In the UK.....Potential UARS advice needed - considering WatchPat and buying Aircurve VAuto

Hello, new user after a short-time lurking. I am 24yo female, living in the UK, looking for advice after NHS frustrations.

Signs and symptoms: tired all the time (more drained than sleepy), takes ages to fall asleep, very light sleeper, teeth grinding, occasionally snore, small-ish jaw, large tonsils, large tongue (I have a lisp), cold hands and feet, sleep on my side, unexplained joint pain (not arthritis), take a long time to recover from physical activity i.e. weightlifting. Have been this way since early teens, possibly before.

First home sleep study provided by NHS - basic pulse oximeter, heart rate monitor and nasal cannula with auto-calculated results (shown on the monitor of the equipment which is why I have the exact numbers)
* AHI 0.6
* Spontaneous/autonomous arousal index 37 per hour
* No abnormal oxygen desaturations - average 97%, 1 drop per hour, lowest 84%
* Pulse average 66bpm
* Recording time 9.7hr (I was awake for about 2 hours).

Second home sleep study with NHS - pulse oximeter, heart rate monitor, nasal cannula, thoraco-abdominal bands and electrode sensors on legs - no EEG sensors. Consultant rang me to give me the results but only very vague info given.
* AHI 1.4 - the only actual number I was told
* No abnormal oxygen desaturations
* No periodic limb movements (I don't have restless legs so not surprised)
I asked consultant for RERAs/flow limitation events under threshold for hypopnea - he would not tell me (probably not scored).

Consultant said arousals were not scored. I challenged this as my first study indicated lots of fragmented sleep, he said he does not see anything concerning with my results and that arousals can't really be scored without an EEG in full PSG which he will not refer me for. Of course I know cortical arousals need EEG but I also know that they can be estimated, just like RERAs can be estimated with thoraco-abdominal bands + nasal cannula...
I feel they deliberately only scored AHI and Oxygen Desaturations as they knew I would test negative for these, but may show signs of sleep disorder on RERA/flow limitations and arousals so didn't score these. I thought that arousals at least were standard for sleep study scoring, although I know many technicians won't do RERAs. He just kept saying I don't have sleep apnea, my AHI is very low, there is absolutely nothing wrong with my sleep from a physical perspective. He then started telling me to ask for a referral to insomnia clinic and was very clear that his clinic was done with me. I can sleep for 8-10 hours when uninterrupted, although it takes a long time to get to sleep, so I don't think insomnia is my problem.
At my first visit to the department a doctor told me my arousals weren't concerning as they don't disrupt sleep, I would just go straight back into deep sleep. I'm relieved to be discharged as I've had a terrible experience with them but very frustrated that they could have scored my study for RDI and arousals and it would have helped me a lot. I don't want or expect NHS CPAP treatment by the way.

Where to go now? I think my partner must think I'm a hypochondriac, as I've seen the "experts" and they've said there's nothing wrong with me - but I don't feel like my sleep has been properly investigated. I've just ordered a WatchPAT 300 study to do this week, then if there's any significant RDI I'm looking at "UARS" treatment options.

I'm probably jumping the gun here as so far I've had nothing to say I do have RERAs, but Secondwind CPAP have got Resmed Aircurve VAuto used machines for sale, it would cost about £640 with shipping so that would be my choice if I do need a PAP device. Happy to use Oscar and journalling to figure out settings - I'm very detail-oriented so suits me.

Does anyone have advice for me about my situation? I'm almost starting to doubt myself here. I'm putting in a subject access request so I can see all the info the NHS holds about me as the sleep clinic doesn't wish to provide me with a copy of the report or give me any specific information about it (in the UK a formal request process is the only way to access your full medical records). I will post my WatchPAT results when I get them. If I could go back in time I would have done WatchPAT at the start of this year and not wasted 8 months going through the NHS process.

Have you had any other potential problems investigated, like thyroid, Lyme disease, etc? Apnea is not the only sleep (or other) condition that causes trouble, and insomnia should also be looked into (if you do a forum search here on it you'll find lots of info).

Hmm I've had blood tests done through my GP a few times - thyroid is definitely normal, everything was completely normal on my most recent one earlier this year. I've not considered Lyme disease - I googled the symptoms and they're all quite general. If the WatchPAT report shows everything normal then I think I'd accept it's not sleep breathing related and would have to start looking at other possible explanations I only have problems falling asleep but can sleep for long enough that I should feel refreshed but instead I feel quite groggy (like a hangover) especially in mornings.

Problems falling asleep (taking a long time) is called sleep onset insomnia.
Problems staying asleep (waking often) is called sleep maintenance insomnia.
Sounds like you have primarily sleep onset insomnia.

UARS is a difficult diagnosis to make and most often it is made by ruling out other airway issues. To know for sure a person needs a sleep study done in a lab with a Pes device. Hard to get even here in the US and darn near impossible in the UK especially when the doctor has already decided you don't have airway issues that might be messing with your sleep quality.

We can have arousals during sleep that we don't remember and those arousals can mess with your sleep architecture which then in turn messes with the restorative powers of sleep. The data available from a machine like you are considering buying might or might not help you identify arousals that you might not remember. Obviously to know if a person is having arousals it has to be known if a person is asleep or not. These machines can't measure sleep status but with education a person can learn to spot evidence of arousal/awake breathing because asleep breathing looks different than awake breathing. A lot of work and not easy but it can be done.
Go here and watch the videos and you can see what I mean.
http://freecpapadvice.com/sleepyhead-free-software

Fatigue complaints....very common and obviously might be related to sleep issues but also might be related to other physical or mental health issues.

Do you take any medications of any kind event OTC?

Do you have any other health issues going on?

What do you mean "light sleeper"? Wake often during the night? If so, how long to get back to sleep?

How much actual sleep time do you think you get? Not time in bed necessarily but actual sleep?

It's certainly worth investigating your respiration during sleep a little further, and I'll be curious to know what the results are. But several of your observations suggest that you have some other problem, either in addition to, or instead of, a sleep respiration issue:

* unexplained joint pain,
* long time recovering from exertion,
* feeling drained rather than sleepy.

Did your blood work include tests for autoimmune diseases in the connective tissue disease family? These tests would definitely include ANA (antinuclear antibodies). And did you tell your doctor about each of those three observations I mentioned? If you left out anything, it'd be good to include it.

Thank you for the replies. It has been helpful to see things from another perspective.

@Pugsy - I think I described it badly - I get joint pain easily from repetitive activities like computer and mobile phone use, operating clutch pedal in the car, like I'm more sensitive to the strain of doing those activities, which make me wonder if inhibited bodily repair processes at night due to poor sleep could be the cause.

No medication aside from combined contraceptive pill - no side effects from this.

No other health issues.

I wake easily at night but only when something wakes me up e.g. my partner getting up, a noise outside. For a long time I wore earplugs to combat this as I couldn't even tolerate the sound of a fan at night, I'm generally quite sensitive to noise during the day too though - but I have been able to fall asleep without earplugs for the past year. If I wake up, it could take a few mins to fall asleep if I'm lucky or possibly 30+ mins. I try to be calm and think of something nice instead of getting frustrated about losing sleep.

Hmm I'd say about 8 hours asleep is normal for me, I sometimes sleep longer on weekends and have 9-10 hours but try not to do this as it makes it really hard to get to sleep at a sensible time in the evening. Part of the problem seems to be that my preferred sleep hours + awake hours don't want to fit into a 24 hour cycle. If I get 8 hours sleep, I should be sleepy after 16 hours awake but I'm not. I can feel very tired but not sleepy. I know how ridiculous that sounds.

@Miss Emerita - my GP knows about the joint pain as they've had me seen by a physio. The blood test consisted of Serum TSH, Vitamin B12, Folate, Ferritin and Full Blood Count - all normal. I wasn't aware of the type of test you've mentioned - reading about it now, my GP has been quite good so I think they'd be open to doing other tests. I would have to clarify about feeling drained rather than sleepy and the long recovery as I'm not sure if that would have been clear in previous consultations.

Here is another suggestion motivated by comments that follow: Zoom in on your Flow Rate curve so as to cause each single breath to be resized to about a one inch (2.5 cm) square. Scroll through a few nights of sleep while quickly noticing the following things, particularly the deformities in the inspiratory flow rate (FR) peaks: out of round tips, frequencies of most prominent deformities, the association of them with and before your bursts of several large amplitude recovery-like breaths (markers of SA or CoA instances?).

If peaks of your inspiratory breaths are well rounded like those of a sine wave (as in OSCAR logo) then what I write below probably does not apply to you at all. If you see, for one example, numbers of M-shaped FR peaks this post may be helpful.

Without discounting any helpful suggestion offered earlier, I chip in with my 2 cents and limited understanding as I focus on inspiratory flow limited breathing (IFL) which might explain your fragmented sleep (the sleep maintentance insomnia pugsy mentioned).

You mention flow limits and Pes for good reason in my view. Lacking Pes, I expect the upcoming WatchPAT test (i.e., a PAT) will again detect your cortical (CoA) arousals. But what if the nasal cannula (NC) test missed/misses all respiratory arousals in tagging all arousals as spontaneous? It's doubtful, but may bear consideration.

I refer to your test showing a high index for spontaneous arousals (SA). I understand the NC signal can reveal respiratory arousals (RA) nearly as well as the gold standard EEG test does. But all signaling variations in any test must always meet (rise to) threshold detectability values for detector, interpretive algorithm, medical and insurance recognition. You may generate an insufficient signal of distress, be a statistical outlier.

My thought is you, a weight lifter, may "power through" steadily enough in your breathing airflow to attenuate and mask/hide disturbances in a low variation signal to the cannula. Conjecture: Your IFL restricted breathing, if applicable, could have a nearly constant cyclical but misshapen flow rate curve, such that your continuous sleep effort may simply trigger frequent, minimally marked and therefore undetected CoAs--the frequent "tripping of your autonomic circuit breaker" in your complex CNS-physiological system.

Suffice to say, my guess is that you, like many with low AHI but unrestful, sleep are continuously doing a lot of work (e.g., work = force x displacement) in breathing when asleep. As others explain, it's like you are trying to breathe through a straw. Pes, as you know, is the gold standard tool for assessing that.

The whole area of flow limited breathing (deformed inspiratory peaks, particularly) has had increasing levels of research and sleep specialist attention. I have posted, here or elsewhere, several links to references on the subject, including a link to a 2018 patent application for ResMed's recent approach toward automating the detection and measurement, as well as likely future scoring, of flow limits. Such would help identify RERA, help sleep MD's and their patients with UARS, and could eventually enable broadened insurance coverage for flow limited breathing.

Regarding the AirCurve. I bought a low hour used one out of pocket (for <$400) through a well known ebay-like organization when I saw far too much continuous flow limitation remained while using my AutoSet. It dramatically reduced the FL, but I still have lots of arousals (well...5/hr. or, occasionally, upward) amid my markedly deformed inspiratory flow rate peaks. Many thanks to the AutoSet and MD who prescribed it and to the sleep forums; I benefit from an AHI drop from the 50's to 0.2 for the past year. OSA is effectively treated, yet substantial IFL remains and I keep chewing on that bone.

Here's wishing you success: finding your way to restful sleep.

Here is another suggestion motivated by comments that follow: Zoom in on your Flow Rate curve so as to cause each single breath to be resized to about a one inch (2.5 cm) square. Scroll through a few nights of sleep while quickly noticing the following things, particularly the deformities in the inspiratory flow rate (FR) peaks: out of round tips, frequencies of most prominent deformities, the association of them with and before your bursts of several large amplitude recovery-like breaths (markers of SA or CoA instances?).

If peaks of your inspiratory breaths are well rounded like those of a sine wave (as in OSCAR logo) then what I write below probably does not apply to you at all. If you see, for one example, numbers of M-shaped FR peaks this post may be helpful.

Without discounting any helpful suggestion offered earlier, I chip in with my 2 cents and limited understanding as I focus on inspiratory flow limited breathing (IFL) which might explain your fragmented sleep (the sleep maintentance insomnia pugsy mentioned).

You mention flow limits and Pes for good reason in my view. Lacking Pes, I expect the upcoming WatchPAT test (i.e., a PAT) will again detect your cortical (CoA) arousals. But what if the nasal cannula (NC) test missed/misses all respiratory arousals in tagging all arousals as spontaneous? It's doubtful, but may bear consideration.

I refer to your test showing a high index for spontaneous arousals (SA). I understand the NC signal can reveal respiratory arousals (RA) nearly as well as the gold standard EEG test does. But all signaling variations in any test must always meet (rise to) threshold detectability values for detector, interpretive algorithm, medical and insurance recognition. You may generate an insufficient signal of distress, be a statistical outlier.

My thought is you, a weight lifter, may "power through" steadily enough in your breathing airflow to attenuate and mask/hide disturbances in a low variation signal to the cannula. Conjecture: Your IFL restricted breathing, if applicable, could have a nearly constant cyclical but misshapen flow rate curve, such that your continuous sleep effort may simply trigger frequent, minimally marked and therefore undetected CoAs--the frequent "tripping of your autonomic circuit breaker" in your complex CNS-physiological system.

Suffice to say, my guess is that you, like many with low AHI but unrestful, sleep are continuously doing a lot of work (e.g., work = force x displacement) in breathing when asleep. As others explain, it's like you are trying to breathe through a straw. Pes, as you know, is the gold standard tool for assessing that.

The whole area of flow limited breathing (deformed inspiratory peaks, particularly) has had increasing levels of research and sleep specialist attention. I have posted, here or elsewhere, several links to references on the subject, including a link to a 2018 patent application for ResMed's recent approach toward automating the detection and measurement, as well as likely future scoring, of flow limits. Such would help identify RERA, help sleep MD's and their patients with UARS, and could eventually enable broadened insurance coverage for flow limited breathing.

Regarding the AirCurve. I bought a low hour used one out of pocket (for <$400) through a well known ebay-like organization when I saw far too much continuous flow limitation remained while using my AutoSet. It dramatically reduced the FL, but I still have lots of arousals (well...5/hr. or, occasionally, upward) amid my markedly deformed inspiratory flow rate peaks. Many thanks to the AutoSet and MD who prescribed it and to the sleep forums; I benefit from an AHI drop from the 50's to 0.2 for the past year. OSA is effectively treated, yet substantial IFL remains and I keep chewing on that bone.

Here's wishing you success: finding your way to restful sleep.

Here is another suggestion motivated by comments that follow: Zoom in on your Flow Rate (FR) curve so as to cause each single breath to be resized to about a one inch (2.5 cm) square. Scroll through a few nights of sleep while quickly noticing the following things, particularly the deformities in the inspiratory flow rate (FR) peaks: out of round tips, frequencies of most prominent deformities, the association of them with and before your bursts of several large amplitude recovery-like breaths (many of your FR markers of spontaneous (SA) or cortical (CoA) arousal instances?).

If peaks of your inspiratory breaths are well rounded like those of a sine wave (as in OSCAR logo) then what I write below probably does not apply to you at all. If you see, for one example, numbers of M-shaped FR peaks this post may be helpful.

Without discounting any helpful suggestion offered earlier, I chip in with my 2 cents and limited understanding as I focus on inspiratory flow limited breathing (IFL) which might explain your fragmented sleep (the sleep maintentance insomnia pugsy mentioned).

You mention flow limits and Pes for good reason in my view. Lacking Pes, I expect the upcoming WatchPAT test (i.e., a PAT) will again detect your CoA. But what if the nasal cannula (NC) test missed/misses all respiratory arousals in tagging all arousals as spontaneous? It's doubtful, but may bear consideration.

I refer to your test showing a high index for SA. I understand the NC signal can reveal respiratory arousals (RA) nearly as well as the gold standard EEG test does. But all signaling variations in any test must always meet (rise to) threshold detectability values for detector, interpretive algorithm, medical and, ultimately, insurance coverage recognition. You may generate an insufficient signal of distress, be a statistical outlier.

My thought is you, a weight lifter, may "power through" steadily enough in your breathing airflow to attenuate and mask or hide disturbances in a low pressure-variation signal to the cannula. A conjecture: Your IFL restricted breathing, if applicable, could have nearly constant cyclical but repeatedly misshapen FR curve peaks, such that your continuous sleep effort may simply trigger frequent CoA, but with minimally marked pressure changes and, therefore, undetected RAs--a frequent "tripping of your autonomic circuit breaker" in your complex CNS-physiological system.

Suffice to say, my guess is that you, like many with low AHI but unrestful, sleep are continuously doing a lot of work (e.g., work = force x displacement) in breathing when asleep. As others explain, it's like you are trying to breathe through a straw. Pes, as you know, is the gold standard tool for assessing that.

The whole area of flow limited breathing (deformed inspiratory peaks, particularly) has had increasing levels of research and sleep specialist attention. I have posted, here or elsewhere, several links to references on the subject, including a link to a 2018 patent application for ResMed's recent approach toward automating the detection and measurement, as well as likely future scoring, of flow limits. Such would help identify RERA, help sleep MD's and their patients with UARS, and could eventually enable broadened insurance coverage for flow limited breathing.

Regarding the AirCurve. I bought a low hour used one out of pocket (for <$400) through a well known ebay-like organization when I saw far too much continuous flow limitation remained while using my AutoSet. It dramatically reduced the FL, but I still have lots of arousals (well...5/hr. or, occasionally, upward) amid my markedly deformed inspiratory flow rate peaks. Many thanks to the AutoSet and MD who prescribed it and to the sleep forums; I benefit from an AHI drop from the 50's to 0.2 for the past year. OSA is effectively treated, yet substantial IFL remains and I keep chewing on that bone.

Here's wishing you success: finding your way to restful sleep.

All readers and advisors: Please accept this apology for my inadvertent triple posting. I thought I was doing edits before submission. I see no way to delete all but the latest post I considered ready.

ASB

Hi AmSleepnBetta - thank you for taking the time to post a detailed and very informative reply. My WatchPAT kit is arriving today and I will do the study tomorrow night - will get the data in the morning as it's auto-analysed on zzzPAT software. I'm only going to buy the Aircurve machine if there is some RDI showing on the report from that - if I do get it, I will put aside some time to learn about interpreting the Oscar data as I've got a lot to learn.

Am I right in thinking the Aircurve VAuto will respond to and report on flow limitations but only in Auto mode?

The second NHS sleep test wasn't scored for spontaneous arousals, RERA, flow limitations or RDI - only AHI where hypopneas were scored at 50% flow reduction not 30% - so I feel like I'm missing potentially useful info. I don't think I can get access to the raw data from that. I will request it but not sure how that would work with obtaining the data and what software I'd need to open it on.

It sounds like it's quite hard to effectively treat flow limitations / RERAs with any PAP device but doable with time and patience?

picassobaby wrote: ↑

Tue Nov 03, 2020 9:11 am

Am I right in thinking the Aircurve VAuto will respond to and report on flow limitations but only in Auto mode?

ResMed machine will report flow limitations in either fixed or auto mode but they can only respond in auto mode.
Obviously to be able to respond the machine needs the ability to move or change.
But in terms of recording with ResMed machines...Flow limitation recording isn't limited to auto mode.

Now Respironics machines...different story in fixed mode...no recording and of course no responding. I mention this for informative value for Respironics machine users.

@Pusgy - that's good to know. I had seen some dreamstation auto bipap S for sale on UK websites but it was quite expensive and if it can't report FLs that might be less useful for me.

My "WatchPAT" arrived today but I opened the box and it's someone else's cpap mask! So it might be a few more days before I get the study but I have asked the company I can amend my order to include 2 more disposable probes as it's only £93 more and I'd get 3 nights data instead of 1 as I know sleep can vary a lot from night tonight so I want to get a better overall picture.

Yeesh! I think they should comp you those probes, considering their error!

Oh I'd never expect anything free just for an honest error, and they're offering it for a fair price (can't seem to get it anywhere else in the UK) - just hope they send my study out soon! Not sure how much a watchpat device costs to buy but I hope it's not been lost in the post system