Alright, so I still feel quite dreadful everyday. Still seeing lots of events on the Air Curve 10S at 9/5 settings.
I think I go back on August 2 or something like that for them to review the first month of data.
My POTS/Dysautonomia has been giving me a run for the money lately. Doc wants to put me on an anti-depressant for the 'anxiety' that it is known to cause due to the symptoms. Those seem to be pretty bad for the body. The 24/7 dizzy thing, feeling like I'm going to faint if I lean slightly over the sink to wash my hands and such. It's pretty miserable. Stomach aches and feels weird a lot, intestinal paints/discomfort every day, not going to the bathroom as often as I should be, sometimes kidneys/bladder don't seem as regular, etc. Just had a brain MRI with and without contrast last week. My primary care doc's statement to me was: "One of the first things I would say is that I feel extremely confident that there is no heart problem, lung problem or brain problem. That does not mean that what you are experiencing does not exist but that the fear that it is a sign of a more sinister underlying disease is misplaced. Because dysautonomia / POTS is not a disease that is measurable it is more a disease or condition that we have to diagnose largely based on a person symptoms. It's not like blood sugar or blood pressure necessarily where we can track it and anticipate problems. Essentially we learn from other people who have had this and what has helped and what hasn't. We have no idea why it starts and nobody else that I had with dysautonomia has had a strong family history so it does not seem genetic. Also interestingly most of my patients who have had it will outgrow it eventually. My patients who have had the most success with it over the years have been the ones who have accepted and often have started on an antianxiety medicine to help modify the anxiety associated with the symptoms. Certainly there are other things that one will learn such as having extra salt, sometimes using medications to boost blood pressure, being aware that very hot environments are likely to induce lightheadedness, etc. You will learn how your body functions best. I would also continue to work to optimize sleep but rather viewing yourself as someone with a potential life threatening disease, view yourself as someone with a conditions that needs management and once you figure out your optimal management it should only be a nuisance."
Then I have all of these "Unclassified Apneas" that keep showing up no matter what each night. Before I turned the Easy Breathe off with the 9/5 pressure, I had a huge amount of centrals with an AHI of over 9. Just back to back rapid-fire centrals in clusters. I turned off the Easy Breathe the second or third night after I got the BiLevel and those central apneas in OSCAR show up now as Unclassified Apneas. They look like either obstructive apneas or central apneas. Is there a true way to tell? I just feel uncomfortable and agitated all night, especially with my stomach and abdomen feeling weird or having a dull ache.
At this point I'm really confused. Is it just a pressure setting that is wrong or do I need something like ASV? I'm in the process of trying to get my original sleep study before the titration study to see if any centrals showed up on the regular sleep study. If they did, would I need ASV?
My newest settings allow me to at least breathe more normally:
IPAP 9.0 EPAP: 5.0 Easy Breathe off Ti Max 2.5s Ti Min 1.5s Rise Time Min Trigger Very High Cycle High
The original BiLevel settings that it came with new out of the package were ridiculous. It was something like TiMax 1 or 1.5 and Ti Min was about 1 or less. The other settings were also different and it made me breathe so quickly to try to keep up with it. I haven't changed IPAP/EPAP yet because I wanted to see what my doc office says after a month of seeing all of these. He did say if the BiLevel didn't work out, we'd try something else.
I'm considering going to a POTS/Dysautonomia doctor with Emory. There are a few of them locally and one does a tilt table test. I've met my deductible already.
I feel absolutely fatigued daily. It honestly feels like I sleep better on my side/stomach without the machine than with it. All that I feel like doing every day is laying down to relieve the POTS/Dysautonomia. I've noticed that when I go to work feeling dizzy and bad in the morning, once I get to lifting things and moving around, the dizziness tends to go away and I feel better in general. I guess because I get the blood flowing more or something. I'm also increasing my cardio workouts regardless of dizziness.
Anyone out there had POTS/Dysautonomia and got rid of it? How long? Is it just because of my sleep?
I looked back at the month of June when I used APAP under various settings lower than the 9, usually 7.4 to a little over 8. I still had centrals popping up here and there. Sometimes a lot on one day and a little on another day under similar settings.
So here's an odd question for you...I was using the above settings for the previous thing. Then last night on a whim, I turned the Easy Breathe on and my EPAP went from 5 to 6. I'm assuming the machine made this change because I don't remember doing it.
So I went from all of those weird Unidentified Apneas to one single hypopnea this over 6 hours this morning.
Does that lack of obstructions pretty much guarantee that I don't have central sleep apnea or can it "skip" some nights even if you do have it?
Or could this simple change change that I made last night indicate that it treated my CPAP-induced sleep apnea?
Or is it possible that my doctor's office CPAP person changed this setting wirelessly? I know for sure that it was 9/5 and it is now 9/6. Double checked on the machine, too.
