Hi Guys, just wanted to post my story here just in case it can be worthy for somebody.
More than 2 years ago I started to take clonazepam to treat insomnia. I really think that in those 2 years I had symptoms of RLS everyday.
Now, 3 months have passed since I took the last pill of clonazepam. Last month was very good for me. I didn't experience almost any RLS symptom and I could be a very much more active person again. I could help very well with the housework, cooking and studying. Before I couldn't do this.
So, I think that removing clonazepam from my life has really helped in removing RLS too. To being able to sleep I changed my lifestyle by removing a lot of things I perceived were stressors. Hope this helps to somebody.
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MikeGpe
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Hi Mike, That’s good to hear. Thank you for sharing.
I’m on a tapering program coming off clonazepam after years of use, which had stopped the restless leg but caused a paradoxical effect - increase in anxiety and disturbed sleep. I have learned a lot about clonazepam and determined to continue to decrease it until I’m clear of it - last bit to go... but the restless leg has come back every night. I’ve just joined this forum to hear what non medical treatments help others.
Hi Lunatha. I'm pleased to hear that you're managing to wean off clonazepam.
If this was the only medication you were ever prescribed for RLS, I'm surprised it worked because it isn't a drug recommended for RLS, it is a sedative. Nonetheless if it did work, then weaning off will mean your symptoms will get worse.
There are non-pharmacolgical treatments and remedies for RLS which you can try.
My apologies if you have alreay tried anything I've written below. I have no way of knowing.
The very first thing that any doctor should consider for a diagnosis of RLS is investigating if you have iron deficiency.
Iron deficiency is a major causative factor in RLS and hence, iron therapy is a treatment for it. Compared to this, RLS medications only relieve symptoms, they do not treat the cause.
This involves blood tests for serum iron, transferrin and ferritin. A simple rule is that if you suffer RLS and your ferritin is less than 75 then you may benefit from starting taking an oral iron supplement with the aim of raising ferritin to at least 100. 50% of RLS sufferers benefit from this.
If your ferritin is already over 75, unfortunately it becomes very difficult to raise it further by taking an oral iron supplement.
Please be aware that iron deficiency can exist without there being any evidence of iron deficiency anaemia. Also be aware that your Dr may not know that RLS sufferers have a specific need for iron that people without it don't.
Iron therapy can take months to work.
In addition blood tests for vitamins B12 and D would be useful and if you have any deficiency in these then oral supplements may help. MOST people are vitamin D deficient.
Some antioxidant supplements may help e.g. celery juice (tablets).
Some people find magnesium helpful.
The next thing you could do is to consider whether anything is aggravating your RLS i.e. making it worse.
There are two main thing which can aggravate RLS and if these can be avoided then symptoms can improve. These are
1 Other medication
2 Foods and inflammation.
There are many medicines that can make RLS worse. These include, mainly antidepressants and sedating antihistamines, but also some antacids, some anti-emetics, some statins, some blood pressure meds, some heart meds, non-potassium sparing diuretics plus others.
Foods/drinks which are best to be avoided are alcohol, caffeine and sugar. Sugar in any form.
Excessive carbohydrates in a diet can promote inflammation which is a mediating factor in RLS. Some people do manage their RLS with a low carbohydrate diet It differs between people but diets that have been found to be helpful are low oxalate, gluten free, lactose free or anti-inmflammatory.
Treatment of any other bowel inflammation, if you have it is also helpul e.g. H Pylori, IBS, SIBO.
You may discover what might suit you by keeping a food diary.
There's 2 ways of managing RLS, one is to do things that prevent symptoms occurring and the other is to do things to relieve once they've started.
Things done to relieve, are usually temporary.
You'll probably get a few suggestions about various things that people have found to be helpful from herbal remedise to various devices. You can also read other peoples' posts to see what they've found helps.
I suggest it's good to be a little skeptical about some claims especially where the particular thing is expensive. It's good to find out more about these things or read what other people have said about them.
One example of this is "CBD oil". This is a just a label used for a variety of products. How effective any product is seems to depend on its content. It does appear that full spectrum CBD oil can be effective for RLS. "Medicinal cannabis" is also apparently effective.
Note that full spectrum CBD is not legally obtainable in many countries or states.
If all else fails and your RLS becomes very severe then if you haven't already tried any, there are specific medicines recommended for RLS that are known to be effective. They're not without side effects or risks, but taking one may give more benefit than drawback.
If you live in the UK, then I can give you a further useful link.
I wish you well
Thansk for sharing.
Very pleased to hear this.
It seems like you've got your life back.
Clonazepam is not mean't for long term use and because it's a long acting drug, it can possibly cause almost permanent tiredness.
Glad you've got off it.
I think others will beneift from waht you've written.
Very informative, thank you for your detailed and knowledgeable reply.
I've had RL all my life - I can remember as young as 8 being in quite a bit of distress - it was put down to growing pains. I was diagnosed in my 20's and by my 30's was on Diazepam, then Clonazepam.
I've discovered only today that I may be experiencing what's called a rebound effect from withdrawal of the benzo. I am hopeful that once the drug is out of my system, the RL will ease up. In the meantime I just have to be patient.
I will be asking my G.P for a referral to the sleep disorder clinic for further investigations as I am not going to accept any prescription medication and will find a way to manage the symptoms the best I can. Its clear that with this condition we all have to find what combination works for ourself - with a little help from each other in sharing what helps... and also what hasn't.
I find laying in a certain position helps.. on my front (prone position) my feet elavated resting on a pillow, this position decreases the muscles around the sacrum area and somehow seems to stop the sensations as if the nerve pathway is disrupted. Stretching forward also helps and massage of the sacrum and lower legs. Magnesium and Iron + Vit D added in the mix..
Benzodiazepines have never been recommended for RLS, only as an addition to RLS medicines to help sleep.
You will not be suffering "rebound" as a consequence of coming off clonazepam, you will be suffering "withdrawal effects" a wholly different matter. Withdrawal effects will last longer than rebound but will eventually fade. Since you were taking clonazepam rather than an RLS medicine your withdrawal effects may include symptoms other than a worsening of RLS symptoms.
I hope you didn't stop taking clonazepam suddenly, this is potentially dangerous. It's necessary to wean off such medicines by slowly reducing the dose, the slower the better really.
Once any withdrawal effects have faded, you may then find yourself experiencing RLS symptoms as you did before taking any medication. They may be worse as RLS gets worse as you get older.
It's difficult to predict how severe your symptoms will be, but I suspect they may not improve because merely stopping clonazepam leaves you without any treatment at all.
If your GP is the same one who prescribed benzodiazepines for RLS, it seems they are quite ignorant of how to manage RLS. So it would be good to see another doctor.
People with RLS are usually referred to a neurology specialist, but can be referred to a sleep specialist if it's also suspected you have a sleep disorder such as sleep apnoea.
Such referrals are usually only done if the first line treatments for RLS have failed. It doesn't seem you've ever had any treatments for RLS specifically so you don't really fit the criteria for a referral, I'm afraid.
If you were to see a sleep specialist, they might discover you have sleep apnoea as I said, they can also ascertain if as well as RLS you have PLMD.
Please note however if you see any specialist, they will only prescribe appropriate medical treatment. They will not give any advice on non-medical remedies. The treatments for both RLS and PLMD are the same.
The first line medicines for RLS can be prescribed by a GP, but the GP has to know what they are.
There are non medical remedies for RLS as I outlined in my previous response. Perhaps you could read this again.
In the meantime I strongly advise you to explore and read the following web site.
Well it seems like my G.P deemed it fit to prescribe benzo for the past 20 years for RL ... tut tut, I shake my head in disbelief. I am on a tapering program with a support service, so am most certainly reducing slowly and safely. They recommended a referral to the sleep disorder clinic. I have a G.P apt soon, so of course will definitely explore getting as much help as possible. I'm very reluctant to try any medications for RL as the side effects seems just as bad - and it seems that augmentation eventually occurs with most of them anyway.
I'm curious - are you medically trained? - you have been very thorough and clear in your advice, which is very much appreciated. I shall follow the links read some more posts 🙏
As I say, you perhaps need to see another doctor. However, from my own experience and other peoples frequent comments it is quite common for GPs to be quite ignorant when it comes to RLS. In most cases this is excusable and unsurprising. It's the doctors who fail to admit their ignorance that's the problem.
It's almost necessary to be as well informed yourself as you possibly can.
It's not true that all RLS medications inevitably cause augmentation. Recently it's been recommnedned that DAs be avoided because they carry a high risk of it. The A2Ds carry a much less risk.
Some people have to give up taking either when side effects or complications are worse than their RLS, but for a lot of people that's not the case.
As a muscle relaxant, clonazepam can work to reduce the severity of limb movements.
You're correct in that other benzos don't necessarily reduce limb movement, but can promote a depth of sleep not otherwise obtainable with persistent limb movement.
Benzos (such as clonaz and clobazam) do tend to be used in paediatric populations for severe PLMD /RLS).
Hi Lunatha, in reply to your desire to attend a sleep lab for observation I can say that I did this as part of my total plan to do what I could to eliminate/alleviate Rest Leg symptoms. This was after an iron infusion for iron deficiency and before a discovery of H Pylori stomach infection... all of which contributed to my Rest Leg symptoms. I can say for me that the sleep lab was a positive experience. I have moderate sleep apnea although I am a thin framed female and suffer no other known medical illnesses. My anatomical facial structure (small jaw) causes my mouth to open and fall backwards when sleeping obstructing my airway. I've suffered this for years without any known symptoms from it. However, once I was fitted for a dental sleep appliance and used it I can say it definitely brought a better night's sleep and from what I can tell keeps the restless legs at bay. I believe my legs and whole body is more oxygenated thus helping the muscles relax at night.
Wow.. Thats really good to hear that you had such a positive experience with the sleep clinic and that your symptoms were investigated thoroughly. Thats a good outcome - really glad you're sleeping better.
I shall be on the slow road to getting referrals and investigating the RL thoroughly too.
Hi A couple of things in your post caught my eye. Like you, I've had RLS for most of my life, though I remember it starting at about age 15, 50 years ago. I repeatedly asked doctors throughout my life what was causing the awful discomfort, but was never diagnosed. And I remember being told when I was around 30 that it was "growing pains" that caused my problems and that was that. I found out about "RLS" donkey's years later, and actually told my doctor what my condition was (later confirmed by neurologist)! But I am really interested about your comments on lying in a downward facing prone position. I find this helpful too - I keep extra pillows by my bed and lie on my stomach with my head propped up high when I feel the "creepy legs" coming on . (I have low back pain and I'm convinced this makes my RLS worst during the night, although pain and neurological specialists have assured me there is no connection between lumbar/sacral disc degeneration and RLS.) Ok it might not be easy to get to sleep in this "bent backwards" position, but I find if it relieves the RLS it's worth the effort. (From near Warrington)
I recall being told to lie on my side curled up - knees to chest by a neurologist who I saw around the same time I was prescribed Clonazepam. I tried this and it gave some relief, but not enough. So interestingly, when I feel the RL coming on, I get a sensation in my sacrum area which rapidly spreads to my legs. I have used a massager on the sacrum before bed and then laid in a prone position with my feet resting on a pillow - sometimes if its really bad I bend more at the knees, raising the feet up higher so that the soles of the feet are facing towards the ceiling... all under the quilt. What I feel is the nerve pathway being soothed from excessive activity. I lay like this for a short while, then go back to a "normal" position, so it seems back bends help me as do forward bends. It's very interesting to hear you also get some relief from this position. I wonder if others also have a particular position that helps them.
I lay with a pillow that's lower and my head to the side which is more relaxing
Thanks Lunatha. I bet if we searched past postings there would be many suggestions for positions to ease RLS. But I find it too easy, when I'm awake at night, to think, "Shall I take one of these pills or one of those pills etc ... ". I am on some medications, but agree any activities that help control the monster are worth trying! Medication can't give all the answers, clearly. Best wishes.
Im complete opposite i just couldnt get much sleep with my rls i was at end of my tether gp prescribed few other tablets none work i then got clonazapam and it all changed i finally got a full nights sleep it was just brilliant i continue to take them and i feel human again im not a moany grumpy person who was just exhausted
Clonazepam really helped me too, until it caused other problems, but I was on it 20 years, so not surprising. Shame though as it had always worked great for the RL.
I thought I'd share how things have been over the last few weeks.
Like you Mike, since coming off Clonazepam (since the 5th of May) I've not had any RL. I cant quite believe it, it feels like a miracle and for now I have my life back.
I'm sleeping solidly for 8 hours, this is unheard of. I have one cup of red bush tea in the eve with Magnesium in it, that's it.
Sods law though, I've been referred to a neurologist, but it seems RL is in remission - I've had moments of it being in remission - four or five times over my lifetime for a few months at a time. I'd very much like to understand more about what triggers a remission.
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