Newbie here diagnosed with UARS and PLMD

[nyteowl]

Hi folks -

I found my way here via desperate google searching for answers on why I'm struggling so badly with (auto) CPAP therapy.

A few months ago I went for a sleep study, after I discussed my medical concerns with my primary care doc. I've been struggling with severe fatigue for months, and I initially wrote it off as just being attributed to my chronic vitamin D deficiency and perimenopause symptoms.

(I had also experienced another event where I woke up in the middle of the night gasping for air, and it freaked out my boyfriend enough that he almost called 911 emergency for me)

Turns out all my blood work was normal, so my doc sent me for a sleep study.

The sleep study was fairly awful for me, I could not get comfortable with all the wires attached, and even pulled out the nasal sensors (and the tech had to come back in and adjust them). I've always been a restless sleeper, even since childhood. It's become much worse the older I get, so now everything seems to have come to a head. I was diagnosed with UARS (which is on the mild to moderate side) and PLMD which was more serious.

I have a decent sleep doc, and the center that set me up with the ResMed have been very nice, and willing to work with me. I started out with the F&P Eson mask, but that was very difficult to get comfortable with sleeping on my side. I also had a bit of skin irritation / itching around the bridge of my nose (and every time I wanted to scratch my nose I had to take the mask off) so they switched me to the Philips Nuance Pro nasal pillow mask.

It seemed like it might work out when I was working with the CPAP tech, but getting home and trying it out, I'm finding it difficult to fall asleep.

I think the primary problem I'm having is that I'm generally a shallow breather. I also tend to hold my breath at times.. especially if I'm anxious or my brain is processing and does not want to shut down. It's just some subconscious habit I developed when I was growing up, and is only now becoming a problem in my middle-age. I also have the issue with PLMD that my primary care doc didn't want to start treating until we see how I do with the CPAP (and see if the problem improves).

I find myself wanting to yawn all the time with the nasal pillow mask.. and I can't yawn with the mask on (so I have to remove the mask, yawn, then put it back on). I'm using the machine with the auto-ramp setting on, (it starts out at 4 and then ramps up to 5+ after it senses I fall asleep).

What I'm experiencing is a "chicken and egg" sorta thing - I need this therapy to help me sleep better, but I'm getting LESS sleep now because I'm losing an hour or 2 of my sleep time to feeling restless with the CPAP on. (the most I've been able to go in the month I've been using the device is about 2.5 hours)

I really want this to work because right now I cannot get through an entire day without needing a nap. (Thankfully I work from home, and don't have to deal with a long commute in the car) This has been going on for well over a year now, and i just want to feel better. (I'm only moderately overweight, and do get plenty of walking in every day with my dogs, and I eat a decent diet). I think the stress of this is really taking a toll on my body as I came down with shingles a month ago - and so obviously my body is saying something is wrong. (I started the CPAP therapy after I had healed up from shingles so I'm about 3 weeks in right now)

Anyone else out there a shallow breather and/or have the "thing" where you find yourself holding your breath? (with me it's more on the exhale.. I just take longer to take a breath). I was taking valarian root and melatonin to help me fall asleep, but I think my body has become used to it so now I'm back to taking the OTC sleep meds (Diphenhydramine) to fall asleep. Even that didn't help me fall asleep with the CPAP on.

Any advice? or pep talk anyone can offer? I really want this to work, but I'm finding it frustrating. The tech I've worked with at place where I got my CPAP supplies from seems to think I should go with the full face mask,but I think that would be even worse for me wanting to rip it off my face / needing to scratch at it.. etc.

[kteague]

Hi. Do you have a copy of your sleep study results. Wondering the details of your PLMD, like how many movements and how many cause arousals. I agree with your doctor to settle in to your cpap treatment before focusing on the limb movements. I've read that some people actually see their movements improve on cpap. The rest of us have the opposite experience. There's been tons of prior discussion on here going back for years, a search for PLMD will give you more reading than you ever wished for. Most of it is repetitive so you won't miss much if you don't read it all. In my opinion, your first order of business is to make sure your cpap treatment is optimized. Second is to determine if limb movements are the cause of your continued sleep issues. If so, I recommend that you become well informed before considering adding a med for the movements. We can talk more if/when you get to the point of knowing there's a need. Having PLMD can be problematic, but it's certainly not impossible to manage it.

[nyteowl]

I have my sleep study results.

The # of PLMS was 275
PLMS with arousals - 190
Index of PLMS was 53.3 and the Index of PLMS with arousals was 38.2

By contrast, my RDI (Respiratory disturbance index) was 15.3

they gave me a full printout of my sleep study results and they did review them with me, but I've been doing a bit of research here and there on various results.

Yeah, I'm dubious about the medications used to treat PLMD as they seem to vary widely. I'll have to cross that bridge when I get to it.

[kteague]

...The # of PLMS was 275... PLMS with arousals - 190... Index of PLMS was 53.3 and the Index of PLMS with arousals was 38.2
By contrast, my RDI (Respiratory disturbance index) was 15.3
Yeah, I'm dubious about the medications used to treat PLMD as they seem to vary widely. I'll have to cross that bridge when I get to it.

My dear, surely you are already on that bridge. If your current movements are anywhere close to in this study (diagnostic, not titration study, right?) you need some relief. One can not expect to function normally with sleep so fragmented. Does anyone observe you sleeping to confirm that your legs are very active? I suggest you start with getting your ferritin level checked and make sure it's up around 100 before you even consider medication. That's thought to reduce the risk of developing some of the possible side effects on the routinely prescribed meds. I am able to manage my legs through focus on being nutritionally sound in those things that support muscle and nerve health, along with using a TENS Unit before bedtime. Doesn't work for everyone. Good luck going forward.