RLS 2 oclock

[Mipilimi]

Dear friends, I am taking pregabaline now for 5 weeks , 25 mg more every few days. Now at 150 mg.

I came of pramipexol this summer, it was horrible!

Now I wake up every night at 2 o’clock with severe RLS until 4 o’clock…

Should in take pregabaline later in the evening? I take it at 22.00 in the evening at the moment.

What helps is tramadol ( I had a few left ) but my doctor doesn’t want to prescribe it.

Any advice on this platform??

Thanks, Lin x

[Joolsg]

After augmentation and withdrawal from Pramipexole /Ropinirole, it can take months for withdrawal symptoms to settle.Pregabalin takes around 3 weeks to be fully effective.

Raising serum ferritin above 100, preferably 200, is important as it can settle the withdrawals and resolve the majority of RLS cases.

So, you can ask for full panel, morning, fasting blood tests, including serum ferritin and if below 100, and your Transferrin saturation is below 48%, you can take iron supplements, once a day with vit c or ask for an iron infusion.

While you wait for brain iron levels to rise, you can add a low dose opioid ( tramadol, codeine, oxycodone) or increase the pregabalin.

The Maximum dose for RLS is 450mg, so there's room to increase.

You could also take 100mg at 10pm and 50mg just before bed to see if it helps. There's no strict rule that you have to take it all at once.

If the above steps don't help, then you may have to find a knowledgeable doctor who WILL prescribe low dose, long half life opioids, like Buprenorphine or methadone, which are more effective than the short half life opioids.

I see you're in the Netherlands. LotteM lives there and her doctor has prescribed an iron infusion and opioids. Send her a message and she can let you know which doctor/hospital can help.

[Mipilimi in reply to Joolsg]

Thanks thanks!!🙏🙏

[SueJohnson]

Joolsg is spot on. What time do you go to bed? Usually pregabalin should be taken 1 hour before bedtime although as Joolsg suggested you can experiment. You can also take some when you wake up. But 150 mg is still a low dose. I suggest increasing it by 25 mg every couple of days until you find the dose that keeps you asleep all night and controls your RLS. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."

[Mipilimi in reply to SueJohnson]

Thank you , I will try some things!🙏🙏

[Blooshi]

Hi Lin.

I have had RLS now for nigh on 15 yrs and the only medication I take is tramadol. My GP prescribed me the slow release (sr) tablet which works a treat at night. The chemist at my local boots once asked me how I was getting on with Tramadol as he also suffers from RLS and finds that it is the only medication that works for him!

I would seriously consider seeing a different GP.

Good luck with this condition from hell!

[wildlegs]

I too had a problem getting Tramadol. My previous doctor gave me 200 mg and for 4 years my legs were good. Then we moved and for 4 months I couldn’t find a doctor who would give me a prescription. Finally I found a doctor would give me 100 mg. It meant standing while I watched tv but by bedtime I was able to sleep. Good luck it’s not easy finding a doctor who will cooperate.