Gabapentin

[VJ29]

Hello I've previously had excellent advice thank you.

I have now completely come off the nupro patch wasn't nice coming off the last quarter but I did it.

I was taking gabapentin at the same time and after withdrawal from DA symptoms settled I was left with breakthrough from the gabapentin at bedtime.

I took co codamol to help with the withdrawal.

Then of course I got a bad tooth infection and have been on antibiotics for the last two weeks and took codine and paracetamol to ease the pain.

The pain has now settled so taking paracetamol when needed but my point of this is to mention the painkillers.

So at the moment my RSL has increased to my shoulder and one leg on either side not both sides at the same time then intermittent RSL a few times in night and early morning.

The doctor increased by gabapentin to 1800 from 1200.

I'm wondering why it's getting worse not better could it be withdrawal from strong painkillers after 3 weeks of taking.

Any advice welcome as it's driving me mad not knowing what to do next. Thank you

[SueJohnson]

It could definitely be the withdrawal. One needs to withdraw slowly. Also the tooth infection increased your inflammation which makes RLS worse although that should settle in a few weeks. If your RLS doesn't get better with the gabapentin after that all settles out you may need more gabapentin or it may be that your dopamine receptors were damaged and as a result the gabapentin won't work. In that case you need to come off it slowly like 200 mg every 2 weeks to avoid withdrawal effects. If you do so slowly there will be none. Then opioids like codeine are your best bet, although I would suggest buprenorphine which lasts 24 hours rather than codeine which only lasts 3 to 4 hours and can result in mini withdrawals unless you take it round the clock.

[Joolsg]

I agree with Sue. It could be withdrawal from the painkillers for the tooth.If RLS doesn't settle over the next few weeks, it may be that gabapentin doesn't work for you. Are you taking it at night only in 600mg doses 2 hours apart?.

You may need to switch to a long lasting low dose opioid.

[VJ29 in reply to Joolsg]

Thank you both so much yes at night 2 hours apart if I actually go to bed at 10.30pm would that then be 4.30 6.30 8.30 or 6.30 8.30 10.30? My doctor has already tried to put me back on a DA 😞 rather than increase the gabapentin to 1800. But then I spoke to a different doctor who increase it. Bit pot luck on who you get really.

[Joolsg in reply to VJ29]

Definitely DO NOT touch another DA. Your augmentation will start again within weeks. Your dopamine receptors are probably already damaged by the years on Ropinirole/Patch. UK GPs know zero about RLS or the damage DAs cause. They also know nothing about iron infusions for RLS or the efficacy of low dose opioids.

If you're near S. Wales, Dr Jose Thomas is the first doctor I've come across who does research RLS, follows the Mayo Clinic Algorithm and understands how dangerous and damaging DAs are. He stoppedd prescribing them 6 years ago and helps RLS patients get off them.

If increasing the dose OR switching to pregabalin don't improve your RLS within the next 3 to 4 weeks, find another doctor familiar with refractory RLS who will prescribe iron infusions, if necessary, and low dose, long lasting opioids like methadone/Buprenorphine.

I would take gabapentin at 6.30, 8.30 and 10.30. That way you might get more sleep and less waking.

[VJ29 in reply to Joolsg]

Thank you Jools plenty to think about there.

[SueJohnson in reply to VJ29]

You could move it up an hour so it is 5:30, 7:30 and 9:30 so the last dose is 1 hour before your go to bed.

[VJ29 in reply to SueJohnson]

Thanks Sue that's helpful as well.