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Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
#1
Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
Hey all,

I'm trying to figure out the cause of my sleep apnea. For me, it doesn't seem to fit the bill as conventional obstructive apnea. For the better part of this past year I've been wearing a pulse ox/oximeter at night to track my oxygen saturation levels. I'm noticing a recurring trend, which seems to point to something other than conventional obstructive apnea. I was using CPAP for a while, but tried going without it for a while and was fine without it. It seems like I don't have a 'normal' case of sleep apnea. Here's a description of what I'm experiencing: 

For weeks on-end, I will have normal, very low-apnea index nights of sleep. Most recently, I had about 3 and a half to 4 weeks straight of oxygen saturations in the high 90s, with an occasional desaturation here and there. Then, and here's the important part, for about two days I will begin to develop a headache and will also have some odd aches and pains in my body, and I will enter what I like to now call a 'flare-up', where my oxygen desaturations/AHI will increase significantly, and I will have some shortness of breath during the day and at night. The soles of my feet also have a weird buzzing sensation -- not pain, but feels like a cell phone is going off in my feet. I will also feel pressure behind my left eye when I wake up during these flare-ups. Usually I have to blink several times upon waking to gain vision into my left eye while I'm in the midst of one of these flare-ups. It's only the left eye -- odd. I have also checked my blood pressure during the days, and it is usually low -- like 95 to 105 over 60 to 70.

Sometimes, one of the more severe symptoms I'll have is that about an hour after falling asleep, I will wake up and it will feel like I can't force my body to breathe. It's hard to describe, but it's terrifying -- I wake up, can't force myself to breathe and I try to stand up and focus on breathing. Then sometimes when I stand up, I will collapse on all fours because it seems like my body isn't getting enough of what it needs to to sustain itself. My legs/arms/body just feels heavy during those acute symptoms. In time though, my body will sort of self-correct and I'll be able to fall asleep. I've attached a few screenshots of my pulse ox readings on the mobile app -- two are from periods where I'm fine, and one is during the flare-up (from last night, in fact).

At one point, however, this experience was so severe that I ended up getting a ride to the ER. My blood pressure was high, about 160 over 110 at that time (generally it falls a bit on the lower side - 110 over 70), I was pale as a ghost, and shaking because of the adrenaline. A scary experience. I've since then learned to recognize when that is happening and have generally been able to become more patient as my body corrects itself somehow.

Has anyone experienced something similar to what I'm describing? I've done a lot of checking in with Dr. Google and looked at things like Multiple Sclerosis, auto-immune diseases, COPD, central sleep apnea, heart failure and the like... Obviously I need to go see a doctor about this, and I will - just have to get a new job and health insurance first which should be soon. Tests I've previously had done: Brain MRI, Brain CT (clear on both), carotid duplex ultrasound (normal -- although one artery had about half the max flow-speed of the other?). 

It's a shot in the dark, but has anyone else experienced something similar? I'm still relatively young male in my 30s, don't drink anymore, don't do any drugs, and yet here I am having these flare-ups, trying to figure out what's going on. In general, during the day, I feel ok and am not super fatigued. What scares me however, is that hypoxia/hypoxemia is terrible for your organs and to have this recurring over the longhaul makes me susceptible to some bad things for sure. If you've made it this far, thanks for reading - any input would be greatly appreciated.


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#2
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
Prior to going onto CPAP I would wake up with bad headaches and severe muscle cramps. My Pulmo ran some tests and determined it to be nocturnal hypoxemia (lower than normal O2 levels) which I seemed to be sensitive to.

It's something you should see a Dr about sooner than later!

You may also want to post some OSCAR charts so others can see what else is going on. While the oximeter posts are useful, they don't tell you the whole story.
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#3
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
Please post OSCAR charts, I have a link for chart organization in my signature.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#4
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
I would see a cardiologist as soon as possible , if I were you.
None of what you describe sounds good and as far as I can tell, you may be having some Cardiac issues which may even have been further complicated by pulmonary problems.
See your physician and ask for referrals to both a Cardiologist and a Pulmonologist asap, maybe even first thing on Monday morning. Do NOT let this situation go one without  professional help.
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#5
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
With respect to Cardiology - I've had the following done: EKG, coronary ultrasound/echocardiogram, trans-esophageal ultrasound, stress test, BNP blood test (used to diagnose chronic heart failure), C-Reactive Protein (general inflammation marker). All have returned normal, and even the BNP levels were on the low side. I will for sure see a doctor once I start my next job, but I've had a ton of tests done this past year -- the only doctor it seems that I haven't visited yet has been a pulmonologist. The last time I visited the ER, my TSH/thyroid stimulating hormone was on the higher normal side, but T3 was normal. She recommended I see a cardiologist, and possibly an endocrinologist. During the day I feel fine, but yeah these flare-up periods are cause for concern. At one point my liver enzymes were briefly elevated, but it was after a heavy workout at the gym, and they returned to normal range literally the week after when I re-tested it. I've run a ton of blood tests on my own in the meantime and everything looks good. My insulin is a bit on the low-normal-side when fasting as is C-Peptide, but fasting glucose is normal.

This is all really odd. I used to be a runner - could rip off a 5k like it was nothing, and it seems like the nocturnal destats are more likely to happen after a run now, so I'm stuck walking 5-7 miles instead. I will post one of the Oscar charts from a while back... I switched from a Phillips Dreamstation to a Resmed Bipap for a bit which I failed miserably with (drove my AHI into the 20s from an average of 5 to 8). Since then I've stopped using CPAP altogether, and haven't had issues except for during these flareups.

Thanks for taking a look and for your concern.
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#6
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
Also had these blood tests done during my visit to the ER: Troponin I (detects heart damage -- very low, not registered for anything significant), D-Dimer (recent blood clot test -- low, not even registered on the scale for any kind of treatment). My magnesium was just on the border of low-normal, as was chloride - so I've been taking a multivitamin lately... Yet these symptoms continue. I recently ran a blood test to check for Lyme disease. I'm out of answers at this point, so I'll follow up with a doctor. Attached is an Oscar chat from way back in April when I was using the Phillips Dreamstation CPAP.

One note I want to add, is my pulse ox vibrates when I have a desaturation below 90%. I will be laying there looking at the device which registers below 90%, but will feel fine. I've validated the levels with another pulse ox, so these desaturations are indeed happening, but I'm asymptomatic and curious as to why. Generally desats are closer in frequency to the wake-to-sleep transition period, and then are reduced while I sleep.

EDIT: Unfortunately since I returned the Resmed machine my account no longer has the info about AHIs. I also don't think that Oscar was compatible with the device so I only have my old Phillips data. :-(

Oh, and what's even funnier - when I was last admitted to the ER I had my pulse ox on during the episode and the readings were completely normal. Just bizarre.
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#7
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
Please post your Oscar with the ResMed you used.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#8
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
We can all sound like one-trick ponies around here with "positional apnea" but it's something that you should always be concerned about if you are seeing clusters/spells of breathing problems. The basic mechanics are that this is like kinking a garden hose, and the positional part is that in certain positions your airway is compromised and as long as you stay out of that position you are perfectly fine.

Which it sounds like you are describing!

That's all very simple in theory, but in practice if you only do something (get into some bad position) while you are asleep, then you aren't going to know about it because you are, well, asleep!

Something that you can do is to set up a web cam and record yourself overnight and then line up what you see in the recording with what your pulse-ox is telling you. You don't need a doctor or lab or health insurance or permission from anybody to do it.

If you can associate a particular position with the desats and other nasty symptoms, then you will have your answers. Then it becomes the challenge of figuring out how to keep yourself out of the position(s) in question when you are unconscious. The collective experience here means that we can probably help you figure that out.
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#9
RE: Apnea mystery: Cycles of normal, healthy sleep and apnea 'flare-up' periods
Broken record guy here, show the OSCAR. Some of what you describe is like my own Apnea which is Central based. I'm not sure yours is definitely yes or no, but CA are certainly consistently inconsistent, maybe this is giving you your up and down Apnea issues. Add in the BPAP makes you feel worse, BPAP and CA mix very poorly. You might want to request a new diagnostic test to see what's there as your baseline.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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