Thanks so much! I wear oxygen at night and used to be on a c-pap but quit pain meds and the apnea went away. Maybe I need a new sleep study done. I take Rapenerol for it but it’s not working anymore! I have it during the day also so I can rarely lay down!
2 days ago
Restless leg syndrome (RLS) is something quite a few myPHteam members have dealt with alongside PH — so you're definitely not alone in this struggle! It can make getting restful sleep feel nearly impossible, which is especially tough when fatigue is already a big part of living with PH.
One myPHteam member shared a really Show Full Answer
Restless leg syndrome (RLS) is something quite a few myPHteam members have dealt with alongside PH — so you're definitely not alone in this struggle! It can make getting restful sleep feel nearly impossible, which is especially tough when fatigue is already a big part of living with PH.
One myPHteam member shared a really relatable experience — they were having terrible dreams about running and waking up gasping, with headaches, only to discover it was related to low oxygen levels during sleep rather than what they initially suspected. Once they started nighttime oxygen, things improved significantly. There are a few things worth exploring with your care team if RLS is really affecting you:
- Sleep study — It can help identify if low oxygen levels at night are contributing to your symptoms
- Blood tests — Iron deficiency and anemia are known to worsen RLS and can also affect PH progression, so getting these checked is important
- Medication review — Some PH medications may make RLS more likely, so it's worth discussing with your doctor
- FDA-approved RLS medications — Dopamine agonists like rotigotine (Neupro) or pramipexole (Mirapex) are approved treatments worth asking about
Bringing this up with your healthcare team is really the best next step, especially since untreated RLS can make sleep — and overall health — worse over time.
2 days ago
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