Six months in: Still feel awful

karamansongul wrote:PLEASE GOOGLE THE WORDS AND YOU CAN FIND THE SITE. IT IS NOT ALLOWED TO WRITE WEBSITE. UNFORTUNATELY, YOU VITAMIN D LEVEL IS NOT NORMAL RANGE. IT SHOULD BE BETWEEN 60-80.

Thank you for shouting your expert medical opinion. I'm sure you're an MD or an MPH?

drfaust wrote:

suzpigott1 wrote:I concur with others who have recommended the Phillips Dream Station. I love it for its flexibility and have had no problems with it.

My DME only dispenses the Resmed Airsense 10 Autoset. If I want something else, I have to pay out of pocket. I live in a small town in Illinois, with only one DME.

I'll be moving to Seattle soon, so there will be more choices. But it's not the actual machine that causes me problems. The Airsense is practically silent.

It's the irritation from the mask that bothers me, and the chinstrap.

Don't hold out any hope for the DreamStation over the ResMed. Both are good machines for treating UARS and OSA.

karamansongul wrote:Please reaD THIS.
drgominak
/sleep/vitamin-d-hormone

Dr. Gominak is just a vitamin quack. She has built a profitable business on it.

drfaust wrote:

robysue wrote:Does your sleep doctor recognize UARS as its own problem----separate but related to OSA?

Yeah, he does. But he says that the treatment for UARS is still CPAP, so that CPAP is the right way to go. I brought up the point of the machine not documenting the arousals, but he said he's sure that given the low AHI, that the UARS is also being treated.

Yep, CPAP is the standard treatment of UARS, but a low AHI may or may not indicate that the UARS is well treated. That's why you want to look at your Airsense's RERAs and also the Flow Limitation curve. Since the AirSense is recording very few RERAs, that's a good indication that the UARS is being treated adequately. How busy is your Flow Limitation curve? Could you post a screen shot of a typical night?

drfaust wrote:I realize that the Airsense can try to categorize some sorts of events as RERAs, but without recording the actual EEG, it can't know, and based on sleepyhead data, it (almost) never records RERAs for me.

Real RERAs are a series of breaths that have evidence of increasing respiratory effort, which typically shows up as a flow limitation (i.e. distorted inhalations) and they end with an EEG arousal. But real RERAs also typically have what are known as "recovery breaths" at the end of them: When you arouse from the RERA, you typically take a few larger than normal breaths and then settle back down into normal sleep breathing. That's what your AirSense is looking for when it scores RERAs: A series of breaths that have increasing flow limitations that end with breaths that are characteristic of recovery breaths.

drfaust wrote:

robin wrote:It is very likely that your machine is not scoring very many RERAs because at your current pressure, the RERAs have indeed been eliminated. But your sleep has not improved because of other sleep problems, including spontaneous arousals (i.e. non-respiratory effort related arousals), some of which may be triggered by your discomfort caused by the CPAP, and nightmares.


It sounds to me like your respiratory related arousals have disappeared, only to be replace by a whole lot of CPAP-related arousals.

Right. I tell him this and he makes a sympathetic face and says to keep at it.

Been there, done that and have been fired by two doctors (and fired a third) who just couldn't move beyond, "You should feel better." In all seriousness, however, that first sleep doc had a good PA who worked with me for almost 10 months before I was fired as a patient. The PA was the one who was critical in getting me over the worst of the CPAP-induced insomina hump that I was trapped in.

drfaust wrote:

robysue wrote:I think the key idea here is that you need to increase your comfort. Some of it is relatively straightforward and some is more difficult. Let's look at your issues one at a time:

drfaust wrote:I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals.

My advice is: Ditch the chinstrap. It is causing far more problems than it is fixing for you.

You say you need it because otherwise air leaks out of your mouth .... It's worth experimenting with a soft cervical collar rather than a chin strap. It's worth experimenting with mouth taping. Heck, it's even worth using the CPAP for a night or two (or even a week or two) just to establish how bad the mouth leak problem is: It could be that it's not anywhere as bad as you think it is.

You can also try to train your tongue to stay on the top of your mouth while you are falling asleep in the hopes that it will stay there after you fall asleep.

Thanks for the advice. I've tried both taping and polident strips. Polident strips just didn't work (not strong enough, also super gross). Taping both didn't work (air leaking out the corners, puffy cheeks, more swallowed air) and caused panic attacks -- not being able to open my mouth during an arousal and not being able to open my mouth when I vocalize during dreams caused me to wake up panicked.

I'm going to suggest something that may sound radical: How about NOT taping, NOT using a chin strap, NOT using the polident. In other words, how bad does the leak line look when you are NOT doing anything to try to keep your mouth closed?

There are two other things that you could try as well:
1) Use a soft cervical collar instead of the chin strap. It won't get twisted/trapped in your hair and it won't prevent you from being able to open your mouth, but it will encourage the mouth to stay shut when your lower face totally relaxes into deep sleep.

2) A full face mask that covers both your mouth and nose. In a FFM you can open that mouth as wide as you want to and you won't lose therapy pressure. But FFM can be prone to springing leaks when the lower face relaxes.

The problem with both these suggestions is that you also write:

drfaust wrote:Basically, anything that restricts movement causes panic when I sleep -- I can't sleep with sheets tucked in. My feet *have* to stick out the bottom of the covers or else I wake up thrashing from claustrophobia. It's interesting that I'm not claustrophobic in daily life -- just asleep. It goes along with my nightmares, I think. The Klonopin helps with this a bit.

It's quite possible that both a cervical collar and a FFM will be interpreted by your unconscious, claustrophobic sleep mind as "dangers".

I also think this sleep claustrophobia may be a partial explanation of why you're have so much trouble adjusting to CPAP: You go to sleep with this alien thing on your nose every night, and your unconscious mind decides the alien is an enemy alien instead of a friendly one. And so your unconscious mind goes into hypervigilant mode to watch out for any bad moves the alien makes towards you. And every leak and any discomfort from the alien is obvious evidence of the malevolence of the alien, so you arouse (repeatedly) just enough for the saner part of your mind to remind the unconscious the alien is just the CPAP mask. But the damage to your sleep has already been done, so to speak.

I know you don't want to hear it, but time will help this issue. I know that 6 months into my nightmare beginning of PAPing, the last thing I wanted to hear was: Give it more time. But things slowly started to turn around in my second 6 months of PAPing. (I went from feeling like I was in Hell to feeling like I was in Purgatory. It was a major positive step forward.) By the time of my 1 year PAPiversary, I had rejoined the land of the living and I was finally seeing some real positive improvements in terms of not waking up in pain, even though I was still not sleeping as long as I really needed to sleep each night.

But time will only help resolve your "still feel awful" issues if you manage to get to where you are sleeping reasonably comfortably with the alien on your nose. And that's why I keep coming back to comfort issues rather than fix the leaks.

If your efforts to fix the leaks are causing more disruption and discomfort than the leaks themselves, then for the short term, it may be better to not worry so much about the leaks.

drfaust wrote:

robysue wrote:

drfaust wrote:I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved).

So you might want to talk to your doctor about whether a switch to bi-level or auto bi-level is something that is worth considering.

He did enable the EPR on my machine, and I'm at a max level of 3. My DME only supplies one machine the Resmed Airsense 10 Autoset, so the EPR maxes out at 3. I could barely sleep before he enabled that, but it took a lot of convincing for him to do that -- he doesn't like using the EPR he says.

Methinks it is time to stop worrying about keeping the doctor happy and take your therapy into your own hands. In other words, if you like EPR and the doc doesn't, keep EPR on and set where you want it.

But it's also worth trying to convince the doc that the aerophagia is a serious issue for you that is not getting better. Consider keeping an "aerophagia" log. (You can use the "notes" part of SleepyHead to keep it in if you want.)

Every morning when you get up, make a written note of two things:
1) How much aerophagia do you have on waking in the morning. (Keep it simple: 0 = none, 5 = stomach is rock hard, bloated and in pain.)
2) Guesstimate of how many wakes were accompanied by aerophagia.
After a month or two of documenting the aerophagia, you'll have both some insight into whether this is a HUGE problem, a BIG problem, a moderate problem, or not as much of an issue as you think it is now. And if it's a HUGE or BIG problem, you can collect the data in a doctor-friendly form and then tell the doc, "I can't keep dealing with a rock hard, bloated stomach most nights. Could we try switching me to a bilevel to see if that's any better?"

Finally note: Bilevels have a separate insurance billing code, hence if a doctor prescribes a bilevel for you, the DME will have to order one from Resmed, since they're a Resmed shop.

In terms of masks you write:

drfaust wrote: The P10 doesn't have adjustable headgear -- it's just a split strap with one strap that goes on top of your head, and one that goes behind. Again, there was no choice at my DME -- only the choice between pillows, nasal, and full face (all resmed). Anything else I pay out of pocket for myself. :-/

Any chance you could switch DMEs? Or again, ask the DME to order you a different Resmed mask. The P10 is a pretty nice mask and the headgear is super light, but the only way to adjust it is by moving the straps further apart or closer together. As I recall, the wider the straps are separated, the "looser" the mask feels at your nose.

Also, I've got a pretty small head, but I find the P10's headgear too small, even the "not For Her" size. So it's possible that the way you are wearing the straps is adding to the nasal irritation.

I would ask the DME if they could order a Resmed Swift FX nasal pillows mask for you to try. It's more adjustable than the P10, but the exhaust flow is also more irritating. Still, it's worth seeing if a different nasal pillows mask helps.

drfaust wrote:

robysue wrote:Also your skin could be very sensitive to blowing air and is chapping due to airflow bouncing back into your face. Again, I've fought this battle: My first winter of PAPing, I had chapped lips and nares that made me look awful. And I felt even worse than I looked.

I'm definitely sensitive, if it wasn't obvious from my litany of issues already I'm also a super light sleeper (unless I take meds, which I try to avoid doing).

What meds do you sometimes take? And how often are you willing to take them?

It took me a very long time to get comfortable with the idea that maybe I was better off taking medicine on a nightly basis than struggling to stay asleep without taking the meds.

drfaust wrote:The exhaust from the P10 is no problem (not even noticable). From the N20 the exhaust vent doesn't bother me, luckily -- it's just sometimes when I get a leak that the leak wakes me up.

Where do you notice the leaks coming from? Around the nasal pillows? Or out of your mouth?

drfaust wrote:Yes -- thank you. I really do appreciate all of the advice here. I did a *lot* of reading on this board when I first got diagnosed and I think I've tried most of the "common" suggestions on this board. I came here because I found the people to be really helpful (like you). I'm obviously willing to keep working at this -- hence why I've stuck with the CPAP despite all of the issues, and why I'm coming here for more suggestions.

Good to know you haven't given up. I could have written that paragraph myself anywhere between Feb. 2011 (five months in) and Sep. 2011 (when I was able to more or less declare victory in the First War on Insomnia.)

drfaust wrote:

robysue wrote:One thing that it took me a very, very long time to understand was that it is possible to work too hard to try to eliminate every last micro-wake and every last arousal. Part of my CBT-I focused on working on what was reasonable for me to achieve, what was necessary for me to do, and what was impossible for me to do in terms of improving my overall sleep patterns. Part of what I had to do was to learn to NOT obsess over the data concerning the number of wakes and micro arousals.

Thanks -- this is a good point. I do need to work on reasonable expectations, that's for sure.

Yes. The setting of reasonable, achievable short-term goals for yourself is extremely important in dealing with the kind of issues that you are having.

drfaust wrote:

robysue wrote:1) How many wakes do you actually remember in the morning? I don't mean how many you know happened because the Garmin watch tells you they happened. I mean how many times do you remember waking up on an average night before you consult the watch's data about your sleep.

I usually remember between 15-20 wakings. My garmin usually registers 1 or 2 (you basically have to be either thrashing around or get up to pee for it to register you being awake, otherwise it just considers you being in "light" sleep mode). My worst sleep is usually toward the early morning. I tend to have almost no trouble falling asleep, and my first sleep cycle goes really well, but then things just get worse as the night goes on.

It's a bit odd that you remember more than the garmin watch shows. Is there a setting to choose the sensitivity? When I set the "sensitivity to "high" instead of "normal" it picks up many (most) of my 30-90 second arousals and labels them as wakes, even though I don't remember the vast majority of them. (And in all seriousness, I have fewer of them these days than I used to.)

But I think we can still conclude that sleep fragmentation is a huge issue. It sounds silly, but you need to work on trying to NOT remember all those late night/early morning wakes.

How long does it take you to get back to sleep after one of these wakes?

And what's the first thing that goes through your head when you find yourself awake in the middle of the night?

And this next question may sound crazy, but as an old insomnia hand, I have to ask it anyway: Any chance you are remembering being "awake" when in reality you are actually in Stage 1 or Stage 2 (light) sleep? There are studies that show people with significant insomnia problems or "can't stay asleep problems" have trouble distinguishing between being asleep (in light sleep) and being awake. In other words, people with serious sleep maintenance issues often think they're awake when an EEG says they're actually asleep.

drfaust wrote:

robysue wrote:2) How stable is your sleep schedule? Do you have a regular bedtime and, even more important, a regular wake up time?

Very stable. This was part 1 of sleep hygiene. The Psychologist originally suggested some sleep restriction. That didn't go well. But I'm in bed at 10:45 and alarm goes of at 7am every day. *every day*.

So you're in bed for 9 hours and 15 minutes. That's 9.25 hours. How much sleep do you think you get during that 9.25 hours of time in bed?

drfaust wrote:

robysue wrote:3) What do you want your sleep to look like?

It's more what I want it to **feel** like. I want to wake up not feeling like I was punched in the face. I want to not have constant headaches. I want to have enough energy to go to work every day, rather than having so many "sick" days due to being so fatigued it's hard to move. I want to stop falling asleep in meetings, falling asleep *when I'm talking to students one-on-one* (I'm a professor). My counselor and psychiatrist both think that sleep is the missing key when it comes to my anxiety issues and that when I get that figured out, that my anxiety will get a lot better, and I agree.

I'm also a professor. So I know exactly what you mean about falling asleep at bad times. At the worst part of my CPAP adjustment I'd find myself taking micro-naps while lecturing at the white board---I'm a math prof, and we're kind of tied to those white boards.

More seriously, however, these are not really sleep goals: They are the outcomes you want from fixing the sleep, but they are not intermediate goals that will help you fix the sleep. So in terms of what happens between 10:45pm and 7:00am every night, what can you work on to change that would help fix the sleep so that you do have the energy you need to get through your days without falling asleep while meeting with students?

1) Do you think eliminating some of those 15-20 wakes you remember every night might make you feel more rested in the morning and have more energy during the daytime? How many wakes do you think it is reasonable to remember in the morning without the night time wakes being a cause for lots of daytime sleepiness problems?

2) Do you think eliminating some of the aerophagia might make you feel more rested in the morning and have more energy during the daytime?

3) Do you think eliminating the leaks by whatever means necessary might make you feel more rested in the morning and have more energy during the daytime?

4) Do you think having fewer nightmares might make you feel more rested in the morning and have more energy during the daytime?

If you had to pick ONE of the above four things to work on (first), which do you think would make the biggest difference in how you feel during the daytime?

drfaust wrote:

robysue wrote:4) Are you aware that a person with normal sleep spends as much as 50-60% of the night in light (Stage II) sleep?

Yep!

5) Are you aware that a person with normal sleep may wake up for a minute or two every 90 minutes or so, usually right after a REM cycle? It's just that a person with normal sleep doesn't remember those post-REM wakes: They wake up just enough to readjust their position and (unconsciously) make sure that everything in their sleep environment is still "ok" and then they go right back to sleep.

Yep! The science nerd in me got me to spend probably over a hundred hours reading sleep journals after my diagnosis, since I wanted to learn exactly what was going on with me, what the issues were, what the data show, etc. I'm probably much better read than your average newbie member around here

Good.

But, of all the things you've read, what things have struck you as worthwhile ideas to try in order to fix your own bad sleep?

And what kinds of specific things have you tried in an effort to fix your bad sleep? In particular, what kinds of "sleep hygiene" things have helped and what kinds have not?

drfaust wrote:

robysue wrote:6) How long does it take you to get to sleep with all the CPAP-related stuff on your face? How long did it used to take you to get to sleep before you started CPAPing?

About 10-15min. I don't have a problem falling asleep -- it's staying asleep. My sleep onset time is basically no different now than it was before CPAP. It's just that -- like you said above -- I've traded low blood oxygen and RERAs for CPAP-related-arousals.

Fixing CPAP-related arousals in a person who is highly sensitive to sensory stimuli is an on-going, and often lengthy process that requires some patience and some work. The first task is sorting out what kinds of CPAP-things are potentially causing the arousals and then tackling them one by one, while also trying to train your body to just be a bit more tolerant of some of the new sensory stimuli that it needs to learn to live with.

You've admitted that you are a science nerd and a college prof. So I'm going to shamelessly appeal to that in you since I'm a math prof myself.

Are you willing to attack your CPAP adjustment problems like a scientific experiment? Keep notes on what works and what does not work? Settle for baby steps of progress at the start because you know the overall problem is a huge problem. Tackle things piecemeal for a while, and look for even minor improvements? Change one thing at a time and figure out whether the change improved things, made things worse, or didn't really affect things too much before making another change? Be willing to consider whether other health issues might be playing a role in keeping your sleep bad and recognize that you may need to address them as well as the CPAP stuff before you can fix the bad sleep?

Because if you're game to do all that, I'd be happy to help guide you through the process that I started back in September of 2010. I can't promise that you'll ever fix all of your sleep issues and that they'll stay fixed forever. But I can say that I think you will be able to sort out your issues with time and effort and once you do, you will start to feel more rested when you wake up in the morning and have more energy during the daytime.

Let me know if you want me as a guide.

drfaust wrote:

xxyzx wrote:
have you had a full physical and labs to see if anything else is wrong

long thyroid can make you tired too

I've had thyroid (TSH, T3, T4, and anti-TPO), testosterone (free and total), iron, ferretin, B12, and Vitamin D test. All were normal. The Vit D was on the low-ish end of normal (33.8 with 30-100 being the reference range), but still in the normal range. Everything else was smack dab in the normal range.

See what you think re: Dr. Stasha Gominak's comments regarding adequate D levels for OSA patients. Raising my levels to 65-70 did not work for me, but for some of her patients it did (no double-blind studies unfortunately). I don't want to sidetrack you with this, but I've found her lectures fascinating.
https://m.youtube.com/watch?v=xF24xmJQK1k