Admin-approved online RLS Study from ... - Restless Legs Syn...

Restless Legs Syndrome

15,708 members9,977 posts

Admin-approved online RLS Study from the Dep of Psych, Uni of York

Tom_York_Psych
Tom_York_Psych

Hello everyone - My name is Tom and i'm from the Department of Psychology at the University of York (Here's me: linkedin.com/in/thomas-hunt...).

We are very interested in better understanding in better detail the cognitive impact of RLS. I've posted before and it's been a super useful experience so far, both in terms of collecting data and gaining a more personal understanding of RLS going beyond the research.

This week's talking topic that i've been wondering about: Research suggests that RLS is circadian-driven, with symptoms starting at the same time each night - this implies that a daytime nap should be symptom-free and restorative - does this fit with your experience?

We'd love to hear as many differing perspectives as possible so please get involved 🙂

Also, we're carrying out online RLS research right now if anyone wants to try out our memory game from home in your own time, just let me know (link attached - this link is just a quick starter form to check you are suitable for the study) 🙂

forms.gle/GF7kF7CgDp9zuDva9

109 Replies

Hi Tom. Thank you very much for researching RLS. The sooner society realises the debilitating nature of RLS the better for us.

I'd be delighted to help you helping us!

Tom_York_Psych
Tom_York_Psych in reply to raffs

Thank you very much Raffs, much appreciated.

I've sent you along everything you need now to get started in your own time - and if you have any questions along the way just let me know either here or by email.

Best wishes,

Tom

raffs
raffs in reply to Tom_York_Psych

I'll start tomorrow - I am a bit frazzled today as I didn't sleep last night (due to pain not RLS).

Tom_York_Psych
Tom_York_Psych in reply to raffs

No problem at all there's quite a lot of flexibility. Hope you feel better soon. Best, Tom

Sampsie
Sampsie in reply to raffs

Hi Raffs, good to hear from you 🙂

raffs
raffs in reply to Sampsie

Cheers Sampsie, the health hasn't been great and been spending a lot of time living in a fugue state. I've just been prescribed 2 antibiotics so will no doubt have it worse before it gets better but at least both feet are above the ground.

Hope all is going well with you.

Sampsie
Sampsie in reply to raffs

Oh Raffs, that's really rough. I'm so sorry to hear that. Sending you strength and hope that you come out the other side very soon. Take good care.

Sorry to read of your troubles raffs. I hope things pick up for you.

kelirock
kelirock in reply to raffs

Hello Tom, I have been a sufferer for probably about 30 years, I would be happy to help you with this research.

Hi Tom

Great to hear about your research, I think you'll get many responses.

I'm assuming you're inviting responses to your question "a daytime nap should be symptom-free and restorative - does this fit with your experience?"

No simple answer!

ONE - RLS is circadian and the RLS diagnostic criteria state symptoms are "only occur or are worse in the evening or night"

You will note that that it says "or worse".

So some people do get symptoms during the day, although they may not be as bad as at night.

TWO - MOST people who are prescribed a dopamine agonist (DA) for RLS suffer a major complication, i.e. dopaminergic augmentation. Most people are never warned about this and most doctors appear to be ignorant about it and mistreat it.

Many people may actually be suffering augmentation and not realise it. It can develop slowly.

There are several features of this : one being that symptoms begin to occur earlier in the day.

MY EXPERIENCE is that I was prescribed a DA in 2009 and never warned about its complications. After 5 - 6 years I started suffering augmentation. I didn't know I had it, had never heard of it and my GP didn't have a clue.

As a consequence I was barely sleeping at night, no more than 2 hours and if I tried to nap anytime during the day it was impossible as within seconds of lying down I would experience involuntary movements of my legs, arms and shoulders because of the RLS.

So in answer to your question "a daytime nap should be symptom-free and restorative - does this fit with your experience?"

For me NO, not when I suffered augmentation.

It's true that many people with untreated RLS may be able to have restorative naps during the day (i.e. if they don't have to go to work). BUT, that doesn't apply to everybody.

People mistreated with a DA and consequently suffering augmentation like myself, quite often are unable to sleep at any time and suffer chronic sleep deprivation. and its cognitive consequences.

The point about augmentation is significant. Only earlier today I read a post put on this site today where somebody consulted a doctor about their augmentation and was told that the benefits of a DA outweigh a "nasty side effect". Augmentation is not a side effect it is a major complication. This GP only suffers ignorance, but his patiemt is suffering mistreatment.

Thank you very much for the detailed and helpful response Manerva.

I completely agree with most of your points and one of the things i'm kicking myself the most about is not factoring augmentation more directly into the study. However, the design is fine for the core questions we are interested in and hopefully someone will more closely look at augmentation in future (there's a small, not very convincing pocket of literature suggesting DAs boost cognition in RLS individuals, for example).

I knew before asking that there would be a spectrum of responses with regards to how able RLS individuals were to get a nap in during the day, I was just curious to get a feel for just how varied the responses would be. In case I wasn't clear, the theoretical reasoning behind the nap question is that: (1) about 90% of so of RLS individuals experience periodic limb movements in sleep, mainly in the first half of the night (2) these PLMs cause arousals from sleep, disrupting continuity and total time in deep sleep (3) deep sleep is important for memory consolidation (4) since RLS is circadian-drive, then there's an opportunity to top up deep sleep with a nap and offset the secondary impact of sleep deprivation. But you are correct, RLS is progressive and many people will not have this option.

If you don't mind - could you comment on how your memory was across this journey you've been through so far, have you noticed any patterns over time or changes due to treatment/augmentation?

I don't mind, but will have to comment later.

raffs
raffs in reply to Tom_York_Psych

DA's boosting cognition!! Damn they nearly put my lights out. I was amazed that I was able to think at all on them. Not a favourite drug of mine.

Sampsie
Sampsie in reply to raffs

I just came of Oxycodone as I was incapable of thinking or remembering anything. Zombiefied. Now on Clonz...something...can't remember - but it isn't working so I had to find some old Gabapentin. No idea when I will be able to speak to the sleep clinic. I've contacted Dr B in the US and he is short staffed due to Covid but will get back to me at some point.

I just cannot find a favourite drug! Where's Mary Poppins when you need her.

Really sorry to hear this - one of the major problems that seem clear to me is that there isn't any sure fire treatment approaches and struggling individuals are made to just experiment with numerous powerful drugs, not ideal. Best wishes, Tom

Yes. On the flip side, there are powerful drugs that are looking really promising that are working so well for some, like brupenorphine, and we are being denied it.

Yet, dopamine antagonists that can cause the most cruel withdrawals, lasting months, and causing long term damage are given out freely.

Oxycodone is a life saver for some. The issue is having access to someone who is experienced in prescribing them all, and will work with each individual to find what works for them. There is no one size fits all. And not treat sufferers like drug addicts for needing to keep trying until they find what works the best with the least side effects, and not make them wait months for a follow up, or worse know less than their patient does.

All drugs are dangerous and have side effects. That's why our community always say try everything else first (iron, diet, etc.) and start at the lowest dose possible. But we wouldn't have to come here if we were being treated well.

I was on gabapentin for six years without a follow up and not a single medical professional explained I needed to split the dose and take the first lot 2 or 3 hours before bed. I learned that here. Meanwhile, I would take several tablets thinking they weren't working, not knowing this. And suffering side effects.

I hope this all helps.

Tom_York_Psych
Tom_York_Psych in reply to raffs

Thanks for this- like I said, the research that's available wasn't very convincing and goes against 100s of personal accounts people have shared with me.Best, Tom

Tom_York_Psych
Tom_York_Psych in reply to raffs

Thanks for sharing this - sorry if this reply pops out in the wrong place still getting used to the forum.

Yeah i'm not particularly convinced either - so basically i've read ever paper on RLS and cognition that's been published in the last 20 or so years and there was a little pocket of them that suggested there was a cognition boost for DAs in RLS, even perhaps just as a secondary effect of improving sleep by reducing RLS symptoms at night - but it wasn't convincing research at all imo and I think future research (maybe even the current study) will rule this out depending on the results.

Best, Tom

raffs
raffs in reply to Tom_York_Psych

Yeah, I could see those - at the beginning - of using DA's getting better sleep, less pain, less discomfort and the ability to sit at peace and registering as having better memories.

After the dose of the drugs increase would be another time to check memory with two further checks - 1 just before they stop the drug and 2 about a month away from the DA to really see what was happening. As said I would only imagine a short period after commencing where things would be improved.

Man I would love to develop tests - so many studies I have read could have been made much better with a few simple changes. There is something very frustrating reading a bit of research where the researchers missed a couple of things that would have made their work much more effective and informative.

During my Psychology A level we had to develop different studies in relation to the topic we were working on. During memory and cognition element I had several proposals all turned down due to ethical concerns. I wanted to work on drug (cannabis was turned down due to its illegality so I then wanted to use alcohol which was also turned down :( ) effects on memory, extreme sleep deprivation and stress. Needless to say my tutor kept shooting them down :(

Tom_York_Psych
Tom_York_Psych in reply to raffs

Thanks again - there are a number of useful things here, (1) measuring DA effects longitudinally sounds very interesting (2) measuring partipants initial satisfaction with DAs vs current also important (3) how long on DAs (4) whether augmentation took/taking place - all things i'd want to know if carrying out another study.

That being said, our study is still fit to answer a lot of really interesting and foundational questions the literature is lacking in a bit so not all bad.

Gutted, I almost done a PhD on cannabis and psychosis at Manchester Uni a few years back but we never won the funding, its still a really tricky area to get ethical approval to do research in.

Best wishes,

Tom

raffs
raffs in reply to Tom_York_Psych

If you think it would be difficult to get funding for cannabis studies at PhD level at Uni now think how hard it would have been for an A level student at tech 30 years ago :).

That's part of the problem with research - there is too much fear holding it back, the other part is trying to narrow it down considering there are 1 so many interesting areas and 2, so many areas bereft of good research.

Tom_York_Psych
Tom_York_Psych in reply to raffs

Yeah pretty much, and if you try and answer too many questions with one experimental design you tend to stretch it out and answer them all poorly.Best, Tom

Tom_York_Psych My experience is similar to Manerva’s. In my opinion and I suspect it is the opinion of others that the DA drugs have caused permanent damage. THAT should be studied, in detail. Sorry, it’s still a sore point (augmentation is hell).

Hi there, sorry to hear that. I'm not an expert in medications, I come from the sleep and memory world and we are sort of applying our general research skills in this field to related topics like RLS, Sleep Apnoea, postpartum sleep deprivation etc.

What I would say is that i've spoken to hundreds of RLS individuals now online and the response to DAs has been overwhelmingly negative. My partner has RLS and she's only 33 - if we have to weigh up medication options like this if it progresses down the line i'll be passing on all these experiences to her.

Best, Tom

Hi TomSo I have time to answer this question more fully. I believe that I have been suffering with RLS for about 12 years, but have only been diagnosed in the last 3 months. Apparently that is common amongst sufferers. I am very reluctant to deal with the condition with drugs, as from reading around the subject it appears that drugs partially alleviate the symptoms but don't deal with the condition. I wear a fitbit all the time now and have found that to be useful to provide doctors with facts. It very accurately reports changes in sleep pattern at night. I have begun a course of Ferrous Fumarate and there have been noticeable changes to my symptoms. (at the same time to improve Iron absorption I have drunk no tea coffee or alcohol, and I am taking other supplements Vits C B12 and Mg) Memory is definitely one of those. You will probably be able to provide a technical term for what I describe as passive memory rather than active memory. During 'bad days' I have little or no active memory, i.e. on those days I cannot not actively recall names, places everything is very passive. On good days I can recall the most astonishing facts. I know that I don't have a form of dementia (or least I don't think I have!) since I have just finished doing an MA in law. On 'bad days' I could not manage to read one academic paper and couldn't recall what I had read. In theory I should have been able to 'nod off' but never could. On good days I could read several papers with critical analysis and notes and form opinions. I don't know if you would attribute the following to a memory issue or not, but what I have observed during 'bad days', is an inability to reply to someone who is speaking to me, an inability to form or construct enough of a sentence to respond to their questions, and I am aware that that is a cognitive lack, not an emotional response.

Other symptoms that I have suffered are: falling over for no apparent reason; jangling of the legs, arms, shoulders, neck (sometimes feels like the back of my skull is going to explode); waking at night with severity (like having an electric shock), which my fitbit describes as moving directly from deep sleep to awake without going through light or REM sleep; the consequences of lack of sleep transposing me from being an outward going person to an internal person who cant be bothered to leave the house. Not depression though...always pleased to see people, but simply don't have the energy to make any arrangements. I have found that I do what I absolutely have to during the day and no more. Other consequences of lack of sleep and electric shocks are the constant nagging pain in my limbs, leaving me with a limp, and sometimes so stiff I'd have to crawl up the stairs. Thankfully the iron treatment seems to have reduced some of these symptoms. I hope that some of this is useful for your research?

Hi Tom,

I'd like to help if it helps you help us.

I've been awake since midnight, after just two hours of sleep - it's midday now. I can barely function. Each night is different for me. There are many factors involved.

I've needed medication for about 15 years, it was milder before that. But it is a progressive disease, generally speaking, and I now have symptoms starting 2 or 3pm, in my arms. Some days the RLS in my legs can be there when I wake or they start in the day. Right now, my latest medication isn't controlling the disease symptoms.

Naps don't make any difference to me. There are days when I don't have time for one, others when I don't want to feel like I am old before my years, needing an afternoon nap, some days I cannot stay awake. Others I am desperate, like today, but I cannot sleep. It makes zero difference to my symptoms. Just my energy and zest for life.

I'll do the memory test.

Good luck and thank you for helping us.

Sampsie
Sampsie in reply to Sampsie

Hi Tom,

There is a question relating to whether symptoms improve in the day when you are active . It doesn't take account of days like today when I cannot get out of bed as I am too exhausted to move. I don't know how to answer. It assumes I am always able to be active.

The same applies at night. Sometimes, no matter how bad the symptoms, I sometimes have to lie with my legs up so I can't feel them anymore due to lack of circulation because I am just too shattered to get up and move around or do something distracting.

I will answer the question but it will be inaccurate.

Hello,

The best I can say is to just answer as best you can. There's a few reasons the questionnaires might not seem intuitive at first. Getting a cross-sectional slice of data from a large enough number of people can serve a similar purpose to getting a rich wealth of data from a few, and this is often the route many researchers have to take. As well as this, there might be the odd question that doesn't really fit with a typical RLS experience since RLS has many mimic conditions and we'd like to rule these out if possible through some sneaky questions.

Best wishes,

Tom

Thank you very much for sharing.

I'm sorry to hear your RLS has progressed so far. Do you regret taking medication for it or was it completely necessary? (I don't have any training in RLS medications, I just come from a sleep and memory background).

Thank you very much for taking part in our study, as soon as you fill out our screener form (linked above) i'll be in touch shortly after with everything you need to get started in your own time.

Best wishes,

Tom

I regret that I have to take medication. It is not a choice, it is a necessity. I would have chosen not to live with the severe symptoms if medication were not available. It's like I imagine being tasered would feel like. It's like being plugged into electricity.

So sorry to hear that - I couldn't imagine. My partner has RLS with migraines (they seem to be a common pairing), but what she has experienced is nowhere near as severe as some of the accounts i've been hearing since I started interacting with the RLS community, who have been so patient and helpful despite everything they are going through.

Oh, I 'm sorry to hear that. All the best to your partner.

Thanks for this - she is coping with it to a reasonable degree we just hope its not going to progress to badly over the years and that the little one won't start showing signs. Best, Tom

Hi again

I've had RLS for decades, but not PLMD.

In 2009 my mild RLS symptoms became severe. At that time my sl;eep was considerably disturbed. For months the most sleep I managed in any night was about 2 hours. Quite often it was no sleep at all. RLS prevents falling asleep in the first place as well as causing early waking.

Symptoms then were only at night. As I was working, naps were impossible but I did manage lie ins at the weekend. I don't recall any memory impairment then.

Thats when I saw a neurologist who prescribed a dopamine agonist (DA). The DA virtually eliminated all RLS symptoms. I retired. I've never noticed any boosting effect from the DA.

Within a few years the DA started to fail, sleep problems again and round about this time I think I may have started with some memory problems.

I did take part in a university dementia study about then which involved extensive memory testing. The researcher told me my memory was better than his.

The loss of efficacy turned into augmentation and eventually, not only disturbed sleep at night but naps during the day became impossible.

I became aware of memory problems round about then, but can't honestly say they're entirely due to lack of sleep, I was over 60.

My STM is most affected, but I'm not sure if this is due to STM loss itself or due to a lack of attention. Sleep deprivation can cause a lack of concentration and mine remains poor. I don't seem to have a problem when I deliberately concentrate on anything.

I also noticed some LTM problems, i.e. difficulty in recalling some things. The things I most noticed was that I couldn't recall the names of people I worked with for years. I did recognise them though.

More recently I have noted that sometimes I am literally at a loss for words, I know what I want to say but can't recall the right word. Unfortunately for the last 18 months I have been taking gabapentin and I believe that is known to cause that particular problem.

Note then that any memory problems I have due to sleep disturbance is due to RLS and NOT PLMD.

I do recall reading a journal article stating that the chronic sleep deprivation caused by RLS/PLMD is cumulative and naps, however restorative they may be individually are not sufficient to correct chronic deprivation. This would to contradict the idea that "restorative naps" can help correct memory impairment.

Please be aware that sufferers of RLS (or PLMD) the consequences can include depression, anxiety, suicidal ideas, destroyed relationships, redundancy, chronic fatigue and a poor quality of life. A little memory impairment then may be barely noticeable.

I hope you find this useful.

Sampsie
Sampsie in reply to Manerva

Hi Manerva,

Your comment about remembering names rang true with me. When I was still able to work, I had a post it note on my desk with my boss's name on it as I just could not remember it. Just a couple of years previous to that, I had completed a post graduate diploma while working full time. I don't know if it was lack of sleep from years of RLS or the gabapentin. Or both.

It was better when I switched to pregabalin, I was more alert, less vision issues and dizziness, daily stomach episodes stopped, memory improved. Then my hair fell out.

My memory is as you describe. I think years of sleep deprivation will almost certainly be responsible, as well as side effects from drugs. But some say since they've been successful on Buprenorphine they are so much clearer and alert.

Your last paragraph is very valid. I hope you're okay.

Manerva
Manerva in reply to Sampsie

Hi Sampsie. I'm sorry I had to laugh. "Then my hair fell out".

🤔

Thanks for asking, I'm not currently suffering any of those things in tha last paragraph as a result of RLS.

Sampsie
Sampsie in reply to Manerva

Hi Manerva, I'm glad I made you smile 😁

Thanks again for the really insightful reply, the best way to reply I think will be for me to just jot down some notes here while I read it:(1) about the PLMs - thats interesting, everything i've read suggests that about 80-90% of individuals with RLS have these, has this been verified by sleep study? So how would you be awoken from sleep without the movements in sleep?

(2) Concentration - absolutely, one of our challenges is separating the influence of just not being able to concentrate and not being able to remember.

(3) Loss of words - no expert on particular meds, but meds with a sedative effect could get you to sleep at night but can affect the depth of that sleep, with resulting cognitive complications. A balancing act the individual must cope with at present unfortunately.

(4) Age is also a massive factor as we all naturally change in our capacity to learn new things as we age and this is reflective in how we sleep.

(5) chronic deprivation - yes a nap wouldn't correct, but could help. E.g., let's say your RLS follows a typical schedule, affecting the first half of your sleep. A typical individual gets around 90 mins Slow Wave Sleep (think memory, cell cleaning etc). If you have RLS this SWS is going to take a hit. A typical nap gives you about 15 mins SWS back, which doesn't sound like much but 17% or so seems significant to me. Its not going to be a game-changer, just one of many tools in the fight against it. I'd love to run a study on this topic alone, but for now we'll have to settle for carrying some sort of secondary analysis on the question (i'll post results when ready for publication).

Thanks again,

Tom

Tom

1) The figure of 80 - 90% of people with RLS also having PLMS is what I've also read. It still means that 10 - 20% don't. My own experience is that I definitely don't have PLMS now and haven't had it for decades. Yet when my RLS is at its worst, if I do manage to get to sleep in the first place I still awake early.

At one time (early 1980s) I only had PLMS and didn't experience any RLS symptoms at all. My wife complained of me kicking her. It never woke me up. I believe the characteristic description of PLMS is that many people don't know they have it because it doesn't wake them up. It does however prevent deep sleep.

Having read many posts on here it is also quite a common experience for people with RLS to be woken up by their RLS symptoms, i.e. urge to move, unpleasant sensation or pain without any awareness of limb movements.

There is another feature of RLS which isn't mentioned in the diagnostic criteria because it's only been discovered through physiological research and can't be assessed by any test available to a doctor. That is that RLS is associated with a state of over- excitability of the CNS. This is due to the imbalance between GABA and glutamate. There is an excess of glutamate.

That is why the alpha 2 delta ligands can be effective for RLS as they suppress the action of glutamate.

They can also promote sleep and reduce anxiety.

Dopamine agonists on the other hand can cause restlessness and early waking, in the absence of either RLS or PLMS symptoms.

3) You may be right, it is known that the alph 2 delta ligands can cause loss of words

They can also cause drowsiness, fatigue, dizziness, difficulty walking, weight gain and blurred vision. It is then for any individual taking gabapetin, like myself, to make a judgement about whether the benefits outweigh the side effects or vice versa.

Luckily for me, the benefits are greater than the side effects. This isn't true for everyone and then they're faced with a dilemma, especially if they can't return to taking a dopamine agonist becasue of augmentation.

5) I wasn't aware that a 15 min nap can give some SWS. Thanks for that.

Unfortunately for those suffering augmentation, naps aren't possible.

Hi Tom

Thanks for doing research on RLS. We are totally ignored by the medical profession so any research is welcome.

My circadian rythym means my RLS plays up for at least 2 hours a day- usually between 11pm and 2am. I sleep 7 hours in 3 sessions between 3am and 12 noon-1pm.

I take low dose opioids and sleep whenever & wherever I can. When on dopamine agonists I couldn’t stay still for more than 2 minutes because of severe augmentation so sleeping in the day was impossible but strangely I could sleep at night.

Anyone taking dopamine agonists will find it hard to nap in the day once augmentation has occurred (90%of cases after 10 years).

I’ll try out the online tests.

Thanks for sharing - so i'm not a medication expert at all, I come from my own little bubble in the sleep and memory world. That being said, DAs sound like they carry very serious consequences attached to them.

Yes that 11pm-2pm window fits with the literature, this would impact the first half of your sleep more than the second.

Excellent, if you have filled out the screener you should now have everything you need to get started when you are ready!

Best wishes,

Tom

This is certainly true for me. So much so that I have switched to working night shifts. I do between 3 and 4 shifts per week. During this time I get up at 7am on day 1 to go back to bed in preparation around 1pm. Getting up at 6pm, starting shift 9pm. Then following on I'll be in bed by 9am - 6pm.

I find during the night shift I can get twitchy legs when I sit too long but I just get active again.

I do have to jiggle meds around too, due to switching from day to night sleep but that's not really a problem.

It's almost as if switching from day to night sleep tricks the body.

Good luck, I hope you get some positive results with your research.

Thanks for this - a rare story in the sleep world of someone using night-shift to their advantage!

Hi my name is vera .. i am 50 yrs old , ive had rls since early 20’s. In the begining stages it did seem to affect me right before bedtime as i would lay down to sleep .. throughout my 40’s i started to notice symtoms would start early morning when i would get to work and sit at my computer ..at times when i would be in my car driving and as usual before bedtime .. ive been taking ropinrole for many yrs now.. which does help but i. Order to avoid the drousy side effects i would take 1/4 pill with a cup of coffee and before bed i will take 1/2 a pill then take a hot bath and soak then only if needed take the other half .. and because the pill takes about 1/2 hour to work i will chew them .. RLS is no joke it has compromised my life in many ways such as i cant go to a movie theater .. i dont go out to eat because i cannot sit for long periods of time without that irritatating feeling that overcomes me .. i even get RLS feelings in my arms at times and also is very irritating .. Every doctor ive asked has no idea why , they just know what pills to give u .. ive tried vitamens .. iron folic acid potassium extra water . And nothing takes away these horrible feelings .. Good luck! I hope someone can figure out where this comes from and why.. im leaning more towards maybe nerve compression .. during the day sitting seemed to bring it on ..laying down on your backside can possibly still compress nerves ? I do now and always had back issues with lower back from L3-4-5, S1 .. but for the arms to feel the same feeling i cam figure that unless it comes from the cervical area ? Maybe it the nerves coming from brain sending signals creating this ?? I hope u figure it out .. Vera

Thank you for sharing in such detail.

I'm sorry to hear your RLS has progressed. My partner (33) has RLS and whilst she is managing at the moment, progression is always the worry.

In terms of causes of RLS - the answer is usually that there are several answers. What we are most interested in is learning more about is the impact on sleep and memory. It feels as though many RLS individuals would have a better fighting chance if they could sleep at night and wake up refreshed in the morning.

Best wishes,

Tom

Joolsg
Joolsg in reply to Saint1970

That is classic augmentation caused by Ropinirole. You have RLS earlier in the day & it’s moved to your arms. It’s a sinister drug and Augmentation creeps up on you and you don’t notice your RLS is much more intense.

I was on it for 16 years ( way above the recommended maximum of 1mg)& it moved to my arms, back, trunk & FACE!

I strongly recommend you read all the links on Augmentation and slowly reduce by 0.25mg every 2weeks.

I now only get RLS in my legs & only in the late evening.

There are better drugs for your RLS- and if you raise serum ferritin above 250 you may find you won’t need meds.

Good luck.

Hello Tom. I have had RLS for about 15 years and was first prescribed Pramipexole which worked for three or four years before augmentation but, at the time, I did not know what augmentation was. I suffered sleep deprivation for a couple of years and found a nap in the morning the only solution. Eventually I read about augmentation and told my doctor , who was less than helpful as he had not heard of it. I told him I would wean myself off Pramipexole which I did over three painful weeks of getting little or no sleep. I asked the doctor for Gabapentin and by experimenting with times of taking it I now have settled with one tablet at 8pm and a second one as I go to bed at 10.30pm. I usually sleep now for 7/8 hours with one or two visits to the toilet (due to old age and weaker bladder). Regarding memory, I have difficulty in remembering names and this may be due to the Gabapentin or old age (I am 82), I am not sure.

Good luck with your research, it is so necessary.

Thanks for this - i'm not a physician so what do I know but it feels as though a little chat about potential augmentation with a dopamine agonist might be helpful to the patient.

Yes haha age is the single greatest contributor to memory effects. The science behind it is that memory consolidation (forming a solid long term memory from a newly learned trace) is the result of a fine-tuned synchrony of processes, with the synchrony being a little less efficient as we age. This process is already underway by my age too (32) haha.

All the best,

Tom

I am definitely interested; am definitely a human being but you various animals are driving me nuts! It’s 0209hrs here, my allergies (complete w/bad cough) aren’t helping my disposition any & I really couldn’t care if a Bull is “facing up”! So take pity on someone who is much ly interested in your RLS study.

Tom

You're getting a lot of good feedback here and I hope it helps with the research. Here is my own experience with RLS. I'm male, aged 68 and live near Glasgow. I'm classed as having severe RLS.

I cannot remember exactly when it first started but it was about 17 years ago. My wife started complaining that she was being woken up in bed by my body twitching. Then the twitching started waking me up as well. My GP then referred me to a neurologist who confirmed that I had RLS. I was then prescribed the minimum dose of Ropinirole and the first night I took it was wonderful. I actually felt my body relaxing and I slept though the night. I was on 6 monthly appointments with the neurologist and as time went on the symptoms returned and he slowly upped the dose. At the same time I was trying other non-drug related options e.g. taking iron supplements, etc but they did not work. I also discovered that certain foods caused the symptoms to worsen e.g. too much sugar, salt or caffeine, any alcohol at all.

The RLS presented itself in me in two ways:

1. When sleeping then my body would jerk from my stomach (and I often woke up with sore stomach muscles)

2. When sitting in a car, or even worse in a plane, my legs would get very sore and jerk. I found it best to drive rather than as a passenger as the symptoms were a little less.

However I was up at around 3mg when I started to get a sort of "tingling" sensation in my arms which got so bad at times that I was unable to type at a keyboard (I'm a software programmer). So the neurologist tried me on the Gabapentin patch but it did not work at all for me and he then put me on Pregabalin. This helped and I've been on Pregabalin ever since.

I then reached 4mg of Ropinirole but then started falling asleep in from of my computer, and coupled with the "tingling" in my arms I would then got out and walk around for half and hours before typing again.

I was now experiencing augmentation with the symptoms appearing earlier in the day, unable to snooze during the day and legs jerking even as I sat waiting to see the neurologist. This was happening as I was nearing retirement and so we agreed that I should start reducing the Ropinirole down to zero and then take it from there. Well it took a year to get there and it was a very tough time. There were nights when I was so tired that I was literally falling asleep on my feet (I would walk around to help things) but then I'd be jerked awake again by my legs. Until you've suffered RLS you have no idea how it feels.

Anyway (this is developing into a saga!), once I'd got down to zero DA then I simply did not sleep at all for several nights and I was prescribed sleeping tablets. No real impact except for episodes of sleep walking. Then he mentioned Pramipexol and again the minimum dose really helped me for 6 months at the start of last year. So during the summer I switched between Ropinirole and Pramipexole and that worked quite well for a few months but then I started needing to up the dose again. My GP tried me on Amitriptyline as apparently it helps one to sleep but I stopped that as soon as I read here about its negative effect on RLS.

I'm now on "maintenance mode" with the neurologist as there is nothing more he can do for me.

So 2 months ago, having again read about it here, I asked my GP to let me try Temgesic (200mcg). And so for the first time in years I actually slept through the night. I am still on 300 mg Pregabalin and did try to reduce it but only managed for a week on 200mg before I had to return to the 300mg due to waking up again in the night. I also started taking high dose of vitamin D.

However I am now occasionally being woken up with jerking (both in the night and during the day if I try to have a nap) and I'm not sure of the next step. I don't really want to up the Temgesic as it does make me more subdued/drowsy in the morning.

So I hope this journey is of help.

Thanks for the very detailed response much appreciated.

I'm not a physician but it really saddens me to here the medication journey individuals have to go through on RLS, being put on several powerful drugs experimentally until one, if any, sticks, that must be really difficult to go through.

It sounds like you have tried everything - the things that i've heard of that aren't listed in your response are (i'm sure you'll already know about these): (1) weighted blankets (2) massager (3) magnesium (4) meditation, e.g., transcendental.

If you try the study let me know how you get on.

Best, Tom (also from near Glasgow, little town called Dumbarton if you've ever heard of it!)

Hi Tom, you might be best asking people who have RLS but have never used medications with a known effect on RLS. In the experience of many on this forum, such meds can change things, sometimes seemingly irreversibly. I first experienced RLS taking an SSRI medication over 20 years ago. I wasn't taking anything to control the RLS at that point, not even having knowledge of the condition.

At that time, any time i lay down in the daytime, I experienced RLS to the point I couldn't nap. I have taken medication for RLS/PLMD for approx 8 years now. When I reduce medication (that I take for RLS), I notice those same symptoms recurring.

So, to answer to your question "no, it doesn't fit with my experience ".

Two more things to note, even moderate exercise and menstrual cycles affect my RLS considerably .

All the best.

Tom_York_Psych
Tom_York_Psych in reply to Amrob

Thanks for this - yes you are totally correct, we will be carrying out analyses on both RLS-meds and RLS-no-meds and matched-controls. We don't have the scope to get really stuck into the effects of the medication, but we will be able to make some broader statements about whether meds and having a general effect on sleep and memory which is a decent starting point.Best wishes,

Tom

Thank you for taking such an interest in this devastating condition.

I think Amrob makes a very important point. Almost all the available prescription medications seem to alter the presentation of the condition.

When I first experienced RLS it presented at night time. At that time in my life I was unable to take daytime naps easily due to factors other than rls (young children) but my recollection is that my untreated the rls was not present in the daytime (it is 18 years ago and my memory is a little hazy).

Now (post augmentation and a variety of other drug treatments), presentation is much less predictable. It does tend to concentrate through the night but it also comes on at different times during the day. I will never know for sure, but I'm pretty convinced that the change was caused by the dopamine agonist treatment over a prolonged period.

In terms of impact on cognitive function, my short and long term recall is definitely much worse on the days when nocturnal sleep was disturbed due to rls but I am managing to hold down a fairly cerebrally challenging job (barrister), albeit not completely full time.

Thanks for this - the daily experience you are describing seems to be that of many individuals who have had RLS for a longer period of time unfortunately.

Yes it's definitely true that the data we get from RLS individuals on medication will be messy, but there are statistical ways to make meaningful use of it. Even if just to say "we took a random sample of medicated individuals with RLS and found impaired x,y,z" this makes a statement about RLS in the real world (we will also be carrying out some much more controlled analyses too). I'd like to look into the cognitive impact of specific medications (most notably probably dopamine agonists and augmentation) but that was out of the scope of this study.

Best wishes,

Tom

I am able to nap without restless legs, but I have a lot of pain in my right leg which I think may be a result of the ropinirole, so that can interfere with my nap. I am currently reducing my ropinirole, but did not have augmentation.

Thanks Sue. Best, Tom

RLS for me - not so bad currently - assuaged with iron therapy. But, when it was raging - there was no napping at all! I can best describe it as a constant buzzing in my feet during the day, then at night a quick lay down, with maybe an hour of sleep - I'm up, even though I'm exhausted! On and on - not knowing even what RLS was. The feeling during the day was "Tired but Wired". The reason I could endure and actually go to work every day was (my best guess) a preponderance of the excitable neurotransmitter Glutamate over the relaxing neurotransmitter GABA. This mismatch STILL affects my sleep in spite of many, many, self-styled diet and supplement therapies to control this.

Good luck with your research!

Thanks for this Dic,That's really interesting about the iron therapy. It's long been known that iron is deficient in RLS, and assumed that supplementing iron would help. The jury is still out on this - but there is some evidence (which may turn out itself not to be supported) in the scientific literature to suggest that iron supplementation doesn't address the core iron deficiency in the brain (basal ganglia I believe, part of the brain involved in motor control).

So you find the iron therapy helpful?

Best,Tom

Well - here's the deal. Spring 2016 - Ferritin level was 49, raging RLS even in my arms. This is pretty much "sudden onset" other than growing pains and being treated for iron deficient anemia as a child (now mid 60s). Any way, I read of Black Strap Molasses as a "home remedy". Sure, I'll try that - I would try anything! And it cut into the severe need to move my legs. Next, with Ferrous Bisglycinate Chelate - daily supplement 18mg literally stopped RLS in its tracks. I do not take any nor have I in many months. Ferritin went to 105 in 3 months. Just had it checked 115 very recently.

But, the question to me remains - why was I iron deficient in the first place. There's more to this than we know.

Johns Hopkins University neurology dept provided me with the lead that it might be an iron deficiency... "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy on average improved RLS symptom after 3 months."

hopkinsmedicine.org/neurolo...

Thanks for this - a very interesting read, i've added it to my reading list that i'll revisit after the results come in. It would be really good to be privy to our sample's iron levels but under the current circumstances that would require a herculean effort.

Best wishes,

Tom

When I got my diagnosis of RLS, it was such a relief (bizarre I know), because it was the first time for 12 years that I could believe what a doctor was saying to me. As a woman, most of the symptoms I had prior to this diagnosis were dismissed as menopausal'. I feel sure now (experiencing a benefit from Iron treatment, with an initial reading of Ferritin of 50) that the 'trigger' for RLS for me was iron deficiency.....and I am sorry for the gory details BUT.. I had a caesarian with my first child, suffered anemia, got iron tablets briefly, had a second child, lost 2 litres of blood, suffered anemia, got iron tablets briefly, lost my third child half way through pregnancy (the doctor said 'failure to thrive'), lost my fourth child similarly, had massive issues with fibroids and a subsequent hysterotomy, had iron tablets briefly. RLS began about a year after that, undiagnosed for twelve years. If my RLS didn't start because of a lack of iron.... Interestingly not once in all of this saga, until three months ago did I ever get a Ferritin reading!

Hi Tom, I've only recently in the last 5 years found that RLS has become a problem although I believe I've had very mild symptoms since my 20's. I don't yet take medication for this although have experimented with iron and magnesium supplements of which the latter may be having a slight benefit but difficult to tell. I rarely get more than 2 hours sleep at a time and possible 4 - 6 hours a night. The normal routine is that I go to bed around 12 or 1am with no sign of restlessness feeling tired but calm and within an hour I am awake twitching which means I have to get up and move for 10+ minutes to be able to settle again. That repeats through the night probably 3 - 5 times. Occasionally (2-3 times a month) I get restless sensations before I go to bed but these almost never start before 11pm. I try not to sleep during the day but when you are permanently tired I get caught out and nap for 30 minutes to an hour. However I don't ever recall any RLS sensations or movements from daytime napping. I'd be very interested in helping as it's incredibly frustrating to feel normal for 18 hours a day and then to have these sensations just at night. I believe there is a circadian component but I feel that the actual process of sleeping must change something quite substantially as things don't normally start until I've been asleep at least once. If I stay up to 3am then I normally won't get restless until I've gone to bed. At the other end of the night I sleep best between 6 and 9am and feel less restless between these times.

Thanks for this detailed response - having all these interactions with the community has given me some really interesting ideas that I need to chase up (I can't really share them at this point because they are very much pseudo-science at this stage haha).

We'd love for you to take part in the study, just give me a message if you have any questions along the way!

Best wishes,

Tom

That is exactly how I recall my rls presenting before I started mirapexin.

Hi, thanks for the reply. Can I ask whether the Mirapexin helped?

It was like a miracle at first. It banished the condition completely.

Then I needed more and more of it to get relief.

Then symptoms started to appear during the day and were WILD in the evenings before I took the mirapexin.

Symptoms spread from legs to arms and torso and I was not able to sit in a chair in the evening without being literally jerked into a standing position over and over.

Then I had to withdraw from mirapexin (augmentation) which was the hardest thing I’ve had to do (and I’ve given birth - accidentally without pain relief - and - more recently - courtesy of my rls - withdrawn from opioids). I got barely any sleep for nearly 7 months - like maybe two or three hours sleep a week. I would fall asleep walking across a room.

Now my symptoms are permanently worsened and I’m pretty sure it’s because of the mirapexin and not just the progression of the disease.

If I was back at your stage again the first thing I’d do is make sure my serum ferritin was over 300. I’d insist on an iv infusion of iron if it was lower before I’d try any drugs. Then - if that didn’t help - I might try dipyridamole (unless it was counter indicated - it’s a blood thinner) as that’s a very reversible drug with few side effects and there’s a study which shows a good outcome for rls sufferers who haven’t had other prescription treatments.

If those strategies didn’t work and my rls was troublesome, I might actually try the mirapexin (and I realize I’m going against the general tide here) but only while my serum ferritin was over 150 and I would never, ever increase the dose above 1 x 0.088mg tablet per day. I would use breaks and maybe kratom to manage habituation.

The other option (other than opioids which aren’t usually used as a first treatment) is gabapentin/pregabalin which I’m not a big fan of but might be worth trying (it didn’t help my rls much and I am suspicious of the side effects as it hasn’t been round long enough for the long term impact to be fully assessed but apparently has a better outcome for people who haven’t augmented on a dopamine agonist).

Apologies for the long answer - I sometimes wonder what I should have done differently so your question caused an out-pouring!

Thank you for taking the time to give me that answer. It seems to back up what most people say about DAs and augmentation, which sound pretty bad in your case, I'm sorry to hear. It's very difficult to look back and wonder what might have been. I took pregabalin for a different issue - neuropathic pain related to back problems - and while it seemed to calm some things down, when I came off it I think my RLS got worse by a step change .. difficult to say in retrospect as I wasn't aware it might be a possibility. The pregabalin helped me through a stage when I was very unhappy and unsure about my other symptoms so I don't regret it but again I wonder whether I could have avoided it. In general I try to stay away from meds until it's essential and nothing I've seen here makes me think otherwise. There are positives in that a few people are doing important research and possibly coming closer to what links RLS with Iron/opiates/DA/pregabalin type drugs and identifying the root cause so I'm going to put off medication as long as possible. All the best.

I think you are wise in this approach. A few other non-pharmaceutical management tips (in addition to the cold water which does sometimes help for me) that have a proven track record judging by past post are: yoga stretches for about 20 minutes - especially leg stretches; compression stockings (divides the community starkly but markedly effective for those it works for); 20 minutes of a very diverting activity such as a computer game (reading, tv and number puzzles are not sufficiently diverting) - weird but proven; a cup of coffee (to do with adenosine receptors); chewing (vagus nerve); nicotine gum (it may be the chewing and obviously not highly recommended for other reasons); hot bath with Epsom salts (magnesium) these followed by a cold shower can be helpful.

Moderate but not excessive exercise can help.

Also dietary changes can be helpful - many people find eliminating sugar and generally a ‘clean’ diet is good (although, again, there are exceptions). Some people find going to bed hungry helps (also good for waistline). The fodmap, low oxalate, keto and vegan diets all have strong adherents.

Identifying triggers (can be very elusive) and avoiding them is obviously also important. Many people find ice cream bad.

Good luck. It is refreshing and interesting to have people on the forum who have never been on medication.

A big thankyou for supplying this list of none medical suggestions, over the years ive tried a few things out, that have worked for a while but i seem to have reached a point where my remedies are failing.

Id never considered diet might be a factor so following comments here, over the last few days have cut out caffeine and alcohol and reduced sugar, so we'll see if that has any effect

Im really sorry to hear you've had it so bad over the years but your "outpouring" as you put it, i think is a goldmine of really useful information and suggestions for others who are potentially in earlier stages.

Comments on Ferritin levels are particularly interesting as ive recently had a blood iron test including Ferritin which came back as "normal" apparently, from comments here and some googling, normal can be anywhere between 20 and 300 depending where you look , as such ive gone back to request the actual numbers .......

It drives me crazy that GPs are so coy about giving the actual number for serum ferritin. They seem to be determined that we have as little hard information about our own bodies. This 'normal' is a recurring theme.

Thanks for your comments about my 'outpouring' - it's surprisingly uplifting to feel of assistance.

Just to say finally, that there is a surprisingly large number of sufferers who find that a cup of coffee can be helpful for their rls. As I said, it is to do with its effect on adenosine receptors. I understand that decaffeinated coffee is as good as the caffeinated version so that might be worth a try for you.

Good luck.

Retro_bob
Retro_bob in reply to Munroist

Hi Munroist , just joined this site and was reading all the posts and when i read yours realised you were describing my symptoms almost word for word.

one thing ive found works after much trial and error is showering my thighs ( only ) with cold water. basically about 5 mins each or until they go numb. once back in bed ive found this sorts me generally for the rest of the night.

thought you maybe interested as symptoms are so similar

regards

Munroist
Munroist in reply to Retro_bob

Hi Bob, thanks for the reply. I've seen something like this before and briefly (one night) tried a version where you went from hot to cold and back to hot again but it didn't work and was too unpleasant .. (yes I know I'm a wimp). However I'll give it another go for a couple of nights. I've just tried a different suggestion which was doing squats and that didn't work for me. I think you need to have a sense of humour with this thing.

Retro_bob
Retro_bob in reply to Munroist

Hi Munroist, i tried warm / hot water and that did nothing for me, and im certainly not saying getting up a 2am to hose my legs with cold water is my favourite pastime , but needs must as they say.

I tend to start luke warm and then go cold to ease in, just a few minutes on either thigh, i find is enough to really deaden your muscles.

Ive not done squats, but a version which worked for me for a long time, which is crouching down in a sitting position so all your weights on your thighs and leaning back as far as you can. then just hold it as long as you can till your thighs are really burning. Ive a (non medical) hunch the lactic acid build up over rides what evers causing the RLS. I appreciate not everyone maybe able to do this but it was my goto self medication for quite along time. Unfortunately as with everything else its seems to lose its effectiveness over time although i still try it with mild attacks and it occassionaly cures it for the rest of the night

Munroist
Munroist in reply to Retro_bob

Well .. I can see how it helps, the areas I gave a cold shower did seem to calm down and feel less twitchy but the rest of my legs, feet calves and a bit of waist continued to twitch. I'm not sure what would happen if I had a total cold shower but for me I'd prefer to walk around for 15 minutes and unload the dishwasher rather than do that. I might have a go in the summer .. Thanks again.

Wow I think you might hit the record for number of responses.

Out of curiousity, would you mind telling me how REM sleep fits into this.

I have a misimpression that REM sleep was important restoratively for cognitive processes and SWS more important for physical restoration,

If so, I'm not sure how RLS or PLMS interfere with REM sleep,

Hi again,

Yes the response has been excellent so far. I never made it clear but i've been collecting data for a good few months new and only need another 40 or 50 participants so big thanks to Dr Julian Spinks for letting me interact with everyone and big thanks to everyone for your helpful responses and for taking part - I should be finished data collection in the next month or so at this rate.

We are learning more all the time, but a few points about REM vs SWS:

(1) you could probably pretty confidently map out SWS as being very important for declarative memory consolidation (see Rasch and Born, 2013 for a very influential review) and also for washing out cells with cerebrospinal fluid (helps prevent neurodegeneration, e.g., Alzheimer's disease, note we get much less SWS by about 65)

(2) Similarly, REM is thought to be very important for things like procedural memory (riding a bike) and emotion regulation (see Goldstein and Walker, 2014, for review -e.g., REM is costly in terms of neural resources, so too much REM, think depression, can result in a lack of these resources which are also needed for daytime emotional functioning).

(3) This isn't the full story - whilst they are separate processes, it clear that they are also part of some grander synchronous effort that we don't yet fully understand, but we do suspect they influence each other and work together (see sequential hypothesis, idea is that since REM happens after SWS, many think REM is taking what SWS gives it and performing further operations on it).

(4) in terms of RLS - since a "typical" RLS experience (I know, I know) would involve PLMs in an RLS individual disrupting the first half of the sleep cycle, which is dominated by SWS, you'd expect a memory deficit. What is interesting is that RLS individuals following this pattern wouldn't have directly-disrupted REM because REM mainly occurs in the second half of the night's sleep. This makes RLS a really interesting population to me because its unclear whether (a) if REM is okay then do we specific deficits in some areas and zero deficits in others or (b) since there is this grander synchrony at play, do we see a general deficit in cognitive tasks - breaking part of the machine affects it all?

Best wishes,

Tom

Tom,

Another interesting thing I’ve noticed since starting to use a sleep monitoring wrist band is that my ‘deep sleep’ is usually 45-50% of my 7 hours sleep ( even though I get that 7 hours in 3 sessions over an 11/12 hour period). The app states that I get more ‘deep sleep’ than 100% of other users.

I also don’t have any PLMD - I am woken by RLS leg jerks.

Very interesting, a couple of points:(1) i've also just done a pretty hefty literature review on actigraphy vs polysomnography vs fitbit etc and I can say that they aren't awful, I think that they can be a nice lifestyle aid if taken with a pinch of salt, but it is very much an emerging technology and the accuracy isn't there yet. They are pretty decent at estimating how much you have slept, but not so much for sleep stages. BUT note that the accuracy for these watches goes down further if you have a clinical condition.

(2) Thanks for the point about leg jerks vs PLMs - I naively thought that PLMs were just leg jerks in sleep that the individual was unaware of because they were asleep, am I wrong?

(3) 50% "deep sleep" - that shouldn't be the case, and my guess (can't really say without doing polysomnography) is it's to do with the wristband. One possibility is that it's banded together REM sleep and Slow Wave Sleep (SWS) as equating "deep sleep" which would be closer to 50%.

Best wishes,

Tom

I think you’re right- I do take the wristbands with a pinch of salt but psychologically they helped as they improved my perception of sleep.

PLMD leg jerks don’t wake the sufferer- most people don’t even know they have it until their partner complains about the constant movement.

Those of us with RLS are woken by the leg jerks. I have no idea why there is this difference- maybe more in depth, long term sleep studies would shed some light on this?

Yes that's fascinating - the papers I read never made it clear that there was a difference. Usually it just reads along the lines of "around 80-90% of RLS individuals experience periodic limb movements in sleep. They are aware of the uncontrollable desire to move their limbs during wake, but are mostly unaware of PLMs during sleep."

So just to be clear - you think they are definitely different things, and not just that bad PLMs wake people up, and not so bad PLMs go unnoticed? That would definitely change how i've been thinking about things a little bit.

Best, Tom

I definitely do not have PLMs during sleep.

My best sleep is during the early morning- 6-noon & I often sleep on the sofa. My husband has commented that he often thinks I am dead as I’m so still & don’t move.

There is so much that is unknown about RLS because so few studies have ever been made.

The ‘literature’ says to avoid caffeine, alcohol & sugar but if you spend some time on this site , you’ll see that this doesn’t apply to everyone.

Some people noticed that coffee actually helped their RLS and personally I find sugar and coffee both help my RLS and alcohol makes no difference.

Magnesium is another area where studies are needed. A lot of people completely resolve their RLS by taking oral magnesium or rubbing magnesium oil on their legs. Makes no difference to mine.

Iron infusions ‘dramatically’ improve RLS in 60% of patients, yet several of us have persuaded our doctors to give us iron infusions, have raised our serum ferritin above 350 & seen zero change. Yet another area that needs detailed research & study.

Bearing in mind this disease is the most common neurological disease in the world with the highest suicide rate and the highest economic impact of all other neurological diseases combined, it is appalling that no money is available, or studies on causes or new treatments is being carried out in the UK.

It’s something most of us feel powerless about.

This is an excellent reply.

I find it strange that the larger pharmaceutical companies do not take more of an interest in rls - I would have thought, given its prevalence, that there are rich pickings to be had in innovative treatments.

Perhaps it is an insight into how difficult a condition it is to investigate and treat that it fails the cost benefit analysis.

Or maybe it just attracts less interest because it is more prevalent amongst people later in life and they are often overlooked even when they are a potential source of good revenue.

PLMs are definitely different from RLS urge to move symptoms. I don't have PLM - and many RLS sufferers don't - but, as I understand it, they are like an involuntary movement without accompanying sensation (other than the actual movement of the limb). With RLS the sensation is of an 'urge' to move. It is possible to suppress the urge but it is deeply, deeply uncomfortable. The urge rises almost like a wave from deep within and reaches a crescendo when it is alleviated by the actual movement of the leg by the sufferer. Each individual urge lasts about 10 - 20 seconds and is immediately followed by another. It is hard to describe how horrible the sensation actually is.

I think you may be correct about the presentation of untreated rls in terms of the time in the night. My memory is that typically it would come on almost immediately after I went to sleep and would abate by about 5.00 am. My then sleep consultant described it as being influenced by the circadian rhythm but she turned out not to be particularly well informed so I'm not sure ...

sorry about the delay - i've had to pull myself away for a few days. This response was incredibly helpful and one i'll be bearing in mind moving forward when its time to analyse data, design new studies etc.Best, Tom

Thanks Tom, I'd say for myself that REM sleep isn't a problem. I think I get enough.

When I was taking a DA, one of the consequences was sudden drowsiness during the day. I have been known to fall off a chair. Subjectively, it almost seemed I went into REM whilst still awake!

One second I was in a meeting, the next I was in a forest or some fantastic place. I was woken by the sound of laughter.

Sorry about the delayed response i've had to focus on other commitments the last few days.

Thanks for this - "sudden" drowsiness sounds very unusual! Typically an individual will be fairly consistently fatigued after chronic sleep deprivation - i'm sure you are already very aware of this but have you read anything about narcolepsy?

As well as this, if you feel you are falling into dreamland very quickly the REM you are experiencing in these naps could be compensatory, (REM is one of these things where if you miss it the brain will trigger extra to catch up, not so much the case for SWS).

Personally i'd rather be in the dream forest than a meeting haha.

Best wishes,

Tom

Hi Tom,

thanks for the response.

Sudden onset sleep spells are known to be caused by the dopamine agonists. Other members of this forum have reported it. I'm certain it's not narcolepsy.

I agree it's better to be in a forest than a meeting. That's possibly why I fell asleep, the meetings were so tedious. :-)

my experience is that my r.l starts an hour in to sleep usually i rarely nap that long but i will get problems after 20 to 30 minutes while napping

thanks for this - so you wouldn't really describe your symptoms as being tuned in to your body clocked and following a pattern, they just come whenever you start sleeping? Would the RLS kick in after 20-30 mins of some other relaxing activity, e.g., meditation, or just sleep? Best wishes, Tom

i am lucky it seems as im only effected when im asleep mostly,but reading some of these agonising stories i think if mine ever reaches these levels of misery death would be a relief

Hi There, There is no question that my RLS has a predictable pattern, and is also connected to hot flashes (menopause is just an additional cherry on the Sunday) and what feels like an adrenaline surge. Thanks for doing research.

Hi Tom. I am sorry but I f**ked up the second part of the test. In my tired stated I clicked through to the memory test and when I saw the pictures come up in the middle of the screen and not change until I clicked on them I thought I had to remember the order they came in and just kept clicking as I added them to the chain in my mind!

I had a whole story build about a dog (paw print) who was in a pineapple musical (pineapple music note) through to his wife (ring) asking him to take the teddy (teddy obviously) to his kids in the house (house).

Damn I would have done a really good job if I didn't do a really bad job :)

Sorry.

Tom_York_Psych
Tom_York_Psych in reply to raffs

No problem at all - so what I can do is send you a direct link to the game by email and if you could spare a couple of minutes to do it i'd appreciate it.

So all you have to do is try and remember the location the object belongs, not any order they appeared. Let me know how you get on.

Best wishes,

Tom

raffs
raffs in reply to Tom_York_Psych

Have it done - right this time. I got over twice as many right this time (sounds better than 5).

Tom_York_Psych
Tom_York_Psych in reply to raffs

sorry for the delay, i've been pushed and pulled the last week or so with other important competing interests (namely an upcoming performance review haha) - thank you very much sticking with the study, we have your data now! Best wishes, Tom

I might not have mentioned but we are also running a prize draw at the end of data collection - if you win any money i'll be in touch!

Thought you would be interested in this:

Potassium Citrate has stopped my Restless Legs. It Works !!!

I decided to try potassium citrate as described in the study at

medcraveonline.com/PPIJ/use....

I started 1100 mg 51 days ago. I have been tapering off ropinirole by 25 mg every 2 weeks and clonazepam .125 every two weeks. I was down to 3.5 mg ropinirole 22 days ago and 3.25 mg 8 days ago. I was down to ,375 mg clonazepam 17 days ago and .50 mg 4 days ago. I have had only one instance of restless legs in the last 9 days. So I decided not to wait two weeks to reduce the ropinirole and reduced it to 3 mg last night. Still NO restless legs. My conclusion is that the potassium citrate is working !!!

Joolsg
Joolsg in reply to SueJohnson

Sue- I reduced from 4mg to 2mg Ropinirole quite quickly and had a paradoxical massive improvement in RLS. I was convinced I no longer had it.

The improvement lasted several months/ until augmentation kicked in again.

It might not be the potassium citrate.

Hi Tom, I'd be pleased to help with your research. Quick answer to your question. If I'm having a 'bad day' with RLS, there is no question of getting any sleep. Pain requires concentration and the only way to deal with that is distraction and movement. Even the dogs don't want another walk on those days. I have made a lot of cakes that I don't eat!

Thanks for this - your point about concentration is really interesting to me. This is a bit of a vicious cycle - RLS disrupts sleep > you wake up tired > RLS is painful > you need to use a lot of mental resources to manage the pain > this makes you more tired > can't get to sleep > the sleep you get is broken > you wake up unrefreshed but still need to concentrate, awful,

In terms of research, i've not read any research investigating the impact of this cognitive resources issue, i.e., having to divert a lot of your attention to symptom-management, something i'll definitely be bringing up with my supervisors. Best, Tom

Did you manage to give the study a go?

I did do the study, thank you for involving me. I think and I'm not sure if others will agree that the vocabulary for RLS may have to change. The word 'tired' doesn't really cut it. I have had babies and had to do the whole feeding every two hours through the night, and yes that makes you tired. RLS tired is a different thing. One of the sufferers described 'tired but wired' and I think that is a closer description. Jangling is a useful word. It describes the constant need to move to manage the pain, the exhaustion, the need to sleep at the same time as the inability to sleep, and the 'fizzing' that is in your muscles. It conjures up an image of a cartoon character leaping about with sparks flying off, and whilst I'm sure that is not what I look like, that is how I feel I look like!

For the cognitive issues this is one of several articles that I found whilst doing some research on ecotherapy for hospital designs, it may help McCaul, K. M. J., 1984. Distraction and coping with pain. Psychological Bulletin, 95(3), pp. 516-533. I hope it helps

Alice

Thanks for this - yeah a few people have mentioned tired but wired, there seems to be something to what you are saying for sure. We have quite a few measures on the go for daytime functioning in this study so i'll bear this in mind when its time to interpret the results.Best, Tom

Something I never got round to mentioning btw: at the end of the study we are taking all the email addresses, and picking out 3 at random and giving a £50 amazon voucher to each as a thank you (and then deleting them of course in the interests of data protection). Thanks again for the help its been amazing. Best wishes, Tom

Well that was humiliating. Just done the first session. I honestly think I’d fail it even if I were not sleep deprived. My memory is one of my strong points- I find exams easy BUT weird tasks like this are for the younger, computer literate kids.

I can score highly in University Challenge & Who wants to be a millionaire but I can’t do these memory tasks at all. I think I scored zero on ALL of them. Tomorrow may well be even worse.

Thanks for doing this Tom.

Jools

Thanks for bearing with the study. A few pointers:(1) just to double check, you aren't dragging and dropping ? You are only supposed to tap or click the correct location.

(2) things like university challenge and who wants to be a millionaire tap into crystallised knowledge accrued over a lifetime, we are more interested in processing power for what can learned right now

(3) this is a tough test - the test needs to be hard enough that we can capture as close to a full range of human performance as possible

(4) some people really take to the test, e.g., a young cousin of mine absolutely maxed in about without any sort of academic pedigree or anything behind her, and some people naturally struggle (a lot of very clever people I know have underperformed on this task whilst being otherwise brilliant) - i wouldn't feel bad about it.

(5) there are a number of factors which influence score (which is why we aren't interested in individual scores and more on sample level patterns - (a) if you are sleep deprived; (b) if you are of advanced years shall we say; (c) If a large amount of time elapsed between taking the test and going to bed; (d) similarly, if a large amount of time elapses between waking up and doing the re-test etc etc - all we can do is factor these things in over 100s of participants, any individual snapshot of a single participant's performance is very circumstantial.

Hope this comforts you a bit, and please do go on to complete Session 2 - it's this sort of data which proves to be very valuable to us - if only the people who found the task easy completed it we wouldn't get very far. Best wishes,

Tom

Asgh- I was dragging & dropping.

Clearly my processing power needs work.

I’ll do session 2.

Thanks Tom.

Jools

Hi Tom, I would be interested in this as I suffer very badly at the same time most nights.

Sorry to hear that, and thank you very much for helping us out!

Best wishes,Tom

You may also like...