Scared

[BeanMeScot]

Otherwise, the only thing you have to go on is how you feel. You will see when most people here talk about how well they are doing on CPAP, they give their AHI.

I disagree. The only truly reliable and worthwhile indicator of your therapy is how you feel. If your data capable machine showed an AHI of zero, but you still felt unwell, should you be satisfied with that? If you witnessed your own cardiogram flatline, would you then be dead? Is it normal even for people not diagnosed with OSA to experience a few AHI's during the night? Does chasing after diminishing returns for unobtainable lower AHI's produce anxiety which actually increases sleeplessness? It wasn't a machine that first alerted you to your health problems, it was sickness, fatigue etc. So why do you need a machine to tell you that your therapy is working?

Frankly, I have to disagree. I never felt bad before being diagnosed. I wasn't sick or tired. I was told that I snored and I checked that out and my doctor ordered a sleep study. I did fell more energetic after getting on the machine but it wasn't really a dramatic difference. My non-REM AHI was only 10.5.

Being on CPAP, I get pretty much the same numbers every day. I was surprised at how consistant my AHI is. But there are days when I am still tired and want to take a nap and such. When I check the numbers on the machine, they are the same. So I don't think "how you feel" is the end all and be all of CPAP efficacy. I certainly don't feel I would be able to tell how well my therapy is going strickly from how I feel.

[Jason S.]

If you don't feel well, then either your therapy isn't working or you have other health issues. In either case, your static AHI numbers are in actuality, meaningless. Perhaps having static numbers gives you some "piece of mind" your CPAP therapy is optimized, but I certainly wouldn't be satisfied with that if I still felt lousy on some days. Which runs full circle to my original argument. In cases where OSA improves as a result of non-data capable CPAP therapy, that alone is a sufficient diagnostic tool to determine the efficacy of treatment.

[BeanMeScot]

If you don't feel well, then either your therapy isn't working or you have other health issues. In either case, your static AHI numbers are in actuality, meaningless. Perhaps having static numbers gives you some "piece of mind" your CPAP therapy is optimized, but I certainly wouldn't be satisfied with that if I still felt lousy on some days. Which runs full circle to my original argument. In cases where OSA improves as a result of non-data capable CPAP therapy, that alone is a sufficient diagnostic tool to determine the efficacy of treatment.

But you are making the presumption that you should feel fantastic every day. That isn't true and it isn't all dependant on CPAP. You can just not sleep well. Your AHI is fine but you are tired. That doesn't mean there is anything else wrong with you, it just means you had a bad night of sleep. With the numbers on the CPAP, I can visually see that it wasn't because my leaks or AHI was bad, so that's one thing I don't have to consider. If I don't have the numbers, I don't know. It could be that my AHI was really high that night but I have no way of knowing.

[Wulfman]

If you don't feel well, then either your therapy isn't working or you have other health issues. In either case, your static AHI numbers are in actuality, meaningless. Perhaps having static numbers gives you some "piece of mind" your CPAP therapy is optimized, but I certainly wouldn't be satisfied with that if I still felt lousy on some days. Which runs full circle to my original argument. In cases where OSA improves as a result of non-data capable CPAP therapy, that alone is a sufficient diagnostic tool to determine the efficacy of treatment.

How are you going to know WHICH one it is? If you have data-capability (to eliminate snores, leaks, optimum pressure, etc.), one can at least start doing a process of elimination.

To the second one, I say.......BS

Den

[nate fry]

I still get nervous thinking apnea is what got my dad and his dad. Lucky for me and you that we know what the problem is. No you can do something about it. I hope you have a cpap machine or get one soon. My uncle got one from the va but it took forever.In the meantime you can use those breath right strip and flush your nose with saline, it will help with congestion, inflamation and some obstruction like a diviated septum or enlarged turbinates.And sleep on your side too.

[Jason S.]

But you are making the presumption that you should feel fantastic every day. That isn't true and it isn't all dependant on CPAP. You can just not sleep well. Your AHI is fine but you are tired. That doesn't mean there is anything else wrong with you, it just means you had a bad night of sleep. With the numbers on the CPAP, I can visually see that it wasn't because my leaks or AHI was bad, so that's one thing I don't have to consider. If I don't have the numbers, I don't know. It could be that my AHI was really high that night but I have no way of knowing.

There is a healthy proactive interest in one's own health care, and then there is a "hypochondriacism", an obsessing over every minute detail about how one feels and the therapy one is receiving. If I happen to feel differently on a particular day for whatever reason I do not set off alarms that my therapy is off. It isn't called for, and its detrimental.

Get a sleep study done. Get a titration. Get your pressure. Use your CPAP. Get on with your life.

[Wulfman]

But you are making the presumption that you should feel fantastic every day. That isn't true and it isn't all dependant on CPAP. You can just not sleep well. Your AHI is fine but you are tired. That doesn't mean there is anything else wrong with you, it just means you had a bad night of sleep. With the numbers on the CPAP, I can visually see that it wasn't because my leaks or AHI was bad, so that's one thing I don't have to consider. If I don't have the numbers, I don't know. It could be that my AHI was really high that night but I have no way of knowing.

There is a healthy proactive interest in one's own health care, and then there is a "hypochondriacism", an obsessing over every minute detail about how one feels and the therapy one is receiving. If I happen to feel differently on a particular day for whatever reason I do not set off alarms that my therapy is off. It isn't called for, and its detrimental.

Get a sleep study done. Get a titration. Get your pressure. Use your CPAP. Get on with your life.

The problem with that logic is that far too many sleep studies/titrations result in the WRONG PRESSURES. You don't have to read very long on this forum to find the ones who have experienced that. I'm one of them. It's also highly probable that a person's pressure requirements can change over periods of time.

hypochondriacism, hypochondriasis
1. Psychiatry. an abnormal state characterized by emotional depression and imagined ill health, often accompanied by symptoms untraceable to any organic disease.
2. excessive concern and conversation about one’s health. Also called hypochondria, nosomania. — hypochondriac, n. — hypochondriacal, adj.


If you think that people who have sleep apnea and who have been shabbily diagnosed and prescribed, and left in the dark by the medical professions.......and who would like to become more informed on how to manage their therapy by seeking out the forums on the Internet.......are being hypochondriacs........you're suffering from "delusionalism".


Den

[Jason S.]

The problem with that logic is that far too many sleep studies/titrations result in the WRONG PRESSURES. You don't have to read very long on this forum to find the ones who have experienced that.

You might get that (erroneous) impression from reading posts on this board, which is a minute sample of CPAP users, but the overwhelming percentage of CPAP users are successfully diagnosed by competent physicians, sleep studies and titrations. The difference is they are not posting on this board. They are receiving their therapy and going about their lives instead of obsessing to the Nth degree about every API and leak they had on the preceeding night.

[Wulfman]

The problem with that logic is that far too many sleep studies/titrations result in the WRONG PRESSURES. You don't have to read very long on this forum to find the ones who have experienced that.

You might get that (erroneous) impression from reading posts on this board, which is a minute sample of CPAP users, but the overwhelming percentage of CPAP users are successfully diagnosed by competent physicians, sleep studies and titrations. The difference is they are not posting on this board. They are receiving their therapy and going about their lives instead of obsessing to the Nth degree about every API and leak they had on the preceeding night.

HUH?

"Diagnosis" is NOT the problem. "Compliance", and "successful therapy" ARE the problems.
Got any links to statistics to back up your claims?
If so many people are "receiving their therapy" and "going about their lives......"......how do you account for there being so many studies concerning the lack of compliance to this therapy? The percentages vary and depend on whether it's in Europe or the U.S.A., but in the U.S, it's been reported to be only about 50%.

Yep! Those people are going about their lives all right.......about half of them "UNTREATED"......they gave up!


http://www.sleepapnea.org/resources/pubs/wrong.html

http://www.pubmedcentral.nih.gov/articl ... id=2556913

Study Objectives:
Despite widespread agreement that continuous positive airway pressure is effective therapy for obstructive sleep apnea, it is estimated that 50% of patients recommended for therapy are noncompliant 1 year later. Interventions to improve compliance in such patients have not been studied. We evaluated a 2 phase intervention program to improve compliance in sleep apnea patients previously noncompliant with continuous positive airway pressure.


http://www.rtmagazine.com/issues/articl ... -12_04.asp

Intensive Support
It is known that the CPAP compliance rate is significantly higher in Europe than in North America (80% vs 46% at 3 months).40 Also, fewer patients abandon CPAP in Europe than in the United States (5%-19% vs 19%-37%).41 In addition to cultural differences, perhaps Europe provides overall better patient support. Several studies have confirmed that more intensive support, and also simple follow-up measures, increases CPAP compliance rates.42,43


http://ajrccm.atsjournals.org/cgi/conte ... 160/4/1124

Other data, mainly from the United States (9), have indicated poor effective compliance (time spent at the effective pressure). Only 46% of the patients used the therapy for at least 4 h on 70% of the days


http://www.springerlink.com/content/dh67562382427697/

Therefore, including the 58 failures, only 59.5% of patients can be seen as compliant.


Yeah, we're a small fraction of the XPAP user population.......but I'd be willing to bet that this group has a much higher rate of compliance and success than those that are blissfully ignorant.


Den

[Wulfman]

The problem with that logic is that far too many sleep studies/titrations result in the WRONG PRESSURES. You don't have to read very long on this forum to find the ones who have experienced that.

You might get that (erroneous) impression from reading posts on this board, which is a minute sample of CPAP users, but the overwhelming percentage of CPAP users are successfully diagnosed by competent physicians, sleep studies and titrations. The difference is they are not posting on this board. They are receiving their therapy and going about their lives instead of obsessing to the Nth degree about every API and leak they had on the preceeding night.

Another thought.....
We may be a "minute sample", but I believe we're a microcosm of ALL XPAP users. We were just knowledgeable enough or lucky enough to seek out or in some way find the forums that are here to exchange ideas and experiences.

After all.......YOU'RE HERE.


Den

[Jason S.]

Compliance is low because the mask is uncomfortable and cumbersome and people are not used to sleeping with an apparatus draping their heads. Simple as that. Compliance has NOTHING to do with the issue at hand, which is the percentage of CPAP users who receive accurate sleep studies and titrations from competent health care professionals and benefit from properly titrated CPAP machines without the need for data. Compliance or non-compliance doesn't speak to the issue of the effectiveness of the treatment of data vs non-data CPAP. You cannot say a person is more likely to wear a full-face headgear with a data card than a full-face headgear without a data card. Your attempt to hijack the discussion into something else has failed. You may now return to your fishbowl.

[Wulfman]

Compliance is low because the mask is uncomfortable and cumbersome and people are not used to sleeping with an apparatus draping their heads. Simple as that. Compliance has NOTHING to do with the issue at hand, which is the percentage of CPAP users who receive accurate sleep studies and titrations from competent health care professionals and benefit from properly titrated CPAP machines without the need for data. Compliance or non-compliance doesn't speak to the issue of the effectiveness of the treatment of data vs non-data CPAP. You cannot say a person is more likely to wear a full-face headgear with a data card than a full-face headgear without a data card. Your attempt to hijack the discussion into something else has failed. You may now return to your fishbowl.

You got a lot of room to talk. You hi-jacked this thread back on page two......before I ever posted. The subject that you disagreed with was about a person having a data-capable machine......because......

The only truly reliable and worthwhile indicator of your therapy is how you feel.

You are the one who made "compliance" EVERYTHING.

"They are receiving their therapy and going about their lives...."

If people are "receiving their therapy", they're being "compliant".

Now you're making absurd remarks about the type of mask they wear depends on whether they have a "data card".

Having a data-capable machine and the means with which to interpret the data is clearly A way to determine effectiveness of one's therapy......PERIOD!!!


Den

[DoriC]

The problem with that logic is that far too many sleep studies/titrations result in the WRONG PRESSURES. You don't have to read very long on this forum to find the ones who have experienced that.

You might get that (erroneous) impression from reading posts on this board, which is a minute sample of CPAP users, but the overwhelming percentage of CPAP users are successfully diagnosed by competent physicians, sleep studies and titrations. The difference is they are not posting on this board. They are receiving their therapy and going about their lives instead of obsessing to the Nth degree about every API and leak they had on the preceeding night.

So why did our well regarded and "competent" Sleep Specialist set my husband's APAP to 5-18 when he was titrated at 13. When I asked him how he arrived at that setting (because even then I knew that sounded wrong), he said "the machine will find your correct pressure as needed". Thankfully, I found his forum with "extremely knowledgeable and compassionate" cpap users and only with their guidance and a fully data-capable machine, did my husband achieve successful therapy at the present pressure of 12cms for now. So the studies and titration were pretty accurate(in our case at least), but that's where it ended. Unfortunately,our situation out in the medical community is the norm from what I read here.

[drj130]

Wow, didn't realize that I'd started a small war here. I know that everyone has their own views on how things work with this stuff. What works with one might not work for someone else. Again I thank you all for the good advice that you have given me and I am going into my next appointment better informed then I was when I first found out about this.

As far as my wife goes, her understanding of english isn't the worlds best, but I love her none the less. I think she understands what is going on, but without her being here to get the information first hand, and see what will be happening when i get the machine, I think that she might be a little shocked the next time we share the same bed. I do know that she does sound happy because I won't be cutting down any more forests in her ear at least.

My Soldiers don't have a complete understanding of how they helped me out, but that is ok. They were shocked when I did thank them, and had a strange look on their faces. They'll get a better understanding the next time we're in the field.

[gasparama]

I think your treatment just might be a great relief to your wife. She will also be able to get more sleep. My husband is so happy to not be awakened several times a night to the sound of my snoring and gasping. The gasping quite often brought us both to our feet several times during the night. It was awful. And as for the mask (someone mentioned something like this), he just told me that I looked like a jet fighter pilot and that was the end of that. There won't be any problem between the two of you concerning your therapy. You are fortunate to have each other. And I'm glad your soldiers saved your life!

My dad was diagnosed with sleep apnea before there was treatment. I'm pretty sure that it was at least part of the problem that led to his death at the age of 68.

I'm glad you joined us. You didn't start a war. Things just flame up every once in a while.

Keep posting and reading!