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
