Does anyone else have poor sleep even... - Restless Legs Syn...

Restless Legs Syndrome
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Does anyone else have poor sleep even with RLS symptoms under control?

silkusmaximus
silkusmaximus

38 year old male. Was diagnosed with RLS 10 years ago, alternated between Ropinorole and Pramipexole, they both work in so far as my sensations in my feet are nullified and show no signs of augmentation.

However, my sleep quality is terrible. I sleep very lightly, wake up in the night, sometimes can't get back to sleep, not because of any sensations in my feet etc, I just wake up, usually my mind is quite active. I can sleep for 8 hours but feel shattered the whole day. I always have dark shadows under my eyes, can't think clearly etc etc. Sometimes I sleep really well (once or twice a month), even if I have less hours and I can feel great on those occasions but to my awareness, I've done nothing different (that I can tell). It appears to be random, but obviously there's a reason. I can barely stay up 13 hours a day, work in affected, relationship, everything....

I eat well, cycle to work every day, blood tests always come back clear. On paper I'm completely healthy. Sugar free diet, take pro-biotics, pescatarian for nearly 20 years etc etc. Too many things to list here but I've tried every supplement and vitamin under the sun.

I just can't tell if this is related to the RLS or I have some other condition and wondered if this was common for those who have their symtoms under control.

cheers!

Anthony

48 Replies
oldestnewest

Hello. There's several factors here which might explain your insomnia.

1) The classic symptoms of RLS that are identified in the RLS diagnostic criteria address the sensory-motor aspects of the symptoms and these are associated with a dysfunction of

dopamine.

What is not identifed and receives less mention is the "hyperarousal" (hence insomnia) that can be experienced as a result of RLS and this aspect of RLS is associated with glutamate dysfunction.

Dopamine agonists, pramipexole, ropinirole, rotigotine adrdess the sensory-motor symptoms of RLS, but not the hyperarousal.

2) Furthermore, dopaminergic agents can cause restlessness and hence insomnia

3) Some people, like myself, suffer from insomnia anyway. My father took me to the doctor when I was less than 10 years old because I wasn't sleeping. I also find that insomnia is different at different times of the year. It's worse in the winter months.

4) There are other conditions or medications that may affect sleeping e.g. sleep apnoea, which itself is associated with RLS. Others aren't.

Conclusion

If there was a time before you had RLS when you had no problem sleeping and you currently have no other issue which could affect your sleep, anxiety, sleep apnoea, a medicine etc. then -

YES the dopamine agonists could be controlling your sensory-motor RLS symptoms, but may be NOT controlling hyperarousal and may in fact, be making it worse.

Solutions options

1) Sleep ( and RLS) have a circadian rhythm (24 hour cycle) which is regulated by LIGHT. Take every opportunity to expose yourself to full spectrum (sunlight) during the day or use a "SADS" lamp. Full spectrum light has a high propoertion of blue wavelength light in it.

Take very opportunity to avoid light during the evening expecially full spectrum light emitted by TVs, PCs, tablets, smartphones, etc. Some devices allow you to tune out the blue wavelengths.

2) A SHORT TERM solution is to ask your doctor for a benzodiazepine such as Clonazepam or a "Z" drug e.g. Zopiclone. Clonazepam is long acting and can leave you drowsy next day. Z drugs are short acting but can cause sleep walking.

3) Start taking an alpha 2 delta ligand, i.e. gabapentin or pregabalin THEN wean off the dopamine agonists. These alternatives can be effective for the sensory-motor symptoms of RLS, but also address the glutamate dysfunction hence promoting sleep.

Do NOT suddently stop taking a dopamine agonist.

I don't recall any sleep problems when I was younger, I think as a teenager I was fine. I remember having loads of energy....then in my early 20's I remember being so tired I couldn't keep my eyes open sometimes and trying to catch a quick nap in the toilets at work. I just normalised everything for years.

I never suffer from problems falling asleep....generally I crash out after taking the medication. When it kicks in it pretty much knocks me out. The problem seems to be when I wake up somewhere between 2-4am I'm wide awake....sometimes I need to eat something just to get back to sleep or take a valium etc....on a bad night I might wake up 6 times ....

The glutamate avenue is something I've not heard of before. Is there a natural method of absorption? Or something to take as a precursor? I can't stand the thought of pumping more drugs into my system to treat symptoms rather than the root cause.

thanks for the input!

Simply put, there are two main types of insomnia.

One is difficult getting to sleep, the other is "early waking". The latter is what you describe.

Pramipexole or ropinirole helps prevent difficulty getting to sleep, but can cause early waking.

There are no natural sources of an alpha 2 delta ligand, only drugs.

They can be used at the same time as a dopamine agonist, but side effects add up. Or you can totally replace the dopamine agonist with the other. In which case, you're not adding another drug, you are replacing one with another.

I switched from pramipexole only to gabapentin only. It was different for me. I suffered augmentation for about 3 years. Sleep at the end averaged less than 3 hours. On gabapentin only, rarely any RLS symptoms. I can sleep up to 8 to 10 hours, although this is erratic for other reasons.

I see. At the moment I've been taking Ropinorole. Do you think Pramipexole may change the waking affect or you think it would be the same as they're both dopamine agents?

So, I could take the gabapentin and maybe try reducing the Ropinrole/Pramipexole gradually?

Or even reducing the Ropinorole dose just byitself? Could I be taking more than is necessary? I'm not taking a particularly high dose (2mg) at the moment.Would too much cause these effects?

It's a matter of trial and error and a bit of a balancing act.

Replacing ropinirole with pramipexole is a bit pointless.

Just reducing the ropinirole might bring some improvement in early waking, but the RLS symptoms may increase and prevent you getting to sleep. You're between the devil and the deep blue sea!

You'll also get some withdrawal effects when reducing as well.

Reducing ropinirole very very slowly will minimise withdrawal effects, (a worsening of symptoms).

Taking gabapentin and a reduced amount of ropinirole together may improve things.

I am biased, I've had a bad time with the dopamine agonist, I wanted off it altogether and very glad I did it.

"Taking gabapentin and a reduced amount of ropinirole together may improve things."

Yep, this is exactly what I was thinking. I booked an appointment with the doctor, they said they had a slot free in 15 mins so I went up there and got a prescription for the Gabapentin already. Am going to try it tonight, he gave me 300mg and to come back in 2 weeks to see how I'm getting along.

I think I might not even need 2mg Ropinorole, it stops the sensation in my feet for at around 10 hours (however bad a nights sleep I've had) so I think I can definitely afford to reduce the dose.

thanks for the advice. Let's see how I get on tonight....

If you managed to just take the Gabapentin then what does that indicate? That you don't have a dopamine/receptor issue???? How does it work exactly?

Whoa!!!!!

First you need to buid up the gabepentin to an effective dose and remember that it takes about 3 to 4 weeks to take full effect.

Correct starting dose, yes, is 300mg. You then need to build up by about 100mg every two days to a possible minimum effective dose of 900mg.

300mg and go back in 2 weeks - NO! Sorry. that's not useful.

WARNING

TAKE YOUR 2MG ROPINIROLE TONIGHT AND TOMORROW AND THE DAY AFTER ETC.

You need to reduce the ropinirole VERY slowly. AFTER the gabapentin has started to work.

DO NOT go from 2mg to nothing in one night , this is VERY dangerous!!!!!

You will get horrendous withdrawal symptoms, you are physiologically dependent on this drug.

In about 3 to 4 weeks, when on 900mg gabapentin, THEN try reducing in steps of no more than 0.5 mg, cut tabets up with a sharp knife.

So, reduce to 1.5mg, for at least two weesk, then 1mg for two weeks then 0.5mg for two weeks. Then nothing if you want.

You cannot do this impulsively, when you're withdrawing you may get increased symptoms and sleeplessness.

Your doctor doesn't appear to know what they're doing as regards this. This is not a criticism, but it is very common. Find out more about what to do before going ahead.

Hi,

Thanks, yeah I would never completely stop immediately. I couldn't if I wanted....the sensation kicks in when I'm starting to get tired, it's so strong I have no chance of sleeping. I took the 300mg of Gaba last night, no negative reactions just yet, hopefully it will stay that way. I took a little chunk out of the 2mg Ropinorole tablet last night, roughly a quarter or so, I'll do the same for the next few days and see how I get on. Such useful info I've learning on this thread alone.

No, every Dr I've ever seen is quite curious about my condition and although they mean well, quite clueless.

Sorry about that, written in a hurry, you scared me.

"I think I might not even need 2mg Ropinorole"

Silkusmaximus, RLS is NOT a lack of dopamine. That is Parkinson's. Although many people, including drs, do think that. It is an issue with insufficient or badly functioning dopamine receptors in a specific area in the brain. Adding dopamine does not really help, it is like flooding the system, whereas the problem is in the transport of the dopamine (and several other neurotransmitters). But no-one knows exactly what is wrong in RLS sufferers.

Bks429
Bks429
in reply to Manerva

Manerva, I often see you comment “do not stop suddenly stop pramipexole..’ Why?

LotteM
LotteM
in reply to Bks429

Because you most likely will get horrendous withdrawal with very intense RLS symptoms. Especially when you have been on any dopamine agonist (DA, ropinirole, pramipexole or rotigotine) for a long time and/or on a high dose.

Omegadcuj
Omegadcuj
in reply to LotteM

I can vouch for that! Lost my tablets for a couple of days a few months back on holiday. Didn't forget again!!!

Manerva
Manerva
in reply to Bks429

In the worst case scenario, people who suddenly stop taking a dopamine agonist (DA) who have been taking it for any length of time can suffer Neuroleptic Malignant Syndrome which is very serious.

However this usually only applies to people with Parkinson's Disease rather than RLS, who take a higher dose. I have never heard of it in relation to someone with RLS.

Otherwise stopping a DA can lead to withdrawal effects. The severity of the withdrawal effects depends on what dose you're on, how long you've been on it and how suddenly you stop it.

The usual withdrawal effects people experience are a worsening of the RLS symptoms, which can be horrendous.

It has been found from studies that the more slowly you withdraw from a DA, the less severe the withdrawal effects will be.

It is therefore best to "wean" off a DA slowly and strangely, as you lower the dose, the harder it gets to lower it any further.

Withdrawal effects occur within 24 to 48 hours of taking a reduced dose.

These withdrawal effects usually last days, but can last longer. Some people find they have to temporarily take other medications to help them e.g. sleeping tablets and/or an opiate if they can get a prescription.

In some cases, where people have been on a high dose and have developed an Impulse Control Disorder (ICD) because of taking a DA, stopping taking the DA, even slowly, can lead to DAWS (Dopamine Agonist Withdrawal Syndrome).

The symptoms of DAWS include anxiety, panic attacks, depression, agitation, irritability, suicidal ideas, fatigue, low blood pressure, nausea, vomiting, sweating, generalized pain, and drug cravings.

DAWS can possibly last much longer.

Luckily this is not at all common, but it's good to know about these additional symptoms should they occur, however mildly.

Very recognisable and excellent replies from Manerva. I had the same when on ropinirole, and still have it to a small extent, although I now take oxycodon slow release.

It may be a good plan to consider switching to gabapentin (or pregabalin, but they usually start with gaba first). If you decide to try that route, of course arm yourself with info and discuss with your doctor. This alternative may kill two birds with one stone as it will prevent you from developing augmentation. Chances are fairly high (70-80%) when you stick to te ropinirole or pramipexole. The downside is that the gabapentin may not work for you and/or the side effects may be worse than the insomnia. I could take no more than 200-300 mg and became depressed already at that dose; a known side effect. And even 600 mg was still ineffective for my RLS. Pregabalin come with other potential side effects. But you will not know until you try. I think it would be worth a try.

If it doesn't work, you could always return to the ropinerole. Maybe even a lower dose. As 2 mg is no longer considered a low dose. And you could consider trying to get the most rest during your insomnia. Most of the time for me at least my legs were more or less quiet. That said, it remains beyond doubt that you need sufficient good = deep sleep.

Hi LotteM

That's interesting. Did you find yourself waking up in the night after the initial "hit" too? Or that you couldn't sleep even though you're really tired?

I need to look into the gabapentin side-effects actually and make sure I'm aware of them. Does your body not augment to the gaba?

The way I feel at the moment there's no side effect worse than how I feel without deep sleep. I wake up and feel like I've been up for 48 hours already. Called in sick as I couldn't face work today....

Like you, I always woke up in te night. Almost always about 2AM. Not to fall asleep again until after 6AM. After a while I gave up trying and got up to distract myself. Reading (novels) was still extremely difficult at that time, but the forum wasn't, and I even read scientific papers on RLS in small bits and pieces. At least I hunted them down during the night. I also did 'house work', such as ironing ☺️; I found that calming and I liked the warmth of the ironing board.

And no, augmentation is absent or extremely rare or non-existent with alpha-2-delta ligands like gabapentin. But never say never.

Side-effects are very individual, no telling in advance. Just be aware.

You don't understand how nice it is just to read someone else who's had the same issues. Ive actually felt for the last year I must be the only person having these weird symptoms. The doctors haven't got a clue and it's so strange that the very medication that sends you to sleep then keeps you up all night.

He actually told me today to try using wet towels on my legs tonight....

(sigh)

1) the wet towels may hold promise. I a currently sitting on the side of a bathtub with cold water up over my ankles.i read about this years ago before we had the fancy new drugs and it always worked to get me to sleep. However, we know RLS gets worse with age and I am now on Sinimet which seems to work but not strong enough. 2) consider seeing a neurologist. A GP will likely not be much help. Good luck to you.

Hi, I’m sorry you’re experiencing these sleep problems, but happy to read this thread, as I have the same issues, I know I could not hold a job, partly because I lack the energy due to old age, but also because of how little good quality sleep I get. It was almost impossible even when I was of working age, so I did part-time work where I had more control of hours. I know not everyone can afford to work fewer hours. Like LotteM, I often get many things done while I’m up between 2-4 hours most nights, but only if it’s straight insomnia and I don’t have RLS. When I’m up with RLS, I can’t concentrate on anything else, and BTW, I have used hot, wet towels when things are desperate, and they help a bit.

I’m gradually adding cannabid oil to my Mirapax and Pregabalin, but I’ve only been on it for three weeks so it’s too soon to tell, as I’m increasing the dose really slowly because of the other meds, I have a low tolerance for many drugs and can seldom handle the recommended doses without side effects, usually extreme grogginess ( with Gabapentin, Pregabalin , cannabid oil, and others.) One thing that always helps me when RLS symptoms are bad is codeine. I have 30 mg. Tablets and usually need two of them, They don’t address the sleep problem, however. Good luck. It’s all trial and error. I’ve had this for at least 35 years, and it’s known to worsen with age.There’s a happy thought!

Hidden
Hidden

Hi Anthony

I’m the same.

Even if I’m not getting any RLS symptoms my sleep is rubbish.

My theory is once your sleep pattern has been severely disrupted

for whatever reason, it’s hard to ever sleep the way you did before, even when the cause of the disruption has been dealt with.

Many mothers will tell you that they never sleep as well as they did before they had children, due to the disturbed nights.

That’s one theory anyway.

Hello Silk

It is common, I'm afraid. And dopamine agonists can cause severe insomnia - they did with me, I was a basket-case.

But insomnia is the Terrible Twin of the akathisia we experience - the movement problems. And both are cause by what is happening in the brain.

Perhaps you should change medications - which in any event can lead to augmentation.

Manerva's post today concerns the hyperglyamatergic state we suffer - too much glutamate is excitatory to the brain, and we have too much.

That's interesting. Is the glutamate a result of the high dopamine levels or a side effect of the ropinorole directly you mean?

It is a part of the condition, which is much more complex than is recognised by 99.9% of the medical profession.

Do yourself a very big favour, and join the RLS Foundation.

It costs $45, which is a lot for me, but it is worth every penny. And your money goes to research.

One thing you will find is an excellent webinar by Doctor Sergi Ferre, one of the best RLS researchers on the plant, expaining it all.

I take Oxycodone for restlessness and for sleep either Valium 15 mg or 50-60 mg. of a “Full Spectrum Hemp Oil “. They both give me a very solid sleep of 8-9 hours with maybe getting up once to “restroom “. The brand I use is Functional Remedies and can be ordered online in the US.

Valium I take sometimes yes, although 15mg is quite a high dose. I assume you have built up a tolerance over a while. Tried CBD in the past and it hadn't helped but I'm going to try again with the gaba as it might take effect with a reduced Ropinorole dose.

If you try CBD again make sure it’s labeled as Full Spectrum ( not Broad Spectrum) . Some people on this forum need the CBD oil from the cannabis plant which is illegal except in a handful of States in the US. Oftentimes it has more THC and I respond negatively to that. I personally do better with oil from Hemp plant at about 60 mg. Which is much higher than the”recommended starter dose”It’s trial and error as everyone is different. I wish you well. On another note, I tried lower doses of Valium and they were ineffective so I tried 15 mg. and that was the perfect dose for me. Fortunately I have a neurologist that doesn’t freak out when I increase the “prescribed dose “.

Ok good to know that about the CBD. I'm in the UK so it's not usually a problem here.

I have 5mg and 10mg Valium. I usually just take a 5mg to send me off if I need it and maybe only 3-4 times a week to stop the augmentation.

Hi.So sorry you can't get your rest.

Ropinerole caused severe insomnia for me so I had to stop taking it .Others on here have said the same.As Manerva says you could try a change of meds to see if it is that. I take Tramadol and many others find opiates helpful. Good luck.x

I have similar sleep issues - a vestige from a protracted severe RLS episode that was dramatically helped with iron supplements. The "hyper-arousal" is the imbalance of Glutamate and GABA neurotransmitters - exactly why you can get 2 hours sleep and still continue on with your day - Glutamate works all day! Ibuprofen is a glutamate blocker and I take 1/2 caplet (100mg) upon awakening and usually return to sleep.

That's really interesting. I've definitely had no change with iron supplements. Did you blood tests say you had low ferritin levels? Are you taking a dopamine agent now, is that where the glutamate is coming from?

Never knew this about the glutamate and ibuprofen - will definitely try that tonight, thanks.

I'm not on any meds. My Ferritin was 49 - docs said it wasn't an issue! I used Ferrous Bisglycinate Chelate and raised it to 105 within 3 months, RLS went away (but not insomnia). Glutamate/GABA balance - it gets complicated, article here... holistichelp.net/blog/how-t...

Right thanks for that link. I need to get researching. Are/were you taking gabapentin? What do you take at the moment? (apart from the ibuprofen)

No Gabapentin for me (although I would consider it if things got worse). Not on any meds, just supplements.

I started reading that website...its so indepth. Really interesting but it's late so I'm going to do it properly and make notes tomorrow.

What supplements do you take? I noticed Vitamin D mentioned a couple of times on that website.

I'm trying to wean down to a 3x day Multivitamin that has most of what I have been taking. Daily - fish oil, digestive enzymes, HCL w/Pepsin, Hawthorne, Saw Palmetto (prostate), Ginko, Ubiquinol (CoQ10), Turmeric, Ashwagandha, Vit. C, and Alive multivitamin. I take probiotics on occasion, just started on the LP299V probiotic to help with iron absorption .

Interesting. Tried some of those to help with over-active bladder. Now I'm wondering if there's a connection, what with it being nerve related. You mentioned fish oil, not sure which one but I started taking Skate Fish oil around 3 months ago. I started dreaming much more and definitely helped my sleep. It's a very powerful antioxidant too.

Im fairly new to this party but my symptoms have progressed rapidly-yey me! I'm the same with amazon, got to have it today! Lol!

I'm finding that 2 x 0.125mg prami before bed and a 2 droppers of CBD oil are helping my insomnia and waking at 2am/4am. I'm not a lover of any drug but needs must. Quite a few Doctors are useless sadly :( mine said 1 tab 3 x day and I was doolally with no sleep and crazy legs after 3am. So I thought why not shift the doses, after browsing these forums and papers on prami it really has helped (thanks manerva) . Although I would like to get off prami and onto gaba I think there might be an issue as my wife passed in 2000 after my son was born :( and I am prone to depression. Last thing I need is help in that dept lol

Hi , I feel like I could have written this . I too have much trouble with sleep, sane symptoms as you . I’ve done everything with sleep hygiene, diet, exercise , supplements but can’t get a nights sleep. I am becoming resolved that this may be as good as it gets. I’d just love to go back to bring the great sleeper that I was before this RLS crap took over my life .

Sorry to read that mate. I had no idea how many people are having this problem. What are you taking at the moment?

Hi Silkusmaximus

I have periodic limb movement disorder (PLMD) and possibly RLS.

Like you, I have experienced poor quality sleep on pramipexole (and occasionally on pregabalin). I have difficulty falling asleep but not staying asleep.

My two most recent sleep studies were done when I was taking Pramipexole 500mg. Both sleep studies showed that there was no (or negligible) periodic limb movement activity. At the time of those sleep studies, I was experiencing tiredness despite the lack of limb movement. The tiredness that I refer to is the same sort of tiredness that I experience when not taking medication. It is a mental tiredness not a physical lethargy).

I now take pregabalin (250 to 300mg). I find that this usually works however can still have bad nights. The side effects are considerable (a spaced out feeling and reduced cognitive functioning as well as a feeling of disconnectedness) but at the same time preferable to the effects of sleep deprivation.

Manerva has provided some very good advice. I hope you find something that works for you.

silkusmaximus
silkusmaximus
in reply to Amrob

That's strange, so you're having the opposite to what I'm experiencing? I have the same mental tiredness although combined sometimes with extreme physical tiredness if I'm quite bad. I ALWAYS have dark circles under my eyes. I think I've normalised the feeling and can barely remember what "normal" is.

Normal is tired.

What's the difference between Gabapentin and Pregabalin?

Amrob
Amrob
in reply to silkusmaximus

Yes it is strange. At one stage my sleep specialist said "it must be the medication that's making you tired". Go figure!

For now though, I get a good nights sleep on pregabalin but find that I need more sleep than on other meds, around 8-9 hours per night. I am however looking for alternatives as the side effects of 300mg of pregabalin nightly are considerable.

I can't comment on the hair thinning properties of gabapentin. My experience was that my hair thinned quite considerably approx. 6 months after the birth of my son (typical) which was also the same point at which I resumed pregabalin. Nearly four years later and my hair has never regained the same volume. I find liquid silica (not capsule or tablet) to be excellent for hair volume.

I don't know the point of difference between gabapentin and pregabalin. I understand that, at one point, only gabapentin encarbil was FDA approved in the US so that may affect prescribing decisions. (I'm in Australia and pregabalin appears to be more common here).

I was reading on another thread here that some of the side effects of the Gabapentin can be hair thinning, is that common? I've ordered some Folic Acid just in case.

I can absolutely say that gabapentin caused terrible hair loss for me. I tried it twice, with the same results both times. My neurologist says she has also had the same report from several other of her patients. There are reports you can look up on Google.

That's not good to hear. What dose were you on?

Valleypeach
Valleypeach
in reply to lsd245

Have you had your iron and ferritin checked? I've not had the problem with gabapentin but had serious hair loss after 3 surgeries which the say is caused by the anesthesia. However, I have not found clinical reports on this. I do find reports that sudden s hair loss can be caused from Iron insufficiency which can be due to too much blood loss during surgery.

Good luck with your journey,

Did it come back when you stopped?

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