Are there any MD's on the board? (maybe dumb question?)

[notausername]

I apologize if I'm being lame - please bear with me, this board is just about the only light in the darkness that is modern industrial 'healthcare.'

Previously I showed my charts, and Expat31 and SarcasticDave94 basically saved my life. I started using a collar, then switched my mask, replaced my pillow, and that cured the symptoms that have dogged me for 18 months or more.

Quickie history: Right VA dissection and occlusion, followed by a year of recurring TIAs,vertigo, imbalance, audiological disturbances, waking up shouting and gasping. All symptoms have now resolved except some residual tinnitus since fixing the positional apnea. I can't thank you enough for giving me my life back.


Problem now is the doctors and my medical records. They are all about the averages - AHI, % of time with low O2, etc. Latest doc looked at the summary data from my last study and said "everything is fine." The doc who did the study said "If you're waking up gasping talk to your PCP or go to the ER, your machine is working fine." Meantime, dizzy and exhausted all the time, likely headed for a crippling hypoxia, given the history of TIA's being caused by apnea.


So what should I do about all the doc's notes and "diagnoses" that say "oh everything was fine" and completely ignore how bad my symptoms have been. Not to mention the obvious evidence that the apnea was the cause?

How do I get a real sleep doc to look at the details and help me correct the record? And to understand and follow my case?

Any ideas?

Thanks as always!

[SarcasticDave94]

Interesting that you mention PVCs, I have them myself. And at this time, due to untreated complex Apnea, not great sleep because of other over the top complex Apnea and COPD issues. My last bit of hope was when an RT said I'd need a ventilator, and that was in 2019. Sadly the doctor wouldn't act on this advisement, and supposedly correctly, because I can't reproduce symptoms that can be recorded as badly enough in needing the device. My last possible answer is the direction that some here take, and that's buy the machine yourself without insurance being involved. I'm probably going to need to get a loan in order to get what I'll need.

I know CPAP, AutoSet, VAuto, and ASV aren't the correct answer for me. A borrowed ResMed ST-A did work best, and being a mini ventilator is probably why it did so. The ST-A or a full ventilator like the Astral 150 are capable of running in iVAPS, a ResMed variant of AVAPS.

BTW glad to have been a help in the past.

[Expat31]

Hi,

It may be of some help to use an OSCAR supported oxymeter recording overnight, and importing the results into OSCAR. 

The resulting graph and statistics may be useful in detecting anomalies. Linkage with some other graphs may be interesting, you never know what you may find....

The best graphs to examine then would be:-

1.Events
2.Flow rate
3.Pressure
4.Leak rate
5.Flow limitations
6. Respiration rate
7. Spo2
8. Pulse rate.

Just some thoughts to consider..

[notausername]

I don't want to go offtopic   but I've seen a several mentions now of PVC's here, apparently it's common to have them co-occur with apnea according to NIH papers here:

https://pmc.ncbi.nlm.nih.gov/articles/PMC6367697/

"Obstructive Sleep Apnea (OSA) is a prevalent condition thought to increase in the future. Being mostly undiagnosed, the most serious complications are cardiovascular diseases, among which are arrhythmias. Controversy remains as to whether OSA is a primary etiologic factor for ventricular arrhythmias, because of the high incidence of cardiovascular comorbidities in OSA patients. Howev-er, there is mostly a strong evidence of a relation between OSA and ventricular arrhythmias. A few mechanisms have been proposed to be responsible for this association and some electrocardiographic changes have also been demonstrated to be more frequent in OSA patients. Treatment of OSA with Continuous Positive Airway Pressure (CPAP) has the potential to reduce arrhythmias and confer a mortality benefit."

confer mortality benefit - I guess that means "potential to keep people from dying unnecessarily"  

And
[url= https://pmc.ncbi.nlm.nih.gov/articles/PMC7568924/][/url]
[url= https://pmc.ncbi.nlm.nih.gov/articles/PM...MC7568924/[/url]

"Sleep apnea is associated with cardiac arrhythmias1 such as atrial fibrillation (AF), premature ventricular contractions (PVC), and premature atrial contractions (PAC). Mechanisms that may explain this association include autonomic imbalance, hypertension, intermittent hypoxia, and atrial remodeling1,2. "

--

In my case they were part of a of drug interaction/reaction, and fortunately resolved when I figured out that what was going on.


Hope that's of use.

[SarcasticDave94]

I'll admit I don't know exactly what the root cause of my PVCs are. They are treated by my cardiac team with medication. If family medical history counts, many older men in my family had stroke and heart attacks. My father in particular died of congestive heart failure at age 43. This was after 4 major heart attacks and a quad bypass. So something I'll be needing to watch more diligently.

[Deborah K.]

I don't know what kind of machine you need (others here could probably help you with that), but any doctor, dentist, nurse practitioner, etc. can prescribe you a pap machine if you convince them you need it.  Sleeprider helped me learn how to request the bilevel I needed.  No new sleep study was needed, just a prescription from my regular doctor.  That way my insurance paid for the machine (I have great insurance) and I didn't have to buy it myself.

Best of luck with getting the treatment you need!  

[notausername]

The "standard literature" says "an average PVC rate of < 1.0% in a day is considered benign." - I find the calculation of averages like that, as with AHI, taken over an entire day or sleep cycle, is wholly inadequate. I found that bursts of PVC's lasting 1/2 hour at 10% to be debilitating, even though taken over 24 the average was well under the benchmark. I can't figure out why such smart people are so dense sometimes.

Yes, keep a close watch, good luck! Start a new support board? Hmmm.