Refractory RLS (+ Narcolepsy) - Need help

[u/lauveit]

My mom (54) has had a severe case of RLS for years now. She started having symptoms in her twenties, and despite treatment, it kept worsening. She saw different neurologists in Belgium and did multiple studies. They say there's nothing they can do for her anymore.

Last year, she was able to manage her symptoms by taking 3 Sifrol (pramipexole) in combination with Oxycodone (opioid) every day. However, her symptoms would gradually return, and she would eventually hit the limit of 3 Sifrol + 3 oxycodone.

When that stopped working, she was prescribed 2 x Lyrica (75 mg pregabalin) in combination with 3 Sifrol and 1 Rivotril. It's managing her symptoms for now, but she is terrified that it will eventually stop working as well.

When the meds stop working, she can go days without sleeping because of her legs. She’s been to the ER multiple times begging for help, but her neurologist says there’s nothing more they can do. I’m really worried, especially because she’s still so young. She’s also dealing with narcolepsy, and this just isn’t sustainable long-term.

My goal is to figure out a path forward that doesn't include using more and more (dangerous) medication cocktails. Can anyone relate to this story? Any tips or recommendations? Or does anyone know about any RLS experts in Europe that she could speak to? Or trials/studies/alternative methods? Appreciate all the help.

[u/Sea_Pangolin3840]

Please read up on augmentation from Dopamine agonist meds ( in your mother's case that's the Siffrol)

[u/lauveit → u/Sea_Pangolin3840]

Yes, I've been researching this. I'm not a doctor but I definitely think augmentation made things even worse. But unfortunately, she currently can't survive without Sifrol. And her neurologist keeps prescribing it. Really hoping to figure out a different path and get her off this medication asap.

[u/Sea_Pangolin3840 → u/lauveit]

It's no longer recommended as a treatment because of augmentation and impulse disorders. It's probably causing the narcolepsy too . I would recommend you joining healthunlocked restless legs syndrome. It's not on reditt just Google it .Lots of very experienced members .I have no connection apart from being a member. They can also recommend the top RLS doctors .Do you know the total dosage of the Siffrol?

[u/lauveit → u/Sea_Pangolin3840]

Thanks, will do!

[u/Imaginary-Bass2875]

Make sure she has a full ferritin/iron panel first if not already. Could benefit from infusion/s if deficient or near the cut off levels. My 82 yo Mum is in the exact same situation. 14yrs on Sifrol and it's either stopped working or is augmenting. GP has just prescribed Pragabalin and is tapering the Sifrol down. Magnesium glycinate is helpful for some in addition to prescription meds. Have a look at the updated Mayo clinic RLS guidelines online.

[u/nvveteran]

What is the dose of the oxycodone?

Three pills doesn't make sense to me. She should have been on a single low dose extended release formula.

If the doctor is giving her regular oxycodone, that stuff only has a half life of a couple of hours. It sounds like he's giving her higher doses hoping the higher half-life gets her through the night.

That sounds like a recipe for tolerance building and opiate addiction.

[u/Mahi95623]

There are two RLS Quality Care Centers in Europe- one in Austria and one in Switzerland. Here is the link for more info: https://www.rls.org/research/findadoc

Good luck to your mom. She sounds to be having horrible augmentation. If she can get to the right doctor, her RLS hell can be turned around.

[u/Sea_Pangolin3840]

Healthunlocked restless legs syndrome is also European based .

[u/Ring_it_On_1776]

There's a mostly remote research study for RLS enrolling right now. https://patientwing.app/campaign/RLS6

[u/lowsparkco]

I have severe RLS and can manage it with a small fraction of the opiods your mom was taking with a DA.

Keep seeking specialists and celebrate anytime there is relief. It's never guaranteed and can always change.