Medication

[Shelag]

I moved from Gabapentin to Pregabalin (100mg twice a day) as I am not sleeping, been on it two months and no change, any advice, please?

I sleep maybe four hours a night, this has been going on for around six years, I'm at the end of my tether, but I'm a coper, and I look well due to make up so GP not very sympathetic...

[macewan13]

I am on 150mg of Pregablin and 100mg of slow release Tramadol, taken at about 7pm. This mostly works. However, if the RLS breaks through during the night, I take another 50mg of Pregablin and 50 mg of ordinary Tramadol. There are some nights where nothing works but this is mostly ok. I can’t cope at all without the Tramadol.

Good luck with your search.

[Joolsg]

What other meds are you taking? If you only get RLS at night, try taking all the pregabalin at night only. You could take 100mg an hour before bed and 100mg around 1/2am.

Or, as others have advised, add in another low dose opioid like tramadol or OxyContin at night time.

[Shelag in reply to Joolsg]

I’m not taking any other meds for my RLS, daytime is well controlled, but nights are fairly desperate, it’s 02:45 and no sleep, and my legs are playing me up

I’ve had RLS most of my life, but on medication for the last eight years or so with various results

Not slept well for last eight years

Also tried Ropinirole but it made me vomit

Gabapentin was 300 to 600mg at night, GP changed me to Pregabalin to see if it would help with sleep

[Joolsg in reply to Shelag]

If daytime RLS is well controlled, definitely take all the pregabalin at night. I take 150mg of pregabalin, 100 an hour before bed and 50mg just as I’m about to sleep.

I also take 10mg OxyContin at 9am and 9 pm and 5 mg OxyContin at 2am.

I will still get RLS most nights but stretches and pilates leg exercises with a theraband for about 5-10 minutes will relieve the sensations and I can get back to sleep.

As I’m retired I know I can go back to bed at around 8am and I get my best sleep from 8-11 in the morning.

I haven’t slept more than 4 hours in one stretch for over 21 years. I think most with severe RLS will be the same.

Try taking all the pregabalin at night and add a small dose of an opioid. Try doing stretches when you are woken with RLS.

I hope you manage to find a combination of meds that allows you at least 2 sleep sessions adding up to 6/7 hours.

Stay hopeful.

[Shelag in reply to Joolsg]

Thanks, my best sleep period is also mid to late morning,I’m a retired nurse, will see my GP to discuss, but they are very reluctant to prescribe opioids or hypnotics in the UK

[Joolsg in reply to Shelag]

Hi Shelag

I’m in the UK and yes, my GP was initially reluctant to prescribe opioids but I printed off all the NICE guidelines on Targinact ( OxyContin and Naloxone to counteract constipation) which is now specifically prescribed for RLS.

It’s hard for a GP to refuse opioids when Targinact is specifically licensed for RLS.

I print off everything about low dose opioids and take it with me to doctors every time I visit.

I am under Kings College Hospital in London and, although I’m not very impressed with them, they do confirm that opioids are effective at low doses.

I’m sure you would get more sleep with a low dose added to your evening meds.

[Shelag in reply to Joolsg]

Thanks, I’ll have a look

[rls_optimist]

Was gabapentin working better for your RLS symptoms than pregabalin? If so, why did you switch? How much gabapentin were you on? It may be simply not taking a sufficient dose of pregabalin. In my experience, 300 mg pregabalin had a roughly equivalent effect on my symptoms as 1800-2100 mg gabapentin. I actually went back to gabapentin due to milder side effects, but we're all different in that respect.

And as Jools said, what other RLS meds are you taking, and at what dose? Has any medication or combination of meds worked well for you so far?

[Windwalker in reply to rls_optimist]

I have written several posts and the jist of them all is the same. There is not one of us with RLS that can say rhey have found the right combination of drugs that does away completely with the symptoms. Coping is the by word with every person I have read or talk to in person. Despair is common. I had two brothers who inherited RLS from our mother. They both refused meds and drank alcohol to mask the symptoms. One died last July at age 84 and the other has liver and pancreas problems and has lost weight from around 200 pounds to a current weight of 160 pounds and still drinking the small amount of alcohol that it takes now that he is not really processing it at all.

If anyone ever said I have this doctor who really knows this disease and prescribes the exact compound i need to make me comfortable day and night, I will collapse from surprise. But I know it will not happen until science finds out the origin of the signal and how to treat or destroy it.

[martino]

I am in a similar position. Due to another problem as well as RLS I don’t sleep well and hoped that by switching from Gabapentin to Pregabalin the sleep might improve. I am only a couple of weeks on from the change but I am undecided. I have had one better night but that was probably because I was so tired.