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Sleep issues, OSA with possible CSA and other issues - jmr1068204 - 06-13-2020
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?
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?
RE: Sleep issues, OSA with possible CSA and other issues - Gideon - 06-13-2020
Welcome to the forum.
The F12 screenprint issue in OSCAR has been fixed, the current version is v1.1.1. I do encourage you to upgrade to this version.
What I do see in your charts is the known inconsistency/variability with Central Apnea. I am hesitant to suggest a course of action based on one 'off' night, though you implied it is a common occurrence. How often do you see an elevated CAI? This will indicate how long we need to hold a setting to determine an actual change has occurred.
Do you know the nature/cause of your Central Apnea?
please post redacted copies of your full sleep studies.
Post a 2 minute zoomed view of your Central Apnea.
At this point, Central Apnea is the biggest issue with your Sleep Apnea. That is what we will address first.
The first thing to discover is how your apnea responds to a reduction in EPR. Please set EPR = 2
RE: Sleep issues, OSA with possible CSA and other issues - jmr1068204 - 06-13-2020
I updated my version. Didn't know there was a new one, thanks.
Yes, my central apneas do tend to have inconsistency and they vary on different nights, but I always seem to have at least 3-5 minimum during a night and up to 10 on bad nights. Usually they range from 10 to 20+ seconds each. My central apnea index is typically in excess of 1.0 on a nightly basis.
I don't know the cause of it. I have a lot of crazy stuff going on. Dysautonomia/autonomic nervous system dysfunction causing possibly POTS or low blood pressure. It is better when I get a couple of good days of sleep in a row. Lately that's hard to do. I've been a bit jumpy/twitchy for all of my life with neurological stuff, but none of the doctors (including a neurologist) who checked me over found anything.
I'm posting screenshot of a close together cluster of central apneas from the night where I slept 8+ hours straight.
Regarding the EPR, I've had someone on one forum tell me to set it to "Ramp Only" and go to fixed CPAP mode at 7.4. I've been running with full-time EPR at 3 for a while now with max APAP set to 10.4 because it never goes over about 10.1. I can try the EPR of 2 and see how it does.
RE: Sleep issues, OSA with possible CSA and other issues - jaswilliams - 06-14-2020
10 CA’s over an 8hr period is an AHI of less then 1 and not enough to be worried over nor is high enough to require treatment by your dr. The Zoomed flow graph you have posted shows some periodic breathing. You may find that reducing the EPR to 2 will reduce that. Not all poor sleep is caused by Sleep Apnoea we need to make sure your numbers are as good as we can get them, but anything less than an AHI of 2 is very good, from there we have to go by how you feel.
RE: Sleep issues, OSA with possible CSA and other issues - jmr1068204 - 06-14-2020
When I adjust the EPR down to two, it feels like it is suffocating unless I have the EPR on full-time. I've had a lot of people telling me to turn the EPR to ramp only and set it to like two on other forums, but that also feels like it suffocates me.
What do I do when my AHI seems to be below 2 consistently, even with a lot of centrals of 10-15 per night, a few obstructives and a few hypopneas; but still feel utterly like garbage every morning?
Still waiting on the official settings from my sleep study titration. I'll be asking the sleep doctor why "CPAP didn't work when she used it first, but then BiPap worked when she switched to it." Doesn't make a lot of sense to me as I understand that CPAP and BiPap really aren't that different with a pressure as low as mine.
I also feel a daily tightness in my trachea/lower throat at various times of the day, usually as the day progresses. Is this common with sleep apnea/uars? Should I bring that up to my sleep doc/ENT doc?
RE: Sleep issues, OSA with possible CSA and other issues - Gideon - 06-14-2020
EPR should IMHO be fulltime. Min pressure should be no lower (it can be higher) than 4 (machines lowest pressure) + EPR.
I NEED my min pressure to be 10+ or I feel suffocated, I feel like I cannot get enough air, and it has nothing to do with my numbers.
In cases like this we do not want to reduce EPAP which is Pressure - EPR, to below that comfort level. This means we need to alter the calculation somewhat. In most cases lowering EPAP is not a problem. Here I'll use 10 as the min pressure to us for this reason.
EPAP = 10 = min pressure - EPR (2) = 12 - 2, thus min pressure = EPAP (10) + EPR (2) = 12
EPAP = 10 = min pressure - EPR (1) = 11 - 1, thus min pressure = EPAP (10) + EPR (1) = 11
EPAP = 10 = min pressure - EPR (3) = 13 - 3, thus min pressure = EPAP (10) + EPR (3) = 13
EPAP = 10 = min pressure - EPR (off) = 10 - 0, thus min pressure = EPAP (10) + EPR (0) = 10
The goal being to best reduce CSA by decreasing EPR and maintain a constant EPAP during the process.
RE: Sleep issues, OSA with possible CSA and other issues - jmr1068204 - 06-14-2020
I knew there was a connection between pressure being too high and actually causing central apneas, but didn't know that there is a connection between expiratory pressure and centrals.
RE: Sleep issues, OSA with possible CSA and other issues - Sleeprider - 06-14-2020
Your titration study won't help you to set EPR because it was not likely considered. We know that you would experience less periodic breathing and CA if you reduced EPR, but if you are comfortable, then as with AHI less than 3, it is mission accomplished as far as I'm concerned. Your CA events and variable breathing will eventually go away as you adapt to the pressure and increase ventilation. These problems are common in new CPAP users that have become adapted to higher levels of CO2 in the bloodstream (hypercapnea). Eventually you will become accustomed to the normal levels of CO2 and your respiration will stabilize.
RE: Sleep issues, OSA with possible CSA and other issues - jmr1068204 - 06-14-2020
It is the throat tightness, weird POTS-like heartbeat and such that worries me on a daily basis. For instance, yesterday I was crazy dizzy. As in I could walk up and stand at the kitchen sink and feel like my legs were going to collapse out from under me and I would just faint over in the floor from dizziness. Didn't have that today. I was out in the yard working and doing hard labor and didn't have dizziness. But I didn't wear the CPAP last night. Pulled it off after like an hour and probably slept on my stomach for most of, if not the whole night. If I would have worn the CPAP, the crazy thing is I probably would have been dizzy as heck today and I can't figure out WHY that is when my AHI is usually 1.5 and below and I don't see many obstructives or hypopneas in OSCAR. I see the centrals, but I don't think they're causing that.
The only thing that keeps me thinking it is my sleep is the 64 apneas/hour that they detected on my back during my initial in-lab sleep study. During that same study, I think she said my oxygen didn't drop. So I've got some really stupid things going on. I don't fit the bill for an apnea candidate, but have ridiculous apneas of someone vastly overweight. Yeah, probably my genetics/airway. The CPAP is supposed to make me feel better, but some nights I sleep so poorly with it that I feel awful the next day compared to if I didn't use it at all.
RE: Sleep issues, OSA with possible CSA and other issues - Sleeprider - 06-14-2020
JMR, have you had standard blood testing that looks for bicarbonate or HCO3?
The symptoms you describe are not things we see here in association with sleep disordered breathing. Whether it is stress or a health problem is a bit beyond what we can discern from your charts.