Help Needed with Potentially Related Sleep Apnea Issue

-***If you're short on time, please skip down to the bold paragraphs. I'm mostly looking to see if anyone here has had similar experiences as I***

Hi all. Thanks in advance to all those who comment, and for anyone who does I would be more than willing to respond to a thread/post of your own or to repay you in some way. I'm not sure if the issue I'm about to describe is specifically related to sleep apnea or not, and increasingly I believe it may not be, but I thought this would be the best place to start looking for answers. I also plan on posting this on just about every other major health forum I can think of in hopes of figuring out what this is, so no worries if this comes up empty.

First, a brief background about me. I was diagnosed with mild sleep apnea several years back and have been using first a CPAP machine and now an oral appliance since then. After CPAP proved to be ineffective, I switched over to the oral appliance, which hasn't netted me particularly good results either. At least, that's what I had been thinking for the longest time. I won't pretend to be the best sleeper, as I occasionally wake during the night in the early AM and can't go back to sleep. Other nights I tend to toss and turn a lot in the morning hours and dream almost to the point of exhaustion. Let me be clear: I do believe I have sleep apnea and that it still needs to be treated. However, I've dealt with the traditional symptoms of sleep apnea for awhile now: brain fog, fatigue, etc, but this issue is seemingly very distinct from those. Furthermore, I still manage to get at least 6hrs of sleep every night, and usually more on the order of 7-8.5hrs. I fall asleep quickly and only get up once to go to the bathroom most nights. Although my sleep quality has been worse in recent weeks, I used to sleep for roughly 9hrs a night with little waking or tossing and turning, and yet still experience what I am to describe.

Okay, so here it is in a nutshell, as best as I can explain it. For some reason, at various points throughout the day, I develop a certain pressure in my chest, more or less behind my sternum, and this pressure can take on several forms. Most notably, it tends to cause/act as a significant source of fatigue, to the point where I feel as though I'm going to fall asleep. A typical example would be when I used to attend college and would wake up for my morning class. Let's say the class was at 10am. I would get up around 9:00 and be out the door by 9:15. While driving to campus I would often experience this feeling, and it would sometimes may driving difficult. Upon getting to class and sitting in lecture for just 15-30 mins, I would begin to experience what seemed like a narcoleptic episode. However, and I have to stress this, it is VERY different from narcolepsy, which I have been tested for and cleared of. Instead of traditional sleepiness that one would experience as fatigue/tiredness as part of the mind and eyes, this originates purely from the chest. In no way, shape or form does it feel anything normal like sleepiness, or how one would feel, say, after pulling an all-nighter or consecutive nights with little sleep. However, it does produce a eerily similar effect: during this time my eyes strongly desire to close and I simply am unable to keep them open without incredible amounts of effort. I liken it as attempting to perform a force shutdown on a computer, and it made my time in college a living nightmare, as well as in day-to-day life. Here's the catch though: despite such a strong feeling, even IF I were allowed to take a nap in my own home under ideal conditions, I would NOT be able to fall asleep. Ever. Not once have I ever fallen asleep despite this having happened to me countless times. On a related note, I never seem all that sleepy generally to begin with. For instance, when I hang out with my friends, whether it's just socializing at one person's house, going to get food, or going out to a bar, I never have problems staying awake. Mentally absent and foggy, yes, but not sleepy.

Even if I've had a full night of sleep with little in the way of waking or tossing, this has happened. It has happened whether or not I've eaten breakfast or not. It has happened whether or not I've consumed gluten. I've recorded daily notes in hopes of finding some sort of pattern for this occurrence, but it has always turned up empty. Even accounting for diet, sleep quality, exercise, and numerous other factors, not one common thread was found.

There's also another side of this pressure which doesn't have the same effect as described above, and it can happen anywhere and at any time. Essentially what happens is, this feeling will crop up out of nowhere and debilitate me mentally and psychologically (this part is much more difficult to explain and to convey to those of you who have not experienced it). Basically, when this pressure occurs, it produces several effects. It inhibits by train of thought, more or less cutting off my consciousness and my ability to initiate conversation, reason or comprehend material. It cripples my focus. It drastically alters my mood and psychological state, and not simply as a result of being aware of it. It makes it difficult to speak articulately. In essence, it produces many of the same symptoms as brain fog or fatigue would, but in a more subtle way. When in this state, I feel like a complete shell of myself, as if my mind has been hijacked by this force or at least compromised significantly. And this happens multiple times every single day for hours at a time. To be quite honest, the way in which it works is very strange. There is no grinding of the gears as there would be with brain fog. There is no overwhelming sense of exhaustion as there would be due to apnea, at least not always. I really can't explain how or why it produces the effects that it does; after all, it is just a pressure I feel in my chest. To an outside observer I may even seem quite normal even when affected by this, as I can still respond when spoken to and act normally, but make no mistake that internally it has a significant impact.

I used to think it was the work of depression, then social anxiety, then sleep apnea, or possibly a combination of all 3 because of the aforementioned effects. It would happen so often that it became just another part of my daily life that I attempted to push through or work around. Though I know there are plenty of other issues and demons I need to tackle in the long run, this is the one issue that is preventing me from doing so.

There is one important thing I have not mentioned regarding the semi-narcoleptic episodes described earlier: for the most part, they have occurred only when I am sitting down and NOT in front on an electronic device of some sort. When I am home and on the computer or in front of my TV, this does not happen. However, the latter cognitive effects still occur even at home and sometimes can be quite severe regardless. It can even be present while moving around and working. Another quick example: a few days ago I was sitting in a waiting room waiting to see my urologist. With 15 minutes of sitting I began to feel significant chest pressure even while on my phone and having a TV in the room. I became debilitated to the point of having to get off of my phone.

Now for the facts about this chest "pressure". There is no pain or tightness associated with it whatsoever; it just feels like a deep heaviness, a sense of fatigue in a more subtle way. Although it doesn't make it harder to breathe per say, it does feels like a restriction of sorts, if that make any sense. Some of you may suspect that this could be related to anxiety or stress, but I can assure you these are not possible causes. Yesterday I went to the beach by myself and the first hour or so was very relaxing. Then out of nowhere this feeling popped up and my mood instantly changed. Texting friends and thinking became very difficult. Now, I can also assure you that this is not simply a negative response to this feeling. Countless times I have tried to be positive in spite of its presence or work through it as calmly as possible, only to see the same results happen time and time again. I have dealt with this issue long enough to know whether or not it is a figment of my mind.

Out of all the issues I've deal with over the years, namely the fog, general fatigue, social anxiety, depression, and fatigue after eating, this is by far my most debilitating problem. I know that may sound hard to believe because I cannot truly convey what it is like to be in such a state, but needless to say I am desperate for answers. I've been to a cardiologist, a pulmonologist, a neurologist, a vascular specialist, a gastroenterologist, my GP on multiple occasions, a urologist, and other specialists. I've gone gluten-free for well over a month and experienced no benefit. Every blood test or exam I've had performed has always come back sparkling clean. I'm in good health and in good shape. The only "abnormal" results I've ever received were slightly elevated calcium and albumin levels. Some of the things I have been checked for in the past include hyperthyroidism, celiac, food allergies, mineral levels, blood cell counts, etc. Obviously, no one blood test is 100% reliable, but nothing out of the ordinary has been found so far. I'm continuing to see specialists in an effort to determine if I possibly have any of the following: leaky gut, adrenal issues, candida, etc.

If anyone has any thoughts on what I've described or similar experiences to share I'd greatly appreciate it, or questions of your own for me, as I couldn't cover everything in one post. Maybe this really is related to sleep apnea, but without other's experiences to corroborate what I've gone through, I have no way of knowing if this is "normal", and if this makes sense given my mild condition and history with therapy.

Hi shadowmoses,

Don't know about your pressure in the chest problem but the fact that your where diagnosed with mild sleep apneas "several" years back. You said you tried CPAP and that it was ineffective. If the CPAP didn't help I would be surprised that an simple oral appliance do you any good. And there is no way to know how effective an oral appliance is... Did you remember why they told you that your CPAP therapy was ineffective? Sleep apnea has nothing to do with how you think you slept, most people don't even know they have and think they don't have any "sleep" problem. I was one of them, I would have never expected to have sleep apnea before my sleep study, I always though I slept like a rock and I'm not a snorer so nobody can complaint! But, exept for the night trip to the bathroom, most of sleep apnea symptoms are during the day like brain fog, general fatigue, anxiety, depression, concentration problem, etc, etc.

Sleep apnea has also been known to cause heart problem like HBP, CHF, etc...

Your sleep apnea has probably getting worst and you should seriouly think to have an new sleep study.

I myself been diagnosed with sleep apnea and start with a CPAP... Turn out CPAP was ineffective and that I need a "special" kind of CPAP called ASV. An oral appliance would have been useless in my case.

Good luck in your search

I am new to this forum and first time posting anything. Recent diagnosed with osa and oxygen deprivation. Having my Cpap study in few days to test machine as visible apnea did not show up during first study. I found your thread in search on depression. I have been battling this exhaustion, cognitive decline and descent into extreme anxiety for over 3 years. I am replying to your post specifically because I have experienced the exact strange chest/sternum phenomenon that you describe. Exactly the same. Been happening for around 3-4 months now. Was told it was costochondritis, but doesn't make sense. I got chills in reading your description, fatigue that's not fatigue, stress almost panic feeling washed over, eyelids get heavy, feels like I could let my head just drop to my chest. Comes and then goes multiple times a day then doesn't happen for week to weeks , then returns...

I know people with migraines who describe it as you do (chest discomfort, inability to communicate, need to close eyes etc).

Bedsurfer wrote:I am new to this forum and first time posting anything. Recent diagnosed with osa and oxygen deprivation. Having my Cpap study in few days to test machine as visible apnea did not show up during first study. I found your thread in search on depression. I have been battling this exhaustion, cognitive decline and descent into extreme anxiety for over 3 years. I am replying to your post specifically because I have experienced the exact strange chest/sternum phenomenon that you describe. Exactly the same. Been happening for around 3-4 months now. Was told it was costochondritis, but doesn't make sense. I got chills in reading your description, fatigue that's not fatigue, stress almost panic feeling washed over, eyelids get heavy, feels like I could let my head just drop to my chest. Comes and then goes multiple times a day then doesn't happen for week to weeks , then returns...

Sure sounds like sleep apnea to me.


Den

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Have you been tested for possible irregular heartbeat? When my PVC's were worse I would feel suddenly overcome with weakness like I would surely pass out. The doc explained that PVC beats are not strong enough to circulate the blood as it should. Fortunately treating my sleep apnea calmed down those irregular beats. I've read others on here reporting that they too experienced this benefit of sleep apnea treatment. Has your doctor had you wear a Holter monitor for a while to see if it could capture an episode? My doctor had me note the time of any events so it could be compared to my data during that time frame. No idea if this is your issue, just throwing it out there to consider.

Aside from that, I would suggest you do whatever necessary to address your diagnosis of sleep apnea. Untreated apnea can cause a cascade of effects. When the health picture is not clear, it can be helpful to implement a process of elimination to see what's left to deal with after the known factors are addressed. I do want to encourage you that a failure using CPAP at one point does not always mean it is condemned to never work. About 5 months into my treatment I decided I had to quit. Felt like surely the CPAP treatment was going to kill me before the sleep apnea would. But, my apnea was so scary that not treating it was not an option. That's how I ended up here. Found out with some tips here how to optimize my therapy and have been successfully using it for about 10 years now.

Another thing is that there could be other disturbances to your sleep in addition to sleep apnea. A couple common ones are medication side effect and limb movements. But until you clear up your known issues, the waters will continue to be murky. Let us know how we can support you in resolving your sleep apnea issues. In my opinion, that's your starting point. Good luck.

As long as you are under the care of a competent doctor, and proceed with therapy, the outlook is brightening.
Your body's feedback should help keep you motivated. Keep us posted.

This forum has been a godsend. I have Ben lurking for a few weeks now. Had the poly sonography August 16, it was a month or so before getting the results. Tech on night of test said he didn't see sleep apnea and I was sure I would be back to the task of finding out what was happening to me. Been scared with docs mentioning MS, Lupus and sent to psychiatric evaluation again and again. . Finally got so fed up went to see sleep doc, pulmonologist who ordered study. Finally report came back to doc with 17 apnea so average, and more in late stages including longer than average rem sleep cycle. 43 seconds was longest. Oxygen was average 82% for night. Don't have copy of full report though I did request one, should be in mail. Have to go back for second study this weekend to try Cpap and masks. Went today in advance to sleep center and asked to have mask/ machine desensitized. So glad I did, great staff and support at sleep center and already feel less stressed about upcoming test. I am approaching Cpap that failure is not an option. I have a wonderful life and husband and refuse to see that life slip away as it has been. What I almost can't believe is that untreated OSA could have led to my current state. I was fearless, adventurous, whip smart and a very successful business owner 4 years ago. I have reached the point of complete shut down, exhaustion, brain like a swamp, fearful, anxious, overwhelmed by the smallest daily life stuff... Through I was really going crazy, like can't come back from this crazy. Is it possible that untreated Osa can bring someone that low. ? I have been apologized to by my doc for not catching this as many times as I have been a broken record...( I am exhausted, my brain isn't working, I don't function at all until noon or after....what is wrong??? Don't fit the profile I guess, I am 45, small frame, no snoring... You all are amazing. I only hope that I can provide guidance down the road to someone new once I'm on the other side.

Lots of things can go wrong, but think about it our body really, really needs oxygen, to get rid of CO2, and energy. Breathing and blood flow are how this gets done. 82% is pretty low for O2. Yes it can do what you describe and more. Heart rate too slow or way too fast, low O2, high CO2 from any cause.

Bedsurfer wrote: Is it possible that untreated Osa can bring someone that low?

Oh absolutely! You have every reason to be optimistic about how much treating your sleep apnea is going to improve your well being.

PoollQ is on track. Your brain is starving for oxygen! Is this only at night? Is it only sleep apnea?

Bedsurfer wrote:This forum has been a godsend. I have Ben lurking for a few weeks now. Had the poly sonography August 16, it was a month or so before getting the results. Tech on night of test said he didn't see sleep apnea and I was sure I would be back to the task of finding out what was happening to me. Been scared with docs mentioning MS, Lupus and sent to psychiatric evaluation again and again. . Finally got so fed up went to see sleep doc, pulmonologist who ordered study. Finally report came back to doc with 17 apnea so average, and more in late stages including longer than average rem sleep cycle. 43 seconds was longest. Oxygen was average 82% for night. Don't have copy of full report though I did request one, should be in mail. Have to go back for second study this weekend to try Cpap and masks. Went today in advance to sleep center and asked to have mask/ machine desensitized. So glad I did, great staff and support at sleep center and already feel less stressed about upcoming test. I am approaching Cpap that failure is not an option. I have a wonderful life and husband and refuse to see that life slip away as it has been. What I almost can't believe is that untreated OSA could have led to my current state. I was fearless, adventurous, whip smart and a very successful business owner 4 years ago. I have reached the point of complete shut down, exhaustion, brain like a swamp, fearful, anxious, overwhelmed by the smallest daily life stuff... Through I was really going crazy, like can't come back from this crazy. Is it possible that untreated Osa can bring someone that low. ? I have been apologized to by my doc for not catching this as many times as I have been a broken record...( I am exhausted, my brain isn't working, I don't function at all until noon or after....what is wrong??? Don't fit the profile I guess, I am 45, small frame, no snoring... You all are amazing. I only hope that I can provide guidance down the road to someone new once I'm on the other side.

Make sure you get a fully-data-capable machine. Virtually all APAPs are data-capable, but don't let them give you a model that has the words "Escape" or "Plus" in the model name. One qualifier is that some Philips/Respironics machines have "C-Flex Plus" as a feature.......and if it's a "Pro" model, those are OK as they're also data-capable.
I know, it's confusing, but this has been going on for years with these manufacturers and the model/feature names.

Another thing is that ALL CPAP machines.......from the lowest priced models to the top end APAPs are covered by the E0601 insurance code. So, I would suggest getting the top APAP (Auto) as they have more modes and therapy options.

Keep reading and asking questions before you get the equipment.


Den

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