I’ve been struggling for some weeks to put together this post. Everything I’ve written is based on established facts or theories. Some is based on research evidence. What I’ve written then is verifiable i.e. you can look it up if you wish.
However, I didn’t want to support everything with references, this is not an academic essay, so I have only given a few.
My intention is to give information that may help some people improve their sleep experience. I would never claim that what’s suggested is going to be 100% effective, but nothing ventured nothing gained.
Three main problems can occur with sleep
1/ Difficulty getting to sleep
2/ Difficulty maintaining sleep (early waking)
3/ Poor quality of sleep. i.e. either a lack of depth and/or lack of paradoxical sleep.
SOME FACTORS AFFECTING SLEEP
RLS symptoms : Symptoms may prevent falling asleep. Some people say symptoms wake them up. Others just wake up anyway, symptoms or not. . For some, even with a sufficient length of sleep, poor quality of sleep can cause issues e.g. as in PLMS.
Pain : Pain may prevent falling asleep, cause early waking and cause poor sleep quality.
Disruption of Circadian rhythms : Sleep is bought about by changes in our “internal” environment, variations in the levels of hormones and neurotransmitters. Some of these promote sleep and some promote wakefulness.
Disruption can be of two kinds
a) The internal circadian rhythm gets desynchronised with external events.
b) The various rhythms become desynchronised with each other.
Metabolic disorders : Disorders leading to an excess of energy may disrupt sleep. Disorders leading to a lack of energy may lead to excessive sleepiness.
Medications : There are quite a few medicines that can affect sleep negatively. Some may prevent or lessen sleep, some may alter the quality of sleep
Other sleep-wake disoredrs : This includes such things as Insomnia disorders, Sleep-related breathing disorders and Circadian rhythm sleep-wake disorders
So far so good. I expect that most people with RLS will readily accept the above. Some people may find some of the following not so easy to accept.
Levels of arousal : Arousal refers to a state of alertness or excitability of the nervous system. Over arousal can disrupt sleep.
Causes of overarousal include
The “stress” response. The same physiological response is present in both negative stress (anxiety) and positive stress (excitement).
“Hyperarousal” associated with RLS. There’s quite a few studies that have demonstrated that RLS is associated with hyperarousal in untreated sufferers. This is basically an overexcitability of the central nervous system. It is due to the excess of glutamate commonly found in RLS.
Personality traits
This is what studies have said
RLS patients have “unfavourable sleep-related personality traits”
Conclusion : There are many factors affecting sleep and there may be others I haven’t identified People with RLS may experience the same factors as people without RLS.
It shouldn’t be assumed then that sleep problems with RLS are entirely and only affected by RLS. Hence it could follow that alleviating other factors could help with sleep despite RLS. This isn’t ever going to entirely eliminate sleep problems.
Biomedical measures which can help promote sleep are probably obvious.
Psychological, cognitive and behavioural approaches have been found to help with sleep problems, even in people with RLS.
This could include
1/ Measures to regulate Circadian rhythms
2/ Measures to reduce Mental arousal
3/ Measures to compensate for adverse Personality traits
How to decide which measures to adopt
A well documented approach is known as “problem solving”. This usually involves four steps.
1) Assessment : identifying what your particular needs or problems are.
2) Planning : Identifying what you hope to achieve in relation to each of these (goals or outcomes) and deciding what actions to take.
3) Carrying out the plan
4) Evaluating the outcomes.
Information has to be collected to enable steps 1) and 2)
NOTE This process can be learned. It may be natural for some people and for others it may feel unnatural. This is a personality factor, some people are problem focussed copers, others are emotion focussed copers.
Measures to regulate Circadian rhythms
Behavioural measures to promote sleep are commonly referred to as “sleep hygiene”. They are based on the fact that circadian rhythms/sleep patterns are affected by three things
a) Exposure to light and dark
b) Activity levels
c) regularity
Measures to reduce Mental arousal
The main measure to counteract positive stress is to avoid stimulating or exciting activities at inappropriate times.
There are a whole range of therapies and stress management strategies for dealing with anxiety.
Their appropriateness depends on whether the anxiety is “state” anxiety or “trait” anxiety. The former is a response to a situation, the latter is a habitual response as part of a person’s personality.
Measures to compensate for adverse Personality traits
There are behavioural strategies for compensating for a low internal locus of control. Other personality factors may need more intensive psychotherapy.
This is obviously just a broad overview of sleep in relation to RLS. How you view it is up to you.
Thank you for this, I am allergic to MSG my legs and face swell very badly so I avoid it as much as I can but it is hidden in some foods by using different names for it. I note you mention glutamate my RLS is now so bad night and day and I get very little sleep yet I am full of energy could there be a connection with glutamate and how can I look into this further.
As you may know Glutamate is one of the most prolific neurotransmitters. There is a cycling between Glutamate and it's excitability and GABA, the relaxing neurotransmitter. The hyper-arousal state with excess Glutamate from RLS is precisely why I could get 2 hours sleep (or less) get up and go to work - come home and do it all again! I have tried just about everything to assuage the Glutamate - but nothing really seems to work. My RLS is under control with iron supplements, but sleep still suffers - daily, and it's the damn Glutamate! Here are 3 articles that I have read over and over, with solutions I have tried over and over.
What they say about glutamate is quite frightening!
It does appear that it may be possible to restore the GABA glutamate balance without resorting to toxic drugs,
I my view if doesn't appear to be an easy thing to do. It would be best to adopt appropriate lifestyle habits at an early age. Unfortunately when you're young you can take your health for granted.
Yes...I've read the same articles and read them over and over as well. I am constantly trying to up the GABA and lower the glutamate, through diet and supplementation but no real luck yet. Both GABA and PharmaGABA did not make any difference for me. I will continue to experiment and report back should anything interesting surface.
Glutamate is a very common neurotransmitter and an excess of it is found in RLS, it causes overexcitability hence the RLS symptoms and the sleep problems.
I believe it is in many foods, so it may help if these are avoided. That's something worth looking into.
The other side of the coin is that glutamate is normally balanced out by GABA, another neurotransmitter. Hence anything that boosts GABA levels can also help. You can get GABA as a supplement. I'm not sure if it will help with RLS because if is difficult for it to get into the brain.
Pregabalin and gabapentin work by inhibiting glutamate and boosting GABA.
Great info, thanks. Do you have any experience with glutamate scavengers like calcium pyruvate and/or oxaloacetate? Also, has any progress been made in testing glutamate in the brain? My present understanding is that glutamate in the blood does not necessarily tell you what levels are in the brain? Thanks.
I have tried Oxaloacetate - nothing - and will retry the Calcium Pyruvate (which I see I have, but haven't tried yet). Mostly I rely on ibuprofen that I read is a glutamate blocker. When I wake up I take 1/2 of a 100mg caplet and usually fall back to sleep for awhile.
Sorry, I can't answer your questions, I simply don't know.
You're probably right about blood glutamate not predicting brain glutamate. This is true of a lot of things and occurs because of the limitations of the blood brain barrier.
For example, blood ferritin is used as an indicator of brain iron levels, but actually it's not a very good indicator at all.
In order to more accurately assess brain iron or brain glutamate levels it would at least involve getting a sample of cerebrospinal fluid and even that might not work.
I believe however that there are very specialised scanners that may be able to assess iron levels. I'm not sure about glutamate.
The only certain way would be to do a brain dissection.
None of these is practical on an every day level. The last one wouldn't be much use to you.
For me, RLS is definitely stress-related and has been all my life. I’m relatively easily stressed and can become quite ill if I’m exposed to too much stress for a long enough period, so I avoid as much stress and stressful situations as I can. A lack of self esteem/self confidence is also something I’ve suffered with since I was very young, though I had RLS from birth as far as I can tell, so don’t know if this is a trigger or more as a result of life struggling with RLS? I had definite outside influences causing my lack of self confidence though.
Would you mind explaining what you mean by a “low internal locus of control”? Is it a lack of self control or something?
Hi, Manerva_ congratulations for this initiative; a challenge. SLEEP, without it, no chances for any life quality. I used to struggle for better sleep during some 48 years; i.e., until some 3.5 years ago. Main problem all these years: no clear diagnostic (depression? generalized anxiety? overactive bladder and nocturia?, and so on....);
_ 3.5 years ago, the miracle: after retiring, with a little more time to spare on healph, a God-sent-Doctor asked me to go for a polissonagraphy (PSG). He said: "every person, without exception, with sleep drawbacks , should, first of all, go for a PSG. Sleep Disorder Breathing quite often (90% of cases?) is behind sleeping problems, including RLS. It was my rebirth, after diagnostic of Upper Airway Resistence Syndorme (UARS) and RLS disturbing my sleep;
_ since then, lots of education and take care for myself of my treatment (including CPAP machines and parameters, medications, etc). Doctors have been only to give me prescriptions, pretty much; no confidence as general rule. Luckly, I have two MD friends;
_ You said: "It shouldn’t be assumed then that sleep problems with RLS are entirely and only affected by RLS. Hence it could follow that alleviating other factors could help with sleep despite RLS. This isn’t ever going to entirely eliminate sleep problems". I could not agree more with this statement.
_ I am totally fan of evidence-based Medicine and Psycology, much more than of RCT and these stuffs;
_ It appears there would be some concurrence on first and foremost, treat breathing related drawbacks ( far more frequent and subtle that anyone can imagine!... see, for instance, Dr. Steven Park's book Sleep Interrupted, and Barry Krakow bood, Sound Sleep, to begin with);
_ therefore, it would be very importan to have a good diagnostic before anything else. My case: after battling my UARS, at some 85-90% degree, it became clear what remained to be treated on RLS. Doing rather well these days, on 0.4 mg Clonazepam, some supplements, rigorous sleep hygiene, and Energy Psycology.
Hi, Manerva, _ it might worth adding this: Sleep Disorder Breathing (SDB) is a broad spectrum term for many degrees of choking, which can arousal you (micro 3s to 15 sec, more than 15 sec: awakenings, and so forth...), and baddly interrupting your sleep. From one hand, Obstructive Sleep Apnea and Hypopnea (OSAH) are severe cases of choking, at the range of 50 to 100%, with oxygen dropping;
_ UARS (flow limitation), on the other hand, however, can be even more deleterious for sleep than OSAH. Only partial subtle choking, maybe no more than 20% of flow rate, no oxygen drop, is enough to arousal/awakening you, preventing you from going through sleep stages, and interrupting, in particular, REM sleep. That because arousal threshold very much depend on how your intact nervous system responds to those very minor chokings;
_ Arousability may be then the culprit for RLS attacks and "insomnia" , panic attacks at night, and so on. Arousals allow RLS taking charge when you awake;
_ that is the reason I have been using Clonazepam + other sedant supplements: they don't stop RLS, rather they appear rising the arousals threshold and diminish time to back to sleep at every awakening, at least up to some 3 to 4:00 am (worse time for me), when I finish my first sleep phase, make strong strecthings, apply Energy Psycology, etc, for some 60 minutes, going back to sleep somewhat.
Thanks for the information. I have amended my original post to include what you write about.
Hi. Stress is a major factor affecting RLS, and RLS is a major factor affecting RLS - a vicious circle.
Hence I see stress managment as a major factor in the management of RLS. I find it a real shame that all the official medical guidelines on managing RLS and all the medical RLS Experts fail to barely mention this. However, they are medical.
I'm afraid it sounds as if you suffer from "trait" anxiety. This means that you have habitual ways of reacting to stressors (things that cause stress) which is part of your personality.
It is going to be more difficult for somebody with trait anxiety to manage stress than somebody who doesn't have it.
It depends on whether you think you can change your personality or not.
Perhaps you can't.
However, irrespective of the degree to which your personality has been shaped by genetic factors or by life experience, I do think that if you at least recognise your own traits, then you can learn "new" habits to counteract them. The new habits may be cognitive or behavioural.
To be truly effective this would seem to require some formal psychotherapy or methods used by such psychotherapies.
"Locus of control" describes the typical way in which a person sees the world in general. It is, if you like, a kind of personality trait again.
In this case people will tend to interpret events and react to them according to where they see control being located. This is why two people who undergo the same event may have different experiences of it.
The two extremes are "internal" locus of control and"external" locus of control. Internal refers to ourselves, i.e. in us. External refers to the external world, everything outside us.
In reality, nobody has absolute control over everything that happens to them but conversely that doesn't mean that you will always, absolutely, have no control.
As far as health is concerned there are many reasons to support the idea that a high internal locus of control is desirable.
People who have an (unrealistically) low internal locus of control often make no attempt to help themselves, even when it is possible.
This is also associated with a person's "coping style", thsi is the way in which people typically go about dealing with a problem, e.g.the problems that RLS cause such as insomnia.
People with high internal locus tend to be "problem" focussed and people with low internal locus tend to be "emotion" focussed.
Typically then in the case of a person who has RLS and hence a sleep problem.
A person who has high internal locus will think it may be possible they can do something about it. They will seek information about the problem and try to solve it.
A person who has low internal locus will think it isn't possible they can do something about it. They will try to pass on ALL of the responsibilty for dealing with the problem to somebody else, e.g. a doctor and won't attempt to do anything for themselves.
They may also attempt to avoid the bad feelings that the problem creates by various defense mechanisms such as avoidance, denial sublimation etc.
You did ask! I hope I've explained it well enough.
Wanted your insight on my first appointment at a Neurology Institute in Harlingen, Texas. I had a Charcot/Marie/ Tooth diagnosis in 2014 sleep studies for snoring and RLS in 2012 and 2014 and little medical follow-up until today. I take 1200mg gabapentin (since 2012) and have reduced pramipexole for 2mg/day (since 2012) to 0.625mg this week. I had a recent ferritin result of 750 (previous tests were all about 350). I had surface bladder cancer surgery in 2014 and recently on May 19, 2021 and 6 BCG treatments.
High points of today include:
1) Physician was a Nurse Practitioner not an MD and has RLS.
2) NP wants me to reduce pramipexole 0.125mg /week. My rate has been 0.125/2 weeks.
3) NP provided 7 day samples of 1mg and 2mg Neupro patches.
4) I am to place 1mg patch on various skin locations for 20 seconds, remove, and toss away.
5) After 1mg are used up, I will do the same with the 2mg sample.
6) I am replacing pramipexole with the patch with a 5 week overlap.
I have wondered what might replace Pramipexole. In addition, he is referring me to a physical therapist. I would like to have a medically directed exercise program and lose the 50 pounds I have gained since taking pramipexole. The weight gain is directly correlated with my number of sleep apneas/hour and wheezing.
Hi, every case is different and yours is no exception to this.
Please clarify/confirmthat you are still taking 1200mg gabapentin.
Since you are reducing the pramipexole I guess there was or is some problem with it. Was the problem aygmentation. If you're still suffering augmentation then the gabapentin won't be of much help.
Has your NP ever withdrawn from pramipexole? I'd say reducing by 0.125mg a week is way too fast!
I usually suggest reducing by HALF a 0.125mg tab every TWO weeks.
If you want to try 0.125mg every two weeks, then see how you go. If you find the withdrawals too severe then you'll have to start cutting the tablets.
As the dose gets smaller, the withdrawals get worse.
I confess that personally I only cut by half a 0.125 tab every 4 weeks.
I have no imagination whatsoever why you should put a patch on for only 20 seconds.
One possibility would be to see if you're allergic to it. In which case it doesn't matter whether it's a 1mg or a 2mg patch.
To be of any value whatosever patches need to be left on for 24 hours that's the whole point of the patch.
What the NP suggests seems quite bizarre! I suggest you ask what this is supposed to achieve.
If you had problems with pramipexole i.e. augmentation, then you shouldn't be switching from one dopamine agonist, pramipexole, to another, rotigotine, (the patch). Augmentation will inevitably happen again.
I'm afraid that although the NP may have RLS themselves, it doesn't necessarily mean they know much about it.
The link below is to the latest recommended guidelines for the medical management of RLS. This would seen to suggest that your best option would be a high potency opioid as you appear to be suffering "refractory" RLS.
It also appears that there are two major aspects of RLS management that your NP/neurolgist has completely ignored. That is iron therapy and the avoidance of aggravating (exacerbating) factors.
You should have blood tests for serum iron, transferrin saturation (TSAT), ferritin and a full blood count. If you're suffering no anaemiaand it's safe for you to take iron (TSAT<45%) and your ferritin is less than 75 then it's recommended you start on an oral iron supplement. If it's over 75 but under 100, then an IV infusion may be needed.
The other aspect is exacerbating factors. These are usuallky othger medicatioinsnyou'r taking. perhapsifyou say here ifyou'rwtakingany other medication and what it's called,I cansay ifit may be makingnyour RLS worse.
Judging from the above, I guess the NP won't have a clue.
There may also be other exacerbating factors that aren't mentioned in the medical literature,these are mainly to do with diet, inflammation and gut health.
SUMMARY
1) I'd suggest you wean off pramipexole much slower than that recommended to you by the NP
2) I'd suggest you refuse the patch and ask for an opioid
3) Have blood tests formiron and start on iron therapy if safe
4) identify any other meciations you're taking
5) read up about diet and RLS.
My suggestions are based on literary evidence such as the link above. I dobt if your NP will be in any position to contradict what's written in the link.
Yes, I am taking 300mg gabapentin at 5pm and 900mg at 9pm. I was concerned with the NP when he mentioned prescribing pramipexole to other patients. I will go back to my plan of 0.125 reduction for 2 or more weeks. I am at 0.625 so my rate is for 10 more weeks. I will refuse the patch since it is substituting one dopamine for another. The Neupro patches were too expensive. There were price reduction options requiring paperwork. I am scared about opioids!
I will read the Mayo RLS update carefully and go from there. I think my peripheral neuropathy is a bigger problem than RLS, but it seems difficult to separate each.
I suggest you familiarise yourself with all that the Mayo update says and request treatment according to what it recommends.
You can use the update to support what you request.
On the other hand if your NP says anything that contradicts what it says, or suggests anything the update doesn't say then you can politely ask them to explain what they're suggesting and what evidence they have to support it.
Do not overlook the iron therapy or exacerbating factor. By attending to these some people with RLS have been able to stop taking RLS medication.
I'd be interested to hear what explanation they have for the bizarre thing with putting a patch on for 20 seconds.
Thanks again; sounds like a good approach. It is Friday so I will do my homework and get back to you next week. I may need to look up a few of the references. Abstracts are usually available on line. The NP was going to send me to a physical therapist and I hope the PT can help with the neuropathy.
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