I havent written on here for a while but i am reading new posts on a daily basis. My restless legs are under control at the moment , or should i say i am managing to cope ! I take Mirapex and have done now for a couple of months. I take gabapentin 1800mg daily but have done for over 4 years now. Im slowly weaning off morphine and am now down to 5mg at night and morning. This was given for lower back pain but i think i have come along way from 80mg a day and it still made no difference to the pain which is why i chose to wean off it.
I am writing to you all for advice as i am suffering from insomnia which is slowly getting worse and im not sleeping till after 3am and its not due to my restless legs this time ! Im not sure if its due to the Mirapex or me reducing the morphine but all i know is that i feel as if im going round in a vicious cycle. Before my lack of sleep was due to my legs or arms but now i just dont know. I dont smoke, drink alcohol or have any caffeine so im just praying someone may know the answer. My gp prescribed me sleeping tablets incase my legs got really bad one night but i havent tried them yet...they are Zopiclone 3m75mg and im thinking of having one tonight. I would love to fall asleep about 10 or 11 like i used to , so to do that tonight would be heaven, what are your thoughts please. Thanks and hugs to you all
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Insomnia is so troublesome. I take zopiclone from time to time and find it fantastic - I sleep really well, feel rested the following day with no hangover. I only take it from time to time because I don't want to rely on it. I sometimes use cannabis taken as an edible which is also quite good for sleep. Madlegs recently posted a link to a comprehensive paper on insomnia which might be worth a look.
Thank you for your reply, i read various reviews for zopiclone and you have put my mind at ease. When you say edible cannabis what do you mean please ?
I have cannabis bud which I decarboxylate by drying in the oven at a low temperature then steep it in coconut oil in a slow cooker overnight to make it into cannabis butter. When it hardens I cut it into small pieces and in the evening I take one piece and mix it into a spread made with hazelnuts and dates and eat it. It induced sleep after about an hour. The effects last for 4 or 5 hours.
Oscarsaurus, insomnia is one of the side-effects of dopamine agonists.
You must sleep, so do not be shy of zopiclone. Sleeping is much more important than possible problems from a benzodiazepine, although such problems are real. But a benzo may not work well while you still take a dopamine agonist.
Oscarsaurus - I was a sever insomniac for many years while on a dopamine agonist. The DA was the cause.
The sleep aids recommended by the RLS Foundation are Ambien (zolpidem), Lunesta (eszopiclene), Sonata (zaleplon) and suvorexant (this one works in a completely different way, and is not a benzo).
It would be worth asking your doctor to let you try a few days of one, then another.
The only solution for me was to stop dopamine agonists completely.
I understand what you are saying but my legs are manageable at the moment . However i had no sleep when my legs were at their worst and i still no sleep now so i cant win at the moment.
I never thought i would envy people who can fall asleep at the drop of a hat but how i do now. One thing i have learnt in my life is never to take znything for granted. I will try the zopiclone tonight and if no joy i will ask my gp for the other ones you advised. Thank you and i dont know what i would do without you all on this site
RLS has two faces, not one - the first is dyskinesia (the movement problem) and the other is insomnia. The insomnia might be caused in part by the dyskinesia, but it also exists alone, as a nasty twin.
The insomnia is probably caused by the fact that we have too much glutamate in our brains, and too little adenosine. The first is an excitatory brain chemical, the latter is a calming chemical.
My dyskinesia was under control with the dopamine agonist, but my insomnia was not. In fact it was made worse, much worse, by the DA. I was sleep deprived for years and my life stopped completely. (So I understand why sleep deprivation is a primary form of torture).
In some countries insomnia is apparently not listed in the package insert as a side-effect for DAs, but if you google it you will find it everywhere. On the package insert I remember it was listed as a 'Major Neurological Side Effect'.
I switched from Pramipexole to methadone, and I slept. LIfe started again.
You are exactly right - RLS has 2 components - the unbelievable urge to move your legs and insomnia. My severe RLS responded quite quickly to iron therapy, but that pesky insomnia remains. Every night is a new frontier, a new regime or supplement. I usually wake up in the middle of the night 1AM-3AM, hyperaroused - the tired but wired feeling. I take a 1/2 ibuprofen (100mg) and usually get a couple more hours sleep. Ibuprofen is a Glutamate blocker. I would be cautious of Zopiclone - lots of interactions (caffeine and alcohol). It does, however, increase the normal transmission of GABA en.wikipedia.org/wiki/Zopic...
I am still taking iron tablets as my levels were 11 and apprantely they only normal prescribe anything if your levels are 10 or below and as i was 1 off . This is ridiculous but this is England for you . I have read on here that its £600 for a blood transfusion in London so i had better get saving ! Unfortunately i cannot take ibuprofen so that isnt an option for me. I do not have caffeine or alcohol so i think i will try a zopiclone tonight but i have a physio app tomorrow at 2.30pm so am worried i will feel like a zombie as i have never taken them before. Thank you for your help i am so grateful to everyone who takes the time to reply
Your knowledge is exceptional and i never knew anything about the chemicals which are or arent realeased from the brain. To know what you and others have gone through and are still so positive gives me hope. I have googled the side effects and it does say insomnia.
I am waiting to see a Neurologist and just praying that whoever i see is an expert on RLS . My gp is limited to what he can prescribe me but he does try and offer options unlike my last gp. Thank you so much for your advice
I had two different docs recommend Trazadone for insomnia. The first prescribed 50mg at bedtime which did nothing. the second recommended between 100 and 200mg. I tried the 150 and 90 percent of the time it helps me. ( The first time I tried the increased dosage I was tripping with very vivid ((but happy)) dreams. Just happened once. Darn!)
Thanks for the nudge. I hadn't done my research, but I've learned a little because of your Q. It is an older drug that was primarily used as an anti depressant, but is also being prescribed for anxiety, and insomnia. It is not recommended for use with other anti depressants. There are conflicting reports on whether it is addictive.
Oscarsaurus, I have discovered, the very hard way, that the only solution to surviving this condition is knowledge, as much as is possible for my non-scientific brain.
After years of increasing misery to the point where suicide seemed a very reasonable option, daily, I realized that I had to do it for myself - or die.
Almost all doctors are woefully ignorant as they have not been trained - except by drug reps, specifically the reps for dopamine agonists and alpha-2-delta ligands. And of course the reps understate the unwanted effects, which are many and awful.
I started reading everything I could find when I realized that my doctor was not able to help further. (I do not fault him for this, he is human and cannot know everything. I blame a system that has reduced this monster condition to a bit of a joke with a silly name).
I sought out information and saved it. I printed out evidence-based medical papers and anything else that a doctor would be obliged to take seriously.
I joined the RLS Foundation ( a very good idea) and three different chat rooms.
If my doctor did not know, then I had to know. In the end I took all my files to him and delivered a lecture or two. Or three. He had the grace to listen, to read and to act.
Then things slowly turned around, as first I had IV iron infusions (in a GP's rooms, no need for specialists), and he allowed me, with some misgivings, to try methadone. (Funny story there).
Long story long, I no longer have any symptoms and I sleep.
My advice - join the RLS Foundation and get mega-smart. Follow your nose all around the web, make it your primary mission to solve this, because without sleep there is no life at all.
I understand totally what you are saying...i felt like you did at one stage too. However life is precious even tho very difficult at times. I am lucky that my gp will listen to what i have to say and is emphatic so its a start even tho he does not know a great deal about RLS. I have almost weaned myself off morphine so the thought of methadone is not really an option for me . Thank you for all your knowledge
What a great read - thanks. Do you have a tip for me for Friday? I have an appointment to see GP re supplements - as we now only get 10 minutes and one subject only - Do I ask for ferritin, and what to do if he says `No".
Tell him that there is a very, very strong association between low ferritin levels and RLS, and that a lack of iron in particular parts of the brain is the prime cause of RLS.
Ferritin is the iron-storage molecule, and a blood test is the only way to approximate the levels of iron in the brain, short of a spinal tap, woohoo.
What is called 'normal' for most of the population is insufficient for us, and ideally we will have ferritin levels above 100, certainly above 75. But the lab will say that 20 is 'normal'. it is not.
If your levels are very low, you may need an IV infusion, but you will probably be offered an iron supplement, which can get low levels up - to a certain degree. Take iron last thing at night, on an empty stomach, with Vitamin C or orange juice.
Once our iron levels are up, they will come down, much more rapidly than in non-patients - we cannot hold on to it, so it is a continuing issue to watch over.
Our problem is a dodgy dopamine system, and without brain iron (which means without cellular brain energy) everything goes further down the drain.
Google 'iron and RLS' and you will get lots of hits. Trawl through them and print out the best from the best scientific sources and plonk them on your doctor's desk.
Medics are unimpressed by chat, but they cannot deny science.
Hi- I agree the information on this site is so good, and in the UK we have trouble being taken seriously. I passed on a printed copy of Doctor Buchfurher`s Restless legs paper to a friend who has been suffering for years and has other major problems such as Diabetes - and he was amazed at the information with regard to iron supplements. I am booked to see my gp on 1st Feb to `talk` about supplements, at my request. My recent test was just over 50 so deemed normal by the medical team. I don`t hold much hope for headway but we must keep trying to bring UK up to speed with this. Surely, there must be a doctor out there that suffers with rls - unless you have it you cannot understand the feeling of helplessness.
You are so right ! I have learnt so much from this site already and believe it or not my gp actually listens to me , i could kiss him !!! I am waiting to see a Neurologist but i am not too optimistic after reading about others that people on here have seen. All i know is i never want to see another proffessional that made me feel how my last gp did. How a gp can sit there and offer nothing to a patient that is sat infront of them pouring their heart out , is beyond me. Thank goodness for this site thats all i can say
I feel for you - I have just had extensive tests ordered by neurologist - sensory tests, MRI x 2. 1 on brain and 1 on body. Eye cognition tests. That was 6 weeks ago, not had any results yet? Which usually means they don`t see anything to `blame`. It is the matter of fact way they say "So, you have Restless legs" ? Disheartening isn`t it? I have skeletal problems as well - fusions, and twisted spine (slightly worse with age) resulting in one leg shorter. Still waiting for the call back. If I don`t get ferritin medication from GP on Friday, I will buy it myself to try to get some relief. Keep reading this site - the information is great.
I am just wondering if methadone is all you are currently taking for your RLS? Have you tried any other opioid? I am taking oxycodone and it takes care of the RLS, but still suffer from insomnia. Thank you for any informtion you are willing to share.
I take only methadone in syrup form. It is what they give heroin addicts, I believe.
While I was on pramipexole, with methadone as a back-up, I had severe chronic insomnia for many years, despite too many benzos. The methadone took away the dyskinesia but not the insomnia.
Then I went on to methadone alone, overnight, and I slept.
So I did Cold Turkey out of sheer desperation, and it worked. I did not consult a doctor, I just did it.
I am now steady on 3ml methadone syrup, which gives 6mg methadone, in divided doses - about 6pm and about 10pm. (For the first two nights I took 10 - 15mg, then titrated down to 8 and then 6).
For me it has been a miracle, from utter misery, with no sleep and no hope, to sleep and no symptoms at all.
I have read that methadone is the queen of opioids for RLS. And it's cheap.
I also sleep 2, 2 1/2 hrs a night but RLS is not the cause. I am on 2 heart medications and have A Fib 74% of the time. I'm not sure what's causing the sleeplessness. However, for RLS, I'm checking on getting a device called Quell Starter Kit. It's run on batteries and electrodes with a band that goes around the upper portion of your calf. It's supposed to help with pain of all kinds. It's possible it may help RLS. You can control the amount of help it gives you. Please look it up on your computer. I'm going to check with my cardiologist to see if it is compatible with my pacemaker I just had put in. If they give the ok, I will order this. It's expensive but if it works what a godsend this would be to RLS sufferers.
Good luck with trying this and let us all know if it works please! At the moment it isnt my legs keeping me awake i think its either due to the DAs or my body has got itself into some awful habits. Thank you
Hi, fellow sufferers. I called the company who makes the Quill I just wrote about the other day. It is not recommended for me to use this because of the pacemaker so my search continues. Any medication I want to take seems to have an adverse reaction to the heart medication. What would help one thing is a real problem with the other. So it goes. Good luck to all..
This is what I did after 40 years of not sleeping and trying everything. I had read about it frequently but didn’t put it into practice until I went to see a sleep therapist who said there was nothing wrong with me and I had got into bad sleep habits. I would lie in bed in the morning because I hadn’t slept during the night sometimes not at all sometimes for two hours. This is the worst thing you can do. A good Night was a rare four hours sleep. It’s very hard to put into practice but I can guarantee it works. I kept a sleep diary and I estimate it took about 12 weeks to get to the stage where I was sleeping for roughly 7 hours a night. I started going to bed at 2:30 am and getting up at 7:30 am and when I had slept for 85% of that five hours for a full week I added an extra 15 minutes sleep. No I never lie-in. It was a killer, but what are you prepared to do for sleep in the end. tuck.com/sleep-restriction-...
That is so lucky! I have tried everything but still only sleep 3 maybe 4 hours a night if I am lucky. I am grateful that I don't get too tired (I have always had lots of energy) but long term it's not good for body or mind.
I have tried all sorts of therapy and over long periods, also meds but nothing helps permanently and I don't want to get 'hooked'. Occasionally alcohol will help but I only have one and that's only about once or twice a month when desperate!
One of the most helpful things has been herbal teas "Sleep Easy" but even that does not always work.
I have often considered having some alcohol but am always worried it will make my legs worse or have adverse effects with the drugs i take. I used to love a drink at weekends but when i began taking strong drugs i had to stop unfortunately apart from the odd tipple on holiday or special occassions . I think that if some methods suits someone then why not go for it . Thank you for your reply
I think this makes alot of sense. Afterall our restless legs constantly stop us from sleeping over weeks, months or even years and our bodies get used to this so its going to have an awful effect . I will definitely try this so thank you. I am always open to any suggestions
No. The minimum amount of time In bed is five hours, regardless of how little you sleep. I usually slept between zero and four hours, I went to bed at 2:30 am and got up at 7:30 am. Don’t go any less than this. If you don’t go to sleep within 20 minutes get up and do something in stimulating and then go back to bed and try again, don’t just lie there and toss and turn. Don’t do anything stimulating before you go to bed ie Laptop computer phone I’m trying to switch the TV off at least half an hour before you go to bed. And I started to do this in spring when the nights and mornings were getting warmer and lighter. It makes it so much easier than the middle of winter when it’s cold dark and miserable. This obviously doesn’t work if you have bad restless legs.
Thanks, I'll give it a try. I just know I cannot get by on 2 1/2 hr. of sleep. It isn't healthy but I have limits on any sleeping aids because of the heart meds. Almost everything I check has a bad reaction when combined with other meds that may be helpful. I'll find something, somewhere, sometime.
During my worst time with this syndrome (augmentation in 2015), I was told by several people to stick to a schedule — wake up at the same time every day (no mention of going to sleep at the same time every night). I got so tired of hearing this, namely because it made absolutely no sense with what I was going through. Yes, sticking to a strict wake-up time might be one of the textbook things advised to help with sleep hygiene, but that particular advice was not written with RLS in mind. It was in getting this «advice» that I found one of my strengths — the strength to keep my cool when all I really wanted to do was to scream in their faces that they weren’t helping matters any!
Some more textbook advices (a.k,a. the advices we can actually put into place) are :
-keep the bedroom at a lower temperature than the rest of the house
-have the bedroom in complete darkness
-don’t have any electronics/anything emitting a bright light in the bedroom
-only use the bedroom for sleep and the other thing I don’t know if I can mention on here
Also, eliminating the default screen resolution (blue light) on your electronics might help. For example, I have my iPad set to where it automatically switches to «night mode» (dimmer lighting) starting at 8pm and lasting until 8am. Blue light wakes up the brain. If you choose to change the lighting and need help, let me know and I’ll see what I can do.
I am definitely going to set my alarm to wake me up at the same time every morning...lets pray i get some sleep before tho. I am willing to try anything so thank you
BTW, that’s exactly why doing this made no sense to me (I wasn’t sleeping at all during the night back then, so why the heck would it work???)! I use that advice now that I’m in better condition RLS-wise and it makes sense, but it definitely did not back in 2015!
I can empathize. I get about 2 hours a night. My psych doctor prescribed hydroxyzine pamoate which is an anti-histidine but is used as a calming agent for hyperventilating a PTSD. I am quieting somewhat. I had appointment scheduled for tomorrow at the Veteran's Hospital but all the bus rides were canceled due to weather - forecast to be 45 below zero (today it was 34 below). I guess I will have to wait for the news on what she is going to transfer to from mirapex.
Firstly i have seen the news and i feel for you all ...it must be a nightmare ! My thoughts are with you all . Let us know your outcome when you can finally see someone
The temp was minus 45 degrees wind chill this morning (minus 35 yesterday and minus 27 plus windchill -so about 45 again tomorrow). They canceled the 3 hr bus ride to the VA hospital in Minneapolis. Coldest temps in a generation. I remember days like these when I was a teenager. Sure haven't missed them! So I will have to get back to you in March when I was able to get another appointment with neurologist.
Another insomnia sufferer feels your pain. If you can take Ambien it will put you to sleep. I cannot take it because it causes me to sleep walk. At first I was just staying in the house eating and leaving remains that alerted me of what I was doing, but then I was picked up by the police at 6am running a stop sign and telling them I was picking my grandchildren up at church. That was before the drug was known for causing this kind of behavior. Now if I get 3 hours of sleep at any time I take it usually after 6am. Fortunately I am retired and do not have obligations for work.
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I don't actually know what to do now.
