Reasonable Expectations for Therapy

[Bodhi]

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[robysue]

Back when I was still using an S9, I'd always have a median leak rate (in ResScan) of 0 L/min. I'd often, but certainly not always---or even a majority of the time, have a 95% leak rate of 0 L/min. I'd even have the very rare hat tricks: median, 95%, and max leak rates of 0.0 L/min. But I can honestly say that the hat trick nights didn't make me feel one whit better. I was quite content with my leak rate on the S9 whenever the 95% leak rate was less than 5.0 L/min and I wasn't particularly troubled unless the 95% leak rate was around 10 L/min AND the leak graph had several large bumps in it instead of one large bump.

As far as AHI: I think it is unreasonable to expect an AHI of 0.0 night after night after night. For me (and I admit I'm kind of weird here), I seem to feel best when the actual number of events during the whole night is less than 5, regardless of what that makes the AHI. And I seem to feel fine when the number of events during the whole night is less than 10, regardless of what that makes the AHI. And I feel pretty lousy when the number of events gets above 15 for the night---even though, with my 5 1/2 to 6 hours of "sleep time" each night, that still gives me an AHI of less than 3. From looking at my data, it seems that those (so far isolated) bad nights with 15 or more events are also the ones where I have multiple clusters of six or seven events. And I do think we all have bad nights occasionally. I typically only get worried if I see three bad nights in a row. That's happened now and then. The last time I had two such nights in a row, I wound up deciding to increase the EPAP from 4 to 4.5, and the total number of events (and the AHI's) have gotten back where I want them to be.

So in my opinion, yes, I think you may be expecting too much of therapy to expect that both the leaks and the AHI can be 0 for night after night after night ...

Now you say:

my AHI average is 0.8, but it has been going up (for example, last night it was 1.5 events/hr). ... But often, I feel terrible in the morning.

The critical thing here is that you still feel terrible in the morning. I don't think getting your AHI to go from 0.8 to 0.0 will make you feel that much better. But you say that the AHI is going up. How long has it been going up? Have you *ever* felt truly refreshed when you woke up in the time you've been using CPAP? And were you feeling better *before* the AHI started to go up? And has anything *else* changed about your sleep? More nighttime wake ups? Longer time to get to sleep? Just plain more restlessness? All those are good questions to be asking in order to determine what is currently making you feel terrible in the morning. And look at the data: Anything there that might explain why you aren't feeling any better?

[Pugsy]

AHI of zero? I might have it if I sleep only and hour. Some people will have an AHI of zero on occasion. Even people without a diagnosis of OSA can have an occasional event that might be scored by the machine. Turning over in bed..Waking up and maybe breathing rhythm change. So to try to reach a zero AHI is more likely just going to drive someone nuts.

Leak at zero? The machines aren't exact with what they report and the masks themselves have plus or minus numbers in what their intentional leak rate is so the machines can't be expected to be perfect. I did an experiment a while back with my software and found at times that the machine was reporting an average leak less than the intentional leak my mask has at my pressure.
Remember it is just a number. It is close but again not perfect. We can't look at the leak minute by minute (except maybe with ResMed software). We only get a line on the report to look at and a number to evaluate. You can get the machine to show a zero leak and many do but remember that is just a number and depending on what brand of machine an average or percentile figure that you spent most of the time at.
I am happy if the leak line is steady without huge spikes (little bumps ok) and I really don't look at the leak average except in passing. Consistency is more important than just a number. Numbers can be skewed easily. 30 minute large leak for whatever reason will affect the numbers but if the rest of the night was nice an minimal leak line, that is more important than the numbers that come from factoring in the large leak.

So if you get a zero leak number, wonderful. To try to get a 0.1 leak number down to zero ... well don't let it consume you. It could cause unnecessary stress and be counter productive.

If you consistently get good "numbers" but still feel awful then maybe take a look at what events are occurring and in what time frame. Little groups or clusters in a small time frame but because on no events other times brings that AHI down????
Time to maybe look at other factors that might be affecting the restorative powers of your sleep?? I battle back pain and I know that it impacted my sleep because I would wake up every time I turned over in bed, it hurt. Frequent wake ups can diminish the restorative powers of sleep because we don't get the proper cycles. So other things will obviously affect how we feel and can still cause us to feel crappy despite "excellent numbers". Number of hours in sleep? I feel awful with 5 hours of sleep, better at 6 hours, much better at 7 hours.. That sort of thing..

Okay climbing down off the soapbox. If you get good numbers yet don't feel so great. Look at the reports first to see if anything might stand out. Then start looking at other possible factors.

Oops I see Robysue has also commented. Likely some of what I said is a repeat of her ideas but I will leave this since I stretched my brain composing it. English composition was never my strong suit. I was a math and science nerd.

[robysue]

English composition was never my strong suit. I was a math and science nerd.

And I still am a math nerd

[Pugsy]

And I still am a math nerd

Yep. You are the math whiz and can communicate it very well. I still have my math skills but sometimes I have trouble communicating them properly. That is my English composition failing me. I know in my head but sometimes doesn't come through my fingers. My math skills haven't really been challenged in a long time. I did more with my science skills when I went into the medical field. So science is probably my strong suit now.

[Bodhi]

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[Drowsy Dancer]

It's just that I was told that CPAP eliminated events and APAP eliminated most and ameliorated the others.

CPAP will not eliminate something called "sleep onset" central apneas. Some people have these, as you might surmise from the name, as they are falling asleep. My sleep doc describes them as "meaningless," and xPAP therapy does not need to address them, but if you are a person who has them you will never have an AHI of 0.0 even if you have most excellent therapy.

ETA: Oh, yeah, I think my machine also looks at the "Vibratory Snore," or "VS" data to calculate the AHI. My VS index apparently can be affected by something like the hose rubbing against the pillow briefly, which obviously is not "real" data to determine my "real" AHI.

Also, some people (like me) will feel better only gradually no matter how high the quality of their xPAP therapy. As my sleep doc explained it to me, "It takes a long time to come back from being as oxygen-deprived as you have been."

Drowsy Dancer

[Bodhi]

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[DocWeezy]

Also, sometimes when we sleep deeper/better, more apneas may occur. I usually feel better after a night where my AHI is a bit higher than usual because it means that I slept deeper and had more REM sleep. Nights where I don't have much REM sleep are the nights when my AHI is the lowest or 0 because I rarely got into the sleep level where the apneas occur for me.

Weezy

[sardu]

I had a question along the lines of this topic.

Maybe someone has a few tibits on it.

I've been struggling with a ResMed machine and masks for 3 months now. After some very marginal results, I now am waking up late into the night and having problems breathing thru my nose, et al. I actually didn't have major issues with the nose only masks, but have switched recently to a full face one because of mouth breathing problems.

Anyway, now I'm having a difficult time actually breathing and end up tossing the mask and sleeping without it.

As a result I'm having some major fatigue problems now and having a hard time staying awake during the day. So much so that I am falling asleep at my desk and dozing off whenever I even sit down, etc.

Wasn't having those symtoms before CPAP or prior to health issues even earlier. I had no snoring issues, stopping breathing nor do I sleep on my back. I was also in fairly good shape and not not large. I was put on it (CPAP) due to a, at least, suspect sleep lab study which showed I had severe OSA (36-37 per). Again prior to that test I had fatigue issues as well that were all over the place. I also was diagnosed in August, 2010 as hypothyroid, which, I now understand, can cause apnea due to slowed down overall system, weight gain (over 30 lbs) and, of course, the tongue swelling (blocking the air flow). Ironically, the hypothyroid began a couple weeks after I quit smoking in April. That's when the weight gain and fatigue problems began (from 245 to 271 in 11 days).

Today the hypothyroid is nearly under control but not totally (3.5 down from 15.4 in Oct). My doctor thinks I need another lab to see where the OSA level is now.

I was hoping someone out can relate to this and maybe give me some pointers on what it is and where it leads. I'm getting sick of spending my days spaced out. If this keeps up I may end up voting Republican. Seriously, would appreciate any comments, etc.

Thanks, in DC.

[Pugsy]

Would you please take the time to go to the User Control Panel and to your Profile, then the equipment page and add your equipment in Text please so we can see what you are using at a glance. Hopefully you will have a data capable machine so the reports are available.
Many things impact how we feel.
Is the cpap therapy even being effective? Are there leaks impacting therapy? How much time do you actually get asleep and masked up? Are there any other possible contributing factors? Pain, meds, general health besides the thyroid.

It's difficult to offer any ideas without more detailed information.

[Bodhi]

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[Mr Bill]

I had a question along the lines of this topic.

Maybe someone has a few tibits on it.

I've been struggling with a ResMed machine and masks for 3 months now. After some very marginal results, I now am waking up late into the night and having problems breathing thru my nose, et al. I actually didn't have major issues with the nose only masks, but have switched recently to a full face one because of mouth breathing problems....
...Again prior to that test I had fatigue issues as well that were all over the place. I also was diagnosed in August, 2010 as hypothyroid, which, I now understand, can cause apnea due to slowed down overall system, weight gain (over 30 lbs) and, of course, the tongue swelling (blocking the air flow). Ironically, the hypothyroid began a couple weeks after I quit smoking in April. That's when the weight gain and fatigue problems began (from 245 to 271 in 11 days).

Today the hypothyroid is nearly under control but not totally (3.5 down from 15.4 in Oct). My doctor thinks I need another lab to see where the OSA level is now.

I have hypothyroidism. Are those TSH numbers? When I was diagnosed my T4 was 1.2 and my TSH was 700. Antibodies showed it had apparently been that way for about a year. My blood pressure went up, I gained weight. I would wake up in the morning with both arms and legs asleep and when I told these symptoms to my medical friends they said it comes with aging. My hearing was impaired, my train of thought had about two cars which derailed easily. That was why I went to the doctor, I was doing my PhD in Geochemistry and simply could no longer think well to make decisions that had been easy. I had numb spots on my hands. Tunnel attention span while driving and muscle weakness. I would walk up the handicap ramp rather than step up on the curb. I'd get in a super hot car and not bother rolling down the window because I liked it. Anyway depending on how long you were hypo, it may take months to get back muscle and connective tissue all happy again. I was so surprised one night walking through the house to realize I could see in the dark again. I had gotten used to it being dark.

On the mask issue, it sounds to me like you did better with the nasal mask than you are with the full face mask. I find the nasal mask leaks less and I think you should try going back to it because you said you were sleeping well with it. Then go from there and just figure out a way to deal with your mouth breathing. I set my teeth and pull a vacuum in my mouth and if on occasion I open it or find air woshing out, I close it and keep on trucking. Some lucky few might not need CPAP if they get more muscle tone in their neck but you may still need it. There are nerves that are supposed to keep our airway from collapsing when we sleep. In some people regardless of weight, that nerve response is apparently impaired. I see plenty of fit looking skinny people in my DME's office that were referred for a sleep study because of high blood pressure brought on by apnea and that was their only symptom. So, don't be thinking like my little brother does for me that this is MY problem because I am overweight. Solve the underlying cause and the weight may come off. Leave the sleep apnea going, and you may never be successful in loosing weight.

[Emilia]

The American Thyroid Association recommends that one's TSH be between .5 and 2.5 to feel optimal. Most labs will use up to 4 as a 'normal' range, but I feel my 'best' around 1.5. When it creeps up to 3.0 I know it as I start to get more sluggish.... I go for tests every 6 months, and I've had to increase my dosage several times in order to maintain a reading under 2.5. Doc says my thyroid is progressively slowing down.... hope it stops soon

[Bodhi]

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