I have just had a telephone appointment with a Neurologist which lasted all of 90 seconds, part of which he spent looking through my notes and came to the conclusion that I should try Clonazepam instead of Pregabalin for 6 months. He wasn't interested in listening to anything I had to say about iron, ferritin etc.
I have tried different medications over the years for severe RLS including Ropinirole (which I managed to wean myself off after reading the excellent advice on this forum) and Gabapentin. Pregabalin 450mgs isn't doing a brilliant job either, I have approximately 2 to 4 hours sleep every night, some in bed, some on the sofa and often on the floor, it's exhausting. Luckily I'm retired and don't have to hold down a job any more. I'm trying to get my ferritin level up (from 17) but it's a slow process.
Question is, does anyone have positive experience with Clonazepam? I know nothing about it and would like to be armed with some information when my GP changes my prescription. This forum is a mine of precious information straight from the horse's mouth, I wouldn't go anywhere else for such reliable help, thank you all.
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Clonazepam can help some people so is worth a try but it has a half life of 40 hours so you are likely to be sleepy the next day. The usual thing to take when pregabalin doesn't work is a low dose opioid. The best one is buprenorphine.It can be difficult to convince your doctor to prescribe an opioid so it is a good idea to print out the section in the Mayo Clinic Updated Algorithm on RLS to give to him/her. On coming off the pregabalin, it it important to do so very slowly like 25 mg every 2 weeks. Otherwise you will have withdrawal effects. If you do so slowly enough you won't have any.
I haven't used clonazepam bit have used diazapam for RLS. It helped when my symptoms were mild. It didn't stop symptoms but made me sleepy enough to bypass them.
I have tried diazepam but I hated the feeling of being dopey and still having RLS! I'm hoping Clonazepam won't have the same result but time will tell. Anything's worth a go!
Thanks Sue, I have asked for Buprenorphine but it was hardly out of my mouth before my GP shook his head vehemently and said it was out of the question and we started the iron (ferrous sulphate) regime. I bought Gentle Iron instead and have been using that although not religiously as it does affect my gut and I'm about due to have another blood test. I hold out little hope. Somehow I have settled into the 2-4 hours sleep pattern and can survive (just) on it. Thanks for the tip about Mayo Clinic algorithm. I've given him reading material before but I don't think he takes it on board. Maybe it's time to change my GP!
It's a muscle relaxant so helps with dozing off. Helps with sleep and panic disorder.
However RLs tend to kick in and wake you up after a couple of hours. Depending on the severity of your RLS. Those with sevear RLS don't usually find it stops the RLS at all. Sadly.
I wonder which Neuro you see. Can you afford to see a private neuro that might be more helpfull and prescribe Buprenorphine?
I have that now and it is a life changer If you pm me I can let you know who helped me.
No one should have to suffer with this cruel disease.
Thank you so much for your helpful comments. I am 75 now, a lifelong sufferer but it has got worse over the years. The doctor I spoke to obviously didn't have a clue about RLS or show any interest at all - I tried to explain about ferritin levels but he looked at my last blood result and told me I wasn't anaemic , which of course I knew he would say. I felt he ticked the box that completed his clinic quota and that was that! I'll speak to my GP before changing over, and about Buprenorphine, but at the first mention of it some months ago he abruptly changed the subject! What compassion? I live in the far SW England - not sure how to pm you, my tech skills not up to much. What would we do without this forum ... thanks again.🙂🙂
my GP prescribed Clonazepam 1mg for me at night alongside Pregabalin. I suffer from acute anxiety and was on on Sertraline, which was a disaster for my RLS which I have suffered all my life. The Pregabalin 100mg in morning and 200 mg at night, split because my RLS often occurred in the daytime too., replaced the sertraline and certainly eliminated (almost) the RLS. The Clonazepam gives me a good nights sleep, something I have never ever had all my life( I’m 72), and I don’t suffer RLS at all now. Admittedly I can be slow to get going in the mornings but being retired it doesn’t bother me. I’m not sure Clonazepam alone would eliminate my RLS but I would certainly recommend giving it a go, with Pregabalin if possible.
Hi ... I was taken off Citalopram as an anti-depressant because it kicks off RLS. I have been put on Sertraline as an alternative. But you say in your post that Sertraline is no good for RLS? Is that correct? With thanks.
sertraline is an SSRI and all the antidepressants in that class are not recommended as they have RLS as a side effect. It was very difficult to find an antidepressant that doesn’t kick off RLS. I was recommended on here to ask for Trazadone but that didn’t agree with me at all. I really wish I could return to sertraline as it worked for the depression and anxiety but the RLS was acting against it by destroying my sleep etc. Hence the Pregabalin which is prescribed for anxiety disorder and the clonazepam which is also used for panic attacks and RLS.
I, for one, consider Clonazepam to be an excellent drug for anxiety. Trazodone is another good one, but meant more for low level anxiety and insomnia. But I want to take you back 7 months when you wrote this in a post: “I explained to my dr that sertraline had caused my restless leg to return. Previously it was under control with iron.” Whaddaya mean by this? What type, amount, and timing of iron did you take? Now that you’re off the sertraline ya ever think about replacing the Pregabalin with the old standby…meaning iron???
I was taking ferrous fumerate twice a day. My ferritin levels had dropped and the gp diagnosed the iron to deal with the RLS. It worked well, but then I started suffering with anxiety and depression again, was put on sertraline and after a couple of months the RLS set in again big time. It was then I discovered on the RLS website that antidepressants of this class are not suitable for people who suffer RLS. Hence the Pregabalin and Clonazepam.
That is so helpful. I take 450mgs Pregabalin and it doesn't really control the RLS until about 2am (I take it around 11pm) then I have between 2-4 hours sleep most nights. If I take it earlier and sleep earlier I'm then up at 4am which is horrible, specially in winter. I'll give the Clonazepam a go and see if it helps with the sleep. Glad to hear things have settled down a bit for you.
It's a terrible thing to say, but I am so glad that you are also finding that Pregabalin 450mg does not work for you .... I have to add Ropinirole to mine to get a couple of hours sleep, and then when I wake up during the night, I take Cocodamyl on top ...
I am having a phone call with my Neurologist in September (probably like your 90 second one), and will do what Sue says below ... ask for Buprenorphine.
If you do get to go on it, please do keep us updated ...
No, not terrible, just fellow sufferers in the same rotten boat! I take 450mgs Pregabalin, an anti-inflammatory (arthritis) and 4 (yes, four) Codydramol all at once - my GP knows but doesn't bat an eyelid! I'm hoping the Clonazepam doesn't just make me groggy - watch this space for an update! Best wishes.
Hello, you definitely need to keep on some pregabalin with the clonazepam. It just knocks you out and doesn’t stop the restless legs as such. I found you only need a half a tablet - or maybe even a quarter. The downsides are it lasts for ever the next day and can cause sudden onset sleep - a bit like narcolepsy- which I found to be frightening. It’s a benzodiazepine - so it is mentioned in the US algorithm to be combined with pregabalin etc Also it’s highly addictive so I wouldn’t personally take it every day.
I think if you combine a small dose with the pregabalin for a few nights you would get more sleep than you’re getting now but definitely don’t try to come off of the pregabalin altogether.
Thank you, that's so helpful. My Pregabalin dose is quite high and has helped over the last few months in that at least I get a little regular sleep but I would hate to be knocked out! Forewarned is forearmed, so many thanks for the heads up, I will certainly proceed with caution. Best wishes.
Hi, your experience of RL sounds similar to mine. Its very sad that the neurologist didn't spend time looking at alternatives. I have been advised on this site to see a RLS specialist, who might prescribe bupenopĥrine, which Sue mentioned to you. The specialist, Professor Walker is based in London at an NHS hospital, but runs a private Clinic. It's not cheap but you only need one or two appointments, via video link if needed. It is worth considering if your doctor won't prescribe it for you. People have reported on this site how effective bupenophrine is. I'm as desperate as you, so will be talking to him soon I hope.I hope your doctor will look at the information from the Mayo Clinic as Sue mentioned, and prescribe it.u
Thank you, yes it's nice to have Prof Walker up one's sleeve and I believe he will do a 'zoom' appointment which would be brilliant as I live in deepest Cornwall. I'm going to try the Clonazepam and see how I get on with it. I think we're all a little bit different in how RLS manifests itself and how we react to different medications and I'm very grateful for all the kind replies and helpful comments I've received since my query.
_ severe RLS since some 7 years old; nowadays 70, retired.
_ excelent experience with Clonazepam downhere. I used to using it for some decades, at very low doses, maximum 0.7 mg, much better than anything else I tried for short times. Not use it anymore. No significant side effect at such maximum dose. It saved my life and career.
_ however, I think Clonazepam is not meant to stop RLS, but rather just musle relaxation, battle anxiety and nightmares, quicker back to sleep, and so on....
Hello and thanks for your helpful input - I'm not expecting a miracle cure but from what you say and bit of respite from anxiety, night pacing and muscles 'letting go' would be a real plus after decades of feeling a freak! Bless you and very best wishes.
I’ve taken can I see Pam doesn’t work for RLS I wouldn’t take it if I were you plus it’s hard to get off. It’s a bitch make sure RLS worse though when you want to get off of it.
Hi there, yes this seems to be the consensus of opinion - it helps sleep but not RLS though if juggled a little can help with anxiety, muscle relaxant etc which would be helpful. I really appreciate everyone's comments, the amount of information available to us on this forum is invaluable and at the end of the day we have to tailor it to our own very specific needs and tolerances. Thanks and very best wishes.
Hi there. I have been taking iron tabs for a number of years and my ferritin is now normally over 100 I also take 30mg of codiene at approx 7pm
Another 30mg codeine at approx midnight than again sometimes at approx 5am. My respiratory specialist who also knows a fair bit about rsl has just put me on clonazepam for my midnight dose
I have only been taking it for a week so early days.
I have been on pramipexol and gabapentin in the past.
That's interesting - do you find regular codeine gives you constipation, which I believe is quite common and can be a problem, especially if also taking iron? I was taking gabapentin before pregabalin, but also trying to raise ferritin level which has been as low as 17. We just have to keep on trying, and being our own guinea pigs - I wish you all the best and look forward to hearing how you get on with Clonazepam.
Hi there . I do have a little trouble with constipation so take coloxyl x 1 tab every few days if needed. Also have prunes daily which seems to help. Re the clonazepam. I have been taking it around midnight each night and then having to still take another codiene approx 1 hr later. It does not appear to help the rls at present but does help me sleep better which is a big positive for me. Will just keep on trying.
Thanks for the update. I'd forgotten about prunes and I love them so I'm grateful for the nudge in that direction! Best of luck, may your sleep continue to improve however slowly, we must be grateful for any crumbs that come our way.
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