UARS or PLMD

[lexit957]

Lo     PHello-
I’ve posted before. In June I got an updated sleep study and it was concluded since my AHI is less than 5- I do not have sleep apnea. The study showed lots of PLM so they concluded upon quickly reviewing the study that I have PLMD and gave me ropinerole. I have been weary of trying it due to augmentation and instead worked on getting Ferritin up. The few times I tried it and made me feel weird when waking up.

Well my sleep is still crappy - ropinerole or no ropinerole so I’m wondering if anyone can help read this sleep study and tell me if it’s actually the movements that are the issue? From what I see the plm only occurred in the beginning but the arousals are constant. That night of sleep is pretty close to how I feel most nights.

I’m going to schedule another follow up with the sleep MD and possibly a neurologist. 

Any and all input is appreciated. I can also upload additional photos of the study if needed.

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TIA!
       

[gainerfull]

Looks like your sleep that night was pretty fragmented overall however your PLMD only accounted for 0.6 arousals per hour which is pretty low. Have you tried out cpap already?

[DaveSkvn]

Hi lexit957,

I've been on CPAP for many years but have "residual daytime sleepiness" - i.e. still drowsy at times throughout the day. Periodically I have another go at seeing if I can improve the situation. A couple of years ago I got a infrared webcam and recorded myself sleeping. I ran the footage through motion detection software (dvr-scan). I found that my lower leg was occasionally giving little kicks when asleep. The kicks came in pairs about 60-90 seconds apart. They would start, go on for 30 to 60 minutes and then disappear. Many nights I didn't have any. Some nights I had a couple of episodes. Doing a Google I found many websites describing PLMS / PLMD and saying that it needed to be treated and I got all excited that this could be what was causing my "residual daytime sleepiness". I called the sleep clinic and was given an appointment with the sleep specialist.

At the appointment, the sleep consultant (equivalent of an "attending physician" in the US) looked at the video and said "yeah, you've probably got PLMS but it doesn't normally interrupt your sleep." I was (and still am) eager to do random stuff just to see if it makes a difference. I asked to have a go at the treatment anyway. The consultant said that it was basically Parkinson's disease medication and given the side-effects there was no way he would prescribe it for me. He did end up giving me a trial of "Sunosi" which is way more expensive, could only be dispensed from a hospital pharmacy and sadly was not much use to me. I say this to indicate that his refusal to prescribe "Parkinson's disease medication" was not to do with the cost or the unwillingness to do anything. He believed it was pointless.

Now I am in the UK. 95% of the UK's Healthcare is provided by the NHS and paid for by the government. There are pros and cons to this but one aspect is a very strong drive for treatment to be "evidence based". There is a central group (dubbed "NICE") that determines which treatments are "cost effective", the physicians have to follow the guidance and their income is unaffected by what they prescribe. They are to ignore drug company marketing. If you google "NHS NICE Restless Leg Syndrome" you'll see Ropinirole there as a treatment option (Note RLS & PLMS are different - I do not have RLS).

When I got back from the appointment, I noted that all the websites saying PLMS/PLMD needed treating were in the US. None were in the UK. Take from this what you will. Your mileage may vary.

I'm currently (since last week) looking into UARS myself. There are a couple of YouTube videos worth watching by a guy called Vik Veer, an ENT Surgeon at the NHS's national ENT hospital in London. One from Mar 2021 ("Most doctors don't know about this - Upper airway resistance syndrome (UARS)") outlines the condition. One from 2023 ("Why Doctors Don't Understand UARS (Upper Airway Resistance Syndrome)") basically complains that there is no effective diagnostic. (A) Does your sleep study include a count of RERAs? (B) Our breathing rate is normally about 12 breaths per minute. My CPAP is recording me doing 30-50 a minute at times during the night. Does your sleep study give you any figures for "respiratory rate"? Any sign that it may be well above 20?

Hope you find some means of getting relief.