medication timing???

[Cookiebum24]

I am now almost 4 weeks free of Pramipexole 😀 I feel like I am over the worst ( back from hell) but I’m now religiously waking at 11pm then again at 12pm (and sometimes at 1am) with RLS. I have a 10 minute walk around the house and this does ease my pain.

I am slowly increasing my Gabapentin dose and currently I take 400mg at 6pm and 600mg at 10pm. I also take 5mg Longtec at 7pm.

My question is, are my timings right because I wake at the same time with RLS?

Do you think I need to increase the Longtec?

The past week, I have also started waking in the morning with RLS, mainly in my ankles. I use to have this every morning when augmenting on the Pramipexole……confused as to why it’s started again!

Any advice would be much appreciated. Thank you ☺️

[SueJohnson]

Your timing on the gabapentin is off. Take your 600 mg 1 to 2 hours before bedtime and 400 mg 2 hours before that. 1000 mg s still a low dose. The usual effective dose is 1200 mg to 1800 mg. Increase by 100 mg every 2 days until you find the dose that controls your symptoms. If you need more than 1200 mg take the extra 2 hours before the second dose.

[Cookiebum24 in reply to SueJohnson]

Thank you I’ll give it a go 🤞

[SueJohnson]

Your Longtec is probably wearing off which is why your are having RLS in the morning.

[707twitcher]

Sue always offers the same advice about Gabapentin: take 600mg 2 hours before bedtime (effectiveness kicks in after 2 hours), then the next up to 600mg 2 hours before that, and up to the next 600mg another 2 hours earlier. You can increase by 100mg every other day.

I would say you need to increase dose and take it later. I think effectiveness peaks at 5 hours or so, so your waking may be attributable to taking it too early.

I don’t know about longtec, but if it’s like other opioids, you may be taking it too early also. Some are only effective for 4-6 hours. That’s why buprenorphine and methadone are recommended for RLS - they have much longer half lives. Maybe take it immediately before bed and see what happens?

[Cookiebum24 in reply to 707twitcher]

Thank you, ive battled for weeks to try and get buprenorphine from GP but she won’t budge!! She’s concerned about dependence……not that dependence was mentioned when they happily signed me up to a dopamine 🤦‍♀️

The Longtec is a slow release over 12 hours hence why I take it at 7pm but I will try taking it earlier and see what happens. Longtec was my last option from GP.

Currently waiting for Neuro apt but it’ll be a long wait!

[calschwartz27]

I must take 600 mg gabapentin at five to avoid the start , then 600mg at 8pm. This as well as every other day iron and vitamin c, and a daily multivitamin has been the best combination for me. thx to sue johnson i have learned so much. ive had rls since aged 19 - which became severe around age 40. suffered for years until gabapentin age 50. i am fortunate that a low dose of gabapentin works right now, you may need a third dose at 10 pm of 600mg. lastly my worst trigger was alcohol so i quit cold turkey ten years ago. sugar also in the form especially of ice cream activates my rls. a hot bath when all else fails works like a charm most times. good luck.

[Cookiebum24 in reply to calschwartz27]

Thanks for your insight.

I did as Sue suggested last night and slept all night bar waking once for toilet but I did have a couple of gin and tonics.

I use to love wine but found as I was weaning of dopamine that it made my RLS worse however, gin is fine 🤷‍♀️

I do try to avoid sugar after 6pm anyway. I also take iron and magnesium supplements.

I couldn’t give up alcohol and sugar, my willpower isn’t that strong and life needs some pleasures!

[SueJohnson in reply to Cookiebum24]

That's great!