RLS at 15 years

[TimG]

I was diagnosed with RLS 15 years ago and prescribed pramipexole 0.125 mg daily. I'm still on that same drug/same dose although I take it intermittently rather than every night. What helped the most was taking a daily iron tablet, which has raised my ferritin levels from 19 to over 100.
Recently, I had a Sleep Study due to excessive daytime sleepiness. The sleep study showed sleep apnea, so I was prescribed a CPAP machine. So far, my sleep has been more restful and restorative with lessened sleepiness during the day.

The sleep specialist I saw thought that the CPAP therapy might also help with RLS, but I disbelieve him. Any thoughts about this?
















4

[Rustsmith]

That is a frequent statement about CPAP by sleep specialists that are not familiar with RLS. Doctors are like any other specialty in that they tend to think that their specialty can fix all sorts of things. CPAP will definitely improve the quality of your sleep if you stick with it. As for it fixing a neurological condition that is driven by low iron in the brain, that is stretching thing quite a bit.

And congratulations for being able to control your RLS with 0.125mg pramipexole and oral iron for 15 years. I hope that you have many more years of that level of success.

[Polar Bear]

I've had rls 24/7 for 35+ years and it is at last pretty well controlled with medication. Two years ago I was diagnosed with sleep apnea and began using a cpap machine. What a difference for the better. I use it always, even for a nap.
Having insomnia I still wake up. I also occasionally wake up with rls breaking through and have to get up.
However, I do sleep better, it is less fractured and much better quality.
I don't believe the cpap has had any beneficial effect on my rls but it has without doubt benefited my overall sleep.
If I'm very glad to hear that it has helped you. Well done on your rls control.

[Stainless]

I know I should get diagnosed with sleep apnea but I can't imagine sleeping with a CPAP. My wife has taken video of me struggling to breath but this only happens when I finally reach deep sleep, calmly laying on me back about 4 am. The rest of the night I'm spinning like a top an imagine I would be wrapped up in the hoses. I would consider Inspire alternative but heard it costs $50K and can't imagine it is a lifetime solution.

I should also state I just went through Chemotherapy and a lifetime dose of Radiation for oropharyngeal cancer and am dealing with side effects from that. Amazingly may RLS symptoms have been significantly reduced during this ordeal probably because my brain is busy dealing with everything else.

[Polar Bear]

I would suggest you first of all have a sleep test and diagnosis. If as suspected you do have sleep apnea you could at least give the cpap a try. There is one hose. I use a cpap and the hose doesn't get in the way. However I don't.move a lot.
You may find that the benefit of the cpap reduces your tossing and turning. Could be worth a try.

I have found that when I have been ill my rls symptoms are also greatly reduced, and have heard others make the same comment.

[badnights]

CPAPs as well as the masks have improved greatly in the last 10 or 15 years. I just started using one again, and the machine treats me gently, so I barely notice it, and the mask - well I tried 2 different kinds during the 5-day trial and selected the nasal pillows with a hose in the front, it barely gets in the way. I unfortunately will have to switch because my right nostril wall is becoming abraded by the pillow (I don't know why!), but the nose-only mask was also comfortable (as I recall).

So - I get you, stainless, about what a pain it would be in and out of bed with WED/RLS symptoms. This is true. I have it down to an art, and it helps that my machine detects if the mask is on and powers on or off accordingly. So it's doable. But it depends how many times you're up and down.

I have not found it helps my WED/RLS at all, although, as Steve said, a lot of health practitioners seem to think it will. But it helps me sleep, and I'm happy to be using it because of how much it helps. I get into more deep sleep, I go for hours without getting up, I wake up more refreshed. Clearly, a lot of what I thought was WED/RLS wake-ups was actually sleep apnea wake-ups. I'm grateful this technology exists and that it has improved so much over when I first tried it in 2008 or 9. (At that time, I was diagnosed with UARS; I guess it has progressed into actual sleep apnea).