After nearly a year of experimenting with various options after withdrawing from pramipexole due to severe augmentation, my symptoms are now mercifully fairly controlled with 2 to 3 grams of kratom taken with agmatine sulfate at bedtime. I also take ferrous bisglycinate in the evening on an empty stomach and I have my relaxis pad for breakthrough symptoms.
However, unless I take something for it I am plagued with insomnia - so I will lie awake and alert nearly all night. Typically I was an excellent sleeper until rls took hold after the birth of my last baby nearly 15 years ago. Once I started taking pramipexole nearly 10 years ago I again slept incredibly well. Now however I am ridiculously awake, especially considering I was so tired in the daytime. As I have said in other places, I almost enjoy lying awake in bed provided I don't have the jumpy legs - I listen to audiobooks and do puzzles (which used to be a sure-fire way to get me to sleep) but I can hardly function during the day.
At breakfast I take magnesium, vit D3, B complex, Taurine, L Tyrosine, L Theonine, Krill oil and passion flower drops in the hope of making myself more alert during the day.
I also take taurine and passion flower drops in the evening and some cbd oil sublingually. I use aromatherapy oils on my wrists. I either take a long walk or lift weights most days and I have a bath with epsom salts and lavender oil most evenings. Most of these seem to help in one way or another but nothing guarantees sleep.
I have purchased some phosphatydilserene which is supposed to help turning off cortisol levels in the evening but I haven't tried it yet. The only thing that works invariably is cannabis baked into a cookie. This has been a life-saver for me but I am not a recreational drug user and am not very happy about taking it when it is illegal. Also, I am concerned that it can build up in the body and may ultimately cause other unlooked for problems. Ideally I would like to have something to alternate with it at least but so far nothing works.
I am aware that many consider that insomnia is yet another symptom of rls and that certainly accords with my own experience but what does anyone else do or take for it?
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involuntarydancer
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John Hopkins did a study of people who have control over their RLS with their meds but found they still cant sleep at night. They found that people can have high amounts of Glutamate and that seems to stop them sleeping. The study is on the internet some where. Whether that is every ones problem i wouldnt know. as another thing seems to be our body clocks are out of sinc, with so many years of bad sleeping.
Hi Elisse, thanks so much for that article - very interesting. I had heard about that study previously - it seems to describe exactly my problem. I wonder if there is anything that can help with the glutamate production. I think I read somewhere that gabapentin does ... I tried pregabalin and found the side effects very difficult but maybe I would tolerate gabapentin better. Sigh! Another trip to my GP for prescription drugs beckons.
There are lists on Google of foods high in Glutamate. Maybe avoiding those might reduce levels of it .It is a while since I read that article so I nay have it wrong but isn't the aim to lower Glutamate not to increase production of it? X
Hi Connie, I have some of that - I took it for a few days a while back but didn't notice a huge difference. Maybe I should try it again. Do you find it helps you to get to sleep? How much do you take? Thanks for your reply.
Yes; I went a bit mad about two or three weeks ago and bought almost every supplement I have ever seen suggested for rls. I have added them in gradually but I don't think any of them is making much difference.
Your experience with vit D is very interesting - never heard of it before. My insomnia pre-dates my taking it but I'll try eliminating it for a few days.
Ahhh, interesting about the Vit D3. I read a long time ago that it actually gets converted into a steroid in the body. Sunlight might as well. So it's great for tamping down the symptoms of autoimmune diseases. But as you probably know, steroids do have that tendency of keeping people awake. Maybe we're really not meant to ingest vitamin d by night. Primitive man would have gotten his day's supply of vitamin d by high noon. The body tightly regulates vitamin D as it does iron - meaning it can be very stingy with its stores. Anyways, the most bizarre thing with the sunlight is that it actually interacts with the cholesterol on your skin and then your body absorbs that sun drenched cholesterol over a period of several days. I don't know if you've heard of Dr. Mercola but he recommends only using water when you shower and save soap for places like under your arms. Or not to bathe everyday and give your body a chance to absorb some of that vitamin d.
Hi Dancer, more people than you would ever imagine suffer with insomnia at various points in their life. I have gone through several bad bouts that always resolved on their own when I was young and without care. Third time when I was married, had a full time job and a mortgage I got a script for klonopin. Unlike you my insomnia is what my husband fondly calls a "mind f---" He's right, it's like a cat chasing it's tail. The more you chase the more elusive it becomes. If you know anything about Michael Jackson you will know that he was treated for a "sleep" disorder when what he really had was an anxiety disorder. Not much help I know but just wanted to let you know you are in good (?) company.
Like you my RLS started after birth of second child ( 20 yrs ago) - although I suspect it's more related to an MS attack I had while pregnant , and I also take most of the supplements you mention. The article Elisse sent from Johns Hopkins is interesting but I was on gabapentin for 6 months and it didn't control the RLS brilliantly and I didn't get more than 2 hrs sleep in one go while taking it.
The point madlegs makes about vit D3 is also interesting- I've taken that at very high levels (10,000iu) for years as it's supposed to help MS. I may stop taking it for a few weeks to see if it makes a difference.
Like Connie and you, I've also tried Mucuna pruriens organic powder and the tincture but it didn't seem to make any difference either but I've just ordered some more to give it another go.
It really is a confusing minefield out there, trying to find out what works for some people and then seeing if it helps you.
Thanks for starting the post- maybe we can find that elusive herb/vitamin/mineral etc that works for us. It's 5am and I am wide awake ( but at least no jumpy legs) but I know I'll suffer tomorrow through the lack of sleep.
Take care all and hope that some of you are getting some much needed sleep.
I see this is an old post but just in case, try taking 400 mg Mg just before bed time. I switched from morning to evening about 2 weeks ago and contrary to the last 2 years, I have consistently slept thru the night and awakened feeling energized and ready to go. That is until I started the withdrawal from Pramipexole.
involuntarydancer I realize this post is 4 years old, but I am researching Taurine. I noticed you were taking it. Do you still? Did it ever help with sleep? Did you ever make progress on your sleep issues? I seem to have gotten control of the RLS part, now I am working on the sleeping part. The one thing that I find weird is I respond to Ibuprofen, i.e. I think the Glutamate causes inflammation.
I don't take it any more. I don't take any supplements other than iron. So far as I can recall, the legs played up unexpectedly a couple of times when I was taking it which is what caused me to stop. This could have been coincidence (probably was) but there wasn't enough of a positive to overcome an immediate negative prejudice. If anything, I seem to recall that it wasn't good for sleep and I had to take it early in the day but I wouldn't wholly trust my memory. As you observe - it's a long time ago and I have tried so many things ... Interesting about your experience with ibuprofen. I must look out for that.
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