So whilst I tend to have fidgety legs during the day, I'm not bothered by them. However, night times are a different matter. I have no problems falling asleep but approx. 90 mins into my sleep I'm awoken by me restless legs and am often then awake for 2-4 hours before falling asleep again.
I was originally put on Ropinirole which helped break this cycle and allowed me to have periods without any need for it. However, due to me having a rare form of autoimmune liver disease I was moved to Pramexipole which I found less effective.
I was then moved to 150mg Pregablin which didn't seem to help at all other than making me very groggy in the morning. I'm now on a combination of 0.088mg of Pramexipole and 75mg of Pregablin which worked fine until recently but the pattern has returned.
I reluctant to increase the dose of Pramexipole for all the reasons discussed on this forum (augmentation, withdrawal etc.) and also don't want to increase my Pregablin dose due to the grogginess it causes.
So, keen to understand if other folks experience this pattern and if so, what they've found most effective as a treatment before I go back to my neurologist.
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You're already taking a combination of two drugs known to be effective for RLS. Taking a low dose of each may be better than taking a higher dose of one of them.
How long were you taking the 150mg pregabalin for? Drowsiness is a side effect that can wear off once you're more used to it. That doesn't work for everyone though.
This is a technical bit! When you go to sleep at night you first fall into "deep sleep" aka "slow wave sleep". There are 4 stages of this and stage 4 is the deepest/slowest. This happens fairly quickly, then less quickly you rise out of deep sleep and then have a short period of "paradoxical" aka "REM sleep".
It's difficult to wake somebody when they're in deep sleep and easy when in REM sleep.
This cycle takes about 90 mins.
If you don't wake, you would go into the next cycle, each cycle is shallower and the REM periods longer.
People with RLS usually have problems falling asleep in the first place because of symptoms You apparently don't, but it does seem you have symptoms later, which wakes you up during REM sleep.
One thing you might coinsider is taking your meds later. This may be a matter of trial and error.
In addition, though many scoff at this, sleep hygiene measures can help.
Your doctor should take blood tests for serum iron, transferrin and ferritin. Iron deficiency is a known causative factor in RLS and iron therapy is a treatment. A simple guide is if your ferritin is less than 75 then start taking an oral iron supplement. Raising ferritin to at least 100 can benefit 50% of RLS sufferers.
If ferritin is greater than 75, but less than 200, it would be better to have an IV iron infusion. This can treat 60% of sufferers.
Thanks Manerva! Lots of good information for me to consider. I tried the 150mg of Pregablin for approx 3 weeks but hated how I felt in the morning. Perhaps I need to try it for longer? My last Ferritin level was 155 ug/L but has been as high as 244ug/L. Are you saying that an IV iron infusion is the quickest way to get it above 200?
Pregabalin takes at least 3 weeks to start fulty working. So if you only took it 3 weeks, you proabably didn't get the full benefit.
The initial side effects of pregabalin and gabapentin, which I take, are drowsiness, dizziness and difficulty walking. That's why it's best to only take it at night, you can't fall over in bed!
I remember when I first started taking gabapentin I had to literally crawl upstairs.
These inital side effects usually wear off after a few weeks. So yes, you perhaps ought to try it for longer before giving up on it.
The other thing is you're supposed to begin on a "starting dose", depending on age this could be 75mg, 50mg or even 25 mg, then gradually build up the dose. Starting immediately on 150mg or even 100mg is not a good idea!
An IV infusion isn't only the quickest way to increase ferritin levels, but if your ferritin is over 100 it's probably going to be the only way.
It's possible that you "naturally" have a ferritin above 150, it's still in the normal range, but it doesn't seem typical. It also doesn't mean that raising it higher e.g 350 or more won't help.
One possibility, which I obviously can't say applies to you, but the ferritin level can be skewed deceptively up when you have any inflammation.
If you have a known inflammatory condition then this may explain the high ferritin. If not then you may have some "sub-clinical" inflammation which you may not be aware of.
Thanks for the additional thoughts. I'll definitely try the 150mg dose again. I started on 75mg for 2 weeks and that was fine but when I doubled to 150mg that was when I found the side affects to be unpleasant but persevered for another 3 weeks before dropping back to 75mg. Also, I sometimes need to get up in the night and blimey, it felt like I was drunk! 😏
As for inflammation, because of my autoimmune conditions (PSC and UC) my system is always in an inflamed state. My last ESR was 49 mm/h but hasn't been below 20 for 10 years so that might explain the high ferritin. I'll discuss the possibility of an IV infusion with the GP - assuming they agree to do this, is it then easy to maintain levels above 200?
Hi, this is pretty much my experience, fall asleep very quickly and then 60 to 90 minutes later I am woken by the need to move. This normally lasts for 2 to 4 hours as you say but for me the most effective approach is to get up and be busy for 20 minutes e.g. empty the dishwasher piece by piece which makes you walk round the kitchen quite a lot, then 60 seconds stretching quads hamstrings and calves, four or five deep slow squats and that normally gets me another 30 to 120 minutes of sleep. I normally have to repeat this at least once or twice but then after about 4 am I will mostly get back to sleep even if it is a bit restless. If I do very intense exercise with a lot of strong muscle contractions that makes it significantly worse, the best is a bit of light exercise like a two or 3 mile walk, but I have found that you can increase the aerobic intensity quite a lot as long as you keep the muscle strain low if that makes sense.
One thing I don’t tend to do is go to bed too early as I find that’s increases the period during which the RLS is bad. I normally go to sleep between 12.30 and 1 am.
Definitely agree that intense exercise too late in the day hugely disrupts my sleep. Also agree that getting up helps to break the cycle - just lying there tends to send the brain into overdrive which in turn makes my restless legs far worse.
I have had RLS for 20 years and your cycle is similar to mine. I can typically fall asleep but wake up anywhere from 15-90 minutes later without medication. Some nights I sleep just fine. Typically after 2 am I can fall asleep and stay asleep. I have been able to take a very low dose of Pramexipole (12.5-25mg) when needed. Partially I think because I don't take it unless I wake up and then I start with the 12.5 initially. I recently read about Kratom and am currently having alot of success with the red vein of this. To add to the RLS I am post menopausal and have seasonal allergies. The allergy meds send my RLS into hyper mode but I've been able to sleep now with the Kratom. I read "Using Kratom for Chronic Pain and Restless Leg Syndrome" by Mary Leonhardt which led me down this path. It is available on Amazon if you're interested.
Really interesting what you say about allergies. I became allergic to dairy approx 6 years ago and am finding I'm becoming more sensitive as I get older and this in turn seems to aggravate my restless legs. Thanks for the suggestion about reading up on Kratom. I think the UK gov has taken a keen interest in this supplement so it may be a little challenging to get hold of 😏.
Hi there - I used to take Ropinirole which gradually became less effective with time and having read quite a bit about it on this forum decided to withdraw from it (I didn't consult with my GP because I have found the information here, especially from Manerva, has been so much more helpful). I reduced very gradually but even so went through a bad patch with extreme symptoms, leg kicking etc, but I got through it eventually and now take 150mg Pregabalin at night with 2.5mg Diazepam. Touch wood, things have improved but I don't think there's a 100% remedy for this horrible condition. Good luck with it!
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