12-01-2023, 07:28 PM
(This post was last modified: 12-01-2023, 07:31 PM by cmpman1974.)
It Just Doesn't Matter
I've come to the conclusion my BPAP therapy / oxygen just doens't make any real difference energy wise. I've had many nights now with leak rates averaging 5 L/min for the night. AHI <2.0 and many times around 1.0. 10 hrs of sleep and wake up exhausted as hell. That is on 3L of supplemental SPO2 nightly.
I am noticing during the day my heart rate dropping to low as 47-50 BPM. That's a resting heart rate. Numbers go up if I'm up and about.
I can't prove anything, but if I had to guess I'd say severe disproportionate levels of REM / deep sleep. My back is so damn stiff every night. I sleep through the night most times, but wake up constantly the last half hour desperately trying to stretch out my spine. I imagine I do that all night to a degree.
It all feels so hopeless to ever regain energy. My doctor stopped my pulmonary hypertension medication as my wedge pressure on a cardiac cath was pretty elevated meaning I'm retaining too much fluid. Heart function (ejection fraction) was good, but apparently, the chambers must be stiff and not push fluid back well enough. Docs only did a right side cath. They said no reason for a left side cath since my numbers looked good TEN YEARS ago. Daytime oxygen levels have been completely fine. I probably am yawning 500 times a day minimum though. Seems crazy to me.
12-02-2023, 02:30 AM
(This post was last modified: 12-02-2023, 02:34 AM by srlevine1.)
RE: It Just Doesn't Matter
You may want to use OSCAR and upload some charts to the forum for community comments. It might be possible to spot anomalies that can be rectified.
From first impression, it might be that your back discomfort is causing micro-arousals and preventing therapeutic sleep. Have you considered your bed and bedding, perhaps some form of pain management? Have you considered consulting an electrophysiologist, not a cardiologist, to consider conduction issues and a potential pacemaker solution? And an endocrinologist to rule out thyroid issues?
It is my understanding that "determining that elevated pulmonary artery pressure and increased left heart pressure is present requires catheterization of the right heart and bilateral pulmonary arteries." Therefore, your docs might consider a prolonged procedure on the left to be a low-reward/high-risk proposition. The problem is that we need to trust the quality of our specialists, especially in life-altering scenarios.
Low energy is a debilitating second only to depression.
Don't give up the fight.
Wishing you the best. -- Steve
P.S. bumping up my heart rate to an atrial-paced 60 bpm increased my energy.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
12-03-2023, 12:14 AM
(This post was last modified: 12-03-2023, 12:15 AM by cmpman1974.)
RE: It Just Doesn't Matter
(12-02-2023, 02:30 AM)srlevine1 Wrote: You may want to use OSCAR and upload some charts to the forum for community comments. It might be possible to spot anomalies that can be rectified. I have posted many times showing my OSCAR charts. I will update a few soon. I see very similar statistics as always besides a marked improvement in leak rate after using a good chin strap.
From first impression, it might be that your back discomfort is causing micro-arousals and preventing therapeutic sleep. Have you considered your bed and bedding, perhaps some form of pain management? Been there, done that. I got a new mattress a while ago. Nothing can make up for a bad herniated disc, spinal stenosis and pretty significant DDD of the lumbar spine. I did consider that angle. I also take a muscle relaxer nightly, had endless spinal epidural shots, SI joint injections, etc. I am not a candidate for spine surgery due to my weight. As of now, it's more terrible stiffness in the spine than bad pain. Then add to that I have two shoulders that are shot and need to be replaced. Pretty horrible for not even b being 50 years old!
Have you considered consulting an electrophysiologist, not a cardiologist, to consider conduction issues and a potential pacemaker solution? And an endocrinologist to rule out thyroid issues? I have been to every specialist / doctor you could ever imagine. lol. I have an endocrinologist. I have Hashimotos/low thyroid, but I've been on meds for years now and TSH is at a good level (1.5). I see my cardiologist this week for a follow-up. They have an electrophysiologist there too. I'm going to discuss the occasional low BPM issue and get his thoughts.
It is my understanding that "determining that elevated pulmonary artery pressure and increased left heart pressure is present requires catheterization of the right heart and bilateral pulmonary arteries." Therefore, your docs might consider a prolonged procedure on the left to be a low-reward/high-risk proposition. The problem is that we need to trust the quality of our specialists, especially in life-altering scenarios. The left side heart cath was turned down solely by insurance, not my doctors. The doc thought blockages were highly unlikely since the arteries were clean ten years ago. I don't know if that makes sense or not. I do realize left side hearth caths involve more risk that right side ones. I did have the right side heart cath now FOUR times in 10 years. Like I said, I've been through a lot - Leukemia, Bone Marrow Transplant, endless tests, MRIs, CTs, and so on and so on.
Low energy is a debilitating second only to depression. Yes you are quite right. I honestly wouldn't know what to do if I actually woke up with some energy. It's pretty depressing to be fatigued constantly and yawn so much.
Don't give up the fight.
Wishing you the best. -- Steve
P.S. bumping up my heart rate to an atrial-paced 60 bpm increased my energy. That is great news!
12-03-2023, 02:03 AM
(This post was last modified: 12-03-2023, 02:04 AM by srlevine1.)
RE: It Just Doesn't Matter
I, too, have been diagnosed with Hashimoto's and take Levoxyl. Unfortunately, I also take Amiodarone (for arrhythmia control) which screws up thyroid blood tests. It's a never-ending battle. I would be interested in seeing about the low heart rate and also anything about blood pressure control. Having one major problem is challenging, having multiples often confounds doctors who concentrate on their specialty and avoid multi-disciplinary consults due to time, complexity, and insurance clerks.
-- best
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
RE: It Just Doesn't Matter
You should tell your heart doctor about the sometimes low heart rate, but I wouldn't worry too much. When I developed Atrial Fibrillation, my doctor noticed afterward that my heart rate was sometimes in the 30s and low 40s. Those are not good. Eventually, my rate settled at 50-60 something. They call it Bradycardia, but at those numbers, it is a harmless version. Maybe mine was always a bit low and normal for me. At 47-50, I doubt that you are in trouble.
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RE: It Just Doesn't Matter
With atrial fibrillation and PACs (premature atrial contractions), low readings may be due to sensor anomalies. Since some sensors measure peak-to-peak waveforms or use other detection schemes, anything that is inconsistent may alter the reading. In my case artificially increasing or decreasing the heart rate on my ResMed S10 pulse-oximeter display. Reading the HR and SPO2 in Oscar provides a more consistent picture of my data.
Quoting Clint Eastwood, "A man's got to know his limitations. "The same applies to measuring equipment.
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Smartwatch-induced cardiology referral due to pulse underdetection with premature ventricular complexes ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8441208/)
Recent studies have brought the potential role of smartwatches in pulse rate and arrhythmia monitoring to public attention, potentially leading to the misconception that the technology provides information of diagnostic quality. While some of the latest smartwatches can now record single-lead electrograms, the majority owned by the general public use photoplethysmography (PPG) to measure pulse rates. However, in the presence of arrhythmias causing reduced left ventricular output and hence pulsatile microvasculature blood volume at the periphery, PPG may the underdetect pulse rate, analogous to the well-recognized clinical finding of an apical–radial deficit. We report a case of this occurring in routine clinical practice in a patient with premature ventricular complexes (PVCs).
A 50-year-old man was evaluated in the emergency department after anxiety associated with a reading of bradycardia on his personal smartwatch. The patient had a known history of paroxysmal atrial fibrillation, managed by regular verapamil. Further, between regular visits to his treating cardiologist the patient used the pulse rate measurement function of his personal smartwatch to passively monitor for episodes of acute arrhythmia.
The patient had experienced palpitations on the night prior to the day of admission, and was awoken from sleep at 4 AM by palpitations and chest pain. The patient sought the measurement of his pulse rate according to his personal smartwatch, which reported a range of 33–43 beats per minute. Fearing imminent cardiac emergency, the patient rushed to the hospital’s emergency department in a state of anxiety.
Through hemodynamic compromise of diastolic filling, PVCs transiently decrease stroke volume and cardiac output, underperfusing the microvasculature and creating a clinically appreciable pulse deficit that may not be detected by smartwatches using PPG. As smartwatches gain more attention and patients begin providing readings from these devices alongside their clinical history, it is increasingly important that clinicians be aware of the technology’s limitations and be cautious when called to make decisions from the associated data.
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"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
RE: It Just Doesn't Matter
Interesting. So if I've read accurately, my PVCs might make monitoring rate inaccurate. My heart rate and BP numbers are scattered all over the target as if I shot it with a shotgun.
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