CPAP numbers look good and still feel AWFUL daily

[starrynight40]

37 year old male. 5'8, about 155 pounds, fairly muscular and fit. Active job in a warehouse lifting/moving stuff all day.

Over a year ago, an in-lab sleep study showed 4.7 AHI and 18 RDI over 2.75 hours of sleep. A bunch of unclassified RERA's (about 50) were detected. My sleep doctor said I didn't have sleep apnea because I was 0.3 AHI from the 5.0 required to diagnosed mild sleep apnea. He joked about my 18 RDI saying, "Haha, good thing you have an active job, if you had a desk job you'd be falling asleep in your chair!" I actually do. I can't drive because I feel like my energy at any given time of the day is just not there. I'm not focused enough. I work in a warehouse picking orders and I kind of kick myself some days because I grab the wrong thing and have to correct myself because I'm so tired and not paying attention. The last time I drove, it was horrible and I was unfocused and felt like a danger on the road, so I stopped. I wake up dead tired in the morning, then as the day progressed, my energy level is there and I'm running circles around people, even if I have certain days where I can't focus. I do have some "good" days when I have more energy. Then I get off from work, go get the bus home (30-45 minute ride back to the station) and within minutes of sitting down on the bus about 3 or 4pm I'm nodding and popping awake every minute or two with hypnogogic jerks aka "sleep starts". I do that for 10-15 minutes and then I'm up and alert again, for some reason. Very embarrassing to have people on the bus staring at me when I keep jerking awake. It has become such routine that when I pop awake, I instantly look at my phone or make up a reason as to why I made the sudden movement (e.g. phone vibrating, acting like I have a call, etc.).

Right after the in-lab study, the sleep doc asked if I wanted CPAP. I didn't know much about it at that time and I declined only because my ENT doctor did MRI of the brain and CT scan of the face and wanted to do deviated septum and turbinate reduction surgery. My breathing wasn't very good before that and it took seconds for me to inhale and exhale a single breath. The surgery helped me breathe more freely and quickly as I should normally. However, I later requested my own in-home sleep study online (no doc referral required) and it mail-ordered from a sleep clinic in another state. 5.2 AHI, mild to moderate sleep apnea. One apnea showed 85 seconds. Average hypopneas and apneas were 20-30 seconds. I have a personal SP02 monitor. My results over multiple nights of wearing it and also the results of the home sleep study (mailed back and reviewed by a sleep doctor who interpreted results) showed that my oxygen levels do not drop below 93%. Including with that 85 second apnea. I remember one night in particular where I woke up and I felt tingling from head to toe, but that's not a regular thing for me. Home sleep study showed that my heart rate goes as low as 42bpm and up into the 90's, but that's of course before CPAP.

By the time I had healed from surgery months later, my sleep doc wouldn't give me a prescription for CPAP. I asked my ENT doc for one and she was floored that the sleep doc was acting that way. She wrote a general prescription of 4-20 pressure just to get me the APAP (I asked specifically for a ResMed Air Sense 10). I used the home sleep study test, which fortunately registered 5.2 AHI, to get my ENT doc to write the prescription based on it. I had done months of research. I let the APAP setting help me out with figuring out what my general max pressure was (I think I set it initially for something like 12cm) and I figured out my minimum pressure by starting with 6 and adjusting it over weeks. I found the sweet spot for starting pressure that didn't make me feel suffocated. My max pressure is 7 to 8cm. I'm currently trying both of those combinations because I see just one or two centrals showing up each night over 8 hours. I'm using Nasal pillow masks - Airfit P30i and Dreamwear nasal pillows. Both the in-lab (2.75 hours) and home study (about 6+ hours) showed that I do not have central sleep apnea. I think it is simply the pressure causing it the one or two that I see some nights. Other nights I have 0 central apneas.I tape across my lips with paper tape, otherwise my AHI will spike due to puffing air out of my lips.

My typical AHI each night is now between 0.0 (I have literally gone down to flat 0 AHI with the Dreamwear mask, but the air flow seems lower and it feels harder to breathe through it than the P30i mask) to about 0.8 and sometimes 0.5. That's over an 8-hour night on average. Usually a couple of obstrucives show up and one or two centrals on certain nights. Other nights, no centrals at all. Sometimes maybe one hypopnea or a random single RERA will show up. I use Oscar to review my results.

I've been using the Air Sense 10 in CPAP mode because camera footage (I'm recording with an extra night vision camera for my home security system) shows that I jump awake and look around at various times of the night in a panic, as if I don't know where I'm at. Then I look relieved and go back to sleep. Sometimes I would grab at my mask simply to see what was on my face, I guess. I think the ramping up and down all night in APAP mode was waking me. I really like the CPAP mode.

I'm including an attachment of my recent results in Oscar. There are days when I feel little odd feelings and "flutters" in my chest for some reason. No known heart issues. I'm 37 and suspect that I may have had sleep-related issues as far back as my early teens or maybe even before that. Sometimes during the day I feel like I have to remind myself to breathe a few times, but it also feels like I'm just "too tired to breathe" at times. Could just be a result of my lack of sleep over such a long period of time or whatever potential health issue may be going on (maybe something low, etc.). I've been on CPAP for a long time now. I have numbers that many people envy and my pressure isn't that high to clear my apneas. Why do I feel like garbage after months of using it? As you can see, my leak rates are pretty decent. This is with the P30i mask. If I would have used the Dreamwear mask, it would have been between 0L and 4L leak rate.

I'm planning to check with a primary doctor soon and get some blood work. I fainted for 15 minutes during a previous blood draw last year, before sleep apnea was found. I had never done that before. I just went away while lying on the table and got so sickly feeling. I woke up to 60/60 blood pressure and 52bpm heart rate. All of the staff were in the room focused on me, with some freaking out that my blood pressure wasn't going back up. I was shaking all over. It eventually went back up after they found some crackers and a little juice box to give me. They had spilled blood on my clothes and I was shaking all over. I had a very light breakfast that day and had walked for miles on low sleep at work, so I could have just been really exhausted and/or had low sugar (I am not diabetic). They got enough blood to test for thyroid issues and it was fine. A day or two later, another clinic drew blood and did a lot of tests, including a second thyroid test. Blood work all came back normal then. I have always been a very "jumpy" person in life, neurologically. My reflexes are stronger than most people tend to have, for some reason. Like I get a double reaction. If I'm carrying something in one hand and nearly drop it, my whole body reacts in an odd way. If something brushes against my head, my whole body (particularly muscles in the ab area) jerk me in an unnatural response. Very odd symptoms. Doctors before were puzzled. The neurologist said I had healthy reflexes for someone my age, leaving me even more puzzled. I don't have enough energy to even do a simple workout on my off day when I've slept 8 hours on CPAP. That's how bad I feel. I feel like I might have some sort of palpitations or something on some days, though I also drink caffeine (sometimes 1-3 cans of caffeinated soda per day to stay alert and awake).

Humidity settings are fine, I'm using a ClimateLine hose. I feel like I sleep really well. I'm wondering if something else is going on with my body. I'm attaching some results. The "skip" in the later morning is where I got up shortly to let the dog out to go before I went back to sleep again.

[Julie]

Why are you using plain Cpap mode when you have (apparently) an auto machine?

Are you taking any meds now?

[palerider]

There's an easier way to present the data:

wiki/index.php/Sleepyhead:Organize

Your AHI looks great, yes, but there's more to sleep disordered breathing than just the AHI... your flow limitations are pretty active, and that means you're fighting for air.

https://www.youtube.com/watch?v=-gie2dhqP2c

I'd raise the pressure, or better yet, set the machine to autoset mode, min 7, max 20, and see what it does, and how you feel.

[kteague]

In regards to your home security video, do you have any issues with feet or leg movements that would indicate periodic limb movements?

[zorki1c]

I've been on CPAP six years. I have tried the auto mode several times but always get better results on straight CPAP with no ramp. My AHI with P10 or P30i masks, normally range from .1 to 2.5. I have long been at the point where I can't sleep much unless I am on the machine. That being said, I can't honestly say I ever wake up feeling "refreshed." I'm usually ready for a nap by mid afternoon. Last year I discovered I had AFIB. An ablation procedure took care of the for the time being but I still never feel really refreshed. I am 74 and don't know anyone my age who will claim the sleep like a baby. For most of us older folk we just have to come to grips with the fact that a good night's sleep is a rare event that should be treasured.

[Miss Emerita]

Having a few centrals is inconsequential, even if they happen every night, so don't worry about that. And I do know that fainting during a blood draw is not uncommon; here is an informative article directed at the technicians who draw blood:

https://www.phlebotomy.com/pt-stat/stat ... ml#Feature

But your overall condition sounds as though it needs more medical investigation. Did you have a chance to tell the neurologist about your startle reflexes or show him or her the footage of your night-time wake-ups? Dr. Google is no substitute for a real doctor, but I was really struck by ways in which your descriptions line up with "startle syndromes." I was able to access an article via a university; it is otherwise restricted, so I've copied and pasted a little of it below. You can also google "startle syndromes" and get more information that might make a visit with your doctor more productive.


Startle syndromes are paroxysmal and show stimulus sensitivity, placing them in the differential diagnosis of epileptic seizures. Startle syndromes form a heterogeneous group of disorders with three categories: hyperekplexia (HPX), stimulus‐induced disorders, and neuropsychiatric syndromes. HPX is characterized by an exaggerated motor startle reflex combined with stiffness and is caused by mutations in different parts of the inhibitory glycine receptor, leading to brainstem pathology. The preserved consciousness distinguishes it from epileptic seizures. Clonazepam is the first‐choice therapy. The stimulus‐induced disorders cover a broad range of epileptic and nonepileptic disorders, and distinguishing the two can be difficult. Additional information from electroencephalography (EEG) and video registration can help. Many stimulus‐induced disorders now have an identified gene defect. Antiepileptic drugs, including benzodiazepines, are frequently mentioned as the best treatment option. Neuropsychiatric syndromes are on the borderland of neurology and psychiatry, and their etiology is poorly understood. These syndromes include startle‐induced tics, culture‐specific disorders such as Latah, and functional startle syndromes. The electromyography (EMG) startle reflex in these syndromes is characterized by variable recruitment patterns and the presence of a second “orienting” response. Treatment options are limited, but urgently required. In the clinical setting, the patient’s history and a (home) video recording together with genetic and electrophysiologic testing help to classify these challenging disorders.

Paroxysmal movement disorders that are induced by a startling stimulus, also known as startle syndromes, are diverse and can resemble epileptic seizures. Clinically, startle syndromes can be divided into three categories: hyperekplexia (HPX), stimulus‐induced disorders, and neuropsychiatric disorders. The normal startle reflex, a common physiologic mechanism, consists of a symmetrical generalized myogenic flexor response with a classic rostrocaudal recruitment activation of different muscles, which can be elicited by unexpected stimuli.