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Restless Legs Syndrome

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RLS back again

rchobby profile image
18 Replies

Back again for any suggestions about what to try next!

My husband's RLS is back, only in the evenings, but keeping him awake until about 2:30. He is now on so much medication plus a strict oxalate free diet, no alcohol, very little sugar but insists on sweetener in his tea and coffee.

He is on 20 mg buprenorphine patch (please let me know if you think this is too much) plus

600 mg gabapentin at 6 pm and

600mg gabapentin at 8:00 pm.

He also takes one Trazadone at about 9 pm to try and help him get to sleep.

he is now adding magnesium 100 mg at 7:00 pm (dinner time) but only had one night's relief and then back to the 10:30 pm breakthrough.

what do you think we are doing wrong?

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rchobby
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18 Replies
SueJohnson profile image
SueJohnson

I suspect the problem is the magnesium. He should take it at least 3 hours before the gabapentin as it interferes with its absorption.

rchobby profile image
rchobby in reply to SueJohnson

thanks Sue, so should he take the magnesium at 3 pm? I was under the impression that magnesium should be taken close to bedtime.

SueJohnson profile image
SueJohnson in reply to rchobby

Yes if is better taken close to bedtime, but because it interferes with the absorption of gabapentin he should take it at 3 pm

Fingerandus profile image
Fingerandus in reply to SueJohnson

hi Sue can you tell me does it ever stop .im here and ive taken every thing i have got but no relief they started around 6 pm its now 12 29 am

x

SueJohnson profile image
SueJohnson in reply to Fingerandus

How much codeine is in the co-codamol tablets you take? How many do you take and how often?

Fingerandus profile image
Fingerandus in reply to SueJohnson

hi the pill has 500 paracetamol .30 codeine and i can have 1 at nite i fell asleep at 2 30 am in the chair i went to bed at 3 37 and stayed asleep until 5am ish thankyou for your answer xx

SueJohnson profile image
SueJohnson in reply to Fingerandus

Never mind - I see that your doctor limits you to 20/month. Have you printed out the section on opioids in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... to show her? 20/month is just going to cause withdrawals for the other 10-11 days plus they need to be taken several times a day to also prevent mini withdrawals.

SueJohnson profile image
SueJohnson in reply to Fingerandus

With you still on pramipexole, with your doctor only allowing 20 pills a month and with only 30 mg which is a starting dose, no it is never going to get any better.

I see on another post a doctor was recommended to you. Definitely switch doctors and ask for buprenorphine.

I just now see that that RetiredLady corrected her post and was not recommending that doctor to you but to someone else. However both you and the person RetiredLady was recommending the doctor to both live in Australia so message her.

Joolsg profile image
Joolsg

Is it every night? I only ask this in case the patch is losing effectiveness. Many report that the patch stops working before the replacement patch is due.

rchobby profile image
rchobby in reply to Joolsg

Hi Joolsg, yes every night - about 10 days ago he had 4 perfect nights - slept right through and then back to the RLS at about 10 pm just when he is settling down for the night.

Joolsg profile image
Joolsg in reply to rchobby

I can only assume it's the patch losing effectiveness and then causing opioid withdrawals ( main symptom is RLS). The only way to test that theory is to replace the patch earlier. If it's a 5 day patch, replace at day 3. But obviously, you'd need to discuss with your doctors to ensure they will agree to this because they'll have to prescribe more patches.

Also check bloods as a dip in iron levels may contribute to a worsening

rchobby profile image
rchobby in reply to Joolsg

thank you, I will get him to our GP asap for an iron profile, I should have thought of that myself after all these years of on and off RLS!! Obviously sleep deprivation also affects spouses of RLS sufferers!

Hectorsmum2 profile image
Hectorsmum2

I have found my restless legs are triggered by tiredness. I need a nap in the afternoon for about an hour or my legs start up in the evening big time and I cant then get to sleep at all.

Graham3196 profile image
Graham3196

Try cutting out all tea and coffee. Even decaf is not perfect. After a couple of weeks you get used to drinking water. I prefer it hot - perhaps so I can pretend it's a cuppa.

Eryl profile image
Eryl

By your own admission he still eats sugar. So what do you expect? There may be other sources of sugar you may not realise, like fruit juice, bread and other grain based foods. Also stress could be a cause as the stress hormone cortisol is a glucocortinoid. The 'gluco' part of the name indicates that it only one step away from being sugar.

rchobby profile image
rchobby in reply to Eryl

Thank you Eryl, Graham, Hectorsmum for your help. I have one great bit of news - Temgesic is again available in South Africa !!! after nearly 2 years of battling with the patch he had his first temgesic sublingual last night and slept right through. Nevertheless, I will be trying out all the suggestions above as all or even only one of the hints might be a trigger for him. Gratefully yours!

Eryl profile image
Eryl in reply to rchobby

That is just hiding the symptoms, not tackling the problem.

Dopa1 profile image
Dopa1

My neuro prescribed Clonazepam . Works ok

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