Big thank you: I can't remember who to... - Restless Legs Syn...

Restless Legs Syndrome

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Big thank you

Whippetmama profile image
16 Replies

I can't remember who to thank (Madlegs, maybe?) I've taken gabapentin for close to 30 years for unrelated nerve pain. About 5 years ago I was hospitalized and in the course of things, told that I had a magnesium deficiency and to supplement. So I have been taking magnesium. No one ever even mentioned that I should separate the two. Then someone wrote, almost in passing, that magnesium blocked the absorption of gabapentin. So I split them. Holy cow, what a difference in efficacy. Thank you!

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16 Replies
Madlegs1 profile image
Madlegs1

You're welcome.

Glad to know some people heed the wonderful advice given on these pages.

I hope you keep well. 😎

Jelbea profile image
Jelbea in reply to Madlegs1

Hi Madlegs I wanted to pick your brains on magnesium intake!! I am now taking only oxycodone for my RLS - 5 mg in morning and 10 mg bedtime.I also take low dose aspirin at dinner time and vitamins B12 and D at lunchtime When would I be best take mag. Bisglycinate and what dose? Thanks so much🙂🙂

Madlegs1 profile image
Madlegs1 in reply to Jelbea

I find that mg seems to have little effect on oxycodones, so it probably doesn't really matter in your case. I take mine around 5 or 6 pm, just in case! I'm on mg oxide which helps with stool softening (opiates can cause problems)

But I've taken oxide, citrate and bisglycinate. You could take about 100 mg, and go higher as you find effective.

I'm currently on mg oxide 250mg, which helps sleeping.

Good luck.

Heatherlss profile image
Heatherlss in reply to Madlegs1

Hi,

Do you mind telling me how long has it been since you started on Oxy? Did you ever have had to increase the dose ?

Madlegs1 profile image
Madlegs1 in reply to Heatherlss

On Oxycontin for about 2 years now. Bit of adjusting to get satisfactory regime, but rls sorted now. Unless I take triggers.

Oxycontin does not last the 12 hrs for some people. If one is on a dose rate that can be split evenly through the day, then that is grand. Otherwise one needs to play around with Oxynorm at the lowest dose (5mg)

Quiltingmum profile image
Quiltingmum in reply to Madlegs1

Hi Madlegs, are you in the U.K. like me? I have asked my GP for Oxycodone and he said no. How did you get that prescribed? I went to the sleep clinic at Papworth recently and they will not give it either. They suggested Codeine with an anti-emetic as it gives me severe nausea! Gabapentin is making me pile on the weight so I would love to come off it. Thanks for any help you can give.

Madlegs1 profile image
Madlegs1 in reply to Quiltingmum

Well-- first you need to break your spine in 3 places, crush most of your ribs-- collapsed lungs also add to the picture, oh, and break shoulder in 2 places! Then be in intensive care/ induced coma for 2 months and then rehab for 4 months.

You need to ramp up the pain, and they won't deny you opiates!😝

I'm in Ireland, but UK would be similar.

There is a paper on management of rls by Dr Mark Buchfuhrer, that might be helpful for your med team .

Joolsg profile image
Joolsg in reply to Quiltingmum

My GP in the UK initially refused OxyContin but I was lucky that my MS neurologist wrote stating that I should be given it. I also saw Prof Choudhuri’s RLS team at King’s College Hosp London and they confirmed I could have OxyContin.

Print off everything you can about low dose opioids and show to your GP. They still don’t understand how effective they are and that they do NOT lead to addiction unless there is a history of drug abuse ( or childhood trauma).

mayoclinicproceedings.org/a...

rls.org/file/Guidelines-for...

nice.org.uk/advice/esnm67/c...

Targinact ( a combination of OxyContin and Naloxone to counteract constipation) is SPECIFICALLY LICENSED in the UK for RLS so your GP cannot claim opioids are not allowed for RLS.

Ask to see another GP and hand over the printed evidence that low dose opioids are effective.

Too many GPs still think opioids are only for severe pain and lose effectiveness quickly/ and lead to addiction. They’re wrong and need re educating and sadly, we are the people who have to try to do that. Some of the more enlightened GPs accept that they don’t know enough and will listen to us but others really object to patients knowing too much. I think they feel threatened. Hopefully your GP will listen and read the evidence.

Fingers crossed.

Alyson66 profile image
Alyson66 in reply to Madlegs1

Hi love,I'm on 130mg if opioids a day,no you didn't misread that,on a reduction plan at mo, anyway I digress,as you can well imagine am really struggling with constipation...tried all sorts but not heard about the meds you mentioned, would you mind giving me a bit more info about them please? 😲 Xxx

Madlegs1 profile image
Madlegs1 in reply to Alyson66

When I was on high opiates in hospital, they gave me ' Movicol' which was extremely powerful. A quarter dose did the job for me.

Magnesium oxide up to 1000mg a day would also do , but at that rate I would split the dose through the day.

I take 250 mg of magnesium oxide in the evening, which works for 25 mg of Oxycontin pd.

I also eat plenty of fruit and snack on dates, prunes and figs.

Hope all goes well with you.

Alyson66 profile image
Alyson66 in reply to Madlegs1

I've got the movicol but might give the magnesium stuff a waz, thanks for your help Hun xx👍

Felicity21 profile image
Felicity21 in reply to Madlegs1

Hi Madlegs. For stoolsoftening I use Senokot (maximum strength) at night with my two co-dydramol (500/10) which gives me a great night's sleep and no restless legs. Still struggling coming off Neupropatch and onto Gababentin. Now on 1 mg Neupropatch and 2x300 mg Gababentin.

YodaDog profile image
YodaDog in reply to Madlegs1

Hi Madlegs - does Mg just affect Gabapentin uptake, what about the DAs for example? Thanks

Madlegs1 profile image
Madlegs1 in reply to YodaDog

Magnesium affects over 200 substances.

The safest strategy is to Google " medication and magnesium" and that formula should point up any issues.

Good luck.

Otherwise, to play safe, keep magnesium 2 or 3 hrs from other medicines.

Cheers.

YodaDog profile image
YodaDog in reply to Madlegs1

Thanks

Sara_2611 profile image
Sara_2611

Glad youre a lot happier now

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