Insomnia means you can not sleep. You just lie there and don't sleep. The eyes are closed , you are perfectly relaxed, nothing on your mind-- but you are wide awake. Caffeine is the most common cause.
There are loads of ways to deal with insomnia, which I will not cover here. (Massive sigh of relief from everyone!🤪😎)
RLS just doesn't let you sleep because the feet are tickling and have to be rubbed or move around. You can be utterly exhausted and even micro sleep, but the twitching will wake you up.
Buprenorphine,as will all opioids, have an element of insomnia, usually for a few weeks, untill the body gets used to the substance high!😅
I'll leave others to address the rest of your important questions.
I can generally get off the sleep initially if the legs haven’t started but then it’s the several wakings through the night that bother me. (I’ve been off caffeine for a couple of years for this reason - no change)
I hear you on the micro sleep! Nodding off standing up is not fun!
I'd suggest sublingual (SL) pills or strips, rather than the patch. And get .2mg pills/strips if you can, as that is a low dose that is easy to bump up if needed to control your RLS. I've used both, and alternated between them. SLs have the advantage of working very quickly (30 minutes give or take) so you can take more if you need it. This enables you to find the optimal dose much easier than with a patch that takes 24-48 hours to take full effect. Most of us strive to get by on the lowest dose possible in order to reduce side effects (fatigue, nausea, depression, constipation, etc.). If you find the side effects on SLs are significant, then you could consider experimenting with a patch later to see if it makes a difference. I notice slightly different side effects from the two different delivery methods.
I second twitcher, based also on my experiences with both sublingual pills and patches.
There have been very many posts and replies on buprenorphine lately. Apart from insomnia, nausea can be an issue. Usually temporary. I have the idea (no ground apart from common sense) that to avoid or minimise these, it is also important to start low and go slow. If you get sublingual pills, the lowest general ones in the UK are 0.4mg, but you can cut them in half (or even quarters) to start lower. Because they work fairly quickly, you can assess within an hour whether an amount suffices or not. An top up if needed. But go slow and ve prepared to deal with another one or few nights to find your lowest effective dose.
If you get the buprenorphine, start them first and then slowly reduce the pregabalin.
Have you followed the likely hassles and hence advises here on HU about how to enhance likeliness of a buprenorphine prescription? Buprenorphine is redlisted in many (some?) areas in the UK. And you may need a knowledgeable and helpful neurologist (only very few!) when your gp will not prescribe.
I had the exact same concerns before starting on Buprenorphine sublingual pills earlier this year. I was convinced the insomnia was a separate issue to the RLS', and was steeling myself to deal with it once the RLS was under control with opioids. The Buprenorphine stopped the RLS dead from night one, which was beyond my wildest dreams.
But what’s been even more miraculous is that my insomnia seemed to start to improve within a couple of weeks too. I still wake several times during the night, but I put that down to a decade of sleep deprivation (which has thrown my body clock out of whack) combined with age (I’m 60).
I’ve decided the best way to determine what’s working is how I feel the next day, and with the RLS now gone, I know I’m getting enough sleep, even if only in 2 hour ‘batches’, to leave me feeling refreshed the next day.
I’m guessing everyone responds differently to drugs, but personally I wouldn’t worry about the Buprenorphine causing a little wakefulness, because once your body can lie still, you’ll be surprised at how quickly it remembers how to sleep again.
I never would have believed what I’ve just written even earlier this year. But 0.4mg Buprenorphine has honestly given me my life back. I’d urge you to give it a go.
Which specialist are you seeing? A lot will depend on that.
Thank you for that detailed reply. I’m in Aberdeenshire so just seeing the local neurologist who may not have even heard of RLS but he will after I’ve seen him!
Hi Claire, I see you are UK. May I ask who you got to prescribe the Buprenorphine. I would love to try this alternative but it’s not a recognised treatment for RLS and my neurologist says he his very conventional. Many many thanks 🙏 David
Hello (from another Clare!) I missed this and am interested to know who in the UK is prescribing it. I'm also wondering if one got a prescription from a doctor abroad would UK chemists issue the prescription?? Thanks!
Hi Islay. I also have insomnia and RLS but need only a low dose (0.1mg) Buprenorphine taken sublingually to block the RL.The drug information leaflet gives conflicting advice about it possibly causing drowsiness or insomnia. I don't believe there is any question of it causing a "high" or significant alertness.
For me taking away the RL allows me to fall asleep but I do wake and go back to sleep throughout the night until early morning when it becomes more difficult.
I've only been taking the Buprenorphine for a couple of months and I'm hoping that things will settle down in the latter part of the night after a years of RL sleep disruption.
To a degree the drug accumulates in the system so I'd start off very low and build up to the minimum needed. Get a pill cutter and try half a tablet to begin. Ease your way in to minimize the initial nausea, constipation and dizziness that can occur. It's absolutely worth it and can be life changing.
But first off check your GP will prescribe Buprenorphine for RL, even on specialist advice to do so. If not you'll need to find a practice that will. Also I'd be prepared to travel anywhere in the country to see a specialist who is informed on RLS. I believe this forum has a list of names.
I was hoping my insomnia was down to RLS but it does seems to be separate. It means I’m taking all sorts of medications to deal with both and it’s a mess. I have all sorts of paradoxical problems. Buprenorphine for instance gives me both drowsiness and wakefulness, at different times, and every night is different. Talk about chaos. But not everyone responds the same. It’s worth a try.
It really is, the nervous system is infinitely complex so there are all these domino/knock on effects and reactive stuff that no one can even examine, so we have to just go by experience, which is all the harder as doctors are so single minded they don’t even believe people can have genuine insomnia. I’ve been struggling for decades. I guess you must have, too?
I’m sorry to hear that. Mine came on all of a sudden 4-5 years ago along with perimenopause which I’m convinced is related. I’d had RLS off and now and again through my life but since this started it’s been severe and every single night with no let up.
Ok, yes I’m very sure a lot of this is hormonal, too - hormones are as much part of the nervous system as neurotransmitters which sometimes also seem to serve dual purposes from what I gather. I had a good phase just before menopause but that’s unusual. Perhaps less progesterone did the trick, who knows! My insomnia came on all of a sudden when I was 33 and had started to use antidepressants… I didn’t see the potential connection back then.
Im not sure how I actually stood it for so long, didn’t have a choice really as I didn’t have any knowledge initially and thought it wasn’t serious enough to bother the GP with!
Can’t work out exactly when it started. It was either end 2019 or start 2020. At first I changed my diet to carnivore, then someone eventually suggested perimenopause so I actually started HRT hoping that was the answer.
Then I faffed about with the doses, types, added in testosterone eventually. I spent every night up and down like a yo-yo reading my kindle paperwhite (so no blue light) to try and distract me.
Because it was lock down and then the aftermath of that I didn’t go to my GP much. Eventually I spoke to him and we tried melatonin (awful!) then zopiclone (awful) he offered ropinirole but because I had read about ICD I didn’t want it (knew nothing about augmentation at that point)
My mum who also has rls amongst other things kept telling me to ask for gabapentin but I resisted as I had heard bad things about it.
Eventually my quality of life, because of the no sleep got so bad I asked for it. That was about the time I found the Facebook groups and then someone recommended this page.
Then I had an operation and they gave me dihydrocodeine and it was the first time my legs had switched off at night since they started!
I still woke up a few times but with no rls. Bliss. It lasted 4 nights, that was April this year. Of course I had to stop taking it regularly so things started up again.
I then was increasing the dose of gaba but got the gp to agree to prescribe me 1 dihydrocodeine at night which helps for a few hours. Then I switched to Pregabalin so I could increase the dose further and I’m at 450mg as of last night.
Also last year I was diagnosed with ADHD and have been on several different medications with that which has of course complicated things further. I’ve stopped those just now so I can go to the neurologist with uncomplicated information.
I’ve been chasing the theory of low dopamine as all 3 of my issues have that in common and came on/got worse at the same time.
Of course between all this there was vitamins, magnesium, creams, sprays, CBD, THC, kinesiology, hypnosis, alternative therapies, you know all the things that folk tell you to do that worked for their uncles neighbours dog lol!
Sounds like a light switch situation, which is somewhat unusual for RLS, unless there is a trigger ie new medication, injury. You went from barely there to always there RLS. With that said, menopause does seem to cause a worsening of symptoms for many. Not so much “perimenopause.”
I know you’ve tried iron, but there’s only one way to take it, as far as I’m concerned. You take 50 to 60mg of ferrous bisglycinate, on an empty stomach, about two hours before bed. By doing this, my RLS is gone in 1.5 hours, for one night. Many people on here have gotten consistent relief with this protocol. RLS really isn’t about ferritin. It’s about serum iron (and that free floating pool of dopamine in our brain), both of which plummet dramatically at night…. and we get RLS. Taking a DA at night helps, even in the absence of taking iron. And taking iron helps, even in the absence of a DA. PLUS, the RLS brain is incapable of storing much iron for a rainy day. Or should I say night? The non-RLS world has plenty of stored brain iron, that they can draw upon at night. So as you can tell, our brains rely heavily on that serum iron. Iron is the grease and glue that keeps our lousy dopamine transport system chugging along. And dopamine is the fuel.
Lastly, I want you to know there is a good chance you have built up your receptors by taking HRT. That’s what female hormones (even testosterone) do. They keep our receptors in tip top shape and is probably the reason our RLS worsens with menopause. You see, that’s really what RLS is - small and few dopamine receptors as mentioned above, along with a lack of brain iron. NOT a lack of bodily stored iron. We have dozens and dozens of people on here with ferritin between 300 and 1200 with raging,, out of control RLS.
By day, our lousy receptors are generally good enough, but when serum iron and dopamine plummet, we’re in trouble. The vast majority of women can take HRT and never feel so much as a twinge of RLS. But most of us, who are predisposed to RLS, suffer too much with increased symptoms when we take it. HRT acts similar to a dopamine “antagonist.” Just the opposite of dopamine agonists, which down-regulate our receptors. If HRT was short-lived in our systems, I would take a boat load of it by day. I tried it. After a few days my RLS was worse.
With all that said, I truly believe you should try a one week wash out. Meaning, taper off of it completely and do one week of wash out to see if symptoms improve. If not, go right back on.
Thanks for your suggestions! As I am seeing the neurologist next week I got my ferritin checked and it was 24 so I have been given ferrous fumarate again (although interestingly 1 a day as opposed to 3 a day I think used to get?)
Would the bisglycinate be on top of that? And at the same dose?
Interesting thought about the HRT it has crossed my mind. I have an appointment with a new meno specialist next week too so we shall see.
Yep, bisglycinate is above. They usually come in 20 or 25 or 28mg capsules. I take two 28mg capsules which is about 300% of the recommended daily allowance. I would take the fumarate as described - two hours before bed, on an empty stomach and with some vitamin c if you have it. Good luck! Keep us posted.
Thanks! I will hold off until I see what the consultant says and also to see how the increased Pregabalin dose goes so I don’t change too many things at once.
Hi , Buprenorphine tabs cured my Rls 98% but insomnia is pretty bad most nights . Thurs night still awake at 3.30am , Friday night asleep by 12 but then awake 3am for 2 hrs . Tonight asleep by 22 but then awake at 00. Having said that , give me insomnia anytime over rls ! I read , listen to music and write to do lists ! Good luck
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