In 2015 I detailed the best sleep aids for ME according to ME/CFS specialists and my own experiences. Since this date I have been on a rollercoaster journey in search of some much needed refreshing sleep. This article will cover my travails as well as what I have since learnt regarding sleep studies, Restless Legs Syndrome, Upper Airways Resistance Syndrome, good sleep hygiene and sleep supplements.
Sleep Studies for ME
Dr. Klimas, Dr. Bateman and Dr. Levine all recommend that sleep disturbed ME/CFS patients get a sleep study performed. Sleep studies fall into two categories; firstly those performed in a specialist sleep laboratory, most often in a hospital room and secondly at home sleep studies. Sleep laboratory studies involve an array of sensors being placed all over the body and a glut of gadgets. They occur overnight- most commonly in a hospital bed and can potentially identify a range of sleep disorders from: sleep apnoea, upper airways resistance syndrome, restless legs syndrome, insomnia, sleepwalking, REM disorders to other sleep issues. Your heart rate, oxygen levels (determined through a sensor, not a needle), eye movements, breathing rates, leg and arm movements and snoring are all monitored as well as the different stages and lengths of your sleep cycle. A narcolepsy test commonly requires that patients complete the in-laboratory sleep study and then subsequently stay for the next day testing process.
Contrastingly to an in-laboratory sleep study, a home sleep study takes place in the comfort of your bed and has a smaller scope of instruments attached to you. It’s primarily used to diagnose sleep apnoea. The advantage of this sleep study is that people tend to sleep more comfortably in their own familiar bed as opposed to a foreign bed and surroundings of a hospital/sleep lab. The downside of this type of sleep study is the lack of scope of instruments used means less sleep disorders are diagnosable.
Sleep apnoea and some other similar sleep disorders have a large overlap of CFS symptoms (minus post-exertional malaise). Snoring, a large neck, being overweight, nasal obstruction and unrefreshing sleep are just some of the signs. Some ME patients may have ME and a comorbid or independent sleep disorder that is making their illness even more challenging. Overall, sleep studies find that around 1 in 5 ‘CFS’ patients actually have a sleep disorder causing their symptoms. These sleep disorders can be readily treated.
My Sleep Study Experience
At the beginning of 2018, I asked my doctor for a sleep study and cautioned them that I didn’t believe I would sleep during the night due to the array of instruments attached to me, the new environment and my typical poor sleep. My doctor responded that most people say this and actually sleep quite well during the study. I arrived at a hospital for an in-laboratory sleep study and what followed was the worst night of my life. I couldn’t sleep, couldn’t move due to the number of zany instruments attached to my body and was quite pained by the experience. I vowed never to get another sleep study done. As a patient with severe ME who barely slept during the night- I considered the experience as torturous. My results indicated that I slept for 8 minutes during the entire night and that I had restless legs syndrome. My sleep specialist requested that I get another sleep study done as I hadn’t achieved a sufficient amount of sleep. I reluctantly agreed under the proviso that I take sleeping tablets.
My second sleep study involved about 4 hours worth of sleep (typically they require about 2 hours to get sufficient data). The results didn’t show too many abnormalities but suggested that I might have sleep apnoea but this conclusion was nebulous. I went to a new sleep specialist and they wanted me to get another sleep study done, this time testing for narcolepsy. I ended up going to a third sleep specialist who said that the two sleep studies I had undertaken were done by a dubious company who go through thousands of patients a night and the results were meaningless. He instructed me to get another sleep study done. After I initially vowed to never get a second sleep study done, I was going to undertake my third! I told the specialist that I would need to take sleep tablets and he agreed.
The sleep technician at this sleep study centre told me that per year they have around 1000 patients and 2 or 3 that they don’t get enough sleep from to get results. This highlighted to me the breadth and rarity of my sleep issues. My results from this third study said “Features consistent with Upper Airways Resistance Syndrome-like arousals. Limb movement. Sleep fragmentation from spontaneous, respiratory and limb causes.” I will discuss Upper Airways Resistance Syndrome and Restless Legs Syndrome in the next two sections.
Upper Airways Resistance Syndrome
Upper Airways Resistance Syndrome (UARS) is similar to sleep apnoea. UARS occurs when the upper airways narrow causing reduced airflow then subsequently deeper breathing which wakes the patient (often they are unaware of this waking). It causes unrefreshing sleep and fatigue. Treatment involves CPAP therapy through a mask that is similarly used in treating sleep apnoea, nasal steroids, good sleep hygiene, oral appliances and surgery depending on the severity. Dr. Teitelbaum writes briefly about UARS in his books however the most comprehensive guide can be found here: http://www.uarsrelief.com/uarsreliefebook.pdf
My Experience with Treating UARS
I tried CPAP therapy with a mask attached to my face delivering a steady supply of air into the nostrils. This treatment was troublesome as my poor sleep in tandem with the peculiar mask conspired to make it difficult for me to fall asleep and stay asleep. After a month of trying CPAP, my specialist said that it wasn’t working and that it’s quite common for patients not to tolerate this treatment. Reducing nasal congestion is another angle to treat UARS. I tried a nasal dilator called Nozovent that is essentially a small piece of plastic that expands the nasal passages. I experienced slightly more refreshing sleep for a week but this wore off. Some people use nasal strips for UARS that cover the bridge of the nose. I’ve been using these permanently for 8 years and continue to use them. I tried an antihistamine before sleep to reduce congestion yet this caused me a great amount of next-day fatigue. I also incorporated a nasal irrigation device into my daily routine to no avail. It was time to try and treat the Restless Legs Syndrome instead.
Restless Legs Syndrome
Restless Legs Syndrome (RLS) is a disorder often occurring whilst the patient is at rest that entails an unpleasant feeling in the legs and sometimes arms. This limb movement can result in sleep disturbance. RLS may be the result of certain medical conditions or it may be a stand-alone symptom. Iron deficiency is the cause of around 20% of RLS cases. If an RLS patient’s ferritin level is below 100ng/ml it is often recommended that they take an iron supplement despite this ferritin level being considered as normal by laboratory standards. Often in these patients the RLS will then be cured.
Several prescription drugs are sometimes used to treat RLS. Gabapentin (I’ve written more extensively about Gabapentin as an ME treatment here) may act as a calcium channel blocker. Pramipexole is another treatment, which is a dopamine agonist belonging to the non-ergoline class. Clonazepam (a benzodiazepine) which is a polarising ME treatment is another possible RLS treatment. I’ve written more about Clonazepam here. Levodopa is another drug sometimes used to treat RLS. This treatment is an amino acid that can cross the blood-brain barrier and thus can increase dopamine levels. In general, drugs used to treat Parkinson’s disease are abundantly used to treat RLS.
My Experience with RLS Treatments
I began taking Gabapentin several years ago and it slightly improved my sleep yet my RLS remained untouched. Its effects gradually wore off and thus I had to keep increasing the dosage. Eventually I stopped the treatment. I have tried Clonazepam on two occasions. A dosage as small as 1/8th of a 0.5mg tablet caused me to experience next day sedation. I have tried Pramipexole however 1/8th of a 0.25mg tablet caused me insomnia. I am simply unable to sleep and feel jittery if I take this small dosage. Over the past 3 years I have become more sensitive to medications in general.
I have been using a weighted blanket for the past few months and I believe this has reduced some of my RLS intensity although my subjective sleep quality remains just as poor. Weighted blankets are thought to work by applying deep and firm pressure on the body. One study tracked weighted blanket usage amongst insomniacs and 4 out of 5 subjects preferred the weighted blanket claiming that it made them fall asleep easier and feel more refreshed. These patients also, based on sleep testing, slept for a longer period and spent less time awake during the night. Other studies have found weighted blankets help those with ADHD sleep. Another study found that autism patients preferred the weighted blanket to their normal blanket.
General Sleep Tips
There are some general tips I have tried to adopt with the goal of improving my sleep and I will elaborate on these here. It is important to have a regular bedtime and stick to this time. Invest in a quality mattress. You spend a large portion of your life on a mattress so it’s worth buying a quality one. Avoid caffeine or alcohol near bed time. Try relaxation exercises before bed and whilst trying to fall asleep. Avoid blue light from electronic devices in the hours leading up to sleep. This can be achieved by either not using the devices or turning a blue light filter on in these devices (this filter already exists in some items such as iPhones) or install blue light filters. Florescent light-bulbs and LED lights are also blue light offenders. Blue light suppresses production of melatonin. According to a study, sniffing lavender oil before trying to sleep for 2 minutes at 3x 10 minute intervals results in deeper sleep and subjects feeling more vigorous in the morning.
There are some techniques that can help people fall asleep faster or go back to sleep quicker if they have woken up during the night. These include the following-
When trying to sleep, try a technique that the US military uses. This entails:
- Relax the muscles around your face remembering to relax your jaw, tongue and area around the eyes.
- Drop your shoulders as low as they will go followed by the upper part of your arms then the lower part of your arms.
- Take a breath out and relax your chest then legs from the waist downwards.
- Try to clear your mind and relax for 10 seconds then think about either:
Lying within a canoe on a still lake with a blue sky above you and water beneath your canoe.
Lying within a hammock that is in a pitch black room.
After practising these techniques for several weeks, they should become more effective.
Another technique involves the 4-7-8 breathing method.
- Firstly place the very tip of your tongue behind your upper front teeth.
- Exhale through your mouth whilst making a “whoosh” sound.
- Close your mouth and inhale through your nostrils for a period of 4 seconds.
- Hold your breath for 7 seconds.
- Exhale through your mouth whilst making a “whoosh” sound for 8 seconds.
- Repeat the cycle 3 more times.
A study found that insomniacs who pictured an environment that makes them feel both calm and happy (e.g. a beach or waterfall) fell asleep 20 minutes faster on average than other insomniacs.
Progressively relaxing parts of your body is a technique recommended by the National Sleep Foundation. The process involves tensing your muscles starting with your toes, for 5 seconds and then relaxing them for 30 seconds. Work your way from your toes up to your head.
Sleep Aids:
I have written about what many ME/CFS specialists recommend as sleep aids here. There are some other sleep aids that are available over the counter and are alternatives to prescription treatments.
Glycine: Some people describe glycine as a miracle sleep supplement. A protocol sometimes used is to start at 500mg and work up to a maximum dosage of 2-3 grams. Studies have shown that glycine may reduce insomnia, improve sleep quality and promote restful sleep, increase the efficiency of sleep and help make the taker fall asleep quicker. It can also lower body temperature and increase serotonin levels.
I tried this treatment last year but experienced insomnia and started to feel slightly delirious.
L-theanine: This supplement is an amino acid that is found in tea leaves. L-theanine increases levels of serotonin, dopamine and GABA and reduces levels of excitatory brain chemicals. Another facet of l-theanine is its ability to promote alpha brain waves. A study found that it helped improve the sleep quality of boys with ADHD. Doses used tend to be in the 100mg-400mg range. Some people have used 1-2 grams of l-theanine.
My experience with this supplement was fairly positive in terms of keeping me asleep however I eventually stopped taking l-theanine.
Ashwagandha: This Indian herb has been shown to modulate and lower cortisol levels and improve GABA levels. A study found that in mice, Ashwagandha improved sleep. Doses between 300mg and 600mg are sometimes used for sleep. It may also increase T4 levels.
I haven’t tried this treatment yet but plan to.
Oleamide: Oleamide can at higher doses improve REM sleep cycles whilst at lower doses it can cause the body to feel relaxed. It may promote GABA and produce serotonin production. Doses tend to range from 100mg-400mg with sublingual doses the most effective.
I tried this treatment but it gave me insomnia.
Valerian: This is one of the most widely researched supplements for sleep. It is sometimes used in tandem with hops. Studies have found that valerian can help people fall asleep quicker, improve the quality of sleep and the amount of sleep. Valerian doses for sleep typically range from 400mg-900mg.
I used this treatment for a long period of time and found it to be my most effective sleep aid supplement. It wasn’t a panacea for me and I have since stopped using it but I will start trying it again soon.
Melatonin: Studies have found that melatonin can improve circadian rhythm sleep disorders, delayed sleep phases, insomnia and sleep-wake cycle issues.
I take sublingual melatonin every night and my sleep is worse than normal if I miss a dose.
As always, consult a physician if you plan on trying any of the aforementioned treatments.
Conclusion
Currently my sleep issues are as irksome as ever from unrefreshing sleep to not enough sleep (and my ME riddled body craving sleep). I believe that my sleep problems are simply another secondary symptom stemming from my ME; indeed fulfilling ME criteria is largely contingent on the existence of sleep problems. The 3 sleep specialists I have seen seemed generally ignorant about ME/CFS. My taxi driver who drove me home from an appointment perhaps gave me the best advice, he exclaimed “You can’t be expected to sleep in a sleep study if you have all that equipment attached to you and sleep problems already!”
You say ” sleep studies find that around 1 in 5 ‘CFS’ patients actually have a sleep disorder causing their symptoms. ” Could you kindly reference these studies, if they are peer-reviewed published studies.
Hi Robert, thanks for the comment 🙂
The part you refer to I originally read in this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501671/
“Approximately 20% of CFS/ME patients in these studies were found to have either OSA or narcolepsy, with one study reporting that 20% of patients were given an alternative diagnosis of sleep disorder at 3-year follow-up. Subclinical levels of sleep disordered breathing have also been reported in some studies”.
The actual study in question is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC269990/ although a warning; the authors listed contain some notorious names!
All the best
Opposite to your experience, I got more sleep in the sleep lab than at home. The sleep lab staff were professional, my sleep neurologist was scientific in her focus, and the room for sleep was private and comfortable. At home, I had reminders of all the things I wanted or wished to do but could not do with this crazy disease. At the sleep lab, I could shed all other lingering desires to get something done for my day, and focus on the serious problem of sleeping. The equipment attached to me made me laugh when I saw myself in a mirror; they had to re-attach a few sensors after my laughing. Also opposite to you, clonazepam plus doxepin elixir had a clear beneficial effect for me. My first sleep lab night, whatever sleep I got was light sleep, no deep sleep and almost no dreams. Then I did the big experiment of putting a few drops of doxepin under my tongue, and taking 2 mg of clonazepam. The combination allowed me to have dreams again, and to have deep sleep (sometimes called Stage 4). The second night at the sleep lab revealed an anomaly never yet explained. Where it would be expected for me to have about 20 or 25 “stage changes”, from dreaming to stage 2 or stage 4 to stage 3, etc, I had well over 200 stage changes. All throughout my sleep, my brain jumped to awake, sometimes called Stage 1, from every other sleep stage, for about a second and then if I were lucky, I would continue sleeping. It was a strange pattern on the detailed EEG record. If not lucky, the one second awake would end my sleep. Knowing this, if I did wake up enough to be aware of it, I would say, calm down, relax and try to sleep again, knowing it might happen, and my sleep periods got longer.
The other problem, of when I fall asleep, is intractable. I have lost the connection to the 24 hour day. I need the sleep so very much that I try now to sense that I might sleep, and aim my supplements (melatonin) and the two Rx medications for when I might sleep, no matter the hour. I had to make a choice of forever trying to get my body back to a pattern for the onset of sleep, or get some sleep. I chose to get some sleep.
I am blessed not to have Restless Legs Syndrome. I wish you the best in finding good sleep.
@Sarah
Thanks for your comment and for sharing your experience of a sleep study. I’m glad to hear that you experienced positive effects from the Clonazepam and Doxepin combo. I have tried Doxepin and even at 1/100th of a 10mg dosage (0.1mgs) causes me to experience next day drowsiness although it does paradoxically give me more energy the next day! It is interesting to hear about your 200 stage changes in sleep stage; I bet that perplexed the sleep experts. In a sense it’s good to know that there is something that tests are picking up causing sleeping problems although I suppose fixing these problem is the challenge. Wishing you the best in health and in sleep.
I have severe ME/CFS, bedridden for almost 3 years and ill for 5. Onset of symptoms was in March of 2015, precipitated by an upper respiratory infection and then two weeks of severe mental stress. I also have a sleep apnea profile very similar to yours — my results indicated “sleep apnea characterized mostly by increased upper airway resistance.” I’ve been using CPAP religiously for about 4 years.
In addition, I had what’s called a sleep endoscopy, which showed collapse of the airway at the tongue, soft palate, and epiglottis. And I also had, get this, a temporary TRACHEOTOMY (still have it in) done a year and a half ago, because an ENT convinced me that I should rule out sleep apnea as the sole cause of my fatigue. I slept with the trach open the first three nights and the results were horrendous: racing heart, numb legs, tight chest, severe exhaustion, etc. I now cap the trach off and just use CPAP on its own, just like I was doing before. The doctor said there must be something else going on besides the airway issue. Which leads me back to ME/CFS.
I’ve tried 23 different medications in an attempt to improve sleep, to no avail.
Have you experienced any improvement in sleep in the last year?
-Dave
I’m sorry to hear of your travails with sleep. Unfortunately I still haven’t stumbled across anything to help my sleep. I’ve got some ideas that you may have already tried. These may be worth discussing with your physician. Firstly, if you haven’t, it’s worth reading this link http://www.uarsrelief.com/uarsreliefebook.pdf about a patient with UARS’s experiences with improving their sleep. They offer lots of suggestions including specific antihistamines, Nozovent (which might be worth trying) and various nasal sprays. I’ve heard anecdotal reports of ME patients improving their sleep with vagus nerve stimulation using an ear clip and a TENS machine. Also, I’ve heard of some patients having significantly improved sleep when taking CBD drops. I’ve written another article about some sleep ideas for ME patients here: https://livingwithchronicfatiguesyndrome.wordpress.com/2015/09/20/the-best-sleep-aids-for-m-e/
Please let me know if you ever discover anything that helps your sleep!