Lack of sleep

[Mags1983]

Hi does anyone have tips on help with sleep? I'm so tired. Soon as I get to her rls starts and it's affecting me so much now with the tiredness in the day

[Hidden]

Oh dear, insomnia is so very common if you have RLS.

Presuming you do have RLS, the condition itself can cause insomnia in two ways.

One way is that symptoms occur when you're trying to fall asleep and they prevent you getting to sleep.

The other way is that in RLS there is a overarousal of the nervous system and even if you don't have symptoms and can fall asleep, you can wake early. You can have both.

The first tip then is to find the right remedies for your RLS. If your RLS is under control you will sleep better. It may be then you need to review whatever it is you do to control your RLS - it's not working!

Next, if you're taking a dopamine agonist (DA), for your RLS and have been for some time, then the DA can cause early waking insomnia even if it appears to he controlling other symptoms. Also if you have symptoms that prevent you falling asleep, the DA has stopped working anyway. If this is the case do NOT increase the dose, this may make things even worse.

Next, if you are taking a DA, switching to gabapentin or pregabalin should help your insomnia.

Next, a sleeping medication can help to some extent in the short term. Not recomnended in the long term. Typical medicines your doctor may prescribe are a benzodiazepine (e.g. clonazepam) or a "Z" drug (e.g. zopiclone). It depends on your doctor.

There are many non pharmacological remedies for sleeplessness you can read about, but unfortunately, for someone with RLS they tend not to be very effective.

One thing that works for me is exposure to light. Many people scoff at this, but there is a scientific basis for it. Basically the daily light dark pattern regulates our sleep wake pattern. Based on this, it helps to expose ourselves to natural full spectrum daylight during the day and avoid it in the evening and at night.

In the evening this means avoiding bright artificial lighting and avoiding using backlit devices i.e. TVs, tablets, smartphones, laptops eyc. On some devices you can adjust the backlighting to filter out the blue end of the spectrum.

Another good tip is to follow the "15 minute rule*, i.e. if you don't fall asleep within 15 minutes - get up. Do sometbing for a while, then try again. If you fail, again in 15 minutes, get up again. It's possible you may be up all night. Hard to imagine, but this is better than lying in bed struggling to sleep, and failing. Some people develop a phobia, a dread of going to bed.

Next, if you can't sleep it's important to consider what you do in your sleeplessness. It's better to do sometbing rather than nothing. It's not a good idea to do anything physically exerting. It's better to do something that engages your mind, rather than sometbing passive. No watching TV/video. Some people do puzzles, crafts, something creative. Don't think of this unwanted awakeness a waste of your time. Don't dwell on the consequences of being sleepless. The more you struggle with this, the more anxious you can become and even less likely to sleep.

I hope this helps. The main thing is to get your RLS under control.

[Netball-50 in reply to Hidden]

Hi I'm getting all this about not sleeping. I've struggled really bad lately. My work changed my hours as I cwas just getting to sleep when it was time to go to work! So working with no sleep sometimes and I'm full time.🙈

I asked my gp as my manager said I had to ring as had no sleep and ask for some sleeping tablets. I got met with definite NO we don't prescribe them. I work in mental health and I know they do as the patients get them regular. I was literally beggi g for some help with my sleep but it was a NO!!

So I've carried on with my gabapentin come off my pramipexole 1/4 of a tablet of 0.088mg but still not sleeping having to go in spare room as twitching is so bad. I've upped my gabapentin to 4 300mg staggering taking them before I go to bed but still havi g bad nights.

I was due to go back to neurologist but with the covid 19 not had results told him I'm not going to take ropinerole as just weaned off pramipexole. Maybe it's low iron? I've not had results of blood test from hospital yet.

I'm at a loss with the sleeping I'm reading on here for some ideas but nothing seems to work for me either at the mo. HELP please forum friends ❤️

[Joolsg in reply to Netball-50]

You are in full blown withdrawal from the pramipexole and it’s normal to get no sleep for 10-14 days during DA withdrawal. Can you take urgent holiday now? Your GP clearly has no idea how to help. Withdrawal from DAs can be worse than heroin or crack cocaine withdrawal- that’s how poisonous these drugs are.

Beg your GP for a sick note and opioids to get you through withdrawal. Tramadol, codeine or OxyContin will help the constant RLS twitches.

Gabapentin won’t make any difference to your RLS until you’re through withdrawal so don’t take any more. 900-1800 mg of Gabapentin is the max you should need after pramipexole- and only take at night because it causes daytime dizziness and sleepiness if taken in the day.

If you can get Solpadeine Max- the codeine in the pills will give you some relief and if you can source illegal cannabis ( any adult children?) it will give you sn hours sleep.

Definitely get back to GP and explain Dopamine Agonist withdrawal is real and serious and they have to sign you off work and help you get off the poison they put you on without warning of the risks.

[Joolsg in reply to Netball-50]

ALSO- don’t bother with sleeping pills during withdrawal as they drug you and you’ll be at danger of falling over and you will need to move constantly to relieve the super intense constant RLS caused by withdrawal.

[Hidden in reply to Netball-50]

Jools gives good advice. It does sound as if your sleeplessness is due to withdrawals which can happen even after stopping from a very low dose of pramipexole.

As regards "staggering" the gabapentin, it can cause drowsiness, dizziness and a stumbling gait - so you could fall over. I found this wears off after a while. You also want it to be effective i.e. help you sleep when you want to sleep. Therefore it's probably better to take it later in the evening, but not too late i.e. so it's worn off in the morning. There is a slight advanatage to splitting the dose. Because of its strange absorption properties you can actually get a higher (hence more effective) level in the blood by splitting. it, but I'd only take two doses, no more than 3 hours apart.

[Netball-50 in reply to Hidden]

Thank you again manerva and jools I would b at a loss without your knowledge on here I'm trying magnesium as jools has suggested see what happens 🙏❤️

[agapepilgrim]

😢🙏🏻❤️

[Accipiter]

Just to add to the already good points.

Insomnia seems to have two elements. One is the psychological stress of not expecting to sleep and the physiological cycles being messed with so your brain doesn’t go into sleep as easily. These cycles, as in entry and exit other than individual sleep cycles, can really be badly reinforced by disturbances such as RLS.

The term sleep hygiene is borrowed from the true insomniacs, and it focuses on the entry and exit cycle of sleep. Minimal bright light before bed to trigger melatonin, as well as going to bed later and forcing yourself to get up early is the basics. I have used this effectively, although it seems like a punishment and counter-intuitive at first.

What is important is getting up early and exposure to outside light, or bright light inside, to set a wake up point. If you have problems getting to sleep, the next night you go to bed later and get up earlier. Exhaustion, combined with some setting of cycles leads to better sleep which means gradual earlier bed times and slow increase in time of getting up.

The psychological is difficult. Some people have a television in their room with a timer, which would not work for me, so I use headphones with music to get me at least started on the process. I then take them off and drift off reasonable quickly, after I find myself losing time with them on.

The other aspect is that you become more aware of going to sleep, or even worse not going to sleep. So it is good to take notice of the process. I meditate which can help or fully mess up going to sleep. Most pre-sleep is having your eyes in a certain position, not as if you are looking normally which you can find you are doing if thinking about not sleeping, as well as starting a pre REM thought process. Many meditators make this mistake when meditating to get to sleep. So your eyes in the right position, a bit crossed while closed, and starting your thought processes off in direction that isn’t worrying, too reality based and makes you feel good and relaxed.

Meditation is good for when being awake in the middle of the night as your mind can go to some dark places, most likely due to the low dopamine levels at this time. Meditate to calm the mind, then have a try at getting the right mindset for sleep, and if that doesn’t happen TV or music to become sleepy.

I have never got out of bed or engaged in anything that wakes me up, but for some it may help.

[bookish]

If you can take/use it, I found magnesium very helpful. I can't take the tablets but use magnesium salts in a foot bath of warm water for 20 mins in the evening or use a magnesium oil spray. Relaxing, calming and helps me sleep. Best wishes

[Netball-50 in reply to bookish]

Can u take magnesium if you are on gabapentin does anyone know??

[bookish in reply to Netball-50]

Sorry, I don't know. I had stopped gabapentin a couple of years before starting to work on vitamins and minerals. I have multiple tolerance issues, so started very slowly with only a tablespoon of Better You magnesium flakes in a warm (not hot) bowl of water and soaked my feet. Hopefully someone on here may be able to advise you.

[Joolsg in reply to Netball-50]

Yes but make sure you take it 2/3 hours apart as magnesium stops body absorbing Gabapentin or

Pregabalin.

[Netball-50 in reply to Joolsg]

Hi I'm taking manervas advice taking 1 x 300mg gabapentin 3 hrs before bed then 2 x 300 mg on going to bed so do you mean take magnesium in between the first dose??? Sorry if I've misunderstood

[Joolsg in reply to Netball-50]

As long as you take magnesium 2/3 hours before or after Gabapentin. So if you’re splitting Gabapentin dose you’ll need to take Gabapentin 3 hours before the first evening dose or 3 hours after the second evening dose. I tend to take my magnesium at about 3/4 in the morning ( it helps that I always wake around then to visit the loo. The research articles say 2 hours is fine.

webmd.com/drugs/2/drug-9845...

[Netball-50 in reply to Joolsg]

Thank you so much taken magnesium 100 mg (is this enough) seems to b working fingers crossed don't know wot I'd do without u all on here honestly don't ❤️

[Netball-50 in reply to Joolsg]

Thank you I'm taking 100 mg is this enough?? Fingers crossed thank you so much for your advice 🙏

[Joolsg in reply to Netball-50]

Safe daily recommended dose is 300-400mg so you can increase the dose if needed. There are different types of magnesium- many say Magnesium Citrate is good, others swear by Magnesium Threonate.

If 100mg seems to help, stick with that and increase if necessary.

[tami2moe in reply to bookish]

I have been doing the same thing. sometimes it works and sometimes it doesn't. I was using valerian root for rls and that helped for a long time then all of a sudden it quit working.

[bookish in reply to tami2moe]

That's a pity, Micki Rose mentions valerian (and magnesium) but I haven't tried it. I was on gabapentin and amitriptylene for years for something else and when I stopped taking them and sorted diet, minerals and vitamins, RLS pretty much went away.

[Joolsg in reply to bookish]

Amitriptyline is known to cause or worsen RLS.

[bookish in reply to Joolsg]

Yes I have heard that and it is odd - I wasn't prescribed it for RLS but RLS is in many family members and some of them have been prescribed it for the RLS. It certainly didn't make mine worse (and didn't cause it) but I am much better without all the chemicals. I cannot break down and get rid of medications/toxins/hormones effectively so am now doing something about that. I was also prescribed capsaicin back then and now find that there is some thought that it can worsen small fibre neuropathy, which I have now been diagnosed with. I am very glad that I am getting vitamins, minerals and diet sorted and wish I had known to do that many years ago. Best wishes

[Insomniak]

Hi Mags, all excellent points above - you might guess from my name that sleep eludes me a lot as well. Bookish is dead right about the magnesium - that was a game changer for me and if I am having an RLS flare up I go for full immersion in an Epsom salts bath (as hot as I can bear it) before bed time. I also relate to the not stressing about sleeping idea as well. I would often get 2 hours sleep and then ping awake with my legs and arms buzzing with RLS. I find getting up and doing something productive useful until I feel sleepy again (probably around 4am) and go back to bed for my 2nd shift of sleep. I'd prefer to sleep right through but at least this way I accumulate a reasonable number of hours. Over the last decade I have moved away from 9-5 working to being self-employed and totally flexible so that I can work when I feel good and sleep when i need to. This freedom ironically has reduced my stress levels and allowed me possibly to sleep better. I wish you all the best with your own sleeping challenges and hope you find a way that suits you.

[Matrix in reply to Insomniak]

Mags ,I have had really bad sleep as a child from 11 years old and by the time I was in my twenties I was diagnosed as an insomniac.Now decades later I tried high strength CBD oil and for first time in my life I’m getting some sleep some nights I can be three hours on the odd occasion I have had five hours .I have lots of health problems RLS ,Fibromyalgia ,leaky gut ,diabetes etc and others .All things that keep you awake .Im so thankful to get some sleep .Hope this helps.

[Hidden in reply to Matrix]

There is a link between cannabis and sleep. Lots of anecdotal evidence. Recently a member posted about a placebo controlled study of the efffects of medical cannabis on sleep and found a statistically signficant difference between people taking a placebo and people taking the medical cannabis.

This does point to the efficacy of cannabis for sleep. However it only points, the study only looked at a small number of people and such studies have to be replicated (repeated) before the results can be said to be reliable.

The drawback is medical cannabis requires a prescription and that could be years off.

As regards CBD oil,I always say, there are so mnay different CBD oil products that it's difficult to say which ones actually work. They're also, not all legal, depending where you live.

[Matrix]

Mags ,I have had really bad sleep as a child from 11 years old and by the time I was in my twenties I was diagnosed as an insomniac.Now decades later I tried high strength CBD oil and for first time in my life I’m getting some sleep some nights I can be three hours on the odd occasion I have had five hours .I have lots of health problems RLS Fibrom

[Hidden]

Have you tried taking a hot bath/shower before bed? Also, I use a lavender blend calming body oil by Dr. Hauschka that is really effective at calming me down and making me sleepy.

[Netball-50 in reply to Hidden]

Thanks I've just ordered some of this oil see if it helps

[Hidden in reply to Netball-50]

You're welcome.😊

I really hope it helps! I hope you get it soon, too. I've ordered a couple things that should've made their way to me by now. I think everything is backed up due to COVID-19.

For when you do get it: I massage some on my neck and behind my ears.

[tami2moe]

I have the same problem. I'm so tired of not being able to sleep. Even if I sit too long I start getting rls. I'm trying magnesium, valerian root and iron to see if it helps. Sugar is a big trigger for my rls.

[Crochet88]

Hi Mags,

like you was so tired got very tearful RLS. starting at 11am. fits and starts all day could not get to bed till about 12.30 have been walking round garden in night for cool damp grass.

waking early hours 3am. getting up taking another Pramipexole allowed up to 5 a day 0.88.

Telephoned surgery in desperation and found a doctor I had not seen before she phoned me

back and I asked her about Gabapentin which has some good reports for RLS so worth a try

and she gave me a prescription and told me to take them together to start with.

well I have slept every night like a baby, not much RLS a little during day that I can cope with,

I had no symptoms yesterday at all, due to phone Doctor back on 28th.after 10 days on Gabapentin. I have wanted to come off Pramipexole for a long time as been on them for 10years and Doctor said they have run their course and not working now, and terrible side affects.

You get so desperate that I even thought about self harming for any relief but hasn't come to that , do hope you manage to get some relief, try another Doctor as some just do not understand at all. My Mother suffered with this as well and no medication then !!

With kind regards

Nancy