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Help Need with Potentially Related Sleep Apnea Issue
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shadowmoses Offline

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Post: #1
Help Need 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.
06-25-2015 02:23 PM
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worn_out_in_lebanon Offline

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Post: #2
RE: Help Need with Potentially Related Sleep Apnea Issue
That's a tough one.

You put a lot of thought into expressing how this feels for you, yet most people will never really understand what you are experiencing.

I don't have anything to add, other than to say sorry that you are going through this and haven't found an answer so far.
06-26-2015 09:39 AM
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me50 Offline

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Post: #3
RE: Help Need with Potentially Related Sleep Apnea Issue
What doctors have you seen about this....by that I mean, internal medicine, cardiologist, neurologist, etc. etc. recently? I am curious what kind of tests that have been done like a PET scan or some sort of imaging of your brain and maybe the artery that runs through your gut or even a full body scan where they look at all things inclusive. Has anyone looked at your liver?

Do you currently have anxiety and stress? I think I would be a bit stressed if I had all of this happen, especially if it has been happening for a long time.

I am trying to give you ideas but you seem to have covered most of the bases and I am not in the medical field so it is hard for me to offer any suggestions.

I hope that someone can help you. I don't know where you are located but sometimes, when all else fails, go to Mayo Clinic. It is very expensive and they run every kind of test in the world when you go but if they help you find the answer.......
(This post was last modified: 06-26-2015 10:54 AM by me50.)
06-26-2015 10:43 AM
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nativedancer Offline

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Post: #4
RE: Help Need with Potentially Related Sleep Apnea Issue
Have you had an overnight oximeter reading lately? It might shed some light on your problems. And I wish you well on your search for answers.
06-26-2015 10:54 AM
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PaulaO2 Offline
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Post: #5
RE: Help Need with Potentially Related Sleep Apnea Issue
Could be anxiety attack. The pressure/feeling in the chest fits. As would the not sleepy but brain shuts down. Anxiety attack varies from person to person and does not always mean "OMG PANIC PANIC PANIC!".

Could be fibromyalgia but it doesn't fit enough. People with that condition get the brain fog you describe.

I suggest you see a counselor. For no other reason than to help you deal with this insanity of "What the hell is wrong with me"-ness. I also suggest you have another sleep study and/or give CPAP another try. Sleep apnea isn't just a breathing at night thing. It is a multi-system thing. Sleep is important to our brains, our lymph system, our nervous system, our muscles, etc. Not getting good sleep means those systems are getting what they need and are being stressed.

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06-26-2015 03:32 PM
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DocWils Offline

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Post: #6
RE: Help Need with Potentially Related Sleep Apnea Issue
Okay, after reading your description, two things to say: if you are cleared by your cardiologist, and there is no tightness when exercising (I am pretty certain that you must have done a stress test at the cardiologist's) then the problem is not there, and if you were checked out by a pulmonologist, and there is no sign of asthma or other pneumo related problems, that only leaves Sleep Apnoea, and the next step is getting a proper test/titration and a determination as to what sort of SA you have. Fatigue like you describe can be from various sources, but you have eliminated almost all of them, including, I am assuming from your statements, your thyroid (it would have shown in blood tests), so, short of subtle neurological problems or cardiac problems that don't show up in the bog standard tests (rare but possible) you are looking at real, basic sleep deprivation - the tightness of the chest when you get tired is a pretty classic example of that, in fact. The other possibility is something akin to Morbus Meniere, which, in certain cases, instead of presenting as dizziness, can present as a sensory overload that simply tells your brain to shut down until the storm has passed and fits your description quite nicely, especially if it is accompanied by nystagmus(rapid movement of the eye back and forth, which would be experienced as a sort of eye fatigue and maybe blur). For that you need an otoneurologist. But I really tend to direct your first to SA treatment and see if that will get you back on track - only if there is no evidence of SA at all should you look elsewhere, but I am willing to bet......

Btw, do you wear eyeglasses and is the prescription correct? You would be surprised what vision problems can do to you, as can hearing problems.

One more thing, if you really cannot get a clear answer from SA testing, ask your GP for a Full House, which is blood testing of every possible sort, covering metabolic, enzyme, BNP, hormones, tumour markers, isotypes, enzymes, vitamins and mineral levels with all the other stuff (CBC, DA, Sed rate, etc) and see if that turns up anything. It is rather expensive, and the practice of Full House testing has been discontinued in favour of more targeted testing, but if your doc is over a certain age, he will know what it is and what to write down in order to get you everything and the kitchen sick, as we used to call it. Sometimes, when stumped, that can turn up an interesting thing or two that may shed light on a given symptom.

One more thing - if you have a pulse-oxymeter, when you get your fatigue attack, take a quick reading and see where your sO2sat is (and your pulse, too - has it dropped to the low 50s high 40s?). If you have a recording type, or can borrow one, do an overnight and see if you desat in the night. If you do, then get thee to a sleep lab anyway. If you are desatting during the day, then something else far worse is going on and needs to be seen to.

Of course, I have seen at least one case where the simple problem was polyps in the nose combined with a deviated septum, which meant that the patient, a nose breather, was only ever getting half the O2 he should have and was conking out during the day but that is pretty rare. Still...... something to consider....
06-26-2015 05:39 PM
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trish6hundred Offline

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Post: #7
RE: Help Need with Potentially Related Sleep Apnea Issue
Hi shadowmoses,
WELCOME! to the forum.!
I'm sorry you are having such a rough time and I hope you are able to get tested so you can get things straightened out.
Much success to you.

trish6hundred
06-26-2015 07:55 PM
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Phillial Offline

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Post: #8
RE: Help Need with Potentially Related Sleep Apnea Issue
Thank you for your post and I wish I knew what it was because I'm in the same boat. I could have written the exact same thing. Right down to the electronics, I figured out a couple of weeks ago that I was using my phone/ipad too much during these times that somehow it was helping me stay awake. But, even though I feel like I would fall asleep, when I've tried I can't during the day. And to me it seems like the force shutdown (and I've thought of this myself too) is occuring in parts of my head, like the left side has shut down and just spinning send me back a spinning wheel. As for the chest tightness, I was told about 10 years ago that I just had acid reflux by a caridologist. I tried all sorts of dietary changes and medications but no luck. I don't get it when I exercise (I do high heart rate intervals too) but just when I feel like passing out. I have pretty low blood pressure too (100-105/55-60) so not a high blood pressure issue. I also don't believe it is stress, I did, but now, I'm not very stressed at all and I still have it.
Fast forward to last summer I started having much more severe migraines so my doc and I went through some things and we figured my poor sleep might be a problem. So off to the sleep doc. I started CPAP in November and keep hearing from people how it made an instantaneous difference, but not for me. I actually don't even mind the therapy, just wished it worked. I've got a good sleep doc who is trying to work with me, so I have a MSLT and titration study set up in a few weeks. He seems to think that during REM sleep something happens that the machine doesn't track and I think that means that my constant pressure of 9 might need to be switched to a range but i am not quite sure. I do think that it's possible that some of this is related to migraines for me, but I am hoping it's sleep apnea and I need to get the settings right. The other thing he mentioned was provigil, but he said that is a last resort. I wake up twice a night almost like clockwork at roughly the same time, so that part seems different, but I sure can relate, seems like your day to day is very similar. My wife has mentioned that my life has become very small since I avoid social situations(due to fogginess as well as migraines).
06-26-2015 11:22 PM
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DocWils Offline

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Post: #9
RE: Help Need with Potentially Related Sleep Apnea Issue
Have you seen a neurologist?
(This post was last modified: 06-27-2015 05:05 AM by DocWils.)
06-27-2015 05:03 AM
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Phillial Offline

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Post: #10
RE: Help Need with Potentially Related Sleep Apnea Issue
I haven't, but my sleep doc mentioned that he did send one of his patients to a neuologist because the apnea had caused lesions. He said he didn't think that was the case for me, but, if we can't figure this out I think he would refer me to one.
06-27-2015 07:29 AM
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