HELP diagnosed w/ apnea; still very tired; CPAP doesn't work

I am very new to this board, and would really appreciate the community's advice on my condition.

I'm in my 30s. About 5 years ago I was diagnosed with moderate sleep apnea, RDI 16.5. At the time I awoke with my heart pounding and racing thoughts, snored, had brain fog, fatigue, depression, anhedonia, a feeling of agitation, tingling, and a heat sensation in my body and feet. My upper shoulders and neck ached intensely.

I tried CPAP at the time for about a year, but it never made a difference. Ultimately, I received maxillomandibular advancement surgery. Many of my symptoms were reduced -- I still woke up, but was not nearly as agitated when I awoke; the intense pain in my shoulders and neck were reduced, my sleep was more restful. But my sleep was still poor, and all the other symptoms remained but in reduced form.

I had a follow up sleep study. Mild apnea was found with an AHI of 5.6. Symptoms are still difficult -- great fatigue, brain fog, anxiety, anhedonia, some feeling of agitation, waking up at 3 am and having difficulty getting back to bed.

For the last year I've been giving CPAP another try, trying to make it work and get rid of my reduced but still very substantial symptoms. But I am confused by how ineffective it is. Sometimes, I'm not even sure if I have apnea anymore, or if it's some other problem. Here are the facts that are confusing me:

1) I am currently seeing an allergist, who indicated my nasal passages are highly inflamed. Apparently I have strong allergies to pollen and dust. When I sleep after taking various nose sprays or a decongestant, I sleep substantially better -- maybe 20% better, if 100% was a full recovery. My mind is clearer, my mood is better, I can relax more. This seems to imply that I have apnea, or that I have some trouble getting air when I sleep.
2) On the other hand, CPAP still fails to work. CPAP is a struggle -- masks often leak and I have a tendency to be a mouth breather. Even so, if I use, say, a pressure of 7-13 with a nasal mask and a taped mouth, sometimes I can get an AHI (according to my Resmed Airsense 10) of about 1.5-2.5, use CPAP for about 6 hours and can keep leaks to acceptable levels. (I do still wake up at 3 am and cannot by any means sleep 6 hours straight, so that may throw off the AHI numbers.) But despite those low AHI numbers, I never have felt better because of CPAP, I generally feel the same, slightly worse (or substantially worse) in comparison to the situation 1) , where I don't use CPAP at all and just use drugs.
3) I also may have GERD; I was diagnosed with it pre-surgery, and it was pretty bad (I could taste the stomach acid sometimes in my mouth.) It seems better post-surgery but I still suffer from a lot of bloating, and I have started to take medications to suppress GERD.

I eat very healthy, exercise. I follow pretty decent sleep hygiene (don't use the computer late at night, try to relax at night, etc.) I'm not overweight. My workplace and family are supportive (I am very thankful for that.) I tilted my bed 3 inches.

So many people seem to get a profound benefit from CPAP, but it puzzles me that despite all my efforts, so far I get little benefit at all.

Soon I'll be getting more anti-allergy treatment (I have strong allergies to dust and pollen.) I'm still struggling with my masks, and am working on the Oracle oral-only mask, based on the idea that maybe I can circumvent a congested nasal passage through my mouth. (Full masks are hard to use; they leak, and for some reason I wake up in two hours with them and have difficulty getting back to bed.)

Can anyone relate to my experiences? Is there something that I should try with CPAP that I haven't yet done? If you have any advice or comments, they would be very much appreciated. Thank you for your help.

Do you take any meds even OTC? If so, what are they?
How many hours of sleep are you averaging? Are those hours fragmented with a lot of wake ups for any reason (mask, leaks, pain, etc)?

Have you tried a straight pressure instead of ranges of pressures/
What humidity settings have you used?
Are you monitoring your therapy with software?
What is your sleep position?
Some things you mention (like GERD) can be affected by food or drink in the evenings, too.
Lots of variables and things to experiment with to tweak your therapy.


Den

.

You mention nose sprays and decongestants; have you ever tried Breathe Right strips?

Ditto to most of Wulfman's questions - they're relevant - and a suggestion re GERD that's worked for lots here... get the head end of your bed up on 4-6" blocks and it should make a difference, possibly also help the aerophagia.

Welcome to the board, tigerbear. Sorry you had to join us.

What does it say on the bottom right corner of your CPAP machine? It should say something like "AirSense 10 AutoSet." I believe the one you have listed in your profile is wrong.

How long have you been using your current machine and pressure settings?

You may need to manage your own therapy. Get the SleepyHead or ResScan program and read your own data. Go to apneaboard.com to get info on how to change your own pressure if you need to. Get the "testing" version

Once you get SleepyHead, you might experiment with pressures, especially with increasing the minimum pressure and seeing how comfortable it is, while watching your AHI. Sometimes, I think I get some poor breathing that affects me, but doesn't show up as apnea. There are some things like UARS that don't show up that well in the data, but do affect you.

BTW, be sure to get the latest "Testing" version of SleepyHead.

http://www.sleepfiles.com/SH/index.html?TestingVersions

BAD SLEEP , awaking unrefreshed , and anhedonia/depression could be a feature of depression not just sleep apnea . Generalised unhappiness and misery can have a profound effect on sleep and cpap /MMA cant fix these aspects.

Where did you have your MMA? were you overweight or normal weight prior to surgery ?. Would be nice if you could upload pics of your pre and post surgery cephalograms

Mabutu wrote:BAD SLEEP , awaking unrefreshed , and anhedonia/depression could be a feature of depression not just sleep apnea . Generalised unhappiness and misery can have a profound effect on sleep and cpap /MMA cant fix these aspects.

Where did you have your MMA? were you overweight or normal weight prior to surgery ?. Would be nice if you could upload pics of your pre and post surgery cephalograms

Actually, many people who have been diagnosed with depression eventually found out that Sleep Apnea was the source of their problems. And, once they got on XPAP therapy, their depression went away.


Den

.

very true

GERD can be a symptom of sleep apnea (the struggle to breathe with a closed airway results in a vacuum that can pull stomach acid into the airway, and it can be the cause of apnea because the acid irritates, inflames, and swells. And often it's BOTH, a viscious circle.

So you can't ignore the GERD, but you need to be aware that conventional medical treatment for GERD usually makes things worse, not better. That's because the problem isn't too much stomach acid, the problem is too little. Conventionally, the symptom of stomach acid in the esophagus is treated with ppi's and acid blockers. But the underlying cause of GERD is too little stomach acid causing poorly digested food which ferments in the small intestine (small intestine bacterial overgrowth) and the resultant fermentation byproduct (gas) pushes upward on the gastric sphinchters, forcing stomach contents up into the esophagus.

The conventionally accepted "healthy diet" is full of grains which cause leaky gut and may be implicated in all the allergies you suffer. And the carbohydrates feed the undesireable bacteria in you small intestine. So all the symptom treatment is not going to fix the underlying cause, and sleep continues to suffer.

A functional or integrative MD. can help you diagnose and treat the GERD and probable SIBO (probabably with probiotics, prebiotics , dietary changes) which may result in a huge change in your allergies and sleep and possibly even your depression (look up "the gut-brain connection"). Treating the underlying causes of GERD (digestive and airway) will have a profound positive effect on your health.

But just throwing meds at it is not the answer suppressing stomach acid with modern meds is making things much, much worse. The modern drugs were meant for short term use only, and people have been taking them for decades. Too little stomach acid favors bad gut bacteria, depletes your body of essential B vitamins, and contributes to many diseases of modern life.

With all the sinus issues you speak if you've probably taken a lot of antibiotics to try to clear "sinus infections", and the antibiotics contribute to this problem by killing off the beneficial bacteria, too.

Btw, a GI doctor will tell you all of the above is a bunch of hooey while he's writing the RX for ppi's.

Thank you for all of your comments. I'll try to answer your questions below:

Pugsy:
The drugs I take are omezaprole for GERD and 12 hour Allegra-D to help with my sleep and congestion.
My typical sleep pattern is to fall asleep fairly quickly around 10 pm, and wake up at around 2-3 am. Sometimes it's obvious it's a mask leak that woke me up; but more often than not I'm not sure what woke me. In studying my Rescan results, I do often have clumps of greater than 10 sec apneas around that 2-3 am time period, so I presume that at those times I awoke as a result of an apnea. Afterward, I have some trouble dropping back into sleep. How difficult that is varies from night to night. If I've used CPAP and it went poorly, I will have great trouble falling sleep, as I am more agitated. On good nights, I don't feel as agitated and can at least go in and out sleep until morning. So my total sleep hours on a good night is about 4-5.5 hours or so.

Wulfman:
generally, when I use CPAP, I use auto settings for humidity. With my Oracle oral mask, I have sampled maximum humidity settings (on the Air 10, that's humidity level 8 and 86 degrees.) I am thinking about trying a higher humidity with my nasal plugs, thinking that may help with my nasal issues.
I usually use an automatically set range of pressures, and use that as a basis to adjust the next minimum pressure setting. I haven't tried constant pressures much. I guess I should do so?
I am generally a back sleeper, but I know the benefits of sleeping on the side, so I have tried to do that. After wearing a backpack and using a ball strapped to my back, I finally found that propping myself on my side with pillows is the best way. (The backpack and ball were too uncomfortable and forced me to spend too many hours on one side, which made me ache.) That said, I never have felt that the side sleeping makes a huge difference, perhaps only a small difference.

chunkfrog:
I've tried Breathe Right strips. Unfortunately, they don't seem to do much. I've also tried nasal dilators, which are somewhat helpful, but they hurt my nostrils. I've also tried WoodyKnows anti-allergy nasal filters, which I think help a bit to reduce my pollen/dust exposure.

Julie:
Thanks for the tips. I could try to prop my bed up to six inches, I currently have it at 3 (because of the way the legs are aligned at the bottom of my bed, we are worried about propping it up further, as it might get unstable.) I have even gone as far as sleep in a recliner, just to see the effect it would have. It didn't seem to have a massive effect, but of course maybe it did help some, but that benefit was canceled about by the uncomfortableness of being in a recliner.

Archangle:

I've been struggling with CPAP maybe for half a year.
The bottom of my CPAP says Resmed Air10. (Come to think of it, maybe I mislabeled my CPAP information, perhaps that's not the same as Airsense)
I am using Rescan software (just learned about it three weeks ago), which provides interesting information, although even after using it, I haven't made big gains. I use the auto settings for one night to set the pressure settings for the next night. I also use it to observe apneas and leaks. (Admittedly, I don't look much at other parameters that I don't really understand like flow limitation or flow, I mostly look at leakage, pressures set by the CPAP machine, the timing of apneas.) I've discovered the following:
1) my "best" night --which is still not better than not using CPAP at all -- I use a nasal mask and pressure settings of 7-13. Low leakage (since I tape my mouth.) AHI was 0.6. The actual pressure range generated by the CPAP was 7-8. This is what's frustrating though -- even with those numbers, one would think that I should feel a lot better, but I don't. It's not easy to achieve those "best night" numbers on a regular basis. My AHI may fluctuate from 1.0-2.5, for example.
2) When I do get apneas, they do seem to collect in clumps around 2 or 3 am, which is when I wake up (and am for some reason agitated enough that it's quite difficult to go back to bed.) For example, around 2 or 3 am my graphs show 10-20 second apneas all in a row, and the pressures slowly increasing to presumably cut them off.

Mabutu:

I am very conscious of the possibility that I have some form of depression, separate from apnea. Not a great thing to understand about yourself, but I willing to accept that as a possibility.

That said, I do believe still that my depression is sleep/breathing related. The main reason for that is my psychological response to prescription nasal sprays and decongestants. If I go to bed after using them, I wake up not only feeling somewhat physically refreshed, but definitely mentally better -- more interested in things, more hopeful. If I don't use any sprays or decongestants, I gradually become physically and mentally more worn down -- more anhedonia, more anger, more anxiety. If my depression were purely psychological, it would seem that such psychological reactions wouldn't occur. However, even with the medications, my mental state is far from ideal, which is why I am still looking for answers.

Janknitz:

I think there may be something to the GERD issue, and I do sometimes wonder whether GERD is disrupting my sleep or encouraging my apnea. I noticed recently that I seem to sleep somewhat better if I use the Oracle mask as a mouth seal, rather than tape. The Oracle mask, when sealed off, is a tighter seal than tape is. In other words, there is a sense that mouth breathing somehow makes me sleep quality worse. My allergy doctor told me that mouth breathing can cause GERD through a siphon effect, by drawing up the stomach acid. In any case, I have tried to adjust my diet, eating very low fat foods, as well as a lot of nonfat yogurt, to help with the stomach bacteria. I probably could be even more rigorous though.

From what you have all noted, I will try the following things:
1) maybe an even more elevated bed (not sure I can pull this off in the short term, not sure if my bed can take it)
2) constant pressures, rather then automatically set pressures
3) use nasal pillows, maybe with a higher humidity
4) less carbs, watch the GERD

If you have other tips or comments, or if you can relate to my story and/or have some thoughts to share, please let me know. Thank you all for taking the time to share your experiences!

My equipment:
Resmed Air10 with ClimateLine, integrated humidifier
Resmed AirFit F10 full face mask (never had much success, lots of leaks)
Resmed AirFit P10 nasal pillows (most comfortable physically, but hard to fall asleep with)
Resmed nasal mask (not sure what type, unmarked sample given; can use this the longest, maybe 6.0 hours)
Oracle oral mask (need to try more; difficulty with nasal leaks)

You can sure try a constant pressure to see if it helps reduce the wake ups. Some people find that their sleep is disrupted by the changing pressures in auto adjusting mode. It is definitely something easy and worth trying.

Play with the humidity settings to find your own comfort setting. I need lots of humidity and Den needs minimal humidity...we are all different when it comes to what makes the nasal mucosa happy. This is something you will have to figure out with trial and error.

4 to 5 hours of sleep isn't nearly enough to expect to see much improvement in how we feel during the day especially if those hours are fragmented with wake ups and difficulty falling back to sleep ....even if the therapy is perfectly optimal.
Sorting out the issues that cause fragmented sleep is often much harder than dialing in on optimal therapy.
Google sleep maintenance insomnia...take a hard look at your sleep hygiene to see if you are guilty of any of the things that are known to be bad for sleep hygiene...like me...I watch TV or use the computer right up until bedtime. I also take a med for pain that causes insomnia in me and puts other people to sleep..go figure that one.

Your meds may be playing a small part in how you feel.
The Allegra-D....the D part is Pseudoephedrine (sudafed) and is pretty much a form of speed and it can sure affect sleep quality and make insomnia issues potentially worse...look it up and you will see the potential side effects.

Common adverse drug reactions (ADRs) associated with pseudoephedrine therapy include: CNS stimulation, insomnia, nervousness, excitability, dizziness and anxiety.

http://en.wikipedia.org/wiki/Pseudoephedrine

Is it 100% of your problem...I doubt it but it could sure be a factor.
Look up the side effects for it and Allegra plain.

Tigerbear, I had issues similar to yours: mild OSA (AHI around 5) and moderate UARS (RDI around 17). Low AHI (even 0.0) was not relevant to how refreshed I was in the morning.

See if the following could be of any help:
you should not use such a wide range of pressures. That coupled with Airfit F10 was a failure for me (leaking, dry mouth). I would rather gradually raise the minimum pressure (0.5-1cm increments a day or less frequently, as tolerated) till your flow limitations are down to see whether that result in any improvement. Of course, you should not experience sleep-disrupting discomfort like aerophagia, leaks

I finally settled on a combination of a miniumum pressure (EPAPmin=9 with PS=4 to have Flow Limitations at a minimum), "vertical" mouth taping with Quattro Mirage Mask (better for leak control in my case).

tigerbear wrote:The bottom of my CPAP says Resmed Air10.

Look where this picture says "AirSense 10 Elite" on the bottom right corner of the front panel. Does yours really say "Air 10"? If so, I'd love to see a picture. Are you outside the US? Sometimes the labeling varies. If that's a label on the bottom, a picture of that would be interesting, too.

Does your machine look like the picture? Is it white or grey?

You can get clumps of apnea when you wake up for other reasons and they don't necessarily mean much. However, bad bouts of apnea that do mean something can cause you to wake up.

Janknitz wrote:So you can't ignore the GERD, but you need to be aware that conventional medical treatment for GERD usually makes things worse, not better.

I'm highly skeptical of your blanket dismissal of the current theory and treatment of GERD. Let's not forget that GERD has some long term side effects, including cancer risk.

That's not to say that there may not be a degree of truth in what you say, but I think it would be foolish to act as if the alternative explanation is a proven fact. It might be worth experimenting with and seeing if it helps you.

There may be some value in the probiotic idea, but there's an incredible amount of quackery amongst those promoting probiotic products.