no cooperation from my body. So I sleep when I can, which means I sleep in the day sometimes and in the night other times, and part of the day or part of the night yet other times. My time from awake to the next sleep period can be 24 to 30 hours, not the 16 hours of being awake associated with 8 hours of sleep. That author is disappointing, not writing anything aimed to help me, and knocking down as evil the only medications that overcome, at least partly, whatever it is that flipped my body from lots of sleep, to no sleep. When the Institute of Medicine did their reviews a few years ago, they had sleep researchers who seemed to be more useful to M.E., with the first recognition that some people with M.E. do not have severe sleep problems as I have, and others have some other disruptions to easy, normal sleep. But I have not seen anything from the panel that was in videos shown back then.
Thanks for reviewing the book.
Sarah,
Please forgive if this question is irrelevant to your situation. Have you ever been investigated for MCAD/MCAS, or other allergic conditions? Do you even have problems with facial flushing? I ask because clonazepam is a mast cell stabilizer, and people with MCAS generally have a problem eliminating histamine (or can eliminate it normally but produce too much of it in the first place), which is one of the main chemicals that gives us a ‘buzz’ and keeps us awake.
Histamine problems, and oxalate problems too, are a ‘bucket too full’ situation, which makes them ridiculously hard to diagnose unless you know what you’re looking for. And they can aggravate other conditions you have in a way that confuses everything.
Dealing with my mast cell problems has greatly helped my sleep, which used to be a lot like yours, although not in that extreme. When I’ve had a particularly problematic exposure I take a small dose of clonazepam and a couple of HistDAOs. It blunts the edge of mast cell symptoms and allows me to sleep where nothing else will – not even my sleeping pills.
When my histamine levels were high my body JUST. COULD. NOT. SLEEP. No matter how tired I got. I’m sooo familiar with ‘crash sleep’.
I found a whole lot of relief by following, amongst other things, a low histamine diet AND a low oxalate diet (and low fodmap, sigh), and reducing my allergic load. https://healinghistamine.com/low-oxalate-low-histamine-diet-the-missing-link/
I was sent to a rheumatologist to get a CBD prescription for fibro pain, who instead asked me a lot of questions and then diagnosed me with MCAD. I had to go to two allergists to confirm the diagnosis, however. The first mocked me and accused me of being over-sensitive. Told me they’d check my tryptase levels but they were 100% positive they’d be negative, they promised. Luckily the 2nd checked my levels which turned out to be high. This was after being tested for pheochromocytoma (sp?), mastocytosis, and carcinoid after multiple hospitalizations years ago, and nobody picked this up.
I’ve had no help from the medical system since then, but figuring that out has been a game changer. I’m still very ill, but now have some good days where I can function for hours at a time – unheard of before. And I now know what to do to handle my symptoms. Well, usually… 🙂
BTW, my most perplexing symptom, that I didn’t connect with histamine issues at all, was an excessive daytime sleepiness (sort of) that resembled narcolepsy. But wasn’t really sleepiness. It was as if I couldn’t remain conscious and would fade in and out. I finally discovered pursed lip breathing, which has helped that considerably, and also helps me get to sleep at night. Now that I’ve sorted most of this out, I rarely get the narcolepsy-like episodes, and know what to do if they start up.
I’m glad you’ve gotten to a place where you’re accepting of your sleep schedule, but I hope you can find something that will help.
I can’t take melatonin either as it gives me brain fog, too!
One of the sleeping meds. mentioned gave me bizarre dreams as well reactions confirmed side effects by drs. and pts.
I have also been told I sleep walk and talk so I stay away from the sleep meds.
Cort, I’m not able to see the poll results. If there is some technical issue, would you mind posting them in a comment? Thank you!
Also, would you know if there have been any studies about prayer and sleep, &/or prayer and MECFS? There is a meditative aspect to prayer, and a perceived connection to a higher being could fit with Porges’ Polyvagal theory about using the body’s prioritization of the social engagement system for safety & relaxation.
Thanks for sharing that theory and technique info. and question, Anne??
I will take a peek as I usually get a good deep sleep doing the prayer relaxation videos on U tube with a soft headband with speakers in it and night mask??Sleep is very important for us and our healing??
You’re most welcome Lora. I’ll look into those videos – thanks for mentioning them. If you find anything I hope you’ll come back and post. I’d be most interested in what you find.
Unfortunately I can’t see the answers either. I’m keeping the poll open in hopes that they are in there somewhere, and we’ll be able to dig them out somehow.
Your “Meta-review” is not correct. There was a recent study done at UCSF that refuted the dangers of insomnia medications and in fact showed that falls in the elderly due to insomnia lead to more fractures and eventually early mortality.
Interesting. A link would be good. The meta-review reported that 24/36 studies and all 14 of the biggest ones found increased mortality rates while none found decreased mortality rates. A meta-review finding does not mean that no studies have been positive or at least not negative.
An elderly study is important, though, as the elderly take more sleep medications.
A 2016 review, though, stated this with regard to insomnia.
” The recommended doses objectively increase sleep little if at all, daytime performance is often made worse (not better) and the lack of general health benefits is commonly misrepresented in advertising. Treatments such as the cognitive behavioral treatment of insomnia and bright light treatment of circadian rhythm disorders offer safer and more effective alternative approaches to insomnia.”
https://pubmed.ncbi.nlm.nih.gov/27303633/?from_term=sleep+drug+mortality&from_page=2&from_pos=5
A lot of the elderly are frail and wobbly because of immobility. My gp has used the ‘findings’ regarding falls in the elderly as some kind of misguided attempt to warn me off (though I’m only 54). There is nothing to say that I will be frail when I’m old, as I have a much better exercise routine than most and intend to keep it that way till the end. I’d love never to hear such patronising and biased assumptions about people’s coping strategies again. Wouldn’t it be great if one was treated as a wise and responsible person when that is obviously the case?
Cort,
Just wanted to mention that on my ENT Dr.First Visit health history the question was there about if you sleep walk..?
I was told I did it one time as a child
That’s a new one! I don’t think I’ve ever been asked that before.
His health history questions as well as general questions covered alot I was very impressed at it being so thorough! I give it and him a ????
Such as Sleep Apnea, insomnia, bizarre dreams vs. reality when u wake up..upon waking
Teeth was mentioned..most excellent questionnaire I ever seen..
Calming down my fight/flight response, trying to keep to a regular routine of sleeping/eating etc (also avoiding food that triggers a reaction) and attempting to accept my life – just as it is – have been immensely helpful in improving my health and wellbeing. Because the quality of my sleep improved as a result.
I can see this quite clearly now. I also know that I am fortunate that I am able to make a difference to my health.
I have a training in counselling and psychotherapy (I don’t see clients anymore because I became too unwell a few years ago and for many other reasons).
But that does give me an advantage in being able to do a bit of DIY therapy at no cost (well not exactly – the training wasn’t cheap!)
I’ve been thinking about this over the last few weeks. Since having Glandular fever/Mono at 17, I had to work out a way of living that was sustainable and low energy. I was more or less successful at this over the subsequent years.
But over the last few years, when I became very unwell – I was pushed to my absolute limit. I strongly believe that the complete lack of understanding of my condition and situation, sent my sympathetic nervous system into overdrive, which then destroyed the quality of my sleep, resulting in all of my physical and mental health issues deteriorating further.
However I’ve managed to turn things around now. I actually felt completely at peace a few days ago, despite everything that’s going on around me.
I do still have health and life issues but for me, managing my stress levels, being careful of what I eat and sleeping well are really crucial elements of my ability to function.
This article does not apply to me. I am not a healthy person with sleep problems, I am a person with ME suffering from autonomic nervous system dysfunction. When I was blindsided with ME my sleep was destroyed. Like a switch was flipped, I was being cattle prodded awake literally every 5 to 10 minutes all night long. I had electric-like sensations jolting me awake constantly. I saw several sleep doctors, worked with a sleep behavioralist doc, did the sleep restriction therapy, light therapy, you name it, Nothing helped except medications. Sleep docs had me do things that worsened my sleep. I was a special. ed teacher and a high impact aerobics enthusiast, working out 3 times a week and was told I had to workout daily after work to “induce sleep”, (this was before I was diagnosed with ME/CFS 4 yrs later) This of course had the reverse effect grinding me into the ground, worsening my condition. I think all sleep docs need to look at Jared Younger’s work and see how much our neurological systems are out of wack, including the sleep centers in the brain.
One question, has anyone experience this…When I get a good night of sleep, often I have an increase in symptom intensity in the day, and when I have a bad night of sleep, often my symptom intensity is decreased in the day. So I have better daytime functioning on a crappy night of sleep and worse daytime functioning on what’s perceived as a good night of sleep. Go figure.
Hi Laura – I have had similar experiences with symptoms being less with less sleep and always wonder why..
Hi Laura,
I would be a great fan of Dr Jarred Younger as he focuses on the brain and that’s where I experience most of my issues. I seem to have trouble getting enough energy (glucose) to my brain. I don’t think I have so much of a problem with oxygen.
I also believe I have an issue with setting off inflammation in my brain.
I deal with this on a daily basis.
When I read your comment and question, what I wondered was whether with less sleep your adrenaline/cortisol levels increased?
I went through a time a few years ago, where I hardly slept – I was just skimming the surface and generally woke up totally wired at 4.30am or so.
I sort of felt ‘good’ apart from I found I couldn’t sustain it. This was partly fuelled by my issues with chocolate – it puts my blood pressure and heart rate up.
Anyway just a thought…
Hi Laura, Yes, same here. The (few) nights when I sleep through without multiple awakenings, I usually have a worse day.
I wondered if I have hypoxia when sleeping, so those times I don’t wake up I’m more oxygen deprived?
Birdie, could you get an oximeter and see whether you have hypoxia?
I wonder if the reverse effect is simply that the ANS is over activated after poor sleep, so you don’t register the effect until you finally get some real rest. I think to actually feel crappy is a healthier response than to be unnaturally alert and kind of a bit numb. When my muscles are really tense I feel nothing until I release the tension and my body gets to adjust. Just a thought. Don’t know if it makes sense.
I was just thinking isn’t it great to be able to access all this information and have the discussions – rather than trying to work everything out in isolation ? We are not alone!
Ideas upon the dreaded night sweats:
Part 1:
I think the answer may be here https://pubmed.ncbi.nlm.nih.gov/12817713/ with title “Uric Acid and Urea in Human Sweat”:
“The concentration of urea in the sweat is 22.2 mmol/L, which is 3.6 times that in serum.”
Why is this important? Urea is the waste product from detoxifying excess ammonia. Excess ammonia causes symptoms common to ME. From wikipedia(Hyperammonemia) (reconstruct the link yourself, I write it this way because WordPress blocks me if I use too many links):
“Hyperammonemia is a metabolic disturbance characterised by an excess of ammonia in the blood. It is a dangerous condition that may lead to brain injury and death.”
“Hyperammonemia is one of the metabolic derangements that contribute to hepatic encephalopathy, which can cause swelling of astrocytes and stimulation of NMDA-receptors in the brain. Overstimulation of NMDA-receptors induces excitotoxicity.”
Excitotoxicity is neurons firing so rapidely that they risk to depolarize rapidly up to the point of apoptosis or neuronal death. This goes hand in hand with thoughts and emotions being of overwhelming strength, exhausting the brain, causing sleeplessness or likely vivid nightmares too when finally falling asleep.
The frequent excitotoxicity would help explain why ME patients are so sensitive, are very prone to sensory overload and their brains light up like a Christmas tree under scanners with every single thought or action versus brain activity being more confined to specific regions in healthy controls. It sure is wasting plenty of energy too.
The damage caused by it could be more then enough to cause near permanent brain inflammation, reduce brain volume, change the white versus grey brain mass, and cerebral edema. For the latter see https://cjasn.asnjournals.org/content/11/10/1872 with title “The Role of RRT in Hyperammonemic Patients”:
“Hyperammonemia is an important cause of cerebral edema in both adults with liver failure and children with inborn errors of metabolism.”
When looking at wikipedia(cerebral edema) we see:
“Cerebral edema is excess accumulation of fluid in the intracellular or extracellular spaces of the brain. This typically causes impaired nerve function, increased pressure within the skull, and can eventually lead to direct compression of brain tissue and blood vessels.”
Now that describes plenty of ME too.
@dejurgen, regarding your link about ammonia and the gut as being a clue for night sweats, I did notice that the study was exclusively men.
Not to throw cold water (so to speak) on your ideas, as I certainly think you are offering them up to help, but I’m a menopausal woman and my night sweats began precisely after I stopped taking HRT. Hot flashes and night sweats, although they can be caused by other reasons, are one of the most commonly reported menopausal symptoms. They start with lack of estrogen, they stop when estrogen is added–generally. I’m not saying that your theory has no basis, but…I do think the influence of the gut has been underestimated. Regardless, please keep being creative in your thinking!
Hi Nancy,
Thanks for your comment and pointing me to things that are less in my field of experience as a male.
First, let me say I do rate the influence of the gut far higher then what these 4 parts suggest. I tried to focus here on the hypoxia and ammonia driven parts of ME as ME is a hug entangled web.
Second, I tried and find some clues to your reply. This is a first quick effort:
There seems to be quite an interlink between hypoxia and estrogen or lack thereof. See https://www.pnas.org/content/103/18/7165 with title
“Lung dysfunction causes systemic hypoxia in estrogen receptor β knockout (ERβ−/−) mice”
That seems to say that IF you (well, mice in the research) have lung dysfunction that it may only become troublesome when estrogen levels are dropping too low. Too low estrogen levels or too few estrogen receptors should be roughly comparable in effect.
This https://www.atsjournals.org/doi/pdf/10.1165/rcmb.2017-0167OC paper is a lot more complex, but again the title “Hypoxia Upregulates Estrogen Receptorbin Pulmonary ArteryEndothelial Cells in a HIF-1a–Dependent Manner” does point to a complex relation between hypoxia, HIF (a key chemical allowing us to better cope with hypoxia) and estrogen.
In this 4 part series I wrote, the ammonia link follows out of the hypoxia link. So problems with estrogen could increase hypoxia problems and those could increase ammonia and that in turn could increase sweats.
Many if’s and could’s I agree. Feel free to add and correct!
@NancyB., My being a woman and having had a complete hysterectomy at age 36 and unable to go on replacement hormones (for many months), I can so relate. A suggestion that worked pretty well for me was Red Clover. It also can help bone strength. I would take as many as 4 at a time. Most women I have told about this seem to benefit from it. Also Vitamin E helps. (And as a side note, progesterone gave me horrible flashes and sweats. And the only estrogen I could even slightly tolerate was a transdermal estriol. But I found the herb to work almost as well.)
But there can also be other things causing hot flashes too. For one Mast Cell degranulation. It will cause me terrible flashes and sweats, ear ringing, and face numbness. And you will not sleep when having them. And this is for guys and girls.
But also my treating a probable issue with ammonia, hypoxia and other things connected to dysfunction in these pathways, is seeming to make improvements. So I can say this can also apply to women. In the process of experimenting with a few supplements. But don’t have it completely worked out yet, to talk about.
Part 2 (note: part 1 waiting for moderation):
What could cause these supposed excessive ammonia levels? Partial / local hypoxia in the brain is a good candidate. With partial I mean that many areas or even most of the brain supplied by blood and oxygen by the smallest capillaries has too low blood flow to provide the brain reliable of sufficient oxygen.
Remember: several studies pointed to our RBC being stiff and inflexible. When you know that, in healthy people, the average diameter of these capillaries is smaller then the average diameter of RBC then you know the RBC have to be flexible to get squeezed easy enough through the capillaries. When you add the idea that ME patients tend to have plenty of vasoconstriction then these inflexible RBC need to be squeezed through smaller capillaries then is the case with healthy people.
To make things even worse, we have reduced blood volumes. Blood is a sort of liquid where the flow decreases more then what would happen with water if the speed of the flow decreases. With low blood volumes, this results into the finest capillaries taking a more then proportional hit in flow loss when the blood volume and flow is far below average.
Combine all of the above and the blood (and thus RBC) flow towards the brain cells near the smallest capillaries is likely but a fraction of what it is in healthy people. The flow through the big vessels should be far less affected. Still, this should lead to massive amounts of “microdots” of brain cells that are near starving for oxygen. Add to this our “over breathing” with low CO2 levels, and the oxygen release curves described by the wikipedia(Bohr_effect) say that RBC will cling on to their oxygen releasing it only slowly making things even worse.
Why would nights be that bad? Blood flow and distribution changes at night. When thinking about blood flow, we usually think about the difficulty to get blood to where it is needed, not so much how hard it is to remove it and get it back to the heart. However, with things like POTS we know that getting the blood back from the legs to the heart is quite a bit more difficult then getting it from the heart to the legs. Gravity does the latter.
With the head, there isn’t any trouble is there for it to flow back? The difficulty is to pump it to the higher head and then gravity will bring it back to the heart right? Maybe, when standing or sitting. When lying flat or sleeping things are different. Flow towards the brain then is easy. Gravity does not interfere in making that part difficult at night. But the blood flowing back to the heart lacks the support of gravity now. Things are reversed!
That does two things: it decreases blood flow to the brain at night and further increases brain edema as the ratio inflow versus drainage is decreased. That may be why some people get help with sleeping with the head elevated. I find it taxing to my back, so I prefer to get up and walk a bit around to restore blood flow for a moment.
@dejurgen, thinking about your hypothesis for night sweats, urea, ammonia, hypoxia and such, I ran across this article; https://www.ascopost.com/issues/january-25-2019/oxybutynin-for-managing-hot-flashes/
Oxybutnin is used for ‘over active bladder’ and so, there seems to be some connection between urine and hot flashes although I’m not sure what. I’m not sure what happens to urine that sits for a while (in the body), but when I clean my cat boxes, it sure does smell like ammonia! 😉
I’m not eligible for it and anyway, the side effect list is not encouraging. Same with all the other Rx meds which are used to try to treat hot flashes. Lots of side effects and modest improvement. Bad news for me who is ultra sensitive to meds.
Regarding hypoxia, when ever I am at the docs (a lot!) my oxygen saturation is almost always near 100%.
I don’t know–keep asking! The world needs more curious minds like yours!
@issie, thank you for your suggestions. I haven’t taken Red Clover in ages and don’t seem to recall any noticeable changes. My oncology NP recommended natural apple cider vinegar (didn’t work).
I know we both have EDS, but as far as I can tell my susceptibility to MCAS is on the low side–not non-existent, but low. I don’t seem to have any overt food sensitivities either–but then again I’m mostly a fruit and vegetable eater.
I suspect that there will be multiple variables contributing to hot flashes as well as fatigue…so complex! Too complex!
Part 3:
But why would that cause excessive blood ammonia levels?
When (parts of the body) not have enough oxygen, they tend to increase the ratio of anaerobic functioning versus aerobic functioning. When talking about anaerobic functioning most people think about wikipedia(Glycolysis) where glucose is converted to pyruvate and then to lactate without oxygen but producing only a small amount of ATP.
That both depletes glucose quickly and creates plenty of pyruvate and lactate. If the amount of anaerobic functioning increases too much, the liver must help and detox both excess pyruvate and lactate. That can be done by the wikipedia(Cori_cycle). The liver converts these waste products back to much needed glucose during prolonged increased partial hypoxia.
The downside: For every ATP gained in the hypoxic tissue, the liver has to spent three ATP in order to recycle the waste back to glucose. And that does consume oxygen. About three times (plus some extra overhead) as much oxygen as when the hypoxic tissue would have been able to use glucose aerobically! So that increases breathing needs a lot.
The downside associated with that: The lungs and mainly liver need to work a lot harder. One way to get that done is to flood the body with (nor-)adrenaline as that is both a bronchodilator and increases blood flow to the liver and vital tissues like the brain a lot. That in effect can increase a fight-or-flight response. In addition a frequent increase in (nor)-adrenaline does decrease blood flow to “less urgent” tissue like the entire digestive track, decreasing both quality of digestion and repairing of damage in the digestive track.
Back to the issue at hand, there are more ways then that for anaerobic energy production. The brain has a large store of glutamate and glutamine. There, under hypoxic conditions, glucose can be converted to pyruvate too. Part of it can be converted to lactate in order to decrease the excess of pyruvate (and NADH). Another part of the produced pyruvate can be removed by using it to convert L-glutamate and pyruvate to α-ketoglutarate and L-alanine.
That has several advantages. If both detoxification by producing lactic acid and alanine are combined, lactic acid levels near the hypoxic brain cells wont increase as rapidly.
But there are other benefits. α-ketoglutarate helps protect the brain against ROS damage quite well and helps neuronal survival. α-ketoglutarate is a “free” by-product of this reaction.
Then there is maybe the main advantage:
When there is a lack of energy / ATP, glutamate excitotoxicity becomes a great risk. Looking at wikipedia(Excitotoxicity) can create a whole slew of very nasty diseases like ALS, PD, AD… so that has to be avoided at all cost.
Glutamate is used as an important neurotransmitter and each time a signal is given between different neurons, glutamate is released in the “synaptic cleft”. Some is lost and enters the space in between neurons. This “extracellular glutamate” is firing unrelated neurons when accumulating. This cause more stray thoughts, emotions and energy use. But during partial hypoxia oxygen and energy / ATP is already scarce.
Therefore, the brain “continually mops” the excess extracellular glutamate up. This is done via the use of transporters and costs… …ATP that the brain is short of during hypoxia. If ATP is too short, the glutamate transporters can release plenty of glutamate from the neurons and astrocites rather then “mopping it up”. What follows is a devastating neurotoxic glutamate storm. This is to be avoided at all cost.
Now this wikipedia(Cahill_cycle) happens to conveniently convert glutamate and pyruvate to useful α-ketoglutarate and “waste product” L-alanine. This L-alanine has to be converted to pyruvate (that will then be converted to useful glucose) and ammonia / urea by the liver.
This process thus is an important process to prevent a toxic glutamate storm in the brain during hypoxia. But it again comes at a cost: a strong increase in ammonia / urea in the blood and a high energy cost. Again, for each ATP produced in the hypoxic brain this way plenty of ATP have to be spent in the liver. This creates an even greater need for blood and oxygen to the liver.
Result: even more need for (nor-adrenaline) and excessive breathing.
Note: the rapid consumption of protein this way may help explain why several researchers found ME patients to be depleted from many proteins.
So we finaly come back to the starting point: why these excessive night sweats? Maybe due to partial hypoxia (in the brain) and the rapid urea / ammonia production produced by a mechanism to protect the brain from permanent massive damage? And sweating removing urea when all else fails?
Part 4:
The brain, gut and ammonia / urea:
In ME both the brain and the gut are a topic of much discussion. There also seems to be more then a single mutual influencing of them in this disease.
In the previous parts one and only one of them has been mentioned already: this hypoxia and the need to detoxify it’s effects reducing blood flow to the digestive track too often. This decreases both the efficiency of digestion, reducing food absorption and leaving more food in the digestive track too long partially undigested, and decreasing the energy and materials to repair damage in the digestive track.
There is also the reverse side. Ammonia or more precisely urea happens to be dominantly removed from the healthy body not by the urine but by the gut. Urea is added to the bile at the start of the gut. If all goes well, sufficient amounts of it get excreted in the stool.
Many gut bacteria, both good and bad, have enzymes to decompose this urea back to ammonia. They can then use it to create basic proteins for their own needs. When the large bowel however hasn’t enough weak acids like lactic acid, acetic acid and butyric acid then much of this ammonia gets reabsorbed by the gut (these weak acids prevent them from passing the gut barrier easily) and thus gets back into the blood stream.
Now the problem is that these weak acids are produced in sufficient quantity if you have a healthy gut microbiome. So if you haven’t got that, much of the (expensively) detoxified ammonia gets reabsorbed by the gut. That has the following disadvantages:
* It risks to increase blood ammonia levels to toxic levels.
* It costs plenty of energy to detoxify it again and puts a high load on the liver potentially reducing its ability to detoxify other toxins.
* It increases brain edema, pressure and the ability to fully use this Cahil cycle to protect the brain during partial hypoxia.
And so, we are back at the beginning of a vicious circle. All of it producing plenty of ROS and inflammation entrenches the RBC being stiff, the smallest capillaries being too constricted and the immune system derailed.
Important note: Thanks sooooo much for your help Issie! Without it, I would not have gotten anywhere near these new insights!
Interesting discussion and I have to confess I have not read all the comments. I have had ME for over 40 years and I initially very disturbed sleep. In the mid 1990s Dr Paul Cheney wrote an article on the use of a low dose of clonazepam to help with sleep in ME/CFS. My ME specialist here in Australia put me on it. I have never increased the dose only ever slightly decreased it if I wish to. My sleep pattern has been good for a very long time and as I also wear a fitbit it tracks my sleep and I find my typical pattern is in the normal range despite also having regular night sweats which after so many years I accept as part of me. I get angry when people like this Dr Walker put us all into one basket and knock medication. I could not have continued the way my sleep disturbance was. I also meditate and practice deep breathing but those things alone were not sufficient. I have never been depressed either just grateful that I can manage my symptoms of this baffling illness
Some of you may find this very interesting. A different approach to MCAS in trying to reset histamine receptors. Not by blocking histamine with blockers, but moderating how much is released and utilizing its benefits and it turning on receptors that help the immune system.
Dejurgen also commented on the link I’ll list, as to some of the research he and I have been doing in regard to it.
Histamine is of benefit to the body. It is needed and necessary. We just don’t want too much.
https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/#post-36599
Thanks Dejurgen for the hard work and using so much energy to research and put puzzle pieces together and get the science connected, to figure this all out.
So many of us may have wonky genes and also issues with methylation that may be causing some of these problems. Sorting that there is a problem leads to solutions. With me knowing I have CBS mutations and issues processing sulfur and knowing the pathways that goes through is very helpful in what i do and even my diet. Also with potential issues of ammonia as a result from this and this pathway having breaks in the cycle. Seeing how toxic that can be to the body and the brain could most definitely contribute to our lack of wellness. Not to mention our brain fog issues.
Then there are issues with glutamate and over stimulation caused by such and possibly a big cause of some of our autonomic system dysfunctions. Getting glutamate in proper ratio another bit of trial and error. Too much or we get the fight or flight feelings in motion. Sleep, NOT to happen with sympathetic system in overdrive.
And the biggie, for probably most of us, is hypoxia. Lack of oxygen going to where it needs to go. For us POTS people, our heart and head. But it’s even more than that as it needs to go to muscles and cells. With faulty issues of vasoconstriction and/or red blood cells being inflexible, there can be a problem. And not to mention issues with CO2 and that being needed to carry it out of blood into those places and getting the balance right on that one. I’m trying to learn new ways to breathe and trying to get my body to produce more red blood cells and get used to more CO2 to carry the oxygen better. Hopefully, changing a need of hyperventilating, that many of us seem to do. I found my sleep study and my oxygen went down in the 70s when I was asleep and barely got up in the 90s even with a CPAP. So that didn’t fix hypoxia.
Dejurgen has presented several things that can be connected to sleep issues and disturbance.
*Hypoxia and lack of O2
*Ammonia issues that need to be detoxed from the brain especially (and body wide)
*Problems with glutamate connected to these things and possibly causing issues with fight or flight feelings and autonomic nervous system dysfunction
*Blood flow issues connected to problems with vasoconstriction and blood flow problems
*Issues with brain detox in a sleeping position at night
I’m sure there is more…….
I will also add to this, and others have noted above, issues with mast cell degranulation. Mast cells don’t degranulate while sleeping. But when not sleeping and all this other “stuff” going on in our body, plenty of things trigger a mast cell response. I have/had severe MCAS and am trying to moderate my receptors. I feel histamine may be a type of compensation. Believe it or not, we found papers indicating it could help with ammonia detox. We will try to present some of this later. Still experimenting on ourselves and trying to get what we do more stable and understand the science of WHY. We are getting closer.
Thanks Dejurgen, beautiful presentation. People you should see all the papers we have read and the hard science that he presented very simply, compared to what we read.
Issie
Dr. Cheney also prescribed .5 mg. of clonazepam for me and I took it many years. The problem came when I could no longer see Dr. C. Fortunately, I had decided to try to wean myself off clonzepam. This is no small task. It took me six months to reduce my dose to l/4 of a .5 mg. tablet. My concern was what would happen if I couldn’t find a doctor to prescribe clonazepam. This is not a drug you can stop suddenly and that makes me very concerned. I do think it helps with sleep and other problems.
Hi Betty,
May I ask where you live?
Thx, Wendy
Cort, I hope we can reopen the conversation about XMRV (xenotropic murine leukemia virus)
Sleeping pills really don’t matter when we are walking around with a mutated DNA sequence.
Why is Judy Mikovits being banned from all social media platforms? Why was she arrested without cause?
Why did Fauci have a gag order on her for 5 years after her findings?
https://londonreal.tv/responding-to-criticism-surrounding-my-viral-documentary-the-plandemic-dr-judy-mikovits/
Hi Cort,
Thanks for doing this series. Besides PEM, sleep has been my #1 issue since my ME relapse 3 years ago, so it’s much appreciated.
Like many others who’ve commented, and as the poll results suggest, I find Walker’s attitude a tough “pill” to swallow. I’ve tried many ME/CFS treatments over the years. Nothing has made a a distinct improvement to my overall functioning, except sleeping pills! I believe that Trazodone was the single most important factor in my partial recovery from my original ME onset. And now, in my relapsed state, I feel most refreshed when I take a Clonazepam-Doxepin combo. This “rescue combo”, as I call it, is often the only thing that can’t snap me out of a prolonged wired and tired state.
I have two questions for you, Cort.
1) Does Walker distinguish between which sleeping pills are better/worse? Are anti-depressant sedatives better than strictly hypnotic drugs? My understanding and experience is that tricyclics, for instance, actually improve sleep quality and quantity with minimal side effects. Are Benzos better than “Z drugs”? My sleep specialist, for example, recommend Clonazepam over Zoplicloze and Zolpidem, and this advice has proven very helpful. Finally, what about rotating sleep drugs to prevent tolerance and withdraws? Might this mitigate some of the negative effects Walker mentions?
2) Do you think that the studies linking too much sleep and mortality apply to ME sufferers? When I’m in a crash, those 10-13 hour sleeps feel absolutely necessary. When I can’t sleep in, I seem to take longer to recover. More significantly, I often find that I sleep worse the next night if I get under 9 hours the previous night. Perhaps we’re in a category so distinct that general rules just don’t apply?
Thanks.
Sorry Cort, one more:
3) Will there be a future post on sleep supplements? The stuff on the role of lowered core body temperature reminded me of Glycine supplements, which can potentially help your body do this when taken before bed.
Hi David,
I am seeking a cfs/me specialist,
May I ask where u live ? Thx , wendy
Very nice, CBT is a great therapy for sure!
I’m not sure I trust Walker, his book has been criticised for scientific errors and seems he over-inflates the effects of not sleeping, see:-
https://guzey.com/books/why-we-sleep/
Also I think the only concerns of sleeping tablets are dependence and increase in cancer risk, and they aren’t quite as bad as made out here as a lot of mortality is prob older adults and car accidents
I have IBS which comes and goes. On the first morning a flare happens my gut feels alright while I’m sleeping or when I wake up, but I notice that I have had disturbed shortened sleep and not remembering dreams.
Whereas in the non-flare periods my sleep is normal.
That showed me the body is aware something not right is taking place, and that unease or alert going on disturbs sleep. The sympathetic nervous system is activated.
CBT and ‘sleep hygiene’ couldn’t touch a thing like that.
It showed me that something which is dysfunctioning in the body influences sleep negatively even if we aren’t conscious of it at the time.
I’ve been on Ambien for close to twenty years and it works great for me. It’s easy to manage your body’s tolerance so I use the same 10 mg prescription since day 1. Matt’s discussion is similar to many doctors, get good sleep, get good exercise, reduce your stress. Most of us aren’t making over $500k a year working less than 40 hrs a week. Life is stressful – getting 4 hours of sleep a night has big impacts on your mental abilities the next day. Using meds to get 6.5 hours is such a better recipe for success. Going to sleep same time and waking up same time are not an issue for me – its staying asleep. The strategies aren’t helpful for staying asleep – but meds are. Don’t discourage meds for all people with sleep issues.
I agree! I think Matt is a tad out of touch…