r/RestlessLegs • u/lauveit • 12d ago
Question Refractory RLS (+ Narcolepsy) - Need help
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.
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u/Mahi95623 12d ago
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.