Anyone find cocodamol 30/500 helps th... - Restless Legs Syn...

Restless Legs Syndrome
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Anyone find cocodamol 30/500 helps them sleep . And is it ok to take long term

poppppy
poppppy
30 Replies

Hi I am asking this for my sister who is going to join the site . After being awake most nights due to her rls . She happened upon taking cocodamol 30/500 ( 2 tablets ) . These help her sleep all night .

She wondered is this a common drug to take for rls . And is there a risk of addiction . Has anyone found them addictive or had any complications from it . Has anyone become immune to them in time

Thank you so much for your help in advance

30 Replies
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Lapsedrunner

Hello.

Your sister is lucky to have you helping her out! Urge her to come along and find out more about her condition and what help is available.

Cocodamol contains codeine which is part of the “opioid” group of drugs. Opioids will definitely help RLS symptoms but I would urge your sister to go and talk to her doctor as self medicating like this may lead to problems.

Cocodamol has potential for addiction, also it contains paracetamol so care needs to be taken if other paracetamol containing drugs are being used. There is a 8/500 version available, has she tried that (in the short term until she has had medical advice)

Your sister needs to get her Dr to check her ferritin levels to ensure they are 100+ for many of us raising ferritin levels can make a big difference.

If she is on any other meds eg antidepressants, antihistamine s, decongestants, indigestion meds these need to be cross referenced to ensure they are not contributing to RLS. There is a list of these, along with the current guidelines on where to start if she needs medication, “gabapentinoid” drugs are now suggested as first-line medication, NOT dopamine agonists as previously.

There will be some more organised and knowledgeable people along soon who will post some links to relevant information!! (😉) It may be useful for your sister to take this info with her as not all doctors have comprehensive knowledge of RLS.

I wish her all the best!

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poppppy

Thank you very much for taking your time to help us . Great advice thankyou

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Joolsg

Codeine is part of the opioid group but it is the most likely to lead to addiction and co codamol contains paracetamol which can lead to stomach issues. You can get plain codeine 30mg from your GP. The current thinking from the USA is that low dose opioids do not lead to addiction as long as there is no family history of drug abuse/addiction and that the safest is methadone ( but for some strange reason we can't get it here in the UK & when I asked King's College RLS unit why, they replied because they have no research on it & they have no funding to carry out trials). So, your sister could ask GP for plain codeine 30mg or tramadol 50mg ( & try half a pill a night) or oxycontin, all of which will help RLS.

Often opioids lead to tolerance ( where you need to take a higher dose to achieve the same effect) and the current thinking if that happens is to try another ( like switch from codeine to tramadol) or to take a drug holiday to reset the receptors. The latter requires bravery because it means constant RLS every night until the drug holiday is over.

We need to make GPs aware of the latest US research on opioids. I note they are in the UK news again because of over prescription for pain at high doses leading to addiction. However, for RLS, they can be taken at low dose for many years without leading to addiction. Addiction is different to dependence. We are dependent on our meds to control our RLS in the same way that Diabetics are dependent on insulin to control their disease.

As Lapserunner advises, ensure serum ferritin is above 100 and serum iron above 60 as this reduces RLS in over 50% of sufferers.

Hope she finds some relief.

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poppppy
poppppy
in reply to Joolsg

Thank you so much for your reply . I will tell her . Very kind of you to take the time to help

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Manerva

I mainly agree with what Lapsedrunner and Jools write, but I have reservations about using opioids for RLS unless the "first line" treatments have failed.

I wonder then if your sister has previously been prescribed a first line treatment. The two alternatives are either a Dopamine Agonist (DA) or what's known as an alpha2delta ligand. (A2D L).

If your sister has never tried one of these then my suggestion is that she should. If this is the case then it would be better to try an A2D L .as DAs can cause major problems.

As others say, cocodamol, in the long term is not a good idea. There are several reasons for this, for me the main reason is the paracetamol combined with the codeine. It isn't generally well known but relatively small amounts of paracetamol can cause liver failure. If combined with a dependency producing drug (codeine) there is a risk of taking too much (paracetamol).

Codeine phosphate, on its own would be better, but as I state, if your sister hadn't already tried a first line treatment, I think she should do that first.

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poppppy
poppppy
in reply to Manerva

Thank you so much for this . I will tell her . Very kind of you to take the time to reply

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Annieapple

I find Codeine extremely helpful as I have painful RLS. I use the 2mg patch which mainly controls it. However I have some nights that are extremely bad & painful. My RLS comes in cycles. When I notice the symptoms building up I take 2 co codamol after a warm Epsom salt bath. I am very strict, in that I have my own personal rule. I NEVER have it more than 2 nights in a row & I only do that once in any week. This way I don’t build up tolerance or dependence. No matter how bad things get, at least I know I will have 2 good nights sleep during a bad patch. This is my personal way of coping but may not be appropriate for everyone.

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martino

I sometimes have used Zapain which is 30/500. When I was taking Gabapentin it’s efficacy seemed to wear off about 4-5 having taken it at 10.30 so I would take one capsule. This did help me get back to sleep but my head was woolly the next day. I didn’t use them long enough to become addicted but was nervous about this possibility

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Parminter

The codeine is the ingredient that will help, but long-term consumption of any opioid needs the oversight of a professional.

If she does indeed need opioids, there are others that would be a better choice.

The paracetamol content is NOT harmless, and long-term (or even short-term) use can cause harm to the liver, or even liver failure. Why it is so easily available is beyond understanding.

Has she seen a doctor about this, or is she winging it?

If she has familial RLS, then she needs a long-term plan and medical help. Familial RLS slowly worsens over time.

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Jelbea
Jelbea
in reply to Parminter

Hi Parminter - Jelbea here. I note your comment to Poppppy regarding codeine and you say that if she needed a opioid then another one would be better than codeine. I was for years on codeine which then became fairly ineffective and am now taking oxycodone 5 mg in morning and 10 mg. in evening with mixed results. I just wondered your reason for your comment. When codeine worked for me it was very good and with oxycodone sometimes I get relief and on other nights I get severe RL. I may not be on a high enough dose but I suffered a deep vein thrombosis six weeks ago and I am on rivaroxaban (blood thinner) which has a side effect of annoying RLS, so I am not in a position to judge the oxy or indeed to put up the dose until I get off the blood thinner (hopefully in another five weeks). Maybe when things settle after that I will get more relief.

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Parminter
Parminter
in reply to Jelbea

Evening Jelbea - I'm not actually against the codeine, but I have seldom seen it mentioned as an appropriate opioid for RLS. By the time RLS sufferers are really in need of an opioid it is usually a strong one.

I am definitely worried about the paracetamol, and tablets containing both are available OTC in many places worldwide - including where I am. Because paracetamol is available almost everywhere it is presumed to be safe, almost benign - it isn't.

I have taken my share of codeine/para but never for RLS as it would require such a large dose, including a liver-walloping dose of paracetamol.

I now take methadone - for RLS.

I find codeine more 'side-effecty' than the methadone, although M is about thirty times stronger than C.

Codeine/para always seemed to me to be a dirty drug, whereas methadone seems much cleaner.

A quote on paracetamol - ' It is estimated that 150 to 200 deaths and 15 to 20 liver transplants occur as a result of poisoning each year in England and Wales.' Multiply that worldwide and you have a hidden scourge. That is my worry!

Everybody is scared of opioids, with good reason. Perhaps they ought to be just as scared of paracetamol.

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Jelbea
Jelbea
in reply to Parminter

Dear Parminter, Thank you so much for spending time to answer me. Having taken codeine for many years I was worried when I thought you felt it was perhaps a worse opioid than some of the others. I did not take it with paracetamol so no problem there. Its true we are scared of opioids but this is my last chance of help with RL as nothing else was tolerated with severe side effects. I seem able to tolerate oxycodone although I am experiencing depression in morning before I take my tablet. However, I am able to overcome this by knowing it is the effect of the tablets and not true depression. It sounds as if Methadone is better but here in UK we cannot get this for RLS, in fact I am lucky that my GP prescribes the oxy for me.Good to hear from you and thanks again for reply, Take care

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Anne_liz
Anne_liz
in reply to Parminter

I think it is a terrible pity that people are getting so afraid of opioids, especially codeine. Personally I am much more afraid of dopamine drugs and gabapentin type drugs as these are all very strong and, I thing, potentially more dangerous in side effects. The trouble is there are always people wanting ‘highs’ and they give opioids a bad name. Incidentally gabapentin is also used to get high and no one seems to worry about this.

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Parminter
Parminter
in reply to Anne_liz

I agree that both dopamine agonists and gabapentin are very scary drugs. Yet they are handed out like sweeties with very little warning.

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Joolsg
Joolsg
in reply to Anne_liz

Agreed. Hopefully Dr Winkleman’s opioid study ( of which I,& several others on this site, am a participant) will show/prove that low dose opioids are safer for RLS than the DAs & other meds used off licence for RLS. It’s a shame that lax over prescription & abuse has led to restrictions on their use for RLS sufferers.

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Heatherlss
Heatherlss
in reply to Joolsg

Oh wow! You are ? How has it been going for you ?

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Joolsg
Joolsg
in reply to Heatherlss

It’s all done by email and phone. Every 6 months we answer a questionnaire and Dr Winkleman’s team collate the results which are released to US medical research teams & used to convince the FDA that low dose opioids are safe & don’t lead to addiction for RLS sufferers.

massgeneral.org/rls-registry/

If you want to take part, you can sign up here. You need to be taking an opioid med. Although it implies only US residents are involved, people from around the world have signed up.

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Sampsie

I've been taking codeine for 10 years and without it I wouldn't sleep at all. I take Gabapentin too, and neither work alone but both work well together.

I think all drugs have a potential for addiction but if they are only being used to stop symptoms rather than taking them to get a high I personally think it's ok. It's a necessity for me but if your sister starts to feel she is taking it for a high then she should stop immediately. I don't like the affects of nausea and bloating but that's better than no sleep!

I adjust my dose of medication each night as required so I only take what is needed.

Good luck.

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poppppy
poppppy
in reply to Sampsie

Thank you so much for good advice

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Shumbah

Look up Dr Winkelman what he has to say about drugs for RSL

he is currently doing a study on 400 people on opioids for RSL. Very interesting and genuinely trying to make a difference

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poppppy
poppppy
in reply to Shumbah

Thank you so much for your help

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Jane190

Hi I have been on cocodomal for over 20 years. They are very addictive and you do get immune to them.they are helping your sister sleep because she is new to them but that will soon wear of.

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poppppy
poppppy
in reply to Jane190

Thank you for your help I will tell her .

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Eryl

I was prescribed Co codamol for back pain after a cycling accident. Around three days later I woke with severe pain which was so bad that I wondered whether it was indigestion or a heart attack.

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Lapsedrunner
Lapsedrunner
in reply to Eryl

Are you saying that it was related to the cocodamol?

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Eryl
Eryl
in reply to Lapsedrunner

Yes. My brother was a paramedic and he said it was a known side effect.

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Lapsedrunner
Lapsedrunner
in reply to Eryl

Worth saying here that any medication should be taken whilst upright and washed down with some good gulps of water. Tablets can otherwise sit in your oesophagus and irritate it, giving the sort of symptoms you describe

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poppppy
poppppy
in reply to Eryl

Thank you for your help

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Anne_liz

I have taken just codeine for over 10 years and have never had my problem with addiction, no desire to take more. I started with just 30 mg at night, and later reduced to 15 mg, which works almost as well. I do occasionally have breakthrough of rls, but lasts less than an hour and back to sleep. I would not want to take paracetamol as well. More recently have started taking iron, but still need the codeine to control things so far

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poppppy
poppppy
in reply to Anne_liz

Thank you for this answer . Very useful to know . Thank you for taking the time for us

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