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

Hi,

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

The first result is with pressure 6-12 and the next one is 7-15. My prescription is 6-12 but I haven't been feeling any different. I've only been using CPAP about a month. My previous trial even though my prescription was 6-12 the nurse set the machine 5-8. I didn't feel any better and had no RERAS. I thought I didn't have UARS but my doctor suggested I do straight CPAP at 7 which I haven't bothered to do yet as I have in the past and it made no difference. I'm now doing another trial and I still don't have any RERAS at the higher pressure.

I've been diagnosed with UARS even though I haven't had the PES test as they don't do it where I live. My doctor is going by my symptoms and rise in heart beat when I sleep.

My question is what do I do next? Do I need to increase it more? Do you think with no RERAS I don't have UARS?

Also most nights I only have the mask on 2-3 hours as I feel claustrophobic. I'm using the Dreamwear Nasal mask which seemed to be the least claustrophobic mask I could find. Is there another one that's better? The only time I seem to be able to keep the mask on 6-7 hours is if I"m absolutely exhausted or I've taken a muscle relaxant that conks me out. Most of the time I can fall asleep with it on it's just in the night where I take it off.

Thanks,

Cheryl

The absence of any RERA flags doesn't necessarily mean no UARS because you are using the machine and it is very possible that the pressure is preventing further RERAs.
Anything you see flagged is what happened despite the machine...we have no way at all to know how many of anything was prevented.

When you say you aren't feeling any different can you be more specific about what kind of symptoms you are having that you wish you didn't have?

Do you take any medications of any kind? If so, what?

Your sleep appears to be very fragmented and you admit to only being able to keep the mask on for 2 or 3 hours.
Some people solve the problem of removing the mask in the middle of the night by taping it to their face so that the discomfort of the tape pulling wakes them up enough to stop the unwanted behavior.

Hi Pugsy,

So I guess at both pressure settings the machine is preventing RERAS? I thought I'd at least see 1. Maybe I should lower the pressure and see if I get more though I know probably too low it won't register.

My symptoms are pain and fatigue. I was diagnosed with CFS/FM in 1989 and never felt better. Finally in 2008 I was diagnosed with UARS but was never treated properly. Now i feel like I have the right machine and higher pressure but I don't feel any different. I have FM I think from being sleep deprived all these years and it has affected my muscles. I never wake up refreshed. I could go back to bed again in a couple hours. Late at night sometimes I feel better but still tired. I usually can fall asleep no problem.

Do you think because I'm hypersensitive to the mask it's causing my sleep to be fragmented? And are you looking at Event Flags when you say that? I really don't understand how to read the data.

I don't feel any different with or without the machine. I know sometimes it can take people many months or even a year to adapt/feel better so I'm willing to persevere.

I have hypothyroidism so I take natural thyroid medicine. I was diagnosed in 1989. They figured it would take away my fatigue but it did nothing. I just know without it I feel worse.

Most of the time I'm aware I'm taking the mask off. I guess I give up cause deep down I feel like the machine won't help me as I've been through a couple trials and didn't feel better. But this time I'm doing it on my own and am willing to try long term to see if it works. I guess I have to be more positive. I could try taping the mask as there's been a few times where I didn't realize I took it off.

With not feeling better on my last trial the nurse wondered if I had PLMD. My doctor doesn't think so as he says my breathing (heart rate I guess) doesn't doesn't seem to indicate such movements? Later I did a time lapse of me sleeping and I thought I saw funny movements but can't be sure. It might have seemed my legs were jumping because it was time lapse. When I get really exhausted I have to have the heating pad on my feet as they're so cold and to also stop muscle spasms in my feet and calves but even that doesn't work sometimes. I take calcium and magnesium and that has helped. Sometimes it can wake me up in my sleep. But the cramping could be from my over all health issues as my body has basically fallen apart from possibly being sleep deprived for 30 years. I don't know if this sounds like PLMD or not.

Every time I ask for a sleep study I'm told no. I was going to try CPAP one more time and demand a sleep study if I'm not better.

Thanks for your advice.

musicfreak wrote: ↑

Wed Aug 07, 2019 11:08 pm

Do you think because I'm hypersensitive to the mask it's causing my sleep to be fragmented? And are you looking at Event Flags when you say that? I really don't understand how to read the data.

Fragmented sleep thought was simply the times you turn the machine off and back on again. I know you must be awake to do that.

Is it possible that your sensitivity to the mask is a factor in the fragmented sleep....definitely.
If you have done any UARS research you probably read that UARS patients tend to be sort of hyper sensitive in general. Little things that most of us aren't bothered with seem to bother UARS patients.

Also I have read that UARS patients tend to need more pressure than regular OSA patients might need. The data that the machine gathers really isn't/wasn't designed for UARS because the problems are different. You have to go more on how you feel than what the software reports might show.

The RERA flagging...that's an educated guess saying that the breathing looks like the breathing pattern of someone who has a respiratory event related arousal...wake up from sleep. The problem with the machine is that it doesn't really have any way of measuring sleep status.
2 kinds of arousal...respiratory related and spontaneous...this is something a sleep study would help differentiate with.
Spontaneous...no known cause.

You might start here and learn how to evaluate the flow rate to look for evidence of arousals. We probably won't be able to tell the difference between respiratory related vs spontaneous but you can look to see how many times you had arousals.
You may or may not remember the arousals. Watch all the videos.
http://freecpapadvice.com/sleepyhead-free-software

Read here about how important it is that we have the nice normal progression of all the sleep stages and why we feel like crap when we don't. I know it is talking about alcohol but just substitute anything for alcohol...even spontaneous arousals that we don't know why.
https://thesleepdoctor.com/2017/11/15/t ... hol-sleep/
Bad sleep quality from any reason is going to make us feel like crap.
It's the reason UARS patients feel so bad....their sleep quality is crap.

You have some additional health issues that very definitely could also be a factor in not feeling so great...the machine can't fix a problem not related to the airway...and we don't know just how much of a factor your other health issues might be.
Won't stop us from trying to improve things though...not like we have much of a choice anyway.

Now...what to try with the machine to see if maybe we can get some better sleep.

Look at the mask that I have in my equipment profile.
Let's try to find you a mask that is as less on your face as possible to lessen the mask annoyances causing arousals. The Bleep is about as nothing as a person can get.
Have you ever tried a nasal pillow mask? If so, which one and what were your thoughts on it?
If the Bleep looks interesting to you...let me know and I will point you to a past thread with reviews and lots of discussion about using it.
It's not a pillow mask because it doesn't really have anything to go inside the nostril....so technically it's a nasal mask but doesn't cover the nose like most nasal masks.

Finally....if you want to try machine pressure tweaks to see what happens...your doctors idea of fixed at 7 cm isn't that far off but I would suggest a much higher pressure.
You can still use auto mode if you want to but the pressure is unlikely to move around much. You aren't having what normally will drive the pressures up.

I am going to suggest at least 10 cm...leave your EPR as it is...keep a very detailed log about how you slept, hours you slept, how many wake ups, etc. You are going to have to rely on subjective feelings and not what you see on the software reports for evaluation.
So keep very detailed records.

And of course...try not to yield to the temptation to remove the mask in the middle of the night.
Bad habits are easy to make and hard to break.

Could you clarify something for me? You said you didn't have the PES test, but have you had any sleep study at all? How was your heartbeat determined, from a sleep study or wearing a monitor? There's some people on this forum who are really good at looking at machine data, even to the degree of picking up clues in breathing patterns. Your questions prompt me to wonder if there are distinct differences in breathing and/or heartbeat fluctuations from RERA's vs PLMD. Anybody know that?

As someone who uses CPAP and also has PLMD, my story is that getting my CPAP treatment to a point where it was effective was what began my turnaround. It gave me just enough energy to then address the movements. I urge you to follow Pugsy's direction and try to make sure any possible UARS is treated. While a time lapse video may not show you the timing of any movements, sometimes the appearance of the movements can give a good idea if you are dealing with periodic limb movements. I for one would be interested in seeing a bit of it. Good luck with things.

@Pugsy,

Thanks so much for all you have written. You're amazing. I really appreciate it. I will be looking at those links more on the weekend.

Yes, I did read that UARS people are hypersensitive.

You say the machine I use isn't/wasn't designed for UARS. But it has a special algorithm for it doesn't it?

Thanks for explaining the RERA flagging.

The chronic fatigue and muscle pain I've had since I first started to feel unwell 32 years ago. I feel like it's all related. I also have stomach issues- I'm always hungry and my stomach is always gurgling and once in a blue moon I'll have reflux. I also have post nasal drip. These symptoms I feel are from LPR (laryngopharyngeal reflux).

The Bleep mask looks interesting. The claustrophobia feeling I have is from the air going into my nose and feeling the mask up against my nose (this particular type). The straps don't really bother me. Please let me know the thread that has reviews and discussions about it. I would like to read about it.

I tried a nasal pillow mask when I was at the sleep store and I didn't like how it felt. I found it uncomfortable. I'm not sure which one it was. I feel like it could have been a Resmed one. Whatever it was she took the pillows of whatever brand it was and snapped them into the Dreamwear strap. I feel like it could have been the P30i? If that's possible? It looks like it could fit.

I will try 10 on fixed CPAP.

I already feel like pulling the mask off is starting to be a habit so I'm trying to persevere more.

Thanks again for your reply and all the info.

@Kteague

Thanks for your reply.

I haven't had a sleep study at all. I've asked my family doctor 3x and all she does is refer me to the Respirologist. Originally she thought it was faster to see him as the waiting list for a sleep study was too long. I've asked the Respirologist 2x and he said no because we don't use the PES test here. The second time I asked because I wondered about PLMD and he figures I don't have it because he thinks my heart rate doesn't seem to indicate such movements. He thought I wasn't feeling better because my pressure was too low and suggested I try fixed pressure at 7. I got tired of sleep stores and my doctors not helping me (this has been going on since 2008) so I'm doing a trial on my own. I bought a machine on Amazon for a good price and figure if CPAP doesn't work for me I'll sell on Craigslist later.

My heart beat was determined by wearing an Apnea Link monitor. I would be interested if there are differences between breathing and/or heart beat fluctuations from RERAS vs PLMD too. My doctor seems to think there's a difference. I should note he never looked at my video. I wanted to email it but he said he would have problems receiving it. Since then I haven't been back or I would have put it on my phone for him to view. I'm going to see how I do on my own with CPAP and possibly see him again later with my experiences.

I can believe getting the CPAP treatment under control would give you the energy you needed to address the movements.

I was hoping you would read my post and give your opinion. I also thought it would great if it was possible for you to view my video. I would love to know what you think. I will PM you soon and perhaps we could exchange emails? Or I could post it online for you to view. Maybe that would be best.

I will get back to you soon.

The DreamWear is a Respironics product.

The P30i nasal pillow thing sort of works like the DreamWear stuff but it is a ResMed product.

The two different products are not interchangeable.

musicfreak wrote: ↑

Thu Aug 08, 2019 8:42 pm

You say the machine I use isn't/wasn't designed for UARS. But it has a special algorithm for it doesn't it?

Well...not exactly. ResMed never really promotes the for Her algorithm as something for UARS. They are very careful about that.
They say it is gentler and different and designed for women who are bothered by the faster changes of the other regular algorithm.
Some people assume that means UARS but it's not actually the case.

There is really no algorithm out there that is specifically designed for UARS. People are still learning about UARS and the minute tiny difference in airway flow that these current algorithms have not been designed to look for.

The for Her algorithm is still for OSA stuff...but gentler and people are trying it in the hopes that the gentler response won't be as likely to cause arousals in the hypersensitive UARS patients. It is still a OSA algorithm though and the criteria for the responses are the same as the other algorithm in terms of OAs and hyponeas and such.

It is the algorithm that I would at least try if I had UARS though..

Here's the Bleep review thread/novel. Long with lots of discussion.
viewtopic/t174807/BleepDreamPort-nasal- ... eep+review

Looking forward to seeing your video in whatever manner you'd prefer to make it available. An advantage to posting here is more eyes could see it and maybe have some input. And keep me from going out in left field with my singular opinion. Check your PMs.

Hi Pugsy,

I swear the nurse snapped in the mask part but now I'm wondering if she had me try on a whole mask. Anyway, I'm not sure which one it was but it definitely was a pillow one and I found it uncomfortable. I don't like anything in my nose!

Yeah I'm definitely one of those people who assumed they were talking about UARS especially when I read this "AutoSet for Her therapy mode increases sensitivity to flow limitation and optimizes the response to these events." I can see how they'd have to be careful how to word things. Thanks for explaining the machine to me. It's crazy that people are still learning about UARS and proper testing and treatment for it. I asked you before if my machine was the best one for UARS and you said yes so I'm glad I have the right one.

Wow, I have lots of reading to do about the Bleep! I will look at it on the weekend. Thanks!

I didn't do well last night. I only had the mask on for 1.5 hours and I pulled it off. I was surprised as I was so exhausted last night I thought I would conked out and sleep 5-6 hours before pulling it off. (Usually it's 2 or 3 hours). I think I was half out of it when I took it off. Will have to look into taping it I guess!

UARS is a tough one. I would much rather have the worst case of plain OSA than UARS because there is so much that is unknown about UARS and the best way to deal with it and so much of what we have to go on has to be subjective instead of black and white data on the reports to help point us in any direction.

We do have some people here with documented UARS and getting there with their treatment.

I am going to edit your Topic to include UARS so that those people will see your thread and hopefully stop by with hints that helped them and might help you.

UARS isn't just for females....guys can get it too.

And even though the for Her model and the for her mode may not be explicitly for UARS...it's a 3rd mode of operation in a machine that a person can try to see if it helps or not. It costs the same essentially...might as well have that extra apap algorithm in our arsenal.
Always better to have something and not need it than need it and not have it. Logic tells me that it is at least worth trying.
UARS therapy involves a lot of tries.

Hi kteague ,

I've uploaded 2 videos in case one doesn't show enough. I took the vids in the winter. I tried to keep my feet in view but sometimes the covers covered them. As it's summer now I can try without covers. If you'd like me to re do it I can.

I saw your video. That is unbelievable. I think I saw a similar one a while back. That must be so hard to deal with. If anything if I have PLMD it's probably subtle. But I guess it interferes with sleep all the same.

I laughed at myself in one of these vids with the position I was sleeping lol!

Anyways, the links to look at them are:

https://youtu.be/pYOFHYhT8Bc

https://youtu.be/TcubGeT62_o

Let me know what you think. I don't know if the movements are normal or are an indication of PLMD.

Thanks.

Hi Pugsy,

I wish I had OSA too. It is much easier to treat. I've been battling health issues for 32 years and only 11 years ago I finally got diagnosed (because I asked to look into it) and I'm still not treated properly! The sleep stores aren't any help. I did a level 3 at home test and because my AHI was normal the doctor who analyzed my results said I didn't have a sleep disorder. I had to tell the nurse before and after the test that I was diagnosed with UARS. I felt like saying go read your website (as they listed UARS as a sleep disorder)!

Sure no problem adding UARS to my title.

I've read men get it but I guess it's more common in thin older women? That's me, slim and although I'm 50 now I started with issues at 18, actually 16 so 34 years ago. I only wish I was as lucky as others here that got diagnosed a lot sooner than me and appear to have better luck with treatment.

UARS therapy involves a lot of patience! I shall keep trying as I need better quality of life.

I'll get back to you in a few days and let you know how I did on a fixed pressure of 10.

Thanks again!

My sleep video is NOT representative of the usual movements of PLMD. My wild flailing was due to augmentation on a dopamine agonist. Without the meds, my movements more resemble yours. If I were a betting woman, I'd bet my last dollar on you having periodic limb movements. Being able to tell the timing would be the clincher, but just the fact that the movements are repetitive and classic in appearance pretty much convinces me. I noticed in some movements in the first video that when on your side, the top foot moved more than the one on the bottom. That's also in my videos - a difference between the free leg and the pinned leg. In diagnostic criteria, numbers matter, like count and frequency. It also matters if they cause arousal. One can have periodic limb movements without it reaching the level of being called a disorder. That we can't determine from your video.

kteague wrote: ↑

Fri Aug 09, 2019 11:30 pm

My sleep video is NOT representative of the usual movements of PLMD. My wild flailing was due to augmentation on a dopamine agonist. Without the meds, my movements more resemble yours. If I were a betting woman, I'd bet my last dollar on you having periodic limb movements. Being able to tell the timing would be the clincher, but just the fact that the movements are repetitive and classic in appearance pretty much convinces me. I noticed in some movements in the first video that when on your side, the top foot moved more than the one on the bottom. That's also in my videos - a difference between the free leg and the pinned leg. In diagnostic criteria, numbers matter, like count and frequency. It also matters if they cause arousal. One can have periodic limb movements without it reaching the level of being called a disorder. That we can't determine from your video.

Hi Kteague,

That's incredible you think I have it. I thought there was a good chance I had it since I wasn't feeling better on CPAP but then the doctor said my pressure was too low and he made the comment my heart rate didn't correlate with any movements. (I really don't know how he would know that without a proper study. Sometimes I don't think he knows what he's talking about). Anyway, after seeing him I ended up doing another video in real time but I'm too bored/impatient to go through it all.

Did you feel I jerked my leg from hip or knee down? I just felt there were times when it was more than the toes or feet moving but it is so hard to tell with a time lapse vid. But actually now I'm remembering one episode (as I did a few videos) where it seemed my leg would jerk and at the same time one of my hands that was resting on my chest went up at the same time. That's what really made me think I had PLMD.

I think I will play around with my CPAP pressure for another month or so to see how I feel and if I'm still having issues I'll have to demand a sleep study. This is getting ridiculous!

Thanks so much for looking at them.