Long time CPAP user still fatigued

[enigmatic]

   
   


Tried bumping EPR to 3 and up pressure a bit. Thought EPR lift and pressure might increase tidal volume (it did not). Extremely fragmented sleep, nightmares, and tired. Will go back to EPR 2. Nose was burning and tingling (feeling like you want to sneeze), have sensation high air in pressure etc. just too high for comfort I think. Sp02 range also dropped relative to recent ranges (was >=95, here near 92). CAs in snapshot and larger sP02 drop occur during REM.

My tidal volume is up with newer machine at 420 median. I'm still not understanding something, if my median is 420 and my ideal range is about 450 to 600, is it that bad to have 420 median which is below that range? I see other posts with people saying 400 ish is fine (for males). Do people find like 90% of their tidal vol range occurring within the range of their ideal tv range? Also, I find it interesting that the range has no relationship at all to weight (only height), so when they tell you lose weight, it doesn't affect range at all. Still internally debating if ASV will be enough to lift tv to normal range (or improve reasonably well at least), or really need VAP type machine, or if APAP just needs fine tuning. I want to understand before I go into any doctors, so I don't just take a guess on what machine I should need. Really getting worried about going to a dr. that doesn't look deeply into numbers (AHI fine, etc.. or try this or that).

BTW- to be clear, pressure needs to go up with EPR 1:1 so if EPR is 1 pressure min/max needs to go up 1, 3 up 3, etc.. relative to no EPR, yes?

Even with better tidal vol, still get very tired during day too.

[Jay51]

Thank you for posting those enigmatic.  EPR is subtracted from your EPAP.  4 is the minimum EPAP on most machines.  If EPR is 1, then pressure has to be at least 5 or greater.  If EPR is 2, then pressure needs to be at least 6 or greater.  Same for EPR 3 - pressure needs to be at least 7 or greater.  

I commend you on your experiments on trying to figure this out.  I would not make a hasty decision either.  Your question about tidal volume being 420 median:  tough question IMO.  Usually, the higher you can get your tidal volume, then the better your SPO2 will be.  But not necessarily if you have some type of lung disfunction, etc.  420 is close to 500.  And you are correct.  I think the same way you are on this because the charts for this only take height into consideration and don't figure in weight.  I think they do that to try to figure out the individual's own particular lung volume.  I guess they did research and found that people of say, "x" height had a lung volume of "Y" consistently during their testing and research.  Height only determines tidal volume to them I guess.  

If I were you, I would base it on 2 things:  1.  How you are feeling after waking up from sleep at night.  And 2.  How your SPO2 numbers are to you.  Are they ok with you now or do you want to improve them more?  I see lots of drops during the night, but not too terribly low (nothing usually below 90).  Kind of on the border IMO.

[enigmatic]

Thanks Jay51, really appreciate all your input (others also).

Yes, looks like we are on same page, EPR. min allowable pressure is 4, so if EPR 1 and pressure 4, must lift pressure to 5. Same way of saying 1:1 EPR level - Pressure_lift_require with constraint of min pressure 4 after adjusted for EPR. Always just add in EPR level to pressure range without ,as long as new adjusted pressure value minus epr level exceeds 4.

My SpO2 is surprisingly good last few nights (except only last night experiment).  It's been >=95 most nights (sleep quality not so good) I've monitored. That's what makes me wonder more about the hypoventilation concern. I had thought about getting a spirometer to measure tidal volume, but don't see a direct way to get it (they give PEF, FEV, etc...). And also, tidal volume is likely higher in daytime non sleep, so not even sure that's a valid test. And no way to measure CO2 at home, I know of. But the one thing I know is when my symptoms were the worst was over the period of the bad motor and tidal volumes extremely low (like 200-300) for three months.I feel like I'm trying to overcome the bad pressure/tv etc kind of like the bends (just my own rationalization) with new apap.

The really good news is blood pressure starting to come back closer to normal after new machine and diet (about a week lost few pounds).
Primary physician said lungs sound great. 

Really wish there was some kind of database with normal tidal volumes overnight. Just not enough info to draw conclusions, and worried specialist won't know or care.

[Bhante]

During wakefulness tidal volume is interrelated with relaxation and breath rate. NOTE: I'm talking about wakefulness here; we can speculate on the differences during sleep but it is only speculation. Tidal volume on its own means nothing - it has to be combined with breath rate to have any meaning. As far as oxygen intake is concerned, increased tidal volume is naturally compensated for by lower breathing rate, and vice-versa. According to nature, long deep breathing is the natural state - and is the best for health and optimal oxygen intake - but in the modern world that has been reversed by unnatural lifestyle so that the "norm" today is short shallow breathing - which directly causes ill-health, stress and both mental and physical disease.

By increasing tidal volume breath rate decreases, relaxation increases, and in certain circumstances (depending on the type of breathing) it is a positive feedback loop, with deeper breath (tidal volume) causing slower longer breaths and greater relaxation, which in turn causes deeper breath. Basicly this occurs when the breathing is using both rib movement and diaphragm movement (actually it is more complicated than that). Concommitent with that the mental concentration is very high, the mind is very alert, and the body is very relaxed (perfect for meditation). I repeat - I am talking specifically about wakeful breathing here. With a different type of breathing - essentially mainly diaphragm movement - when tidal volume is high (and slightly hyperventilating) this also increases relaxation, but also directly causes sleepiness (in contrast to the above condition which increases mental alertness) - therefore if you want to get to sleep quickly, breath extra deeply with mainly diaphragm movement (it really works! Anyway that is an aside). My point is that - as far as wakefulness is concerned - the ideal is high tidal volume and low breath rate. Maybe that also applies during sleep, but that is speculation as there are additional factors that apply. Certainly I would expect different tidal volumes to be likely in different sleep phases (especially REM/non-REM). When you first try to sleep your breathing rate is higher and tidal volume is possibly also higher - you are still alert, and the physiological needs of the body for oxygen are higher (higher metabolic rate). As you get more prepared for sleep you should be more relaxed, which means your metabolic rate is lower, breathing is likely to be slower and more gentle. If you want to compare tidal volume with SpO2 you need to relate it to breathing rate, otherwise you are confounding two variables. As long as you are neither hyperventilating nor hypoventilating - other things being equal - tidal volume and breathing rate are inversely related. But the third variable is metabolic rate - as you get more relaxed (whether with increasing alertness or increasing sleepiness - see above!) the metabolic rate decreases and oxygen needs decrease. The fourth variable is sleep stage (including wakefulness considered as stage 0) - here I am much less qualified, but for example it is known that during REM sleep oxygen consumption is supposed to be much higher.

[Bhante]

Tried bumping EPR to 3 and up pressure a bit. ... Nose was burning and tingling

You might be able to compensate for the nose burning and tingling somewhat with increase in humidity. But then, I am not a fan of EPR, especially Resmed EPR - we seem to be on the same wavelength on that! I disabled EPR on my Resmed A10 years ago and never went back, it was definitely the best move for me.

[Bhante]

I'm starting to strongly believe it is hypoventilation. ... it looks like the best solution to control tidal volume is iVAP. ... ASV ... [and other posts related to costs of ASV]

I have just got a Ventmed VM8 from China. I got it online from a popular Chinese online vendor ... shouldn't be difficult to guess. Search for Ventmed VM8. I've just been using it for about a week, and the jury is most definitely still out, but it looks at least intreaguing. There are definitely some problems with the representation of data on the Ventmed, as far as sleep data is concerned. All (the very few, actually virtually zero) other references to ventmed on this board have also referenced that. I'd really like to see it on OSCAR. But interestingly I feel much better using the Ventmed than the Resmed - less tired, less foggy, and need somewhat less sleep. 

So far I am using only APAP, but the machine is also capable of APCV, as well as numerous BiPAP modes. I did try the APCV a little during short naps the first couple of days, but since I found the APAP mode so much better than the Resmed and since I don't know how to set the APCV parameters yet (especially since I couldn't access the detailed sleep data at all until 2 days ago), it made sense to get used to that first. I will definitely experiment further with the APCV later, and that might interest you also. I might have something in common with you regarding the possibility of hypoventilation, but it is too early to say. 

As I say, the jury is still out on the Ventmed, I need more experience with it, but despite doubts about the recorded data I feel a lot better with it than the Resmed ... and what did it cost me?    [... drum roll ...]   US$585 including delivery from China by Federal Express (actually it was supposed to be a very slow delivery option, but after payment the vendor (seems to be manufacturer direct agent) unilaterally changed the delivery mode to FEDEX at no extra expense).

Earlier I was also looking for ASV, but judging from Jay51's interesting comments it seems to me APCV may be much better for me - and perhaps also you - than ASV. Can you comment on APCV mode in relation to your earlier comments, Jay51?

[Jay51]

Thank you for posting that Bhante.  This is new to me.  I just tried to do some research on it online.  These are the main summary ideas:

 BiPAP Machine for Lung Diseases

Indications: Hypoxemia / sleepiness, sleepiness / central apnea, CSA (Central sleep apnea), MSA (mixed sleep apnea), Patients with lung diseases (chronic obstructive pulmonary disease, chronic Obstructive pulmonary disease). Moderate to mild respiratory failure, pulmonary function, respiratory insufficiency, severe sleep respiratory syndrome. The APCV mode is particularly suitable for critically ill patients with shallow breathing (fast breathing rate) and low tidal volume.

aPCV

Assisted Pressure Control Ventilation

The aPCV mode is used for assisted pressure control ventilation at a fixed mandatory ventilation rate. In case of spontaneous respiration, the patient has the possibility of increasing the rate and consequently the minute volume. If the patient displays a spontaneous respiratory effort within a specified time slot of the expiration, the mandatory mechanical breath is synchronized with the patient's respiration.

The time slot or trigger time slot can be set as a % of the expiratory time (Te) before the next anticipated mandatory mechanical breath. If the patient displays a spontaneous respiratory effort outside of the set trigger time slot, no mandatory mechanical breath is triggered.
The following ventilation parameters can be set:
pInsp: Inspiratory pressure in mbar
Freq.: Ventilation rate in 1/min
PEEP: Positive end-expiratory pressure in mbar
pMax: Maximum inspiratory pressure in mbar
InTr: Inspiratory trigger
I:E: Inspiratory-expiratory time ratio

The aPCV mode is included with MEDUMAT Transport and is available for MEDUMAT Standard² as part of the pressure-controlled ventilation modes option.

It seems close to IVAPS, but it also has a trigger setting and I:E ratio.  It looks like it has some flexibility and adaptability like the ASV also (unlike the rigid ST).  This could be a newer and better version of IVAPS.  I am not sure.  Looks better than ASV because it has more controls (ASV is prescribed for patients with severe Central Apnea in the absence of any pulmonary diseases, etc.)  

Any thoughts on this Sleeprider?  Red?  Gideon?  Dave(Sarcastic)?  Or anyone else?  Since this is a very new technology, please keep us updated on how this is working for you (and any charts or graphs or settings you can upload).  This could be an option for you Enigmatic.  Seems very new, and like Bhante said, "The jury is still out."  

[enigmatic]

   

Bhante pid='488686' dateline='1696690460']- therefore if you want to get to sleep quickly, breath extra deeply with mainly diaphragm movement (it really works! Anyway that is an aside).

Thanks for all the feedback.

100% agree with the deep breaths. Apple has a program called mindfulness that showed me I can breathe even deeper both inhale and exhale. It is the single greatest method to put me to sleep quickly, just doing extremely deep exhale and inhales.

The thing that appeals to me most about VAPS is you can clearly target tidal volume and ranges (as I understand it). And that seems to be the one metric that is so off on my personal data (then again, hard to say what really is normal at night as there's a dearth of public data). I don't think any of the other machines mentioned really directly address that. What doesn't appeal is high cost and other potential problems (like lung problems) that could surface if it really isn't what I need.

I really stuck close to the tidal volume/hypoventilation hypothesis, because of the symptoms I had that mirrored it (daytime tiredness, lethargy, etc...) and super low tidal volume of a third party replacement motor. Dr. Made a good point, which is (if you suspect hypoventilation) you can check CO2 with standard blood test/panel and mine was in normal range before I changed the motor. Didn't test since.

He's really pushing ASV, unfortunately I have to put a huge down payment, making it a waste if it does nothing (I have no CAs in overnight study). I looked up these devices online and one vendor said the manufacturer 
discontinued resmed aircurve 10 ASV. I asked why they still show it on resmed site. Don't even know which online vendors to believe and not easy to find the devices at all. 

I can very clearly see (and you can too on my charts posted) my SpO2 drops in REM as does tidal volume.
Pretty sure I've seen literature support this as well.
The more I look at ideal tidal volume numbers I find them really odd, because the calculations are based on very ideal body weights, most older people are way above those weights, so how should we shift expected tidal volume. Very little literature out there with empirical data for comparisons.

That makes me think also, does anyone know what a hypoventilation and or hyperventilation characteristic might look like on flow rate signals? (ranges too).  That would be another useful piece of evidence, but I can't find many examples.
I'm intuitively thinking very slow frequencies correlate to hypo while fast correlates to hyper,  normal obviously somewhere inbetween.

Below figures are the extreme tidal volume changes after I changed my motor late june. It came back up again with new resmed. I'm getting leery of small manufacturers like you suggested for this very reason. That motor was not properly calibrated in my opinion and could have caused severe health damage if I didn't figure it out. The machine felt fine but my sympotms soared in severity, it was only after months of torture that I figured out what happened.

[SarcasticDave94]

You're referring to APCV or with ResMed Astral it's P(A)CV. The Astral is the biggest Ventilator gun for home use. I think that Respironics Trilogy and Trilogy Evo are more or less similar, not to reflect specifics as I've not dug into the Trilogy series.

I don't know much about the P(A)CV mode as I've been learning heavy towards AVAPS/iVAPS.

I'll post a series of clinical page screenshots for the modes and particulars on the Astral 150 modes, including P(A)CV.

Hope it helps. Never used it, yet, but if/when I do I'll know more than now. This Astral 150 is the one I've been trying to get for a while.

   

   

Next post, 2 more...

[SarcasticDave94]

Numbers 3 and 4 on P(A)CV...

   

   

Note that the P(A)CV mode is supposed to be with the mouthpiece or the single limb circuit with expiratory valve. It might work with double limb as well but not sure.