Could someone look at my Sleepyhead results and talk about UARS?

[kteague]

If you were able to slow down the speed on your videos you might be able to tell how much of your limbs are involved in the movements. As it is, they happen too fast to tell much. Having involvment of more than the legs is not uncommon. My arms were involved when I was augmenting, but not now. When one has a sleep study and the legs are wired, the study considers movements in totality with the rest of the data. Movements in specified proximity to breathing issues will be termed respiratory related movements. These have a good chance of being resolved with effective CPAP treatment. In periodic limb movements, they may or may not respond to resolving breathing issues. Just from what I've read here and on a message board for RLS and PLMD, true PLMs are not so likely to be resolved. What can happen is the better one sleeps when breathing is normalized, the more opportunity there is for a periodic limb movement disorder to manifest. For people wanting a sleep study to determine PLMD in the presence of sleep apnea, herein lies the rub. Most clinics will want to perform a diagnostic study without CPAP. This can give a false negative result as apnea events can mask movement events with the chronic arousals from breathing events without CPAP. It was many years and several sleep studies before a doctor I was with recommended doing a study while using CPAP at its previously determined effective settings. Once they explained it, it made perfect sense. This is the only way to know what your legs are doing in the current environment. Good luck with figuring things out. Your doctor is likely right that there are some markers in heart rate or respirations that are indicative of limb movements. I just don't don't know much about the specifics. Here's a little light reading confirming there is something to that.
https://www.ncbi.nlm.nih.gov/pubmed/31131533
https://www.ncbi.nlm.nih.gov/pubmed/30538592

[musicfreak]

Hi Kteague,

I was hoping when I went for a sleep study they'd spot PLMD right away. I guess I will have to keep fighting if they say everything is fine and try to convince them to do another study with CPAP .....sigh....I'm so tired trying to figure this out. I wonder sometimes if I don't have UARS at all but then I look at my doctors report and because of my anatomy he figures I have it (along with increased heart rate). (He performed a flexible fiber-optic examination in semi supine position which showed I have an unstable airway but there is only partial collapse).

He actually said he thought their was NO correlation between my breathing and any leg movements but I don't know how he can say that without a study or seeing a video.

When I first thought about PLMD I thought of how when I'm falling asleep and feel a jerk in my legs. I found out what a hypnic jerk was and figured what I was experiencing was normal. I just looked on youtube and some of the vids just showed the upper body jerking (sometimes the full body). With me I feel it's just the legs but who knows it could be the full body as well but I just don't feel like my arms move much. What I experience it's quite a sudden jolt with force, so much so it has scared me. It doesn't necessarily feel like I'm falling. Does this sound normal? I assume because it happens while I'm falling asleep it's a hypnic jerk and not PLMD? When it happens with such force I don't think it happens every night.

[kteague]

Hi Kteague,

I was hoping when I went for a sleep study they'd spot PLMD right away. I guess I will have to keep fighting if they say everything is fine and try to convince them to do another study with CPAP .....sigh....I'm so tired trying to figure this out. I wonder sometimes if I don't have UARS at all but then I look at my doctors report and because of my anatomy he figures I have it (along with increased heart rate). (He performed a flexible fiber-optic examination in semi supine position which showed I have an unstable airway but there is only partial collapse).

He actually said he thought their was NO correlation between my breathing and any leg movements but I don't know how he can say that without a study or seeing a video.

When I first thought about PLMD I thought of how when I'm falling asleep and feel a jerk in my legs. I found out what a hypnic jerk was and figured what I was experiencing was normal. I just looked on youtube and some of the vids just showed the upper body jerking (sometimes the full body). With me I feel it's just the legs but who knows it could be the full body as well but I just don't feel like my arms move much. What I experience it's quite a sudden jolt with force, so much so it has scared me. It doesn't necessarily feel like I'm falling. Does this sound normal? I assume because it happens while I'm falling asleep it's a hypnic jerk and not PLMD? When it happens with such force I don't think it happens every night.

Yes, it can be a bit much to sort through. If your doctor thinks your movements are periodic limb movements, then those are usually not related to breathing. I couldn't say "always not" because it seems nothing is absolute. When falling asleep it can be hard to differentiate between a hypnic jerk and PLMD. Could be as you slipped into sleep the PLMD kicked in (pun intended). The difference would be if the movements continue when you don't wake right back up. When the movements are secondary to a medication, the lines can get blurred between wake and sleep. While this is a bit circuitous, if your movements worsened after starting CPAP, I'd say that's a pretty good co-indicator there is disordered breathing. If you did not have disordered breathing, then there would have been nothing for the CPAP to improve on, hence no reason for the movements to worsen.

[musicfreak]

Hi Kteague,

Thanks for the info.

I think it's hypnic jerks because when I have a big jolt like that it always seems to be when I'm going to sleep. None of my videos show movements like that.

I have another video for you to look at. This one is the real time video. I discovered if I uploaded it to youtube you can adjust the playback speed. This made it faster to go through. I feel I'm seeing PLMD. It's mostly toe twitches and happens through out the video. There are a couple leg twitches as well.

Could you look at these times and let me know what you think?

1:40.50 (for approximately 50 seconds) is a bunch of toe twitches.

Below is small jerks of the legs.
1:46:45
1.:47:10
1:50:53

In between all the times given are other toe twitches (basically 139:35 to 1:50:53 is a good sequence of what's going on).

I'm not using CPAP in this vid. The link is https://www.youtube.com/watch?v=qckmMDz ... e=youtu.be

I think I may do another one tonight with no covers or just a sheet. At this point does it matter if I use CPAP or not?

I would also like to mention that ever since I can remember I've always been low in iron. My Ferritin premenopause was often 15-20 or so. One time it was 11. But since menopause it's been better. 6 months ago it was 69. 4 years ago it was 151 when I was perimenopause but that was with supplementation. (I didn't feel any better).

Cheryl

[musicfreak]

Hi Pugsy,

Here is Sleepyhead results from a fixed pressure of 10. I woke up a few times as I was cold and also wanted to take my mask off (the tape worked!). Everything time I woke up I fell back asleep right away.

Do you think I did better on fixed pressure of 10? The flow limit looks better. But with any pressure I've shown you the flow rate doesn't look good.

Please note, in my first post I meant to show you Sleepyhead graphs with pressure 6-12 and 7-15. I accidentally did 2 graphs of 7-15. I've corrected it and added the 6-12 one now. Not sure there's much difference but added it anyway.

[Pugsy]

My flow limitation graph looks worse than yours.

You are going to just have to give it a bit of time and see how you feel. The software reports aren't going to help you out very much.

How you sleep and feel is going to be your best way to gauge how well things are going.

On paper you look great. Most likely the centrals/CAs are mainly awake/arousal flagging and of no importance except to document that you were awake briefly.

[musicfreak]

My flow limitation graph looks worse than yours.

You are going to just have to give it a bit of time and see how you feel. The software reports aren't going to help you out very much.

How you sleep and feel is going to be your best way to gauge how well things are going.

On paper you look great. Most likely the centrals/CAs are mainly awake/arousal flagging and of no importance except to document that you were awake briefly.

Well that makes me feel better that my flow limitation is better than yours

My doctor seems to rely a lot on the flow limitation to tell him if therapy is working or not for UARS.

I'll give it a month I guess at a fixed pressure of 10 and if I don't feel better I'll ask for a sleep study again. I know I could give it longer but I'm concerned I may have PLMD and want to have a sleep study asap.

If you think I should try higher than 10 let me know but seems it might be alright for me.

Thanks.

[Pugsy]

I see no reason to try more than 10 at this time.
And yes, the doc relies on the FL graph a lot because that's all he really has to rely on in terms of stuff on paper. It's not optimal but it's all we have.

And to show you what I mean about yours is better than mine.
Here's last month in the for her mode july 5 I think. Sometimes it's a little better than this.
To be fair I am running the absolute minimum of 7 with EPR at 3 here... I could smooth it out a bit with more minimum but from past experience it didn't really make me sleep better or feel better when I was using more. So I just said to heck with it and this is what I run with. AHI that is real is always less than 0.5....have some SWJ AHI flagging due to back pain stuff but that's a separate issue.
I long ago figured out that my less than optimal sleep quality had nothing to do with the airway and everything to do with everything else in my life.

FL for her mode july5.JPG

[musicfreak]

I see no reason to try more than 10 at this time.
And yes, the doc relies on the FL graph a lot because that's all he really has to rely on in terms of stuff on paper. It's not optimal but it's all we have.

And to show you what I mean about yours is better than mine.
Here's last month in the for her mode july 5 I think. Sometimes it's a little better than this.
To be fair I am running the absolute minimum of 7 with EPR at 3 here... I could smooth it out a bit with more minimum but from past experience it didn't really make me sleep better or feel better when I was using more. So I just said to heck with it and this is what I run with. AHI that is real is always less than 0.5....have some SWJ AHI flagging due to back pain stuff but that's a separate issue.
I long ago figured out that my less than optimal sleep quality had nothing to do with the airway and everything to do with everything else in my life.

FL for her mode july5.JPG

Thanks Pugy. Makes me feel better to see your flow limitation compared to mine

Thanks again for all your help.

[kteague]

Ok, looked at your video. Had a hard time finding consistent timing between movements except for in brief spurts. I still think you probably have periodic limb movements. To what degree I can't say. Since this is without CPAP, it would be interesting to see if there is a difference while using CPAP. The reason being if you have disordered breathing that disrupts sleep stages, this can interfere with the movements and throw off any timing. We only see the periodocity when there is sustained sleep. Please send me a PM again when you post the next video. Hang in there.

[dogsarelife]

Hi,

I was wondering if someone could look at my Sleepyhead results?

Hi Cheryl - welcome to cpaptalk. Pugsy and Kteague have been some of the most helpful for me, based on their responses to my current questions, but also if you click on their usernames you can see their knowledgeable responses to other people.

I have UARS and I struggled with chronic fatigue like symptoms and fibromyalgia for years, so I think I understand a bit of your predicament. I was lucky to have the PES test. Are you anywhere near Texas? If so, I am willing to share the name of my doctor with you who does this test in their sleep lab. It was worth it for me.

If you click on my username, and go to my very first or second post where I posted my sleep study results, you can see the pressure esophageal manometry results showed that I needed anywhere from 12 to 18 cm H2O to keep my airway open and I actually feel best with my machine set with ~16 cm H2O epap and 19 cm H2O ipap.

When I look at your sleepyhead, if I assume that your UARS is anything like mine (it may be, it may not be) then what I see is that after an obstructive apnea, it looks like you're waking up kind of in alarm. See how the sequence of events seems to be you have an OA, and then your pressure shoots up? I think that is a unique characteristic of UARS people to react like that, versus people with straight OSA who manage to sleep through those events.

So what I did was -
1) I kept increasing my epap pressure until my OAs were absolutely taken care of. I know there are other things that can cause insomnia/disrupted sleep besides sleep disordered breathing, but for me the jerking awake / nightmares/waking up hot were absolutely related to apneas and hypopneas.

1a) If you have stress in other areas of life - it serves to address those things too. Stuff like, I ate on a regular pattern, I tried to go to bed at regular hours and get some sunlight every day. If I felt like I was sick or weak, I would do my grocery shopping online and just go pick stuff up. Things like that. Since our nervous system is already on overdrive from the UARS as you probably can tell.

2) I began practicing myofunctional therapy, i.e. practicing keeping my tongue glued to the roof of my mouth and my lips pressed together, and focusing on nasal breathing at all times, as well as using my diaphragm as fully as possible. Some people say myofunctional therapy is bunk, but there are one or two studies that it can help decrease the severity of apneas and hypopneas. I think for me, with pretty bad UARS, that proper tongue position is important so that my tongue doesn't narrow my airway of.? your mileage may vary in this area and that's fine. I know that there are some people who breathe just fine without keeping their tongue up. So I am just throwing out suggestions but ultimately things have to be customized for you - pillows, EPR, pressure, mask, humidity, temperature, tongue position, body position, etc. etc.

3) of course, the caveat of everything is that with UARS, our nervous systems are hypersensitive so any changes I made, I basically made fairly slowly - in increments of 0.6 to 1 cm H2O every 3-4 weeks.

Although, I was lucky in that I was able to go from epap of 5 to 12-13 cm H2O no problem, but once I got above 13 cm H2O was when I really started to feel the narrowing of my upper airway unless I jutted my lower jaw out and kept my tongue up.

Ultimately, in my limited experience with treating UARS, it's a fine balance between finding a pressure that keeps your airway open but also one which feels relaxing to you and enables you to sleep.

4) last but not least I got a Resmed bilevel pap and I played with the different settings (trigger, cycle, rise time) and thanks to several people on this forum, I learned how to adjust settings to make it easier for me to breathe and not feel like I was fighting the machine on inhalation and exhalation because it feels like I have a weakened diaphragm from, as you said, all the years of poor sleep. For a long time, It didn't feel like things were repairing after I would, say, try to exercise, due to poor sleep. I think that's one of the hallmarks of fibromyalgia - poor stage 3 sleep slow wave sleep.

Good luck and wish you deep sleep.

[musicfreak]

@Kteague

Thanks so much for looking again. You have to have 20-40 seconds between movements right? Also does it have to last a certain amount of time to be considered PLMD?

That's the thing even if it might be PLMD it may be minor and not affecting me. But I need to investigate more.

I was going to wait and experiment with different pressures and then see the specialist but I just realized my 6 month referral hasn't expired yet. I'm seeing him Aug. 27th. I will try to get him to see 1 or 2 vids and see if he'll finally refer me for a sleep study if not I'll demand it from my family doctor.

I'll try to do another video with CPAP and get back to you.

Thanks.

[musicfreak]

@Dogsarelife Thank you so much for the info! I really appreciate it!

I know Pugsy and Kteague are amazing! I've been reading Cpap on and off for a while to try and figure things out. They always are so helpful and I'm blessed their trying to help me too.

I'm in Vancouver BC. I looked before to see who does the Pes test and I don't think I found anyone in Canada at least online. I looked into going to the US and if I remember correctly it would have cost me around $3000 US dollars (nearly $4000 Canadian) to get it done. I don't think it was in Seattle either. I would of had to fly somewhere else. Too expensive for me.

I would like to respond to the rest of your message but I'm absolutely wiped tonight. I will try to get back to you tomorrow.

Thanks so much!

[musicfreak]

@Dogsarelife

That's interesting the pattern you noticed. I'm still trying to figure out what the graphs all mean. I'm going to be watching that pattern as I increase the pressure. Right now I'm doing fixed pressure (as my specialist wanted to see some results) but I'm going to experiment with auto too.

I'm going to try and practice better sleep hygiene. As for stress I have a lot of it right now. I'm struggling to work 3 days a week and it's a physical job. It started out as a volunteer job one day a week (it was a bigger job than I thought) and then I got offered a paid position. I took it as I want to save money to make my life easier in the future. I want to hang in there another year but I'm going to quit sooner if I reach my goal financially. I know this isn't good but the stress of finances isn't either.

I can order groceries online I guess but the struggle for me is carrying things home on the bus as I don't have a car. More stress.

The myofunctional therapy sounds interesting. I know I do open my mouth but it doesn't happen all the time. Keeping the tongue up seems odd though. I try as I'm reading this and I can see it will just want to relax and come down!

I'm still having a hard time adjusting to my mask. So much so the night before work if I'm having issues and can't sleep I have to take it off so that I can get to sleep. I know that doesn't help. I also do it when I'm completely wiped and want to crash. I can't deal with it. I'm trying to do better though. Pugsey suggested the Bleep mask which I was open to but I found out you have to keep buying the adhesive patches and I can't afford it. But I will keep it in mind later when I can afford it more.

UARS sounds very complicated to figure out and so many factors are involved. It's not straight forward at all. It doesn't help that a lot of doctors are clueless also.

I will try to go slowly with pressure changes but I tend to want to go fast! I can see this going to take many many months.

I do feel like I'm fighting the machine. All I know to make things easier is to use the EPR. Without it I felt like I was choking. If you or anyone has any ideas on any settings that might help me please let me know. It can be overwhelming trying to figure this out on your own. My doctors are useless. I'm just going back to the specialist to ask for a sleep study again to see if PLMD is a problem too. Other than that I'm fed up and doing things on my own.

You can really weaken your diaphragm from UARS? I guess this is the same for sleep apnea?

It's nice to know someone else who suffered from what they thought was CFS/FM. I don't know if you've scanned my other threads but I've been suffering over 30 years with health issues.

You have been very helpful and have given me things to think about and do.

Thanks so much!!!

[kteague]

Just did a quick google of "periodic limb movement scoring". Below are a couple excerpts. Appears the threshold for the presense of Periodic Limb Movements of Sleep being diagnostic as a disorder is >15 per hour. That's not saying a lower number can't be problematic and disruptive of one's sleep, but as with assigning the severity of OSA, they have to place the markers somewhere.

"Periodic limb movements of sleep (PLMS) are characterised as repetitive limb movements (mostly of the legs) arising mainly during non-rapid eye movement (non-REM) sleep. [1] [2] [3] [4] [5] Periodic limb movement disorder (PLMD) has been defined as >15 PLMS per total hours of sleep time, associated with sleep disruption and excessive daytime sleepiness unexplained by other causes. [1] [2] [3] [4] [5] The association with sleep disturbance and excessive daytime sleepiness is controversial, however, and the aetiology is unclear."

"Score all of the periodic limb movements that are part of a series and that start in an epoch. ... A limb movement may last from 0.5 to 10 seconds. There must be at least 5 seconds and no more than 90 seconds between limb movements. There must be at least 4 limb movements in a series.
AASM Inter-scorer Reliability Help"