RLS - lying down during the day

[danamias]

I know that lying down during the day (for a nap) is a problem for many of us with RLS. I currently take gabapentin in the evening so that I can lie down and sleep at night. Does anyone take gabapentin across the day which then allows them to lie down and nap during the day? Thanks.

[Hidden]

Are you taking anything else as well as gabapentin?

I used to be unable to take a nap during the day, but that was when I was suffering augmentation. Once I stopped taking a dopamine agonist, all daytime symptoms stopped.

I only take gabapentin at night and can nap anytime in the day.

Otherwise, it is possible to take gabapentin during the day. This is usually for epilepsy or nerve pain.

You may have to increase the dose, as if you just split your current dose, it will be less effective at night.

Additionally, if you take gabapentin during the day, it may make you more drowsy during the day.

[danamias in reply to Hidden]

That's very interesting and helpful. The story is that I was on 3mg of ropinirole and then I started to augment. A neurologist suggested I switch to gabapentin since it doesn't cause augmentation. The idea was that I start on 100mg and build up to 600mg - stepping up every 5 days. But when I tried to reduce the ropinirole the symptoms got worst. And increasingly the gabapentin beyond 200mg made me feel sick. So, through trial and error I seem to have found a compromise (200mg gabapentin and 3mg ropinirole) which in the main works at night, although once it has worn off about 6am the symptoms return - because I'm lying down. Ideally, I want to get off ropinirole. And ideally I'd like to take gabapentin during the day so I can sit for longer periods or at least have a cat nap. But you're right about drowsiness - after about an hour after taking gabapentin in the evening I start yawning and feeling tired. But I'd be happy to at least give it a go during the day to see if I can at least lie down - it would a game changer for me. Any thoughts? Thanks 🙂

[Hidden in reply to danamias]

If you're still taking ropinirole, then you will be still suffering augmentation, hence symptoms during the day. If you wean off the ropinirole then daytime symptoms should fade.

When you reduce the ropinirole, you will get withdrawal effects. This will be a worsening of symptoms. Withdrawal symptoms are usually temporary.

In order to minimise withdrawal effects it's best to reduce the ropinirole slowly in small steps. Typically it's better not to reduce the dose by any more than 0.25mg (or less) at any one time. Do this by getting the smallest dose tablets and cutting them. Also leave at least 2 weeks between reductions and even up to 4.

It's been recommended that weaning off a dopamine agonist should be done over at least 3 months. That is a minimum.

As the dose gets lower, it also gets more difficult to reduce further. You may need to take it slower.

You could try asking a doctor for an opioid, e.g. tramadol or codeine to help with withdrawal.

It is difficult to withdraw from a dopamine agonist. However, doing it will make a significant improvement to your quality of life.

As regards gabapentin. It isn't really effective whilst still suffering augmentation. It only really kicks in after augmentation starts to fade.

It also takes up to 4 weeks to start working and during that time, the side effects of drowsiness, dizziness (causing nausea) and problems with walking may appear.

After those weeks. hopefully these will get better.

Gabapentim doses : 200mg a day is of little value. Even 600mg a day may be not effective.

I'm afraid you'll just have to experiment, e.g. take 200mg 3 X daily or 300mg twice daily.

Eventually if you can't tolerate gabapentin in a sufficient dose then you'll have to consider taking a low dose opioid.

In addition. Have your iron levels checked, especially ferritin. If your ferritin is under 75, you could start taking an oral iron supplement.

Also, if you're taking any other medicines for any other health condition, then you should check if they're one of the many medicines known to make RLS worse.

You may find this link helpful.

cks.nice.org.uk/topics/rest...

[danamias in reply to Hidden]

This is incredibly helpful and informative. Thank you so much 🙂🙂

[Joolsg in reply to danamias]

Manerva has given you excellent advice. Until you get off Ropinirole, nothing will help.

Many of us have been through it - very tough but possible.

[danamias in reply to Joolsg]

Thank you, and yes - great advice. I have a challenge ahead no question but I now feel a lot more positive.

[SueJohnson]

I take gabapentin at night before bed and again in the morning. I am also withdrawing from ropinirole which can obviously affect things. I have bad pain in my legs, which the gabapentin helps but does not eliminate. I try to nap for an hour after lunch, but usually can only nap for about a half hour before the pain starts up, and have to get up, but no restless legs during the nap.

[danamias in reply to SueJohnson]

Thanks Sue. Can you tell me how you are coping with withdrawing from ropinirole? What was the maximum dose you were on ie what are dropping down from? I've heard that it can months to completely withdraw from. Is that your experience? Thanks 🙂

[SueJohnson in reply to danamias]

The advice on this forum is to drop .25 mg every two weeks, so that is what I am doing. I started our at 4 mg, so I will not be off it until July 30th, unfortunately. I haven't really had any bad experiences withdrawing. Basically, I just have the same amount of restless legs I would have if I weren't withdrawing.

[danamias in reply to SueJohnson]

Wow, that is a slow withdrawal. I think that was probably my mistake- going too fast. Appreciate your words Sue. Thank you. Good to hear that you are not being adversely affected. I wish you good luck as you come off ropinirole 👍

[Joolsg in reply to danamias]

Minimum of 3 months is recommended by experts and you may need an opioid and cannabis to get you through the last stages of withdrawal. Once through the last 10-14 days , symptoms start to improve and the Gabapentin should then help.