Detective work needed when we don't feel the good numbers

I was going to put this in another thread as a response to someone who is unhappy with their cpap therapy because they don't feel any better so maybe they feel it is all a waste of time and want to chuck the machine out the window.
Then I decided to compose something I have had on the back burner of my mind for quite a while.

How about a thread of common thoughts from the forum members when we get the post from the new about "how long does it take to feel the miracle"...or " I have been at this for 3 months and I feel worse" or "I have been at this for a year and just don't see any improvement". We get the same questions over and over and the answers are always pretty much the same.

I just googled Sleep disorders...http://en.wikipedia.org/wiki/Sleep_disorder
so just from this one link note all the different types of sleep disorders. Sleep apnea is just one in a long list..
CPAP/APAP therapy pretty much works directly on the sleep apnea part of the list. It doesn't do much for the other stuff that is not related to sleep apnea.
So we can feel like total crap from any number of other sleep disorders besides sleep apnea but we put all our hopes in the cpap machine fixing all our problems.
The cpap machine does a very decent job most of the time with the sleep apnea part of bad sleep but it isn't worth a hill of beans fixing bad sleep that is unrelated to sleep apnea.
If there are other possible factors involved with bad sleep besides the sleep apnea...there's a real good chance there won't be much improvement seen in how someone feels no matter how good the reports and hours of sleep are.

We want all of our crappy feelings to be totally related to sleep apnea and have the machine work its magic and fix all our bad sleep problems while fixing the sleep apnea portion. That's an unrealistic expectation and we get so down in the dumps and want to quit when we don't reach it.

Add in the fact that there are also other factors that affect how we feel...physical health...pain...meds ( I love this one because some meds side effects are the very ones people complain about but they won't or can't change)...bed comfort...external forces out of our control...and a long list of stuff that needs to be evaluated from hormones to whatever....need to get the doctor to help do some of the detective work because there is a lot of it.

It's a LOT of work trying to sort through all the other potential culprits for someone feeling like crap despite stellar cpap use and reports. It ain't all about the numbers....it would be so simple if it was.

So assuming someone has been on cpap therapy for several months and the data all looks good but they feel like crap...what all do we suggest they should do?
My first thought is start working on a very thorough physical to eliminate potential health problems messing with things.
Take a long close look at any drugs/meds a person might be taking. Almost all anti depressants will have a fatigue side effect a long with drowsiness and often sleep problems....look at med side effects really close.

I am tired and going to bed soon....
How about other ideas that we tell people who aren't satisfied with the status of things despite the reports looking like we should feel like running a marathon when in fact they barely want to get out of bed????
Ideas or thoughts anyone?

I haven't even yet googled "fatigue" to get the list that can cause that symptoms...that's going to be huge list.

Pugsy... what I read here for the most part is: suck it up, try a different mask, keep trying, do or DIE, it's up to YOU, do ya wanna DIE; seldom do I read anything else here. At this point I'm beginning to wonder if there is anything else . As you said, the answers are pretty much the same...

Pugsy,
An excellent direction. Maybe you could also call it "Good numbers, but feel like crap." I have done, as we all have, extensive detective work on non OSA related issues and have a ton of material--mostly blind alleys regarding fatigue, but a winner or two. So I'll kick it off with a tip I recently learned from my endocrinologist and then my urologist. My endo noticed I had low testerone on a recent blood test (low 300's). I commented that I have had low T for some time, but Androgel did not work for me. He suggested testerone shots and 24 hours after the first shot I felt better, not great, but better. Evidentally, according to both docs, the gels do not work with some patients. BTW my urologist won't even suggest the gels only the shots. So if I add up the TRT, along with the correct mask, and a million other things they start to add up. Did not mean to get off on a tangent, but I too was one that thought the XPAP was the magic bullet. A great chess player once said that winning was about the accumulation of small advantages. It's been over a year now but in the last 4 weeks there has been a positive difference.

ems wrote:what I read here for the most part is: suck it up, try a different mask, keep trying, do or DIE, it's up to YOU, do ya wanna DIE; seldom do I read anything else here. At this point I'm beginning to wonder if there is anything in the middle. As you said, the answers are pretty much the same...

I know what you mean. There's a place for suck it up buttercup and there is a place for hand holding...we have lots of members here that will cover both those support areas. I avoid those discussions. I am technically oriented and not emotionally oriented (unless you know who pisses me off). So suck it up or patting on the back is best left to those that do it well. I don't.

My thoughts for this thread are for the people who seem to adjust to cpap therapy well...no huge problems with masks or leaks....AHI looks good....so the sleep apnea appears to be well treated at least on paper but they don't feel the good numbers and we wonder why they don't. Obviously something else is a mitigating factor but finding out what it is can be quite a job. So assuming that cpap therapy is optimal..what can be offer in the way of ideas for other avenues to have checked out?
We say get an extensive physical from the doctor but what would people recommend as part of an extensive physical work up. More specific thoughts is where my mind was wanting to go.

You still have headaches....what can be done to try to figure out the cause of your headaches? If you didn't have OSA and didn't need to use the machine what do you think the status of the headaches would be? Do you think they are related to the OSA?

Do people know the difference between fatigue and sleepy? I think a lot of people think they go hand in hand and they don't always.

So here's a hypothetical problem....My reports are to die for good on paper...last night I had a grand total of 5 events in 7 hours...3 centrals...1 obstructive and 1 hyponea. Maybe a couple of minor wake ups....once I was dreaming about big fat copperheads in my house..ugh. Most of my reports don't point to anything exciting. I use auto adjusting mode mostly but I spent 3 months with straight bilevel mode and there was no real difference in how I felt in the daytime...my main complaint would be lack of energy...not really fatigued and not needing a nap....just not much energy....so what would people tell me if I presented with this and told people that "this therapy isn't helping my fatigue and I am just going to give up?" Tell me specific things that you can think of that I might want to have checked out medically. That's what I want to see in this thread. No hand holding and no suck it up buttercup and no telling me to try a different mask because I love my mask. I am looking for ideas outside of cpap / sleep apnea that might account for crappy feeling.

So what I was asking for from veteran forum members who have seen a lot of stuff....what do we offer as ideas along the lines of what else can we suggest that these people, like my example above,..can look into to maybe finding another culprit causing the crappy feeling. The list of culprits for crappy feeling is long and much of it has no bearing on sleep apnea.

So John or Jane Doe comes to the forum and has software reports that most of us would die for and say they sleep well, bed is comfortable, minimal wakeups yet they feel crappy...where do we tell them to look outside of sleep apnea related ideas? I can think of taking a hard look at meds and possible side effects...also hormone levels...vitamin D levels..thyroid levels...bed comfort...what other ideas can we tell them where to go looking for answers?
Maybe it just is going to take the "give it time...and that may mean A LOT of time" before expected results will be seen but I feel that it is silly to waste a year "giving it time" and not investigating other possible culprits.
I am looking to consolidate ideas for looking at the outside of sleep apnea culprits for feeling like crap.

I'll answer your direct questions to me tomorrow.

I do see where you are going with this, especially an extensive physical examination. This brings up a different set of problems. Not everyone has good insurance or the means to have this done. Where do these people go from here? I have good insurance. My excuse is first where to start and second do I even want to begin what could possibly lead me into a hospital to have 12 zillion tests? Or, do I just stop using VPAP and go on with my life?

I'm tired too and not thinking clearly. More later.

PS Yes, I do know the difference between fatigue and sleepy.

My thoughts for this thread are for the people who seem to adjust to cpap therapy well...no huge problems with masks or leaks....AHI looks good....so the sleep apnea appears to be well treated at least on paper but they don't feel the good numbers and we wonder why they don't. Obviously something else is a mitigating factor but finding out what it is can be quite a job. So assuming that cpap therapy is optimal..what can be offer in the way of ideas for other avenues to have checked out?
We say get an extensive physical from the doctor but what would people recommend as part of an extensive physical work up. More specific thoughts is where my mind was wanting to go.

I can give one example. My mom was using her machine, had been for years, but never really felt any improvement. She figured it was due to medications, and that is probably part of it. But without full data, there was no way to see that she was having a low number of events, but those events were LONG.

So, for people without full data, that is my first thought. They need data to actually see if they were getting good treatment. Rule that out and then move on to other possibilities.

Do people know the difference between fatigue and sleepy? I think a lot of people think they go hand in hand and they don't always.

Good point. For me, it when I feel tired, it is usually fatigue. I don't really feel sleepy, but I do tend to be tired.


For me personally, I have excellent numbers, mostly below 2 for ahi. And I feel better overall. But I also feel like I have been jinxed this past summer. I have had a lot of issues come up that have made it challenging for me to use my machine all night, every night. 2 weeks of coughing. Later 6 weeks of coughing. Over 3 months of leg pain, though that is finally better. It kept waking me up as I would roll over or adjust. Last week, I had my wisdom teeth out, and I had to sleep with an ice pack over my mouth the first full night and parts of other nights. I am a mouth breather, so I was unable to use a full face mask and the ice pack at the same time.

So, with that experience, I can see lots of things that can sabotage cpap treatment. I also take several medications, and I have no idea if they have any effect on my sleep or not.

For me it's stress...I just went through a stressful few days, and my AHI shot up for about 3 nights, the amount of sleep I was getting went down, and I felt bad until I got a few things resolved. Luckily, most of it was short-term, so I think my AHI was back to 1 last night, but I can see that stress has a big effect on sleep and sleep apnea treatment, at least for me. And if treatment isn't seeming to work despite having accepted all the stuff that goes with the treatment side at some level, I think that sleep apnea treatment itself becomes a source of stress, which affects the treatment, and so on.

Personally, I can deal with a couple of long term stressors, but then throw in 3 or 4 more, and things start to fall apart. I guess what I'm suggesting is that if one is already under stress, and the stress of "no CPAP miracle" *smile* is added, that can prevent a good outcome.

Hi Pugsy,
Like you I am not much good at the hand holding etc. side of things. Now, when I look at my health, there are any number of issues that make up a part of either the the good or the bad side of 'health'. If anyone with sleep apnoea thinks that the CPAP machine is going to be the magic bullet to fix up our 'health', then they haven't done enough to learn about their issues. Perhaps supplying these people with a list of good websites for different things would be sufficient rather than trying to put it all in this forum. Your ideas are good but all consuming and then!!!!

Lovely as it would be to be able to give every unhappy person all the answers they need I believe it would be better for them to investigate these things themselves. I don't know about the USA but in Australia there are many places you can go to to discuss these issues one on one. health is such a very very large subject it would be almost impossible to give out info to people you only know from what they post.

As would be the case with many if not most of the people on this forum the Internet has proven to be an absolutely godsend when it comes to information, how did we ever do it before?

Before I sign off could you please tell me if the Sleephyhead Tutorial is up and running, I haven't been able to find anything much yet?

Congrats for all the good work you do on this forum, I am not sure what they would do without you. Have a good night.

I think we need to emphasize the importance of judicious tinkering.

For instance, I fell much better if I up my minimum pressure a bit above where the S9 AutoSet is happy and gives me a good AHI.

I just had a little thing happen that shows how pain effects your AHI. My knees are totally shot, bone on bone and were doing knee replacement on the right knee Feb. 11th. then the left later. I take 30 MG amitriptyline, 100MG Ultram and 2 extra strength Tylenol when I go to bed. It wore off about 2 AM and then my knees would ache the rest of the night. My AHI would be between 2 to 3.5. My Doctor gave me some Voltaren Gel and I rub 4 grams on each knee before I go to bed and my knees don't ache anymore during the night and for the 3 nights I've done this my AHI has been .8,.6 and .2. it's amazing what a little bit of gel will do. So I can see where you can have good numbers and still feel bad the next day. A lot I think depends on how many medical problems you take to bed at night with you. I've got to where I can't sleep with out my machine and finding the right mask is crucial for good sleep.

Gillian wrote:Before I sign off could you please tell me if the Sleephyhead Tutorial is up and running, I haven't been able to find anything much yet?

Not really. I just haven't had the time to do more than what you see in my signature line...the link for the tutorial under construction. My strengths are in addressing specific questions and composing responses to those questions. I suck at composing general stuff in hopes of covering every conceivable question. I tend to write novels even for short specific questions...a general tutorial would end up being the size of "War and Peace" and peoples eyes will glaze over.
It's extremely hard for me to keep things short and sweet and still convey what I am wanting to explain trying to think from a newbie point of view. English composition was at the bottom of my list of things I did well in school.

Mark has most of it on his User Guide...a bit technical for some people but most people if they would read it they would know how to use SleepyHead.
Actual data analysis...that is a different story and again really hard to do because there is such a wide range of normals.
People seem to want to be able to plug in so and so numbers and use those numbers as a guideline. It's a bit more difficult to do it that way because there are so many variables. I don't like to use a particular set of numbers...I like to look at the whole picture and try to get people to understand the whole picture.

I strongly feel that I have an additional sleep disorder than just plain OSA or more likely UARS.

While xPAP has helped me - especially the insomnia stages (awaking in the night prior to the machine, ect...), I still exhibit emotional swings and days more recent that I just don't feel my best like I used to feel better on xPAP.

According to my ZEO, I still don't reach DEEP SLEEP stages efficiently and productively to the levels I should be at per my age and this is also indicative of my prior Sleep studies which always suggested the same. (Staying in stages 1 & 2) and very little if any beyond.

As you all know via my other threads, I proactively watch my data and am still seeking that "Sweet spot" as my numbers still fluctuate some with "centrals" seemingly sneaking in at both low and higher pressures (say a range of 7 - 17)... Doesn't matter where the pressure stays or reaches during the night.. Still more centrals than obstructives or hypoapneas (<-spelling?).

I strongly believe if I could once and for all tackle and find out what my sleep disorder(s) are and treat them properly that my mood and overall physical well being would even improve more.

Again, with that all said, I do believe I am still benefiting post xPAP and will continue to push on with it no matter what.

Gillian wrote: Lovely as it would be to be able to give every unhappy person all the answers they need I believe it would be better for them to investigate these things themselves. I don't know about the USA but in Australia there are many places you can go to to discuss these issues one on one.

Actually we don't have much in the way of support sites where we can physically go to discuss common problems. At least not around here where I live. There isn't even anything local for cpap support. My DME talks about having a meeting but in 3 years has never really done it. There might be more of those types of support groups in the big cities but there isn't anything available in my area within 200 miles.

I don't want to give someone all the answers....I do want to encourage them to do their own investigation and education.
That's what I was trying to get around to in this thread...give people ideas on other avenues where they can look to see if maybe their lack of "feeling the good numbers" has some other basis.

If someone has a specific cpap or mask or data issue...those are pretty easy to offer ideas on how to maybe fix those issues...like different mask, mask liner, slight pressure adjustment or whatever. It's a lot more difficult to offer ideas on where to look for "not feeling the good numbers" when we look at the reports and absolutely nothing is screaming out "fix me". Doctors and DMEs will just tell people "give it time" and that is all well and good and sometimes that is what it takes but sometimes it isn't. I don't like sitting around giving it time when I can be doing something to maybe help figure out what is going on. Never know but we might stumble on to something that makes a big difference..might not but if we don't try...we sure won't.

What annoys me is that people take their one symptom "I still feel crappy/fatigued" and assume it is not working. That is just one symptom that not even everyone has. In the meantime the rest of their body is getting the benefit from xpap therapy but because of this one issue it is seen as "Not working".

AHI is only one of the things to look at. If it seems to be "not working" then you need to test further, first with an oximeter and a Zeo or other home testing device. Are you getting all the sleep stages, are you waking up due to a variety of issues (pressure changes, bio rhythm, RLS ect) ?

Then you need to look at ALL your meds including over the counter. Antihistamines for example - many people use them as sleep aids - they make me sleepy but I wake up continually when I take them. If I take anything with them in it my AHI is fine but I feel like crap in the morning.

Other possible illnesses. Get your self tested for diabetes, thyroid, liver & kidney function, gluten, food intolerance, menopause, B12, iron, D, the list is very long.

Also many Boomers were exposed to hepatitis in the past and don't know it. If you are a boomer or older you need to get tested for it. It will hide for decades before coming into the open.

Another possibility for Boomers is polio. You could have had it and only felt you had the flu as a kid, it could also be lurking there and ready to destroy as phase two.

Environmental allergies/sensitivities. We live in a toxic world, at some point you body says enough and starts to react to all sorts of things in strange and peculiar ways. Inflammation is a side effect that is now being seen as a root cause for all sorts of nastiness. Inflammation is your immune system out of control.

Great thread!

I'm one of those who has now spend a little over 2 years unraveling my sleep issues. Getting my SA under control was just the FIRST thing. Fortunately, even though I had an extremely difficult six-month adjustment period, I now love it and can't think of sleeping without it. But that doesn't mean that I sleep great every night.

In the past two years I've dealt with hormonal issues, sleep fragmentation, pain (hips needed replacing), and surgical aftermaths (have had both cancer surgery and hip replacements). HOWEVER, now that all of that is behind me, I'm discovering that with the reduced pain, my sleep isn't as fragmented. Tweaking my diet some more is also helping...all grains and sugars have been completely eliminated and since July, I've been doing 85% fat, 12% protein and 3% carbs and that has helped my sleep too. Dunno why, but it has for me...maybe because my blood sugars are more stable and normalized now.

In between, I've normalized my body more with periods of using melatonin, tryptophan, magnesium, potassium, etc. etc. etc. Not all at once of course, but over time and monitoring the results using Zeo and my xpap. At first, I was getting almost NO REM or deep sleep and a period of using melatonin and tryptophan in various dosages seem to fix that. Now I usually get good amounts of both REM and deep and neither melatonin or tryptophan help or work any more. It's an ongoing process of change. Something will work for a while and seem to "fix" something, then another issue comes to the surface and I've had to figure it out and try to fix it.

At the beginning, I was so hoping that all I needed was an xpap machine and I would immediately find that decades of severe fatigue would be erased and I'd wake up feeling great every morning. Whatta joke! But with data from my Zeo and xpap, and continuous research, reading, and experimentation, I'm now starting to feel better. It's like an onion that we need to keep unpeeling and the layers/causes will be different for each one of us.

Doctors and DMEs do a great disservice to patients by leading them to believe all fatigue/sleep issues will disappear with xpap compliance. Not so. It's often just the FIRST step, not the LAST step. I'm envious of those who immediately feel better, but I'm grateful my OSA is under control and I've been able to work on solving other underlying issues.


Weezy