Repeated spo2 plunges with sleep onset....UK user

[chrisj]

Hi,

This is my first post on this forum, so hello and please go easy on me

A bit of background:- I'm 42 y/o male, 200lbs/6'2", non-smoker, non-drinker with no known respiratory illnesses (asthma / copd etc) but after many years of suffering recently got a preliminary diagnosis of sleep apnea. My daytime spo2 levels are normal at around 96-97 basal, however I suffer significant repeated desats at night (example attached) and have had serious problems with mostly excessive daytime sleepiness / extreme fatigue for many years now.

Home testing showed repeated and significant spo2 desats, and after an initial trial with APAP it became apparent most of these were caused by a mix of OSAs, CAs and Hypopneas. I also tried BiPap (many different settings) but this could not keep my AHI down below about 8-10 and my yo-yoing spo2 levels continued.

Fortunately I had an opportunity to acquire a DreamStation ASV and the difference was dramatic - my AHI is normally now below 1 now with minimal events and a relatively good overnight basal spo2 (my settings min EPAP 6, min PS 4, max's unrestricted and auto backup rate / no flex). However, I still seem to have these significant desaturations which appear to almost always happen at sleep onset, when my flow rate goes right down (along with my minute vent) and often the machine kicks in with a backup rate resulting in clusters of machine triggered breaths.

After using the Dreamstation for a few weeks and making this same observation nightly, I decided to purchase a refurb'd resmed s9 adapt asv to see if the different protocol (targeting minute vent instead of peak flow) would make any difference - I needed a backup machine anyway so it's useful to have onhand. While the Resmed certainly seems more comfortable to sleep with due to the more natural breathing (vs. the square wave the DS tends to make the user follow), it still doesn't control these spo2 plunges presumably as they happen slowly enough to fool the 3 minute sliding window into believing I'm getting the minute vent I need to maintain a decent oxygen saturation. Often my o2 drops into the high 80's, despite having no mask leaks and no known positional apnea (I've tried with a soft cervical collar also, and various devices to avoid sleeping supine).

Does anyone have any idea what might be causing this and how I could possibly attempt to address it? My o2 levels (recorded using hospital grade pulse oximetry) seem pretty good when they settle, but I keep having these plunges mostly at sleep onset which sometimes happen gradually over a period of up to 20 mins or so.

I've not been fortunate enough to have a successful sleep study yet and it's increasingly hard due to covid - currrently I'm told it could be another 18 months before they can fit me in for this so I'm left to try and get the best efficacy out of my treatment I can by educating myself and consulting people who have far more experience than I do!

I've attached below the output from OSCAR for last night, one image showing the whole night where you can see the spo2 drops, and another a closer view of the first drop at initial sleep onset (note the flow rate reduction and target minute vent going slowly down with the moving window to essentially what's too low for me to maintain ideal sats). These first two images are when using the ResMed S9 VPAP Adapt SV.

For comparison, the third picture is using the Dreamstation AutoSV with the same settings - note how the flow rate is much more consistent across the night but the spo2 drops still occur.

Thanks so much in advance for any advice!

Chris

spo2_drop_sleep_onset.JPG (933.21 KiB) Viewed 1490 times

spo2_drop_repeats.JPG (839.09 KiB) Viewed 1490 times

spo2_drops_Dreamstation.JPG (814.25 KiB) Viewed 1490 times

[Julie]

Curious whether your GP has done other testing (e.g. cardiac) for other possibilities apart from apnea.

[raisedfist]

None of your SpO2 graphs show anything below 90%, and if it's in the high 80's for very brief periods of time, it's possible it's just an artifact/loss of good contact from the finger probe. Would need to see an SpO2 graph with dips into the 80's to say much more.

[Thumper1947]

chrisj,
First, I'm not one of the experts here on the forum. Your charts look a little similiar to mone, only mine look somewhat worse. I get decent AHI scores, but I often have periods of very shallow breathing.I am attaching a link to a video of something I believe explains what is happening to me, and I can't tell for sure because the pictures you posted need to be zoomed in, but it looks similar to mine. I use the Wellue ring to monitor O2 drops. Fortunately, that is not a big problem for me, and I believe the shallow breathing is due to nasal restriction due to allergies, a thin nose thats been broken twice, and one deviated septum operation that I don't think worked. Anyway, here's the link by Jason from freecpapadvice.com.
https://www.youtube.com/watch?v=ifbKJpq7w5E
Thumper

[chrisj]

Curious whether your GP has done other testing (e.g. cardiac) for other possibilities apart from apnea.

Hi Julie,

I actually had an ECG only two weeks ago which showed my heart to be in very good general health. My spirometry is also normal and my heart responds properly to exercise so don't think that's a concern. I am booked in for a chest xray too but don't expect it to show anything...

[chrisj]

None of your SpO2 graphs show anything below 90%, and if it's in the high 80's for very brief periods of time, it's possible it's just an artifact/loss of good contact from the finger probe. Would need to see an SpO2 graph with dips into the 80's to say much more.

Hi Raisedfist,

Definitely not artifacting, was the first thing I set about to rule out. I use a Masimo Radical 7 with adhesive finger sensors and high perfusion index (confidence) reading all night - these are about as accurate as it gets and the adhesive sensors are specifically the best for sleep studies. I've also done these tests with two independent pulse oximetry devices simultaneously (one on each hand ) and they both correlate. Also bare in mind these events take place over up to 20 mins.

In terms of the readings from these graphs, these are just the most recent - the drops often go into the 80s, they just didn't happen to that night. But the pattern is the same - big dips usually at sleep onset :-/

Thanks,
Chris

[chrisj]

chrisj,
First, I'm not one of the experts here on the forum. Your charts look a little similiar to mone, only mine look somewhat worse. I get decent AHI scores, but I often have periods of very shallow breathing.I am attaching a link to a video of something I believe explains what is happening to me, and I can't tell for sure because the pictures you posted need to be zoomed in, but it looks similar to mine. I use the Wellue ring to monitor O2 drops. Fortunately, that is not a big problem for me, and I believe the shallow breathing is due to nasal restriction due to allergies, a thin nose thats been broken twice, and one deviated septum operation that I don't think worked. Anyway, here's the link by Jason from freecpapadvice.com.
https://www.youtube.com/watch?v=ifbKJpq7w5E
Thumper

Hi Thumper,

I had a full ENT inspection a while back which found no obstructions. I'm a 'mouth breather' and do use a full face mask but I don't believe that's really related to this.

I've got the Wellvue ring too and am familiar with the ViHealth app (this is the pairing I started out with). I would say the readings I get from the ring are typically about 2% lower than the Masimo tells me though and that's the kind of thing they might use for hospital sleep studies.. that said the wellvue devices in my experience are very good for the price and generally read v. close to high end devices even with overnight movement.

I've watched quite a few of Jason's videos (they really helped with setting up the ASV) but not the one you sent yet... it's bedtime here in the UK but I'll watch it first thing in the morning when my brain is back in gear as I'm very curious to see if I'm in the same boat! Thanks for sending that over, will let you know I also posted this question on Jason's forums earlier today and have thought about maybe paying him to look over my data, but generally I think my graphs are OK aside from these weird periods of shallow breathing causing these dips :-/

Cheers,
Chris

[Julie]

If that's really your cat and not a You Tube one, my cat wants to meet him/her!

[greatunclebill]

asking your doctor for a prescription for an o2 concentrator until this is resolved is certainly appropriate for the situation if it is dropping below 88 or 89 for 6 minutes total time over the night. not sure of the exact numbers,

[chrisj]

If that's really your cat and not a You Tube one, my cat wants to meet him/her!

Hehe no, but mine are equally sleepy

[rick blaine]

Hi chrisj,

This may not be what you want to hear, but you did ask for "any advice". And this is going as easy as I can muster.

The thing I'm noticing most is what you don't say.

"Home testing showed ... " Who initiated that? And done under the direction/ supervision of whom?

"Preliminary diagnosis" – made by whom?

"After an initial trial with APAP" and "I also tried BiPap (many different settings)" and – for me, standing out especially – "Fortunately I had an opportunity to acquire a DreamStation ASV."

Who supplied the equipment for this and made it all possible?

Let me put it another way: you make no mention of the NHS, nor of this-or-that hospital department or consultant, nor of this-or-that sleep-medicine department. Nor do you mention any 'private' medical doctor.

Are you self-funding and self-directing your treatment? Is all of the above being done outside the NHS?

The reason I ask is that what occurs to me is this: if you are self-treating, you may have uninformed expectations of treatment.

If you have central sleep apnea, then the treatment you are on is working. A few de-sats here and there – and on the third chart you show, never below 91 – are not, IMHO, something to fret over. Maybe your ASV machine needs to kick in a bit sooner, but that is a small adjustment.

And if you are treating yourself, then you may have an misplaced idea of what is causing the "excessive sleepiness/ extreme fatigue" you mention. Not every case of daytime tiredness is down to sleep disturbance. (And I will say: you have worked really hard at reducing yours. So 'well done' on that.)

If your ECG shows "very good general health", then your GP and/ or some appropriate medical professional might check out if you have: low thyroid, low testosterone, any of the various kinds of anaemia, post-viral syndrome, metabolic syndrome, and hyper-ventilation syndrome – to name just a few.

That's my sixpence worth.

PS. If you are looking for a sleep study which is done in an overnight-stay sleep-lab, as opposed to the at-home kind, but the NHS can't offer one for "another 18 months", then such studies are available in the UK private sector. The cost is something like £1500.

[chrisj]

Hi Rick,

Honestly not a problem, tbh I expected such a comment almost word for word! . You need to bear in mind for me this has been a 20 year journey during which time I've ruled out much of what you've alluded to below. Trust me though to me every comment is worth far more than 6p

Don't get me wrong - I don't believe my expectations are unrealistic... I'm just trying to maximise the efficacy of the treatment until I can get a more thorough study. If anyone here such as yourself says there is no cause for alarm with the sats posted as they are, that's good enough for me. I'm aware of private sector sleep costs (my wife is a registered nurse who has worked for Spire and BUPA), and they are unfortunately preventative, namely as that would just be the tip of the iceberg. To give an idea, I've had 4 overnight stays at Southampton General hospital for just this prior to the pandemic and I didn't manage to sleep a wink for any of them.. if I start doing that privately the costs could snowball and being out of work due to covid I don't have a bottomless pocket As such, I'm at the mercy of the NHS and whatever treatment I can give myself for now while I wait what looks to be over a year...

The premliminary diagonsis is exactly that - given by two seperate GPs on the basis of my monitored spo2 levels, sleep stage monitoring via home equipment, and feedback from my partner regaring persistent breathing cessation at night. It's not a 'formal' diagnosis yet without the studies so I can't obtain prescriptive equipment on the NHS yet. In two decades I've also had almost every test under the sun to rule out other causes of my EDS (I scored very highly on ESS). I've been tested for almost all other (granted 'commonly') known issues of persistent fatigue - amemia, thyroid hormone production, vitamin levels, testosterone, dietry factors, post viral syndrome, fitness - all show I'm in generally 'excellent health'.

I have a Zeo sleep monitor which I used regularly to build an EEG profile of my sleep stages, and indeed this showed repeated arousals with very little deep sleep (I'm supposed to have 1-2 hours a night, typically I was only getting 15 mins if lucky, and waking dozens of times) - these correlated with my desats. The bottom line is my sleep is never restorative as I'm seriously oxygen deprived - granted, perhaps 10% of my sleepiness could be attributed to other causes, but the simple 'lack of sleep' is definitely the main one! The 'feeling' is that of oxygen starvation to the brain too - it's almost all concentration / brain fog / irritability... I don't really suffer too much on the physical side which I'm thankful for. Yes, there may be other factors contributing to my RERAs which only a RPSGT is likely to be able to diagnose, but that requires a full sleep study and I'm still waiting for that - I thought however I'd ask here first in case others had similar experiences.

In terms of equipment supply, there are plenty of refurbished self-titrating units available - but I've had to aquire these myself without script. And all giving excellent feedback via SleepyHead / OSCAR (which syncs with my zeo and spo2 / HR monitored data) which has helped tremendously along the way. I know it's extremely easy to criticise this approach (and I do so myself), but when you've suffered the way I have and are worried about serious health impliciations as well as the inability to get back to work to keep my house, there are very few options
Believe me, I haven't just jumped in without doing an decent amount of research at every step of the way and I do feel my resultant desats compared to what they were and how they've changed throughout my 'experiments' show I'm not far off doing things correctly... there's also no harm in collecting the data I am in order to present it to an RPSGT when I have the opportunity too. I could be waiting all this time just to have issues getting to sleep again at the next NHS study, it's so cruelly ironic!

That said, this is my main takeaway from your input:-

"If you have central sleep apnea, then the treatment you are on is working. A few de-sats here and there – and on the third chart you show, never below 91 – are not, IMHO, something to fret over. Maybe your ASV machine needs to kick in a bit sooner, but that is a small adjustment."


That's positive in my mind - it means it sounds like I'm doing enough to tide me over and keep me out of the 'danger zone' (i.e. generally above 88) until I can get a more accurate diagnosis and treatment. The question is though what adjustment? That's the sort of thing I've come here to try and learn in case someone else had a similar experience. Telling me that can't be known without a formal study is just as valid an opinion

As I understand it, the ony other thing a GP could do currently is possibly prescribe an oxygen concentrator to keep my levels out of the red while sleeping, but that would be an interim solution. It may be oxygen is indicated in addition to PAP/ASV therapy, but that's not for me to say yet.

Cheers,
Chris

Hi chrisj,

This may not be what you want to hear, but you did ask for "any advice". And this is going as easy as I can muster.

The thing I'm noticing most is what you don't say.

"Home testing showed ... " Who initiated that? And done under the direction/ supervision of whom?

"Preliminary diagnosis" – made by whom?

"After an initial trial with APAP" and "I also tried BiPap (many different settings)" and – for me, standing out especially – "Fortunately I had an opportunity to acquire a DreamStation ASV."

Who supplied the equipment for this and made it all possible?

Let me put it another way: you make no mention of the NHS, nor of this-or-that hospital department or consultant, nor of this-or-that sleep-medicine department. Nor do you mention any 'private' medical doctor.

Are you self-funding and self-directing your treatment? Is all of the above being done outside the NHS?

The reason I ask is that what occurs to me is this: if you are self-treating, you may have uninformed expectations of treatment.

If you have central sleep apnea, then the treatment you are on is working. A few de-sats here and there – and on the third chart you show, never below 91 – are not, IMHO, something to fret over. Maybe your ASV machine needs to kick in a bit sooner, but that is a small adjustment.

And if you are treating yourself, then you may have an misplaced idea of what is causing the "excessive sleepiness/ extreme fatigue" you mention. Not every case of daytime tiredness is down to sleep disturbance. (And I will say: you have worked really hard at reducing yours. So 'well done' on that.)

If your ECG shows "very good general health", then your GP and/ or some appropriate medical professional might check out if you have: low thyroid, low testosterone, any of the various kinds of anaemia, post-viral syndrome, metabolic syndrome, and hyper-ventilation syndrome – to name just a few.

That's my sixpence worth.

PS. If you are looking for a sleep study which is done in an overnight-stay sleep-lab, as opposed to the at-home kind, but the NHS can't offer one for "another 18 months", then such studies are available in the UK private sector. The cost is something like £1500.

[chrisj]

chrisj,
First, I'm not one of the experts here on the forum. Your charts look a little similiar to mone, only mine look somewhat worse. I get decent AHI scores, but I often have periods of very shallow breathing.I am attaching a link to a video of something I believe explains what is happening to me, and I can't tell for sure because the pictures you posted need to be zoomed in, but it looks similar to mine. I use the Wellue ring to monitor O2 drops. Fortunately, that is not a big problem for me, and I believe the shallow breathing is due to nasal restriction due to allergies, a thin nose thats been broken twice, and one deviated septum operation that I don't think worked. Anyway, here's the link by Jason from freecpapadvice.com.
https://www.youtube.com/watch?v=ifbKJpq7w5E
Thumper

Thanks Thumper,

I took a look at Jason's video (thanks for that byw!) and yes I do have prolonged periods of very shallow breathing I supposed could be defined as RERAs, though my oxygen desats a lot further than 3% during these events. My AHI reading last night as 0.0, but I certainly believe my RDI is a different story. It's food for thought though, I'll bring this up with my sleep technician when the opportunity presents itself

Chris

[Miss Emerita]

Chris, given that the O2 levels are not an issue, you might want to consider returning to the ResMed machine, which you found more comfortable.

If you haven't already, you might want to ask your doctor for blood tests to see whether you might have a connective tissue disease. (This is a category of autoimmune disease; fatigue is a common presenting symptom. Specific CTDs include rheumatoid arthritis, lupus, and scleroderma, but mixed or undifferentiated disease is common.)

I notice you spend 10 hours in bed. I'm sure that's because you're trying to piece together adequate sleep. (Been there myself.) But you might consider a reset to something like 9 hours, to see whether that helps you consolidate sleep to some extent. And on this general subject, you might look on the web for Cognitive Behavioral Therapy for insomnia (CBTi), which helps some people reduce night-time wake-ups.

And it never hurts to review the general advice for better sleep:

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Set a bedtime that is early enough for you to get at least 7 hours of sleep.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime.
• Reduce your fluid intake before bedtime.

It is so frustrating and debilitating to have chronic daytime sleepiness and fatigue. I really hope you'll experience improvement one way or another.

[raisedfist]

Have you trialed increasing your EPAP to 7? EPAP effects oxygenation, and your ventilation appears normal based on tidal volume.