Can hypopnea's make you feel like you're dying, etc...?

[Snoredog]

[quote="coconut"]Of course, writing with insufficient sleep. In reading my post above, it may be unclear what I was trying to say in one instance so let me rephrase:

The reason I think my big problem is struggling rather than desaturation is that even when the desaturations are controlled by a lower CPAP setting to never fall below optimal, I still feel like hell and have pain. It seems to require a much higher pressure to prevent the struggle for breath. This realization - that my pain-related damage is from that struggle itself - was an important insight.

I rather mangled the sentence in the post above where I tried to say that.

dj

[Snoredog]

[quote="coconut"]Hi and thanks for posting. I'll try to answer your questions.

RE: chest pains, yes, too bad those haven't gone away. FWIW they have been with me over a year and I think I may have done some damage, so I'm not expecting them to heal immediately. As I noted, I think I probably damaged my lungs a bit over the last year by fighting so hard to breathe. The pains are less now, except I may be coming down with a cold.

RE the CT scans, they didn't give me a report, the doctors simply said all was normal. If CPAP doesn't get me feeling better, I will revisit that but there have been many xrays and a couple of other lung scans too looked at by a number of doctors, so odds are no visible structural problems.

I've never smoked, don't drink. I keep my weight controlled except when I can't exercise due to some kind of metabolic problem that causes lactic acid buildup, currently being worked up for mitochondrial myopathy by UCSD. I also am required to have frequent small high-carb meals to prevent neurological problems of unknown cause; and by this I don't mean peanut butter cups, I mean cornstarch in water. Still, hard to keep weight down in that case so I look forward to sleeping more and better.

I'm not sure where you get periodontal disease from my description. My lost teeth were from a rigid dental appliance that bruised the nerve roots when I clenched my jaws at night and ultimately caused inflammation necessitating a series of root canals & a couple extractions. That is, one more symptom of the breathing problems.

My abdominal pains may or may not be related. I have a paralyzed GI tract and cannot eat solid food, and even so have many kinds of pain from it. Certainly if air gets forced down that won't help, and my stomach is inverted so I can reflux bile, which is not what you want in your lungs. Some of my damage may be from that, it certainly occurs. I take a heavy proton pump acid med, but of course it won't neutralize bile.

The 'night sweats' information is good; nobody told me that and I worked out for myself what it meant, which is why I'm on here and on CPAP again. I couldn't convince my HMO that the night sweats meant anything, they told me to use fewer blankets. Finally I just researched a bought a recording oximeter, which is how I have made it to this point, with logic.

In my case it is not the lack of oxy that seems to be the main problem, but the struggle against breathing. The oxy deficit doesn't drop low enough to be very physically harmful, but the frequent struggles and blood pressure spikes seem to be. Indeed, I feel just as bad using CPAP at a low pressure as when it's at higher pressure, even though the oximeter shows the desaturations controlled. I need to stop the traumatic fight, and I suspect that this will be recognized in the future as more important for some people than are the desaturations.

RE: "blaming everyone but myself", that's out of line. I can see by your number of posts that you're a senior poster here and I'm on your turf, and I do respect that. I also realize that in many cases people may whine about stuff. That is not my case and you shouldn't assume it, and particular shouldn't condescend. I have a dysfunctional HMO which is functionally incompetent in matters like this. I don't blame them for that, it would simply be stupid to rely upon them for something beyond their competence. Moreover, there is no 'blame' to be attached to me, either. I'm not some smoker who is bitching about stuff caused by his lifestyle; I'm a competent guy with a host of severe inborn medical problems being proactive instead of passive. I have used the machine every night; "compliance" is not an issue and I have the discipline to do whatever is necessary.

Again, thanks for taking the time to help. You are providing valuable information to many people, and as a longtime activist I respect that a lot, as well as appreciating your time givent to strangers.

[coconut]

Hi Snoredog, thanks for the post, you must be on here a lot.

To comment on your latest (and my latest thoughts since posting last)...

Last night I wore the recording oximeter while using a flat CPAP pressure of 13. Once I download that to the PC downstairs later today, the question of central apneas should be settled, since the meter samples oxy saturation every 2 seconds all night long. If there are no visible desats in the data I'll assume central apneas aren't being induced. Do you agree?

I perhaps should also note that headaches are not a problem for me and really haven't been. This is another reason I ad been using the dental appliance instead of the CPAP: I felt better while doing so, and the lack of headaches meant that I probably wasn't having damaging hypoxia at night. As a longtime former scuba diver, and a guy who has also experienced intentional anoxia in a hypobaric chamber in training for air force stuff years ago, I'm reasonably conscious of the physiologic and medical issues as well as how they "feel".

Thus, thinking the "mild apnea" was controlled (my HMO's description - they told me none of my described problems were linked to sleep apnea), there was no reason for me to use the CPAP. In fact, it would be accurate to say that I'm now trying CPAP against the advice of my doctors who believe I don't need it. Frankly, I'd much rather talk with an educated patient like yourself than a doctor who pretends to expertise he doesn't have.

I'm conscious of leak rates and have controlled for that. Also I need to deal with the fact that last night at 13, I woke a number of times with a desert-dry mouth and it's clear that despite the chinstrap, some air was escaping that way.

What I plan to try tonight is probably beyond what you would recommend, but you may have picked up that I am highly self-reliant when possible.

I have a "snorban" mouthpiece which I have just dipped in boiling water and molded to my current dental structure to advange my jaw somewhat, as well as providing a better air seal to aid the chinstrap at preventing mouth venting.

Inasmuch as this may also lessen the pressure needed to keep my airway open, I will go back to APAP at the previous range of 9-13 tonight and check the data to see whether it is similar to the 2 months of previous data or is markedly reduced. It would be nice if I could get relief at lower pressure levels, and in theory that might work. I will report back either way - and I'll note to others "kids don't try this at home".

I wouldn't be surprised if it knocks the necessary pressure down by 2cm. I'll be honest and report whether I'm right or wrong about that... the data shouldn't lie. Other than a slight risk of TMJ, there is no reason not to try it.

best

dj

[coconut]

Hi Snoredog...

my posts are lagging behind yours. My comments inserted below:

dude not meant to piss you off, but you need to listen to yourself you are a friggin train wreck and in the medical profession they give you the diagnosis of hypochondriac.

I'm not pissed, I was correcting you. Physically and mentally I am a train wreck. Anyone who has problems and doesn't remain passive will initially get tagged by incompetent doctors as hypochondriac. My problems have all proved to have an objective basis which is why I have some leeway now. My doctors have been proven incorrect so often, and I correct, that they now afford me more regard. There are a couple of excellent specialists I regard highly; the problem is that at my HMO they designate a "PCP" doctor who acts as a gatekeeper to ration services for each patient, and this can be deadly for those who need diagnostic attention. Those doctors get paid a bit of a bonus for keeping costs low and it has put me at odds with them at times. That's why I say "effectively dysfunctional"; they may be intelligent people but they have learned what is needed for themselves, and it is minimizing time spent, tests given, etc.

With every post you add a couple more disorders as you try to explain it away.

Um, seems like you have some issues you're projecting onto me. The reason it may seem to you that I'm adding more disorders is that there is no reason to subject this list to my full medical history; I have mentioned the other disorders as they have become relevant. Do you think gastroparesis is a joke? It's a severe condition which has been diagnosed by top people, as well as nearly killing me a number of times with near-fatal bleeds. It may require drastic surgery. Likewise, my legs and other muscles are somewhat paralyzed by what seems to be a metabolic disorder. You are out of your depth in commenting on that stuff. I seek help in CPAP expertise, not counseling.

Having inadequate treatment for OSA and being severely fatigued will cause symptoms of just about every thing you mentioned and then some. Instead of shooting everything with a shotgun you need to nail it with a rifle.

This strikes me as excellent advice, and it's one reason I am not letting them perform surgery on me as they wish to, to cut on my GI tract & other stuff. In other words, I want to rule out anything which may have another cause, and lack of sleep & lung damage from what is essentially decades of insufficiently treated apnea, could be causing some problems and worsening others.

If it was me I would start with addressing the OSA therapy, get that under control and probably half of those other disorders you mention will go away on their own.

They won't all go away, but the severity could well drop to better levels, and that is my hope and plan.

sorry but that is the way I see it.

dude, no need to be sorry. You're taking your time to help me and that makes you a stand-up guy. I'm in your debt for that alone, even if I do not succeed. Having no experience with me other than the way I write while in extreme sleep deficit, you have seemingly assumed I was a smoker who doesn't brush his teeth enough with a bunch of fantasy ailments. If only. But I think a LOT of stuff will improve if I get the apnea under control. You may think it sounds like whining to refer to incompetent doctors, but that's flat-out accurate.

We'll see how it goes.

thanks

dj

[Snoredog]

[quote="coconut"]Hi Snoredog, thanks for the post, you must be on here a lot.

To comment on your latest (and my latest thoughts since posting last)...

Last night I wore the recording oximeter while using a flat CPAP pressure of 13. Once I download that to the PC downstairs later today, the question of central apneas should be settled, since the meter samples oxy saturation every 2 seconds all night long. If there are no visible desats in the data I'll assume central apneas aren't being induced. Do you agree?

I perhaps should also note that headaches are not a problem for me and really haven't been. This is another reason I ad been using the dental appliance instead of the CPAP: I felt better while doing so, and the lack of headaches meant that I probably wasn't having damaging hypoxia at night. As a longtime former scuba diver, and a guy who has also experienced intentional anoxia in a hypobaric chamber in training for air force stuff years ago, I'm reasonably conscious of the physiologic and medical issues as well as how they "feel".

Thus, thinking the "mild apnea" was controlled (my HMO's description - they told me none of my described problems were linked to sleep apnea), there was no reason for me to use the CPAP. In fact, it would be accurate to say that I'm now trying CPAP against the advice of my doctors who believe I don't need it. Frankly, I'd much rather talk with an educated patient like yourself than a doctor who pretends to expertise he doesn't have.

I'm conscious of leak rates and have controlled for that. Also I need to deal with the fact that last night at 13, I woke a number of times with a desert-dry mouth and it's clear that despite the chinstrap, some air was escaping that way.

What I plan to try tonight is probably beyond what you would recommend, but you may have picked up that I am highly self-reliant when possible.

I have a "snorban" mouthpiece which I have just dipped in boiling water and molded to my current dental structure to advange my jaw somewhat, as well as providing a better air seal to aid the chinstrap at preventing mouth venting.

Inasmuch as this may also lessen the pressure needed to keep my airway open, I will go back to APAP at the previous range of 9-13 tonight and check the data to see whether it is similar to the 2 months of previous data or is markedly reduced. It would be nice if I could get relief at lower pressure levels, and in theory that might work. I will report back either way - and I'll note to others "kids don't try this at home".

I wouldn't be surprised if it knocks the necessary pressure down by 2cm. I'll be honest and report whether I'm right or wrong about that... the data shouldn't lie. Other than a slight risk of TMJ, there is no reason not to try it.

best

dj

[coconut]

If your pressure is too high and causing centrals (those centrals would show up on your EncorePro reports as "clusters" of apnea or OA. The machine cannot tell the difference between a 30 second obstructive apnea and a 30 second central apnea. To the machine they look the same, no air flow for 30 seconds.

IF the machine confuses that event for obstructive it will increase pressure even seen on the reports, so that 13 cm you seen may not even be needed. That is why I posted those Min & Max pressures, you should try that for 1 night and compare. If the machine is misreading you your AHI should lower.

In other words it doesn't matter if the machine is confusing the events or not, because if a lower pressure results in fewer CA's the AHI will fall and you have your answer. IF AHI increases over current settings, then you know those events are obstructive and you may need to increase the Minimum pressure beyond current levels.

Ah, excellent information, thanks and it makes sense. I tend to think that centrals are not the main problem because my lung pain is related to straining, but of course I'm not immune to centrals, and some of my muscle-paralysis stuff could specifically mean respiratory failure in my future, that's how a number of the muscle paralysis diseases eventually kill. So definitely I want to check for that.

CA's may not include lower SAO2 readings from your pulse oximeter as they could be short in duration but could still destroy your sleep architecture.

I sure believe that, since my sleep architecture is terrible on APAP. That's one thing the SPO2 meter shows... the spiking heart rate hundreds of times a night even with the SPO2 levels all OK.

If you have any of your past PSG's I would drag out a copy and re-read it carefully, OSA is only one aspect of poor sleep found and covered on a PSG, most doctors reading those reports only look at the OSA portion unless they have been trained to spot the other findings.

I'm not sure what a PSG is, if it's a report from a sleep study, I have never slept during one so there is no useful data. I have also never been able to consult with a doctor trained in sleep medicine. I'm trying to arrange that, maybe this week but it's kinda 3rd world medicine in Hawaii now, not many doctors working here and even fewer really good ones.

The point is you can fully address OSA events by getting your AHi down to zero and still feel like the walking dead due to microarousals and other parasommnias. You have to isolate that first by fully addressing the OSA (getting your AHI down close to 5 or what is normal), when you have that under control then you go back to the doctor and tell them your OSA is under control and you want to know what else left on the PSG could leave you fatigued such as spontaneous arousals, PLMD, RLS etc.

Walking dead - that's me today! Even with the machine saying my AHI is down to 2.4. But I'll also say what I am NOT having now that I'm using CPAP at >9cm pressure: I am not having nightmares, night sweats, new severe chest pain in the morning, or frequent wakings. My total sleep is insufficient at no more than 3 hrs/night, but that sleep is in one 'block' which I haven't had in a long time. So I count it as progress, and am determined to do all that's possible.

My suggestion is to rule out Central Apnea by trying the lower machine settings, if AHI jumps you know that has been ruled out. If AHI goes down you have your answer.

yes, that's now on my list to do.

I would also not rely so much on pulse oximeter that is only one tool and typically not very accurate, reason they don't allow it to be used alone in the diagnosis of OSA.

The oximeter paid for itself the first two nights I owned it: the first one using the dental appliance with a ton of desaturations and a heart graph like the san francisco earthquake on a seismograph and the second with APAP showing no desaturations but still fractured sleep in the heart rates. I agree it is not sufficient for diagnosis when used alone, but it's a hell of a good reality check and probably ought to be used to screen people, it's so noninvasive, just a clip on the finger. I'll be testing both of my brothers when they come to visit, and if they show desaturations they can take a printout to their doctors to get a sleep study. Objective printouts will at least get a doctor's attention.

In order to take advantage of that you would have to correlate its readings with what is happening on the EncorePro timeline to say look I had this cluster of apnea at therapy hour 3 and the pulse oximeter report shows a corresponding drop to SAO2. It just confirms you have OSA.

A recording oximeter is just one tool, but it's a nice one. For instance, it probably rules out severe central apneas, just not the little ones. It also shows a plot of heart rate which correlates well with arousals. In some ways it gives much more specific and time-accurate info than the CPAP machine does, and it's a good adjunct. If I hadn't bought it, I would still be relying on my doctors that apnea wasn't the problem and that the cure for night sweats is fewer blankets.

So respectfully I'd submit that for primary screening, not full diagnosis, that a recording oximeter is the best thing since sliced bread. It is non-invasive, cheap, and provides a lot of data in a very useful way. I'd recommend that anyone trying this kind of stuff get access to one... because there's stuff it COULD show which would NOT be shown by a CPAP machine which could be very important. And as a bonus you can screen your family and friends, it is a no-risk test.

dj

[Snoredog]

well good luck with that then.

[coconut]

and since you've taken the time to comment, here's last night's results...

APAP mode set 7.5-13 to see whether the slight jaw advancement lowered average pressure.

It seemingly did by about 1cm, but my vibratory snore index went 'way up and I feel like hell this morning. AHI showing at 2.1, but not relevant.... I simultaneously did the oxy meter and it shows that while saturation was fine, my heart rate averaged 12bpm over usual, and had hundreds of spikes up. In other words, bad dang sleep. The 'vibratory snore" was 'way up, which matches the elevated heart rates.

I have to conclude that the snorban mouthpiece maybe works to help the chinstrap prevent leaks, but doesn't really help lower the pressure needed. I will now move on to your suggestions, but it seems to me that since the pressure averaged 10 last nite, and I know that 13 will get rid of the snore and keep the heart rate low and pretty stable. So my CPAP pressure is gonna be over 10 for sure.

dj

[Snoredog]

[quote="coconut"]and since you've taken the time to comment, here's last night's results...

APAP mode set 7.5-13 to see whether the slight jaw advancement lowered average pressure.

It seemingly did by about 1cm, but my vibratory snore index went 'way up and I feel like hell this morning. AHI showing at 2.1, but not relevant.... I simultaneously did the oxy meter and it shows that while saturation was fine, my heart rate averaged 12bpm over usual, and had hundreds of spikes up. In other words, bad dang sleep. The 'vibratory snore" was 'way up, which matches the elevated heart rates.

I have to conclude that the snorban mouthpiece maybe works to help the chinstrap prevent leaks, but doesn't really help lower the pressure needed. I will now move on to your suggestions, but it seems to me that since the pressure averaged 10 last nite, and I know that 13 will get rid of the snore and keep the heart rate low and pretty stable. So my CPAP pressure is gonna be over 10 for sure.

dj

[coconut]

The apnea will come "suddenly" or slamp shut on inhale. The machine now has to dislodge that tongue, that is where the pressure should kick in and splint the airway.

So the theory goes, that if you eliminate all snoring that you will prevent the follow-on apnea (if that is the cause). You lowered Minimum pressure and snoring increased, that was to be expected for reason stated above.

Yes, I understand the theory and appreciate you pointing out the realities.

I have several things I wish to check and your suggestion is one of them. I decided to check last night on adding the jaw-advancing device, and lowered the min pressure to 7.5 just in case I could get relief at a lower pressure. In other words, I expected to sleep terribly but wanted the data for CPAP setting. As it turned out, the jaw advancement made little difference, which is worth knowing, and now I do. I think it also leans me a bit toward thinking the 'collapse' is also of the upper airway.

But some snores are palatal and some from your tongue closing off the back of the airway. Both are related to the tongue but the palatal snores can be just from the air traveling past the soft flabby soft palate (and Uvula). This is enough vibration for the machine to increase pressure either pushing the palate away from the tongue or by pushing the base of the tongue away from the back of your throat.

This is a little off-subject, but whatever my respironics C-fex APAP is seeing and calling 'vibratory snores' are not all snores; because a lot of them appear even during the time I'm conscious and breathing normally before sleep and after waking. So whatever they are, they aren't what I would have thought of as 'snores'. While awake, they are not correlated with any problem, but while asleep, a lot of VS index correlates with me feeling bad the next day.

The palatal snores (air traveling over your soft palate) can cause the machine to increase pressure, IF you are at risk of central apnea (I'm going by your reports of "how you feel"), the machine increases pressure to eliminate the snores and in doing so increases pressure (possibly too rapidly) where it induces a central apnea.

I will indeed be looking into it as you have suggested. I will note that last night on lower pressures my heart rate was jagged and high, while the previous nite at a static pressure of 13, the VS index was low as well as a 1.2 AHI, and really lower than that since some of what it thought were apneas were me messing with the mask while awake.

The calmness of my heart rate and lack of arousals made me think that central apneas might not be happening; that my lack of feeling alert was simply due to only sleeping for 3 hours, since I have a hard time falling asleep initially or after waking.

Basically, all last night I was between 9 and 11cm pressure, which stopped the desaturations but not the disordered breathing.

Now, your machine is not smart enough to differentiate a obstructive apnea from a central (unless it is a 420e), if it is a Remstar or Resmed auto forget it not even close.

I believe that. It is a remstar auto with C-Flex, the kind that was top of the line 3 years ago.

Again put up a daily report and it will resolve that question, be sure to put the legend up showing pressures at the bottom of the page that is important also.

I have no easy way to put up a report, or even save one. The only PC I have access to is a bookkeeping PC that belongs to a charity my wife works with, and it doesn't seem to have the ability to save as PDF. So I can print but not save to any useful file type I know of. Also that computer isn't hooked to the internet; I have a mac I use for most stuff... if I could save as a file and put on a memory stick I could probably do it, but since I've been retarded from poor sleep, haven't assayed the task.

You didn't follow my suggestion on the 7.5 to 9.0 setting you went only half way and lowered the Minimum. I'm trying to see how you do below the 10 cm central apnea threshold to rule them out, but you won't listen, so you are back here again.

I am listening, and I'm gonna do it. I have not prioritized it as highly as 2 other things on my list because I tried for many years at lower pressures - 6, 7, 8, 9 etc and always felt terrible, so I have that information already known. Back a decade ago, they had me start at 6cm, then increased it 1cm at a time for a month each. I'm older now, but I do have a lot of experience at the lower pressures from then.

If you want to rule out what I suggest is happening above, you have to put the Maximum pressure down to 9.0 and observe your reports for the difference. If I'm right your overall AHI should drop.

Maybe.. I'll try it, but I already have it down to 1.2 at CPAP=13. I'm tempted to try a flat pressure of 11.5 tonite and see how I do, and I may. This doesn't mean I'm not paying attention to your advice, just that I'm doing things in what seems to be a logical order.

Your heart rate would climb if you were having a central apnea as well. Why do you thing patients with CSR also have heart problems? Most find after they get a pace maker some improve dramtically.

Yes, this makes sense and is also part of my reasoning. Looking at my heart rate graph for the night before last at CPAP=13, my heart rate was about 52 and level, few arousals. That doesn't seem very consistent with centrals. Last night, it averaged 65 with tons of arousals to 110 or above. The thing which I find correlates best with feeling bad is a high and jagged heart rate for the night; the second best is the VS index. At CPAP=13, both were very good.

I am going by what you are reporting on how you feel, feeling that bad indicates some sort of central apnea or defective mask to me.

I appreciate that. I know you have kinda dismissed the other aspects of my medical condition as me just making up stuff, but it could be that it will just take a little while to heal; after all I have had bile in my lungs and the tissues probably need to repair themselves.

Look at the OA events seen on the Daily report, you should see "clusters" of apnea bunched together my guess even some random FL's, the question is are those all obstructive or are they a combination of obstructive and central?

No clusters. Last night zero apneas during hours of sleep, just a couple of FL's probably when I took a drink or something while wearing the mask to take a pill. AHI 1.7 listed on the report, but VS index 25.2. I look forward to a higher min pressure tonight and getting the VS and heart disturbances down.

Can guarantee you the machine cannot tell the difference at least not that one. That is why they put in place that stupid NRAH algorithm to limit the stupidity on the machine. That is why I asked to see a Daily report.

I appreciate the reality check... and say, I'm sure it has been discussed here but I haven't familiarized myself with the site... I'm thinking of getting a newer machine and I like the CFLEX feature. Do people find the newer AFLEX feature to be worth the money or is is about the same as CFLEX?

thanks again

dj

[coconut]

Just to finish up for anyone who may read this in the future.

This is being written the day after my last note. I feel great, well-rested, after a night of sleep with a CPAP pressure of 12 and cflex=3.

My heart rate was good and lower than at previous settings, and MUCH better than when using APAP.

Clearly, the APAP settings I have used for the last decade were sufficient to end my oxygen desaturations, but the damage was being caused by the struggle to breathe. The struggle was successful, but the negative pressure on the lung lining caused damage while the elevated heart rate and spiking blood pressure made mincemeat out of my nights and made me a zombie in the daytime.

The lesson is that for some people, THE DESATURATIONS AREN'T THE PROBLEM! That didn't occur to me until recently, and the sleep techs I had seen had stated otherwise: that if the desaturations were controlled, so was the apnea. That was wrong: the desaturations were fixed, but not the physically dangerous struggle all night every night. For patients like me, APAP is probably dangerous since it produces the illusion in the sleep study personnel that the problems are controlled and that the patient is just bitching. Now I know better, and look forward to reclaiming my life and health.

Thanks to those who posted here in support.

DJ