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[Treatment] New user looking for suggestions
#1
New user looking for suggestions
Hello everyone,


I’m in my 20s, male, BMI around 22, I work out 3x a week, run 4x a week.
I have struggled for the past ~13 years with getting up from bed in the morning and being tired - both physically and mentally. When I brought it up to doctors they didn’t seem to think of it as important so I just thought that’s the way I am and got used to it.

Fast forward a few years, my doctor noticed I had polycythemia (elevated red blood cell count) so he checked for lung or heart problems but everything seemed fine so we agreed that we would regularly monitor it through blood tests.

I felt progressively more tired, woke up regularly in the middle of a night hot and sweaty, and had a serious productivity decline at work - made me worried that I’d get fired so I consulted with my doctor. Polycythemia was still there so he suggested that I should try donating blood, somehow he thought it might help.

It didn’t.

I even felt worse for a few days (except for the feeling that the blood might help somebody).
At the time I was kinda lost - I was OK from my doctor’s point of view, from what I’ve searched online I found that I might have sleep apnea but was thinking that the doctor would probably find out if I had it - specifically the polycythemia since he spent quite some time trying to find its cause and I read somewhere (even few users here have mentioned it I think), that polycythemia can be a symptom of sleep apnea as the body tries to adapt to the oxygen deprivation in sleep.

Anyway, I decided to try a sleep lab. I found one which didn’t require a prescription for a sleep study - they were, unfortunately, doing only limited polysomnography (no EEG).
The study had 2 parts - 4 hours of monitoring and then 4 hours of titration. It went bad, I felt like I didn’t fell asleep at all - I have trouble falling asleep at foreign places, when you add to it all the sensors you are connected to and a full face mask during the titration it didn’t exactly help with falling asleep.

When I came in for the results I thought that the study’s results will be irrelevant and I’ll need to repeat it. I told the doctor that I felt like I didn’t sleep at all. He showed me a chart where was visible that my breathing has changed after the first ~30 minutes and also my blood oxygen level fell to ~93% so it seems it might have been some shallow sleep where I was still conscious.
The result was that I have severe obstructive sleep apnea with an AHI of 48.
He prescribed me a bilevel machine with 6 EPAP 11 IPAP saying that the machine will arrive in 2 months.

I decided to get one myself earlier, so I got a used ResMed AirCurve 10 VAuto.
I started with the prescribed pressure (6/11) but couldn’t fall asleep and suffered from bad aerophagia. So I tried the auto mode for about a week and then settled on 4 EPAP/7 IPAP since I didn’t have aerophagia and obstructive events were not much frequent. I’ve been using the machine for about 7 weeks total now, with 4 weeks at the 4/7 setting which I was quite content with - the numbers in Oscar seem fine and I felt a bit better in the mornings.

Last few weeks I’ve been struggling with an issue I had pre-CPAP and the therapy seemed to help with it. I wake up in the middle of the night, hot and sweaty, with a slight urge to go on a toilet. After I use the restroom I have trouble with falling asleep again - although I feel really tired and in the evening I have no issues with falling asleep.
What I find weird is that I can see no events before waking up. See the attached screenshot from the last night - I woke up at around 04:53.

Would you suggest trying to raise the pressure as it seems quite low right now, although the numbers don’t look bad? If so, how to approach it?

Another issue might be with leaks or wrong mask fit. Sometimes I feel like I wake up, because the mask (Resmed f30) leaks a bit or is pushed to my nose too much so the breathing is restricted, and then quickly fall asleep - are the leaks on the graph OK or not? I want to try nasal cushion (Resmed n30i) but need to wait for a chin strap to arrive since I tried the mask a few times and always woke up with a slightly open mouth and air leaking out.

Also was wondering about the result from the sleep study as I didn’t feel like I slept at all. Was thinking of verifying it at a different sleep lab with full polysomnography (including EEG), which might also shed some light on my problem with waking up. Unfortunately, it’s at a private clinic so not paid for by insurance.


Thank you!


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#2
RE: New user looking for suggestions
Your therapy looks very good with excellent results, no flow limitation, normal respiration and volume. I understand you tried auto VPAP mode and higher pressure resulted in discomfort and aerophagia. I don't know that a sleep study will result in the answers you seek and it can be very expensive. There are smart watches that have a pretty good sleep function like the Garmin Vivoactive and others that can approximate your depth of sleep using movement as a proxy for EEG. I would start there and try to sync the results with your Oscar data. I doubt you have a a problem with SpO2, or a pulse oximeter might offer insights as well. I also have polycythemia with hemocrit of 51. I have an appointment next week with a hematologist, but I doubt I'll get any insights from that. Are you using a hormone replacement therapy that would raise hematocrit? Have you checked hormone levels as a possible source of your fatigue?
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: New user looking for suggestions
Welcome to AB.

I see no need for an additional Sleep Test. But do get a FULL copy of the one you had and post a redacted copy here. OSCAR will give you enough going forward.

I can see getting a recording pulse oximeter, one that is OSCAR compatible (see the Oximeter Wizard in OSCAR), and see what is happening overnight at home. I doubt you will need it all the time but it will show O2 drops overnight in your home environment.

Set the range on the Flow Rate to +/- 75 and 2-3 minutes to evaluate the breath-form. And yes you woke up at 452/453.
Gideon - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

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#4
RE: New user looking for suggestions
(12-06-2020, 02:02 PM)Sleeprider Wrote: Your therapy looks very good with excellent results, no flow limitation, normal respiration and volume. I understand you tried auto VPAP mode and higher pressure resulted in discomfort and aerophagia.  I don't know that a sleep study will result in the answers you seek and it can be very expensive. There are smart watches that have a pretty good sleep function like the Garmin Vivoactive and others that can approximate your depth of sleep using movement as a proxy for EEG. I would start there and try to sync the results with your Oscar data.  I doubt you have a a problem with SpO2, or a pulse oximeter might offer insights as well. I also have polycythemia with hemocrit of 51. I have an appointment next week with a hematologist, but I doubt I'll get any insights from that. Are you using a hormone replacement therapy that would raise hematocrit? Have you checked hormone levels as a possible source of your fatigue?

Thanks for so fast reactions!
I actually have a Garmin smartwatch but wasn't using it at night since I wanted to minimize all distractions (it's a bit bulky Big Grin ) when I was getting used to a CPAP but will try it since I'm falling asleep fine now.

Last time I had hematocrit of 53 and red blood cell count (RBC) 177. Hopefully will do a blood test next week so I'll know the current levels.

I'm not using any medications, but will try to ask my doctor about hormone levels and get it checked if possible.
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#5
RE: New user looking for suggestions
(12-06-2020, 02:06 PM)bonjour Wrote: Welcome to AB.

I see no need for an additional Sleep Test.  But do get a FULL copy of the one you had and post a redacted copy here.  OSCAR will give you enough going forward.

I can see getting a recording pulse oximeter, one that is OSCAR compatible (see the Oximeter Wizard in OSCAR), and see what is happening overnight at home.  I doubt you will need it all the time but it will show O2 drops overnight in your home environment.

Set the range on the Flow Rate to +/- 75 and 2-3 minutes to evaluate the breath-form.  And yes you woke up at 452/453.

I'll try to get the copy and post it here. Also will probably try the oximeter, thanks!

Attached 3 segments before waking up


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#6
RE: New user looking for suggestions
I recommend that you ask your doctor to set up a regular schedule of testing and, if needed, blood withdrawal. This can be a serious condition; more here, from a trusted web site:

https://www.mayoclinic.org/diseases-cond...c-20355850

(By the way, on another site, I read that abnormal sweating, fatigue, and trouble concentrating can be associated with polycythemia.)
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#7
RE: New user looking for suggestions
Dormeo, thanks for the link. I was not aware of polycythemia vera and that it is a form of cancer. Wow! All of a sudden I think I know what I'm in for at this appointment next week.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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