I’ve been ‘tired’ for a lot of my life for seemingly no reason. Struggled through elementary school and high school. Worked out, lifted weights and tried to be active, but I was always dead tired every morning when I woke up no matter how much I slept. Still to this day, at 38 years old, I feel that every morning. I could go to bed at midnight and wake up at 1pm the next day and still feel just flat exhausted. I used to do that, too.
I had previously had a home sleep study followed by an in-lab sleep study in 2018 with a sleep doc/pulmonologist and they said I only had 4.7 AHI over a few hours, but my RDI was 18 and they didn’t recognize UARS. He wanted me to ‘try’ CPAP, but also recommended the mouth appliance that he said he uses (which messes up teeth for a lot of people). I eventually decided to try the CPAP and they said I’d have to come back for another visit to see the doctor yet again before he’d give me a prescription.
In later 2019, I convinced my ENT doc to write a general CPAP prescription. I did my research. I wanted to try an Air Sense 10 Autoset For Her (I’m a guy, buy read that the algorithm was an extra one that the regular one didn’t have) to see if I could get my settings right on my own. I found that the lowest setting I was most comfortable with was usually in the 7 to 7.4 range (anything less and I’d feel like I was suffocating) and I let the auto algorithm do its own thing and set the max to about 12 to see what it would go up to. It would never make it above 9, so I set the max to that. My numbers looked good and AHI was in check. usually 1-2AHI at most and sometimes below 1.
Mid-December 2019, I started having some issues. I was getting ready for bed one night as usual and my heart started racing. I became dizzy, lightheaded, felt like I couldn’t walk properly due to muscles feeling shaky/jittery, had adrenaline rushes, abdominal pain and all sorts of weird stuff going on. I was also peeing a lot. 3 ER visits, urinalysis, tons of blood work, checked for heart attack, checked for blood clots…everything they could think of. Had a contrast CT scan of my pelvis/abdomen. The only thing noted was my bladder wall had some mild thickening for an unknown reason. They blamed it on anxiety. I followed up with two primary care doctors, an endocrinologist for an exam of my thyroid/blood work, my doctors checked for adrenal tumors. I’ve been to three different cardiologists. One did a full Stress EKG walking on the treadmill, which was normal. My blood pressure was high in his office the day before, about 163/80. He said he believed it was ‘anxiety’ and couldn’t find a cause. I’ve discovered that doctors nowadays like to blame everything on anxiety for some reason. Second cardiologist did an Echocardiogram and it was normal. He referred me to a third coworker cardiologist who “deals with people who have symptoms like mine.” I had a Tilt Table Test for Postural Orthostatic Tachycardia Syndrome. It was negative, but when I first got there and they hooked up the heart monitor, they could immediately tell that my heart rate and blood pressure go up and down by the minute for no known reason. It could be 100bpm one minute with 120/80 blood pressure and the next minute it could be 70s or lower 80s heart rate seconds later with a blood pressure of 104/70. Sometimes my ears ring. Certain postures, like leaning over a sink to wash my hands or sitting on the toilet make me feel really odd, have increased heart rate and such. Earlier this year I saw a Gastroenterologist who did an EGD and only saw an inflamed stomach lining, but biopsies showed no cancer or bacteria. He put me on a Proton Pump Inhibitor that I eventually stopped taking after months because it wasn’t helping. I was feeling “pulsating” in my abdomen. They checked for aneurysms in the main arteries, as well.
I found another sleep doctor and had testing in 2020. Home sleep study said 13 apneas/hour, which he didn’t believe. I’m a 5’8 160 pound muscular male with no known health issues. In-lab sleep study noted 64 apneas/hour. Then we followed up with a titration study:
“During the study, there were 29 apneas (29 central, 0 obstructive, 0 mixed) 48 hypopneas 0 RERA’s. The RDI was 14.8/hour (0/hour REM, 17.0/hour in NREM, 16.83/hour while supine, 0/hour when not supine) and AHI was 14.8/hour. Time asleep in supine: 274.56 minutes. Non-supine: 37.52 minutes. The longest respiratory event was 58.5 seconds. The waking oxygen saturation was 97% and lowest recorded was 85%. The patient was recorded for 455.9 minuts and slept for 311.9 minutes with a sleep efficiency of 78.2%. Regarding sleep architecture: the overall arousal index was 22.5/hour (respiratory arousals: 57, PLM arousals: 0, non-specific arousals: 60). Sleep time included 30.3% stage N1 (normal <5%), 39.9% stage N2 (normal 40-60%), 16.8% stage N3 (normal 15-25%) and 13.0% stage R (normal 20-25%). Sleep latency from lights out was 7.5 minutes. REM latency from sleep onset was 109.0 minutes. During sleep, periodic limb movements were present at 0/hour. ECG showed a mean heart rate of 60/minute.
CPAP was titrated from 5 to 7 cwp with increasing central apneas and then BiPAP from 8/4 to 9/5 cwp. Optimal pressure was obtained at 9/5 cwp. At optimal pressure, there were 0 apneas and 0 hypopneas, AHI was 0/hour, and lowest oxygen saturation was 95%. Titration included adequate evaluation time in REM sleep and while supine. At optimal pressure the patient was recorded for 89 minutes with a sleep efficiency of 98%. Sleep was consolidated with the use of BiPap at optimal pressure. The entire raw data recording was reviewed, epoch by epoch.
Diagnosis: Obstructive Sleep Apnea Syndrome (G47.33) controlled with BiPap at 9/5cwp. Central Sleep Apnea Syndrome (G47.31) complicated use of CPAP.
Recommendation: Nasal BiPap at 9/5 cwp. The patient was tested with own Large nasal pillow mask and a heated humidifier for comfort. Patient should be evaluation by doctor to review these results or be seen several weeks after initiation of therapy in order to assess clinical effectiveness and compliance.”
I used the BiPap for a few months. 20 days into the first month and I was still having a ton of Open Airway events showing up in Oscar with a high AHI showing on the machine screen. Someone remotely changed the setting on my machine around the 20th day and moved it to 9/6. The Open Airway events went away and AHI is consistently down to less than 1 AHI on a constant basis. However, the lady working for the on-site provider that gives out the CPAP/BiLevel machines swore up and down that the machine wasn’t activated and that nobody had access to it. When I went back to the doctor’s office, she insisted that we change it back to the 9/5. She printed the results from before the change and after the change and the sleep doc told her to leave it at 9/6 because the 9/6 had better results than the 9/5 that the in-lab study came up with. So she was flustered and came back and told me to leave it at 9/6. I had never seen anyone who really wanted me to be that miserable because of one number setting like that crazy lady did.
They said my treatment is going well and that I’ll “feel a lot better” once I get rid of what’s going on now. Doctors think I have Dysautonomia/Autonomic Dysfunction for no known reason. But the third cardiologist noted that I have symptoms of POTS Syndrome, even though the test was negative for it. After the negative Tilt Table Test, the cardiologist gave me a nitroglycerin tablet while vertical on the tablet and I fainted. Blood pressure dropped down to like 98/56 and heart rate dropped to about 40-something. She said my heart rate should have increased as blood pressure decreased, indicating that my sympathetic nervous system over-compensated and is malfunctioning. They also asked if I have had symptoms of COVID, because a lot of people who have had it had similar symptoms to mine, but I haven’t.
Now I’m a year later. I’ve been having on and off dizziness and autonomic-like dysfunction for a year now. No closer to finding out anything. Primary care doc has me on 50mg Sertraline to control symptoms. He said he’s seen people who have had this before and it just came and went away after x years for no known reason.
I’ve seen some people reference POTS Syndrome on here in relation to Central Sleep Apnea and wondered if anyone knows of any study correlation that they can recommend. Can it cause POTS?
Then I also question why I have Central Sleep Apnea to begin with. My brain has been scanned. No symptoms of MS, but I have “jumps/jerks” like someone with MS. Just a singular hypnogogic-like jerk when I’m drifting asleep in a public place and jerk away. I get lots of those on buses, in the car, etc. But not at home in my bed while sleeping. I have severe, stabbing lower back pain and have since December when this all started. X-rays have showed nothing and I’m going in soon for a spinal MRI. A neurologist previously asked me if I had an MRI of the back, but nobody has been willing to do it. Could a spinal injury from my heavy lifting at work be causing my autonomic issues and Central Sleep Apnea? My intestines/bladder do not function properly, I’m peeing a lot and at very short notice, my intestines are not properly getting rid of waste as fast as they used to and I have pain below my belly in the bladder or colon area. My Gastro doc once told me that “a paralysed colon could cause those dizzy symptoms”…but then why is my color paralyzed? Seems to go back to the autonomic dysfunction and such. I’m suspecting my sleep and/or a spinal injury may be causing all of this.