I’m kind of trying to put my mind at ease. Got a lot of weird stuff going on, have been to doctors, specialists, had my sleep studies, etc. Still looking for answers. I don’t trust answers online over doctors, of course. But still looking for any comforting advice that I can find.
March 2018: In-lab sleep study showed 4.7 AHI and 18 RDI. Sleep doc wouldn’t give CPAP citing the 4.7 AHI and said I didn’t have sleep apnea. 50 unclassified breathing events over 2.75 hours of sleep. Tons of RERAs. Just 6 minutes of REM sleep. Deviated septum/turbinate reduction surgery a few months after that sleep study. General breathing during the day improved after surgery. Months after healing up, I requested my own home sleep study. 5.2 AHI. ENT doc wrote me a prescription for an APAP using those results. I’m familiar with 18 RDI usually being related to UARS. I tried to self-treat with CPAP. I have my settings right and obstructives are under control, usually below 1. But I see central apneas popping up no matter what. Some nights are worse than others on the same settings.
Got a new sleep doctor a few months ago. He’s also an ENT specialist. He didn’t believe I needed my CPAP or had sleep apnea. Sent me home with a Type 3 sleep test. 13 apneas/hour. Flustered, he sent me to his sleep lab. 64 obstructive apneas/hour on my back. Not many on my side. Well, I went back for my titration study. Sleep tech started me at 6cm on CPAP. I brought my own P10 mask that I use at home and they used their OmniLab for the titration. I felt like I floated up to the ceiling for some reason. Must have been while on CPAP. She later told me after the titration study outside that once I went to sleep, she switched to BiPap because CPAP wasn’t working. She saw some central apneas.
My sleep doc appointment about a week ago let me know that I had 29 central apneas in the 90 minutes total that I slept. So that’s on top of the 64 apneas/hour that I would have on my back without CPAP. CPAP doesn’t seem to be working for me at home, either. AHI below 1 on an Air Sense 10 Autoset. I don’t see that many central apneas showing up, sometimes just a a few centrals and a few hypopneas or RERAs over 6-8 hours. I still wake up feeling awful, feeling a pressure feeling in my face like my blood pressure is up, I wake up feeling hot all over and being exhausted. Usually with a very hard (but not fast) heartbeat.
On Wednesday 7/1, I have a BiPap appointment at the sleep doc office. I’m not quite sure what that entails. They’re waiting on my insurance for BiPap. Does the sleep doc office usually give the patient a BiPap during the BiPap meeting or does it get ordered via a DME? What would I be going there for? The sleep doc said my settings are 9 for inhale and 5 for exhale. Normally I set my Air Sense 10 Autoset at 9cm max on APAP mode, starting pressure of 8cm and EPR set to full-time at 3. I do this for a reason. Up around 9, I puff air out of my lips. But at 8, I don’t. Usually up until mid-8’s, I don’t puff any air out of my mouth. So in APAP, it is only going up to the 9 to clear the apneas and helps me to not puff air as much. But I’ve heard that the reason why BiPap works for Central Sleep Apnea is the ability to adjust the inhale/exhale pressure more than 3 max EPR on most CPAPs.
That would make my expiration pressure 4cm at starting pressure and 6cm and expiration pressure of 6cm at max pressure of 9.
My primary care doc is about to do another MRI of my head. Had an MRI with contrast in 2018 and also a CT scan (when the sleep doc fixed my septum and turbinates). They saw nothing otherwise. Went to a neurologist and everything.
My reflexes are excessive and hyper. I have Dysautonomia and/or POTS. I get dizzy, tingly feelings on the top and back of my head, funny feelings in my stomach, random twitches all over my body. Calves, stomach and particularly the worst tingling/twitching under my chin and on each side of my neck under the jaws. Weakness feeling in my legs and calves at certain times of the day. I have clocked low blood pressure before down to 98/68. It also goes up and down rapidly and heart rate will generally appear fairly normal in the 80’s to 90’s while resting. I’m on Fludrocortison 0.1mg once per day to increase blood pressure a little bit (doc said about 8 to 10 numbers slowly). He said that basically my body is not retaining salt very well and to up my salt intake a little bit.
Specialists already seen:
Cardiologist. Full Stress EKG, Color Flow, ultrasound, etc. Said my heart is healthy.
Endocrinologist: nothing wrong with thyroid.
Primary care docs/blood work: no pheochromocytomas on the adrenal glands. Nothing too odd on the blood work to indicate anything major going on with me.
Has anyone had similar symptoms and did they improve after BiPap? On certain days, My Dysautonomia/POTS seems to go away. Or if I feel bad when I first get up and I go to work and get to working hard and lifting moderately heavy stuff all day, I feel better. Primary care doc says that makes sense because more blood flow is getting into the muscles.
At this pont, we’re trying to figure out if it is the centrals that are making me feel awful or if there is a medical problem. So far, nothing found. Odd that I slept nearly the same amount of time in 2018 and had 4.7 apneas/hour and then in 2020 I magically had 64/hour plus 10 per hour for centrals. Sleep doc says I have Complex Sleep Apnea. I should also note that on some days I don’t seem to get dizzy or barely have it and it isn’t as debilitating. Other days, for whatever reason, I’m super dizzy and feel muscle twitches all over. Also have gastro issues (not going to the bathroom as regularly as I should) and a quesy stomach some days.