Hi all! I am a new poster.....with PLMD as well as mild OSA

[gohoos1998]

After seeing the knowledge bestowed here, I felt I needed to make an account. My sleep doctor is not very helpful, but I have some major problems I need to address - this is why I'm here.

I was diagnosed with mild OSA (AHI = 9) and severe PLMD (67 movements/hr). My arousal index is 35 and a majority of these are PLMs. I know I need to take care of both of these issues.I was prescribed ropinirole bu my doctor, but I did some research and quickly stopped after learning about probability of augmentation. I am on an SNRI and I am aware of how this affects PLMD. I am planning on weaning extremely slowly and see ingwhat happens. I am also getting ferritin tested as I know this is very important.

I saw a poster here @kteague who seems extremely well-versed in all things sleep, but especially PLMD. I saw that she uses a TENS machine and it has helped her immensely. I would be extremely grateful if you saw this and posted here!

There are two ultimate goals of this post, but any advice relating to OSA/PLMD are welcome. I am beyond appreciative of anyone and everyone who responds here.

1. For sufferers of PLMD - what has worked for you. I think I am on the right track here. But there is a chance that I will have trouble without by SNRI and that my ferritin isn't low. What then? I am pretty nervous about this possibility. I am open to medication if there is low/no risk of augmentation, and of course open to any non-pharmalogical solutions.

2. I tried CPAP. I have the ResMed 11 and nasal pillows. I had very little trouble falling asleep with the machine. However, I have had EXTREME anxiety every time I was slept with it. It would lessen over the following days if I did not use it and am 100% sure that this was the cause. Is this a phenomenon you have experienced/you are aware of in general. I'd be happy to use it if I could get rid of this anxiety. It's happened at all pressures used. I had it at min4 max15 with no EPR, min7 max15 with 3 EPR, etc. I'm confused as to why I am anxious - it feels like a physiological response as I am not nervous about using the machine. I was able to get my AHI to 1.5 and still had this anxiety. I am thinking of getting a MAD as I am a skinny and feel that my OSA is caused by my jaw/tongue (although I want to confirm this with an ENT).

I am a 25 year-old male with my whole life ahead of me. I have extreme brain fog, anxiety and fatigue. I would love to get my life back. If I sound desperate, it is because I am.

Thank you again to everyone who responds. Extremely grateful.

[Pugsy]

Welcome to the forum.
I edited your subject title to get kteague's attention.

[gohoos1998]

Appreciate it Pugsy!

[zonker]

in case kathy doesn't see the subject, i'll see if i can evoke her here-

kathy? can you help a newbie out?

[gohoos1998]

Thank you Zonker!

[kteague]

Someone say my name?

Oh where to start? Sounds like you've been doing your homework, and that's good. Saves me a lot of typing. lol In general, please know that when both OSA and PLMD are present, there is a bit of a dance, and any one night snapshot of your sleep is not likely to tell your full sleep story. Both disorders vie for prominence and the one that wins for any given arousal may have obscured the other that would have happened had it not been precluded. When either disorder is effectively treated, then one may more fully appreciate the severity of the other disorder.

As to the dopamine agonists, if one can get relief at a low dose, the chances of side effects and augmentations aren't so dreaded. That said, I've never talked to anyone whose movements were resolved at the low starting dose. And it was at the entry dose when I had sleep attacks that were dangerous. But sleep is too important to automatically rule out something that may help. I have zero experience with the med you are currently taking so I'll leave that for someone else.

Hoping to find my way without the meds I tried to make sure I gave my body what it needed for healthy muscle and nerve function. I took supplements including Vit D, magnesium, some B Vitamins, calcium, and iron for my ferritin level. I would recommend getting advice from someone who is doing more than winging it to get a comprehensive nutritional plan. I think all my efforts combined helped, but one thing alone was not enough. What I really couldn't tell you is how my case of getting over augmentation relates to an untreated case. Using the TENS with the electrodes placed on my low back (buttocks) as prescribed for low back pain is where I place the most credit. It was a consistent and persistent application that helped over time. It seemed there was an accumulative effect.

After a few years now of rarely needing even the TENS, lately since knee replacement surgery my PLMD has been disturbing my sleep again. I did notice my ferritin is down to 40 and I can't help but wonder if that's contributing, so I'm back on vitamins. But I still find TENS use before bed gives me good sleep. Good luck with finding your way to that for yourself.

Edit: Your Item 2 about anxiety using cpap - It may be that the masking I referred to above could be at play. No more apnea events leaves free rein for the PLMD to more fully manifest. I find active PLMD makes me hyper sensitive to sensations and my aggravation level goes through the roof. I remember not being able to stand the mask touching my face. Once you get your legs calmed down hopefully things will improve.

[gohoos1998]

I am glad we were able to summon you . Really, really appreciate you taking the time to write here. I have definitely done my homework - glad you noticed!

I think a very important to glean from your comment is the "tug of war" between OSA and PLMD. The sleep study results were a snapshot in time, just 1 night out of many. Either one of the two could've dominated, and therefore it is likely that both my OSA and PLMD are often worse than shown on the study (and sometimes not as bad!).

I think it is pretty clear that I need to get off Pristiq. If I can get off AND get ferritin in check (if that's a problem - checking saturday), I think this should really help. You make a good point about the comprehensive nutrition plan. I have low Vit D (in the 20's - forget the unit of measurement) and am working on that.

Lastly, the point you make about PLMD taking over during "low apnea event" nights is fantastic and goes back to the first initial point about OSA and PLMD vying for supremacy. This reiterates the importance of treating the PLMD.

I want to say that I am very happy you were able to overcome augmentation and a knee replacement and are on the other side, although not "cured", living a much better life.

I've wanted to give up, but you give me hope. There was a 2 year point (really, until I was recently diagnosed a few months ago) where I felt I was going crazy. I had no idea what was wrong. Just knowing the things I have to treat make this a lot easier (although not easy!).

Again, thank you so much for your help here. I am sure we will come into contact in the future as I will be posting on this site plenty.

[kteague]

Glad you are feeling hopeful. Did you see my video that's linked in my signature line? I kinda feel that knowing there's life after years of that misery, surely there's cause for hope to be very much alive. Good luck with things!

[gohoos1998]

Oh my goodness gracious. Those movements are VIOLENT. My blankets are on the floor and my sheets are untucked in the morning, but you were essentially taking part in anaerobic exercise! If you can overcome those, I can overcome mine. Just will take a lot of work, but the possibility of living the life I want to live helps me continue in the search.

Also, get that ferritin up .

[kteague]

btw The Restless Leg Foundation (rls.org) has several people on their community board who have PLMD. It is not uncommon for RLS and PLMD to travel together. Seems some of the posters there have persistent and severe cases and are working valiantly to manage symptoms.The site offers info on what's latest and I've learned a lot there. I am sleepdancer2 over there.

[gohoos1998]

Wonderful. I took a quick look but need to look at it in more detail. Unfortunately, I really believe that most (not all) doctors are not willing to go the full 10 yards for us and that educating ourselves is the most likely way to living a normal life! So this is great.