Dr. DeMeirleir’s fourth video in ME/CFS Vereniging’s (ME/CFS Association) ‘Science for Patients’ video series is on sleep. Like the others in the series, the production values are excellent and a dialog box provides an English translation.
Dr. DeMeirleir continues the ME/CFS Association’s Video Series with ME/CFS experts with a Talk on Sleep
Dr. DeMeirleir starts off with the interesting fact that at the beginning of the illness most people with chronic fatigue syndrome (ME/CFS) feel that they sleep too much, but over time they often end up being unable to get refreshing (deep ) sleep and wake up more and more during the night; ie, the heavy sleep or hypersomnia early in the illness transitions to fitful light sleep over time.
A researcher and clinician Dr. DeMeirlier focused on the research end first. He believes the sleep problems start with the over-production of a cytokine, IL-6 , known to be triggered by infections, which causes increased sleepiness. In a kind of a cascade effect, another cytokine called IL-10 apparently tries to tamp down the inflammation caused by IL-6… and causes more sleep problems. Thus, De Meirleir believes sleep-deprived ME/CFS patients have problems caused by (a) the immune response to the initial infection and (b) the immune response to the immune response (:)). (Sometimes you just can’t win.
This scenario of the body simultaneously trying to fight off an infection AND trying to reduce the inflammation caused by that fight, has shown up in several studies. ( The way out of this mess is to resolve the infection or, if that is not present, to fix the disturbed homeostasis the infection left behind. We haven’t gotten to that video yet, though :)) Dr. De Meirleir, by the way, believes the infection is still present.
The cytokines are not the only bad actors. In a rather bizarre twist, De Meirleir stated that precipitous drops in blood pressure during sleep (to 80/65 in some patients) worsen the low brain blood flow problems normally present, apparently depriving the brain’s sleep centers of blood.
There are no easy answers; in this disorder, several different factors can come into play for each patient and it’s this heterogeneity that is responsible, De Meirleir believes, for the mostly inconsistent sleep study results. Not happy with the extent of the sleep studies done this far, De Meirlier noted that no thorough sleep studies involving twins had been done. ( Dedra Buchwald’s twin sleep studies found no differences in EEG/delta wave patterns, a blunted slow wave response to a sleep challenge, normal sleep architecture, and increased stage 3 sleep. The studies, however, were small and perhaps not thorough enough).
There was some good news. Dr. DeMeirleir noted that abnormal EEG and delta wave patterns (also seen in fibromyalgia) and low stage 3 and 4 sleep, suggested a way forward for treatment. The delta wave patterns have been one of the clear, objective pieces of objective evidence for the sleep problems found in ME/CFS, and De Meirleir noted, interestingly enough, they’d validated a treatment approach over the past twenty years; using short-acting anti-epileptic drugs rather than standard sleep drugs for sleep. He stated sleep drugs might increase sleep duration but they have little effect on measures like REM, time in stage 3 sleep, etc. which affect the quality of sleep.
The upshot on the treatment end for Dr. De Meirleir is to use anti-convulsant drugs to smooth out the delta interruptions present and stay away from sleep drugs.
To end up the video, De Meirleir pointed out the fascinating ‘problem’ many ME/CFS patients have of feeling better at night – so much better that they put off bed-time a bit more and more every evening until some people end up having dinner at 3 AM in the morning…and sleeping through the day, throwing them out of rhythm with their families and the rest of humanity.
It’s an understandable problem; who, after all, wants to go to bed when you’re finally feeling a bit better? But it’s not a great recipe for maintaining as normal a life as possible.
This was another intriguing video from ME/CFS Vereniging in what looks to be a fascinating series. How interesting it would be (hopefully will be) to get as many ME/CFS experts before the camera as possible and then compare their insights.
- Neurontin (Gabapentin) for sleep in Chronic Fatigue Syndrome
- Next Up: Dr. De Meirleir on Pain…
Thanks so much, Cort, for bringing this series to us and for your insightful review.
Just another great video, thanks for breaking it down for us.
Any ideas on which sleep medicines he suggesting that are anti-convulsants? I have noticed that Gabapentin does make me sleepy and I take it before bedtime.
I assume that its gabapentin but don’t know; Gabapentin is the only other anti-convulsant that I know of that is fairly regularly prescribed for sleep in ME/CF…It was unfortunate he wasn’t willing to say exactly what drug it was. .
For many of us the sleep issue is complicated. I don’t have any difficulty sleeping through the night but from multiple sleep studies I know I am not sleeping well and CPAP machines make it worse. I wonder about the blood pressure drop. It was probably recorded for me but I don’t know what it is. One interesting thing from my studies is the observation that I have paradoxical breathing.
Unfortunately, most docs attribute bad sleep to regular sleep apnea or bad “habits”.
I’d never heard of the blood pressure drop during sleep before. That was really interesting…
The IACFS/CE Primer (2012) mentions clonazepam (Klonopin) at very low dosage, 0.25-1mg as well as Gabapentin and others. Clonazepam is also an anti-seizure drug.
I see Cort produced this last year which is a great guide to various doctors thinking on sleep.
http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/the-first-symptom-sleep/treating-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-a-prescription-for-sleep
Further searching in that article shows that several ME/CFS experts use this drug at times.
Thanks Tony…Maybe it’s Klonopin! Much more frequently used than Neurontin….thanks for pointing that out.
Interesting. Low blood pressure during sleep is familiar to me. I have hyperadrenergic POTS as well as CFS.
Hyperadrenergic POTS is generally associated with high blood pressure, yet my BP is very low sitting and supine. While sleeping it goes very low.
Was unable to tolerate beta blockers for several reasons and they caused my ‘middle of the night’ BP to go to 70’s over 50’s.
Gabbapentin perhaps, but as Tony mentioned why not Klonopin?
Dr. Cheney started me on Klonopin in 1986, and I’ve been on it since, and it’s always helped with sleep (until I became hyperadrenergic). The interesting thing to me about Klonopin is that I’ve been able to stay on the same dose of Klonopin (1.5 mg.) since 1986. I’ve not needed to increase the dose to maintain the same benefit.
Dr. Cheney has also stated, (I’ll dig through my bookmarks if needed) that Klonopin helps at a lower dose with daytime energy. I’ve not experimented with taking it during the day. Seems counter-intuitive, but a lot of what helps with CFS or POTS is definitely counter-intuitive in my experience.
Klonopin has been a ‘go to’ drug for CFS for Dr. Cheney since the mid 1980’s. My experience with Gabapentin has been such that I choose not to take it. (Makes me feel ‘dopey’)
Thank you for sharing this Cort!
Questus
Thanks Questus….I’m starting to think it’s more likely Klonopin….
That’s a mega blood pressure drop; any doctors ever able to give you an idea why that’s happening…?
I have been taking both Klonopin(1 mg) and gabapentin(600 mg) together(evening only) since 5 years but in my experience the effect wears off during the course of time.Also,I suspect that there is a daytime-rebound-effect of these drugs,so that you become hypersensitized to sensory stimuli to the point of overwhelm .Since about a year I also take Klonopin in the morning(0.5 mg) which improves this hypersensitization.And recently I’ve added taurine(1000 mgs mornings and evenings)to improve GABA production.Now I can watch maybe 1 hour of television without problems.Still,the brain infection problem remains a mystery.Reliable Lyme tests are very expensive and alternative tests like electro-acupuincture didn’t show any Borrelia activity.
Thank you. As always, ME/CFS is both fascinating and complicated. Somebody should offer one of those $1 million dollar prizes for solving a tough problem.
With sleep, I noticed that light affects it strongly. If I get light during the day, I automatically get tired (overstimulation like that threshold gating thing) and I fall asleep before night. Then I slip back to the waking at night, sleep during the day cycle. If there was no light in my eyes, I think i could maintain a regular awake during the day schedule.
I have been taking 2 drops of klonopin each night for several years and I sleep well. Sometimes I take 1 drop during the day if I feel particularly tense or stressed about something. The maximum number of drops I have ever taken is 5. No side effects. It doesn’t leave me feeling lethargic. Margaret
I also have been on Klonopin 1mg before bed for sleep for the last 3 years with no dose change but then my doctor added Topamax last May due to worsening migraines and my sleep has been better these last 9 months than the 3 years prior since becoming ill. It was so true how, in the beginning, I felt like I was sleeping all. the. time. but after 3 months that completely changed. Most nights I was getting 3-4 hours of sleep and some nights not sleeping at all.
I do suspect that he is referring to gabapentin, though, as it is classified as a true anti convulsant, in the same category with Topamax and Lyrica. Although Klonopin is used to treat seizures it is classified as a benzodiazipine, in the same family as Ativan, Valium, and Xanax.
I’ve used GABA (Gamma Alpha Buteric Acid) for many years and it has helped me to sleep much better. I know it doesn’t work for everyone, but fortunately, it has helped me substantially. I take 500 mg just prior to going to bed at night.
I have experienced several/many blood pressure drops during sleep which has always made the following day difficult.
Gord. 27+ years and counting.
Brilliant piece of work from KDM again. Given low dose Gabapentin simply for pain (it didn’t touch) and lack of sleep I was allowed to up to full epilepsy levels and the result was amazing. If I recall correctly the period was about a month in which I slept day and night (and deeply) rising only for the bathroom and small “meals”. Not only did it seem to reset the deep sleep cycle but I had a theory it allowed some healing to take place in the damaged brain area (?infection) associated with the autonomic functions.
I take 150mg of Lyrica at bedtime and many nights am able to sleep for 6 hours. The problem is that this is really not enough sleep for me to feel as good as I’m able the following day. After watching/reading this video, I just took another Lyrica when I woke up too early, and I slept another 4 hours. It was fabulous. I am so grateful to know that pregabalin only works for about 6 hours. It’s practical info I could use to help myself feel better. I’m grateful to Dr. De Meirleir for mentioning that anti-seizure meds only work about 6 hours and to you, Cort, for bring us this vital info. Thanks again!
Sarah
He seems to have cause and consequence mixed up. We change our sleep pattern because our day and night cycle is affected. Not the other way around, we don’t cause a rhythm problem by our sickness behaviour.
By sleeping on your stomach, you might avoid the need to take anti-epileptic drugs. The frequent waking problems are caused by low oxygen saturation, and short of sleeping in a sitting position, a prone position (sleeping on the stomach) is the best way to keep oxygen saturation up.
Also, inclined bed therapy might help (raise up to 20cm at the head).
This already known for decades from Parkinson disease studies.
I wonder if elevating your feet at night might help with the blood to the brain. Would appreciate any input regarding this theory.