Firstly I’m sorry to be so long winded but I felt my questions need some context. I have had RLS since I was an adolescent, I’m 70 years old. It only became troublesome at around 60 when it started disturbing my sleep. Up until then it was something I would get sitting in theatre seats for too long or from being overtired. Getting up and moving around relieved it immediately and massaging my legs at bedtime was enough to give me a good nights sleep. I was never woken up by symptoms.
Changed days, in 2014 at the age of 60, I started waking at night. I self medicated with a maximum of 2 x 8/500 Co-Codamol tablets a night.
In Oct 2022, concerned I decided to speak to my GP as I was sometimes needing to take 3 or 4 Co-Codamol at night. I asked if I might have Codeine prescribed on its own as experimenting had shown me that the Paracetamol on it’s own had no effect on my RLS. She was willing to do this but had to have approval from a neurologist as it was off label use. I didn’t see the neurologist face to face but he wrote back that, “She should avoid treatment with Codeine due to the associated side effects.” He suggested, “Pregabalin as a first line treatment. Starting with 25mg at night, gradually increasing the dose every 2 weeks by 25mg up to 75mg at night. If symptoms did not improve he suggested it would be sensible to be seen at the neurology Clinic.”
I was very nervous of taking Pregabalin and the GP, I feel agreed with me that Codeine was probably the lesser of two evils and she prescribed 2 x 25mg Codeine a night. This has worked well for me. Not perfect but a couple of wanderings around the house at night, a cup of tea and the odd piece of toast and butter got me a decent enough rest, especially as I’m now retired and rarely have need for morning alarm clocks.
In June this year I had a stupid accident in my garden pruning a tree with a telescopic tree lopper and ricocheted backwards landing on my hip. This resulted in sciatica and a hip bursitis which developed over time and although not so bad while moving through the day, causes a lot of discomfort at night and the need to take more pain killers. I was taking 75mg of my prescribed codeine and usually 2 x 8/500 Co-Codamol to get me through the night. This November I discussed with my NHS physio if she thought Pregabalin might help the nerve pain and she thought it might, so I went back to my GP and have now been prescribed 25mg Pregabalin for two weeks and if necessary increase to 50mg and make a further appointment at that point.
I should add that my GP sent me for blood tests first to check many things, including my iron levels which she understood needed to be a lot higher with RLS. My Serum ferritin was 138. She also showed me the RLS UK web site that of course I was familiar with but was reassuring that she was too.
Finally my problem! I have taken 25mg Pregabalin for three nights. The first night I felt nauseous which stayed with me until mid afternoon the following day and I had very broken sleep. The second night the nausea was less and I slept better and the nausea in the morning wore off quickly. The third night was far worse than the first, waking every hour feeling nauseas and worse as the night wore on. I think that it’s maybe helping the RLS but not touching the hip bursitis that is quite bearable through the day but gets very painful at night and I can’t take anything to help that while taking the Pregabalin.
I am wondering how long others have had to suffer side effects from Pregabalin and if I’m possibly going through some withdrawal from stopping the Codeine?
Any advice, help and others experience would be so gratefully received as I don’t want to give up too soon. Many thanks.
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It could either be from the codeine withdrawal or pregabalin. You should have weaned off codeine rather than just stopped it, The side effects from pregabalin can take several weeks to lessen or go away or they might not go away.
25 mg is below the starting dose of 75 mg for RLS and when used for pain it also below the starting dose so it is no wonder it is not toughing your bursitis and in any case takes 3 weeks to be fully effective. For RLS the average effective dose is 200 to 300 mg according to the Mayo Clinic Updated Algorithm on RLS. It will tell you everything you want to know including about its treatment and refer your doctor to it if needed.
I would stop the pregabalin and see if the nausea goes away. If so I would ask for gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
Beginning dose is usually 300 mg gabapentin .Since you are over 65 if you are susceptible to falls beginning dose is 100 mg It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. The average effective dose is 1200 to 1800 mg.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason.
If your doctor balks show her the Mayo Algorithm.
If you still have nausea on the gabapentin ask the neurologist to prescribe a stronger opioid like buprenorphine. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thanks for your thorough and speedy reply. Many of your more general points I have been following from previous replies to others on this forum that I have followed for some time but not often contributed. I thank you for sharing all your valuable knowledge and expertise.
I would be interested in your opinion of which is better to take long term, 45 to 60mg of Codeine Phosphate or 200 to 300mg of Pregabalin? In my first post I mistakenly said I was prescribed 25mg of Codeine Phosphate x 2. In fact they are 15mg tablets x 2.
I was aware that the Pregabalin dose was much lower than the Mayo Clinic algorithm recommendations as also with the amount of Codeine I have been taking and I will definitely get back to my GP with this information.
Sad to hear about Calcium before bedtime so I will knock my 150ml cup of Coco with no sugar on the head in the hope that helps too. My diet is pretty good and I try very hard to eat a healthy diet. No added sugar and avoid all UPF’s as much as possible. Lots of veg and whole grains pulses etc. Olive oil, plain kefir and yogurt. I have one cup of real coffee in the morning and I don’t drink or smoke. Sugar definitely has a bad effect on my RLS so have as little as possible and none beyond mid afternoon. I try and get plenty of exercise and usually keep well until my fall.
Thanks again for all the advice I very much appreciate it.
On pregabalin you can take the calcium - it is the gabapentin you need to keep 3 hours apart.
The pregabalin doesn't agree with you since you have nausea so I would think that is out. As far as which is better gabapentin if you have no nausea or codeine, they can both be effective so it really depends on the side effects, which you want and your doctors. Both help with pain and RLS. The usual effective dose of codeine is 60 to 180 mg and you were doing well on codeine before so my thought would be that that would be what you would want.
Thank you Sue, I feel you have confirmed what I felt about the Codeine especially after reading that I'm taking one third of the max dose and before my hip injury (that hopefully won't be with me forever) I was managing very well on a max of 45mg with no desire to take any more. I'm going to go back to my GP with the relevant info to discuss. Very happy to be able to keep on having my Coco! Thanks so much once again.
As Sue says it is probably down to which side effects you can cope with most easily. Some people are completely fine on pregabalin, for example the only side effect I had was a little cognitive fog but even that was enough to make me want to stop. I now don’t take anything and manage with several wakes through the night. Also my experience and understanding of pregabalin was that it’s not a great painkiller for what you might call “real” pain as opposed to neuropathic pain where the nerve is damaged and on that front the codeine is probably more effective for your hip. Many people do very well on low dose opioids as documented in this study:
There are some potential long term side effects of opioids such as memory loss and respiratory depression but if you are are aware of these and monitoring they may not be an issue. Pregabalin potentially has the same side effects. As Sue says gabapentin can be an alternative and may not have the same side effects as pregabalin.
As a side note it’s really impressive that your GP is so well informed and has actually read the RLS-UK website and acted on the information and passed it on. All the best.
Thank you that's really interesting info. I've skimmed over the link and will read more thoroughly. I think you are absolutely right about Pregabalin not hitting "real" pain. Last night having checked that it was safe to take, I had a 200 Ibuprofen a few hours after having gone to bed and it worked a treat to stop my hip pain. I woke up 5hrs later and slept again for a couple of hours. No nausea either. I'm now wondering if the pain was causing the nausea, I know it's possible. The best sleep I've had since before my fall in the garden.
I know what you mean about the brain fog and I will see how that goes. I can put up with it short term but I didn't have that with Codeine. I would love not to have to take anything (as I'm sure everyone on this forum would wish) and maybe when my hip has healed I'll give it a go. It's the struggle with RSL & hip pain at the moment that is tricky.
I'm aware that I'm very lucky with my GP. She is young and a great listener. Consultations with her feel very collaborative which is wonderful. The nurses in my local practice had very high praise for her and said she's very popular.
Thank you for replying. It's so interesting and useful to hear other people's experience of these things. Good to hear it works well for you. Best wishes.
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