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singingkeys

singingkeys
Joined Oct 2018
singingkeys
Joined Oct 2018

Alright, I'm attaching my recent titration study interpretation and what they used in lab to treat it. I know that in the lab they used an OmniLab for the titration. I wore my own P10 mask for the titration study. I have basically been treating with APAP since last year. Some days it would work and others I would have a ridiculous amount of events for no rhyme or reason. In APAP, I figured out that my max was 9cm and I would usually start out at 8cm and have it set to ramp to 9cm if needed. EPR was set to 3 full-time on an Air Sense 10 Autoset. Yet I also have central apneas that the APAP of course cannot treat.

So last month I had my titration study. The sleep tech started with CPAP and central apneas spiked (got really dizzy, the room was spinning with my eyes closed, had an out-of-body experience likeI floated up to the ceiling), so she switched me to BiPap. As you can see, in the lab they apparently brought it under control to reduce my hypopneas, obstructive apneas and central apneas using BiPap. Then I was holding for a BiPap appointment with my sleep doctor. Just had that Wednesday morning.

I researched the various BiPaps ahead of time. Some people were telling me to push for BiPap ST instead of S for me centrals because the timed mode helps with centrals. I sent an email to my doctor's office ahead of time asking about the type of machine. I also called. They gave me the, "Whatever machine you get will be based on your titration study."

Ended up with Air Curve 10 S. 6 months rent to own if I'm compliant for like 70% of the month and sleep at least 4 hours per night on the machine for about 21 nights.

Per the lab titration results, my settings needed were 9 IPAP and 5 EPAP. Easy-breathe is on. Ti max is default at 2.0s and Ti Min is 0.3s. Trigger set to Med, Cycle set to Med. 20 minute ramp time. Start EPAP is 4.0 and goes to 5.0 after 20 minutes.

This was my first night on it last night. I pulled it off a few times to take a break because I woke up feeling like I wasn't breathing (central) even while using the machine. I felt awful this morning.

Looked at my data in OSCAR and I saw 45 CA events in 5.25 hours with just a couple of hypopneas and apneas.

https://postimg.cc/23YnyMG5

https://postimg.cc/LhVL1DQ3

https://postimg.cc/r0N05yjw

https://postimg.cc/94TqFYqT

https://postimg.cc/sv6WnXrB

https://postimg.cc/pm3FH6yR

The sleep manager lady who set me up with the machine to take home was rude and direct. She gave me her card yesterday and said, "If you have any questions, reach out to me."

So this morning I emailed her with the same screenshots from OSCAR that I'm posting here. My email to her said: "I picked up my Air Curve 10S BiPap yesterday and wanted to share results of my first night. I had an extremely rough night and as you can see from the screenshots, I have followed the exact settings given to me 100%. There were a few times when I had to take my mask off for a little break because I kept waking up so much from whatever was going on. I use a software called OSCAR, which is commonly used to review CPAP/BiPap data for patients. I also use the ResMed MyAir app. It registered 45 Clear Airway (Central Apneas), 1 hypopnea and 3 obstructive events for the 5 hours 16 minutes that I kept the machine on. My obstructive apneas are pretty much gone and my hypopneas are gone, but my centrals are quite high. Do you have any advice that might be of help?"

Got a rude reply:

"Sir,

This is the first night you use the machine. It is not a magic wand. Also the software you are currently using is not FDA approved. 45 clear airway is also not central apneas, the abbreviation is probably the same but central apneas is not clear airway. Just continue using the machine and we will analyze it when you come back from you visit. For the mask, you are in the adjustment period. Give it a time to adjust.

Thank you"

If they are not centrals, what else could they be? She's from another country and obviously the language skills for typing are not there. I'm confused. My understanding is that CA in OSCAR is central apneas. Centrals went down in the lab titration, but spiked at home. Using the same P10 mask (she gave me a new one with the machine, too). What do you make of this?

Primary care doc is going to do an MRI of my head next week to check for various stuff.

I toss and turn all night, every 30 minutes or less per the motion camera trained on my bed. But in between, I probably move all night long about every few minutes. I just shift in position on my bed or move an arm or leg just a little. I'm thinking this may be centrals...I saw a little boy's central apneas video one time while he was sleeping and he woke up sometimes seconds apart without a machine. Wondering if my centrals are doing that.

Any advice?

If the BiPap S is not working, what will happen to it? Get another machine on the insurance and keep this one or return it? Doc doesn't seem to like used machines. I asked my sleep doc about my APAP (Air Sense 10 Autoset with low hours) that I was self-treating with before and my sleep doc said, "We usually just throw them away. Nobody will want it, especially around this time." I saw someone with an auction for one on Ebay at $400.

I have an appointment at 1 months, 2 months and 3 months from now and they want me to bring the machine to each appointment.

What is the reason why I'm so miserable while using the BiPap at home if it worked in the lab? I also have times in the later afternoon while just resting/sitting where I'll just get short of breath like I'm going to faint and it comes and goes in waves. Odd twitches/feelings/tingles all over my body. Primary care doctor suspected POTS/Dysautonomia. Heart was checked by Cardiologist - good. Full Stress EKG and ultrasound with ColorFlow. Had my thyroid checked by an Endocrinologist. Nothing wrong. Lots of blood work. All fine. I have times when I feel like I have to force myself to breathe while sitting upright during the day. It is like I have central apneas sometimes while sitting up during the day and I just "stop" breathing until I force myself to breathe. Very odd. Should I see a Pulmonologist?

In 2018, I got a doctor referral for a sleep study, finally in my 30's. Unable to function, brain fog, waking up exhausted every day, etc. Had an in-lab sleep study that showed 4.7 AHI, 18 RDI with 50 events in 2.75 hours for the whole night. Sleep doc said I didn't have sleep apnea. No major drop in O2 levels below the low 90's. Couldn't get a CPAP. My ENT doc requested a CT scan of my sinuses. Deviated septum and enlarged turbinates. Got surgery for both and I breathe easier now, but still sleep poorly. Requested a home sleep study via mail order on my own a few months after surgery. 5.2 AHI. I got my ENT doc to write me a prescription for an Air Sense 10 Autoset and I've been trying to get that to work. I have it to 7.6 starting pressure and max of 10.4 in APAP mode, because it never goes above about 10.1 no matter how high I set the max. Anything below 7cm makes me feel suffocated.

3 ER visits December 2019 - January 2020. Racing heartbeat out of nowhere at night before bed, trembling/shaking all over, feeling like I couldn't breathe, feeling faint, so much adrenaline that I felt like I couldn't walk, etc. A few EKG's, tons of blood work at the hospital each time. Nothing. Blood pressure went up as high was 170/100. I'm a healthy and muscular caucasian male, 5'8 and 150 pounds. Never been overweight. No large neck. Nothing outward screams sleep apnea.

February 2020 - my family got a violent stomach bug. 3 members of the household. One had violent vomiting for a couple of days along with diarrhea. The two of us just got black diarrhea. I had it for days. After that, my stomach was killing me for weeks with burning and pain all night. Finally had an Upper Endoscopy (EGD) at the Gastroenterologist. He saw a red and inflamed stomach lining. They did biopsies and found no bacteria (like H. Pyloria) and no cancer. He put my on a PPI med for months and I eventually ended up on Nexium 40mg twice a day, which I've taken for like 5 months now.

I've been to two primary care doctors, a Cardiologist for a full Stress Echocardiogram with ultrasound of the heart before and after the treadmill walk. He said my heart is healthy. Wore a Holter monitor 24/7 for 31 days. They caught half of a second of arrythmia and it wasn't even during a time when I reported symptoms. He said he thinks it is my sleep issues. I have Dysautonomia that started 2-3 months ago. Dizziness in my head, tingling on the top and back of my head, my heart rate increases and decreases suddenly, I feel faint-like sometimes. Suspected Postural Orthostatic Tachycardia Syndrome or Dysautonomia. My new primary care doc put me on Fludrocortisone, a steroid, to try to help with the Dysautonomia. Hasn't helped much, if at all. I've been to an Endocrinologist to make sure it wasn't thyroid related, had all kinds of blood work done again, etc. Nothing.

Earlier in 2020, I found a new sleep doctor and got an exam. He went up my sinuses with the endoscope and said they're clear, but turbinates are again enlarged. Covid-19 was happening, so he sent me home with a sleep test. 13 apneas/hour. He said he didn't believe that and when he looked at my throat, he said I don't look like someone with Upper Airway Resistance Syndrome, either. Did an in-lab sleep study at his lab because he wanted to know that they're counting apneas correctly as 10 seconds or more. I had 64 apneas/hour and slept for half of the night. Went back for a titration sleep study last week. I brought my P10 nasal pillow mask and she said it did well. My sleep tech was actually the sleep lab manager and previously owned her own sleep lab. They use the OmniLab titration system. During the earlier part of the study, I felt like I was floating up to the ceiling and then it went away. I don't get that at home when I use CPAP. Not sure why I got it in the lab.

Outside while waiting on my ride the next morning, off the record she told me that she started me off on CPAP at 6cm. She kept upping it and later told me that it wasn't working for me, so she switched it to BiPap and it started working. She said she saw some central apneas, as well. I also get autonomic dysfunction with the dizziness, muscle weakness, feeling faint, etc. General Dysautonomia. I also tend to have throat tightness all day long on both sides of my throat and it feels like I can't breathe or like there is a lump or swelling or something. It has been like that for days and days, so I doubt it is anaphylactic. shock or anything. I have no known allergies to food, etc. I'm waiting on my next virtual sleep doc appointment next week to get results and see what is next as far as treatment. Don't have the results back yet from the in-lab titration study that found the centrals, but she said I "slept well" once on the BiPap, even though I felt like garbage that whole day. She also commented that the monitoring system in CPAP/BiPap machines is junk and PSG is about the only true way to tell if it is working.

I've been using CPAP on my own for about 6-8 months now. At this point, I don't know if I have Upper Airway Resistance Syndrome, Obstructive Sleep Apnea, Central Sleep Apnea or a mix of OSA/CSA and/or UARS. Some days I get just a few obstructive apneas showing up in OSCAR and maybe a few hypopneas with an AHI of 1.5 for an whole 8 hour night. Other days I might have 7 to 8 AHI, slept horribly, ripped the mask off after an hour or two, etc. I'll see mostly centrals in OSCAR, say 10 or so Centrals within under 2 hours and they're usually mixed with just a few hypopneas or obstructive apneas. Then I'll have other days with no Centrals and not many apneas/hypopneas under the exact same settings for no rhyme or reason. Lately, lots of Centrals has become the common theme.

How should this be approached from a diagnosis point of view? Try BiPap first to see if it works and then seek ASV? Curious why CPAP didn't work in the lab and BiPap did. She said she started at 6cm on CPAP and I guess kept upping it. Maybe it caused me to have a lot of centrals and get reduced oxygen for a short while? I had a floating up to the ceiling feeling I think while I was on CPAP in the lab and it went away when she went to BiPap after the saw the CPAP wasn't working. I don't get that floating feeling at home on CPAP, so that's odd.

Curiously, I have times when I wake up ahead of my heartbeat increasing. So my brain wakes up first, then my body about 10-15 seconds later and it feels scary as my heart "starts up" from a slow heartbeat to a more rapid heartbeat. As best as I understand it, most people with OSA wake up WITH a pounding heart, not with it starting after waking up. My brain wakes up first, then if I just lay there for 10-15 seconds or if I physically move my arm or something, my heartbeat will increase. I fall asleep on buses on the way home from work (30 minute ride tops), fall asleep in my chair in front of the computer, fall asleep in the passenger side of a car on a 20 minute trip across town to a store, etc. Sleepy all day. Sleep is not restful.

When I use the CPAP, I feel like I'm fighting myself breathing. When I don't use it, I'm obviously having lots of apneas on my back (like the 64 apneas/hour in lab), but but they claimed none on my side. I think the ones on my side may be Centrals. I have days when I feel irritated, hot all over, feel like the blood pressure is high in my face and hands, etc. I'm dizzy, my digestive system and bowels are all messed up (soft stools that come quickly with short notice and smell terribly).

As noted, next week is my doctor's appointment. I have a team of doctor's, so I'm not asking you to treat me. I'm asking for opinions, tips, anything helpful along this journey. Thoughts? :huh: I feel so bad that I can't even drive at all. My body doesn't want to work right sometimes. My muscles feel jumpy/jittery some days. I have trouble swallowing food and drinking liquids sometimes and not at other times. I get the pressure on both sides of my neck in the area where you check the pulse rate. When I check my blood pressure with an electronic monitor, the "irregular heartbeat" icon lights up even when the blood pressure and pulse rate are normal. As noted before, the Cardiologist found nothing in the Stress EKG or during the entire month of wearing a Holter monitor with 5 electrodes stuck to me 24/7 and looking for anything odd. My stomach/intestines "twitch" and feel like they are contracting a lot or something. There are times like right now when my heart is beating normally speed-wise, but I can see my entire stomach jumping lightly with each beat.

I'm attaching a couple of screenshots of OSCAR data from June 6 and June 10 to show the differences in what I'm dealing with. I had to do regular screenshot grabs because the F12 button in the program is capturing just a blank image. One day seems fine and the next I'm ripping my mask off after an hour or two and then putting it back on later and having a crazy amount of central apneas. Why would I have so many on one day and sleep terribly and then sleep 8+ hours on another day and not have as many?

Does this pretty much guarantee that I have both Central and Obstructive Sleep Apnea? What can I do to stop pulling off my P10 mask?

June 6 - https://i.ibb.co/PGw9swh/6-6-2020.jpg

June 10 - https://i.ibb.co/PhLM9st/6-10-2020.jpg