Crazy leak line charts, and rambling thoughts,....

Here is an example of what I was talking about in the other thread concerning FFMs. I don't get how I can have such a beautiful leak line one night, and then a disaster another. Both of these short charts were virtually identical conditions,....minimal nasal congestion, not exhausted upon retiring, no drinking or new meds. I just don't get it.

I also am feeling more and more that I should get set up with a new sleep doc, and get another study done, or pay for a home study myself. Seriously starting to wonder if I even have OSA to begin with, and that all these machines are doing is causing some minor central events, and disrupting my sleep badly.

I initially wondered if this new private purchase machine was possibly defective in its data recording abilities, but when I look back at the DME provided machine charts, the portion of my AHI composed of obstructive events is very small/non-existent as well. I have gone from a prescribed fixed pressure of 8cm, down to 6cm, and now at 7cm, and nothing different seems to be happening. I think I will drop to 5cm, and then even 4cm and see what gets recorded in data. If the obstructive events stay minuscule, I will feel even more that something is amiss.

Trust me,....I am NOT one of the people that doubts this condition is very real, and widespread, but I DO have a serious lack of faith in the sleep doctor, and the tests that I was personally given, and I do think I have some semi-compelling evidence to back that feeling up with. I mean how many of you started out of the gate with treatment and had a typical obstructive index average of .38 with no tinkering of the machine settings? I really need to get a recording oximeter, and if a number of nights without the machine show no desats, I will have added proof that something doesn't smell right.

The other issue that confuses me is something I have mentioned here previously,.....I slept just fine before, and now I don't. I used to go to bed and be out within 10 minutes. I would get up once or twice for a restroom break, (which I still do with the cpap) depending upon how much water I drank before bedtime. Beyond that, what woke me up after 6 hours was pain from my bad back, and that has nothing to do with OSA. I used to sleep good,...no gasping for air, no racing pulse, no headaches upon awakening, no flipping and flopping from arousals,...just sound sleep.

I'm really not having a 'temper tantrum' over treatment like a number of members here have done, I'm seriously confused and conflicted by my whole experience since being sent to that sleep doctor after complaining of serious fatigue. I have been serious about doing what I needed to do on my own terms, as evidenced by the amount of money I am out of pocket buying machines and equipment self pay. I just don't imagine there are many of you that would want to continue with this treatment if it really wasn't necessary, would you?

I fully realize this post is very convoluted,....I am just throwing thoughts out there, hoping that somehow I can figure out what is the best path to take. I can certainly use any, and all help that is offered here as well. Thanks for listening.

So refresh my memory...what was your diagnostic sleep study AHI and oxygen levels that earned you the cpap machine in the first place?
Was it an in lab sleep study?
While I can see a false negative happening for some reason with a sleep study I just can't see a false positive happening because the criteria is so specific.

As for the good vs bad leak nights. It happens. I see stuff like this sometimes myself.
Masks move around sometimes....we might have our mouth drop open only if we are on our backs and we aren't on our backs all the time.

Your doctor has your life in his hands. Any time you lose confidence in any doctor, fire him and find another. don't stress yourself with all the details.

I am not familiar with your history so I am only reacting to what I see in this post. Your treatment looks good. Leaking is variable; often caused by position. Have you ever tried using nasal pillows (airfit P10)? With your low pressure. you may not have a mouth leaking issue.
I assume your diagnosed OSA was mild. How do you feel after sleeping without CPAP?

A month ago you posted a thread and mentioned a few symptoms that led to being tested for OSA.

viewtopic/t157641/viewtopic.php?f=1&t=1 ... t#p1205480

What struck me at the time was that you had a small abnormality show up on an echo that suggested OSA and that your cardiologist was being proactive in suggesting ruling out sleep apnea.

EDIT: removed comment after reading your earlier thread about the FFM. Didn't see that before posting.

Can't remember if it was suggested or tried, but have you tried raising your pressure by even 1-2 cms for a couple of nights? It looks to me like it topped out on the graphs and might want to go higher.

The above report is in fixed cpap mode with pressure of 7 and EPR set to 2.
There is no way from this report to know if it wants to go higher or not.

Pugsy wrote:So refresh my memory...what was your diagnostic sleep study AHI and oxygen levels that earned you the cpap machine in the first place?
Was it an in lab sleep study?
While I can see a false negative happening for some reason with a sleep study I just can't see a false positive happening because the criteria is so specific.

As for the good vs bad leak nights. It happens. I see stuff like this sometimes myself.
Masks move around sometimes....we might have our mouth drop open only if we are on our backs and we aren't on our backs all the time.

I do not have my sleep study on paper, I am going from what the nurse said when she called back in June, and the number on my scrip which I have from the DME. The recorded AHI was 16, and was based on two hours of sleep maximum. She said I had two desat events that went in the upper eighties, for around 15 seconds IIRC.

And yes,...it was a 'lab based' sleep study if you can call it that. There were two techs that were twin brothers, and a female walking up and down the hall most of the night talking loudly to one another. I mentioned here before that they made me sleep on my back with a pancake flat pillow on a horribly uncomfortable bed. My back, and neck were killing me during this whole thing. Between the noise, the lack of pillows, all the wires and the pain, I barely slept,....and it was very disrupted.

At home I sleep on my back as well 60% or more of the night, but I start out on three pillows, and reduce down to two in the wee hours. I also sleep on a TempurPedic mattress, as well as a Sleep Number bed. I move around depending on the night.

I don't like demeaning people, but these sleep techs were really questionable. The female that put my ecg leads on needed help from me (used to be firefighter/medic) remembering where to place the electrodes.

As far as the leaks on my chart, I am sleeping in the same position. It is almost 100% mouth breathing, as it's very easy for me to tell by the parched/sore throat. 95% of the time the only mask leak is the intended vent leak, as I almost have to force the Brevida to leak on me.

Arlene1963 wrote:A month ago you posted a thread and mentioned a few symptoms that led to being tested for OSA.

viewtopic/t157641/viewtopic.php?f=1&t=1 ... t#p1205480

What struck me at the time was that you had a small abnormality show up on an echo that suggested OSA and that your cardiologist was being proactive in suggesting ruling out sleep apnea.

As for the Sleepyhead charts the only thing that strikes me is that you are using CPAP for a very short amount of time (only several hours at a time) and possibly some of the deeper sleep stages and REM aren't being captured here. Just a possibility?

You are correct. The problem is the tiny change in my echo could also be a result of aging and previous hypertension which I did have for years, although it has been perfect for the last five. My cardiologist is very proactive due to the genetic family history I have.

Most of my charts are for 5 to 6 plus hours. These are just a section of a night, or in the case of the large leak one,....I had enough and shut it down. I usually go the majority of the sleep night.

In November you wrote in the thread I linked to above:

About a year and a half ago I started feeling very real fatigue even though I was sleeping more easily than ever before in terms of hours. I used to take an hour or more to drop off, now I can do it in minutes most nights.
My fatigue got so bad that by afternoon I was having to force myself to keep going, and by the time I got home and plopped in front of the computer to do my 'tasks', I was literally dropping off in the chair,...something I had never done before. I knew something wasn't right when I almost went to sleep at traffic lights on the way home a couple of times.

This sounds like classic OSA especially since nothing else can explain the fatigue in all the tests you had.

As Pugsy says, false negative sleep studies are much more likely than false positives.

I bet you don't want another overnight lab sleep study.

However, why not get a home study as you mention for your own peace of mind? If doubting the diagnosis is going to make you less likely to continue, I would suggest having another sleep study.

There was a thread here in the last few days asking about home studies and several were recommended that looked very good.

viewtopic/t157600/Looking-for-home-test-info.html

Arlene1963 wrote:In November you wrote in the thread I linked to above:

About a year and a half ago I started feeling very real fatigue even though I was sleeping more easily than ever before in terms of hours. I used to take an hour or more to drop off, now I can do it in minutes most nights.
My fatigue got so bad that by afternoon I was having to force myself to keep going, and by the time I got home and plopped in front of the computer to do my 'tasks', I was literally dropping off in the chair,...something I had never done before. I knew something wasn't right when I almost went to sleep at traffic lights on the way home a couple of times.

This sounds like classic OSA especially since nothing else can explain the fatigue in all the tests you had.

As Pugsy says, false negative sleep studies are much more likely than false positives.

I bet you don't want another overnight lab sleep study.

However, why not get a home study as you mention for your own peace of mind? If doubting the diagnosis is going to make you less likely to continue, I would suggest having another sleep study.

There was a thread here in the last few days asking about home studies and several were recommended that looked very good.

viewtopic/t157600/Looking-for-home-test-info.html

There is no question about the fatigue. I know part of it is age, and the business I am in (which is demanding), but something is behind the days that I have to fight to keep going by late afternoon. You are correct as well about the testing I had done,....nothing majorly wrong with any of my bloodwork except my HDL is lower than my doc wants it, and I was told to start taking fish oil again, as well as to drink a glass of red wine a few times a week. Of course HDL has nothing to do with fatigue.

You are also correct about how I feel concerning another lab based sleep study. I am leaning heavily towards doing an in home version, as I only want to know for certain if I have some form of apnea. I don't really care right now how many minutes of what type of sleep I'm getting, I want to know if my breathing is stopping, and if my O2 levels are dropping too low. I already know I don't have restless legs from the first one.

Thanks much for your input,....I know people here get sick of newbies whining over their minor issues. I'm just looking for advice from those that know more about this than I do. I'm really confused as to the path I am on right now.

I got a recording oximeter through amazon because I wanted to see if I had bad desats during my apneas. The CMS50D was cheap and well worth the peace of mind. I'm still occasionally kissing 88% very briefly but mostly averaging 92% only during apneas - much better than my 76% before cpap.

I have really been compliant since this thread last week. I have likely used my cpap 90% of my sleep time, and have had better luck with the occasional large leaks as well. I started putting on a nasal strip at bedtime since the Brevida doesn't seem to be bothered by it at all, and my mouth breathing seems to have dropped off dramatically.

I left my settings at 7cm with an EPR of 2cm, and my AHI has been consistent in the .6 to 1.7 range this week. Centrals are staying low, and brief with an average of three a night of around 15 seconds,...no big deal!

The only discouraging news is in the fact that I don't 'feel' any different to be honest. I'm still getting very tired in the early evening some days, and I can't tie it to anything that is AHI or sleep related.

At the very least, I seem to be getting past the feeling of hating to sleep with this garb on. It's becoming not that big of a deal, although I'm not fully 'there' yet.

Mark55 wrote:I have really been compliant since this thread last week. . . .

Good work! As for the feelings of discouragement, remember that it can take more time than we would prefer to feel big changes. The improvements tend to increase gradually with consistent continued therapy. If one has had many years of untreated apnea, the body has a lot of healing to do that won't happen in just a few short nights. I've been at this just over a year, and I find myself still dropping into a nap while sitting upright watching tv. At least the frequency has dropped way down!

The first hurdles are to get used to the equipment and to use it consistently. You're doing that! A next step could be to work on increasing your hours of sleep each night so your body can get the most time possible to repair itself; that's what needs to happen for us to feel good again.

Keep on keeping on!
Jean