New BiPAP Machine

[Sleeplessintulsa]

How do I get the data from the machine to the program? My machine normally uses a modem to transfer the data somewhere to mysleepmapper, but that information isn't nearly as detailed. I don't think it has a hard drive on it. I tried putting in an SD card into it last night, but I didn't see any options for transferring data from the BPAP to the SD card.

*Added to my previous post*
Here's what I think I do know:
1) I have complex/central sleep apnea.
2) I experience a lot of arousals while sleeping, independent of the sleep apnea.
3) The BPAP machine does not correct the frequency of arousals in CSA.
4) Medical science does not know what is causing these arousals.
5) Medical science does not have a means of treating these arousals.

That being the case, why am I bothering to use the BPAP then, or any solution? It sounds to me like there's no viable solution for my problem. If that's the case, then is my only alternative to cope with this for the rest of my life? That's enormously depressing.

[Dubbayoo]

I seem to see many people talking about needing to change their levels. I don't understand why more people don't use the 30 day auto adjust period thing that the PR has? Mine seems to adjust even a year later. Are you guys talking about something different?

[Pugsy]

You don't have to do anything special to get the data that the machine stores onto the SD card.
Just put the SD card in the machine and wait till the machine is done with the card (takes a couple of minutes maybe) and the data that is stored in the internal memory will be on the SD card...then you use either SleepyHead or Encore.

Why use the machine if you aren't "seeing" any benefit?
Well sometimes we have to think of it as prevention...or stopping further damage..or preventing oxygen level drops or at least preventing the sleep disruptions or problems that come with obstructive or central sleep apnea.
Sometimes there is indeed "benefit" even if it isn't what you expected to see or feel.
We don't always notice that our oxygen levels don't drop anymore.

Just because a machine doesn't fix all our problems doesn't mean that it shouldn't be used to fix at least the problems that it is designed to fix.

My machine fixed my low oxygen headaches...don't have them any more but I still sometimes get really bad headaches caused from my messed up cervical spine. Just because it didn't cure all my headaches doesn't mean the machine isn't doing its job.

Finally, I understand your frustration and what you want to fix but you know it has only been a month and at this point we don't even know if the therapy is even optimal.

[Sleeplessintulsa]

Here's the info from last night's usage. It is a little short, just over 4 hours, when I've usually gotten 6-7 hours per day, but it will have to do. For some reason, it doesn't have nearly as much information on previous nights, probably because I didn't have the SD card in there, at the time, so this will have to do. You can click on the picture to get a larger image. Let me know if you see anything unusual here. Thanks again.

[Sleeplessintulsa]

I seem to see many people talking about needing to change their levels. I don't understand why more people don't use the 30 day auto adjust period thing that the PR has? Mine seems to adjust even a year later. Are you guys talking about something different?

My machine has Auto SV, so it already does that. It's still not good enough, nor is it getting the job done.

[Pugsy]

What is the AHI and the breakdown into each category index?
On the left side under the calendar and above the statistics..those colored bar graphs appear to be cut off.
Looks like the AHI is still maybe over 5...mainly hyponeas.
You can hide the calendar and get more details on the left side.

[Sleeplessintulsa]

Here's the AHI info. If it matters, the previous three days had an AHI of 3.74, 3.95, and 3.87, all mostly due to hypopnea.

[JDS74]

Here's what I think I do know:
1) I have complex/central sleep apnea.
2) I experience a lot of arousals while sleeping, independent of the sleep apnea.
3) The BPAP machine does not correct the frequency of arousals in CSA.
4) Medical science does not know what is causing these arousals.
5) Medical science does not have a means of treating these arousals.

That being the case, why am I bothering to use the BPAP then, or any solution? It sounds to me like there's no viable solution for my problem. If that's the case, then is my only alternative to cope with this for the rest of my life? That's enormously depressing.

What you may not know but can find out:
1) Whether or not you are receiving optimum therapy from your machine. Data from SleepyHead and/or Encore can help you figure this out.
2) What medical science can tell you about your arousals. Looking at you post of the SleepyHead report, it looks as if you were waking up or nearly so about once per hour during the night. That would represent a significant disturbance in your sleep architecture. What could also be contributing to the arousals are endocrine problems, heart problems, dietary problems, etc. Getting and using a recording pulse-oximeter will generate additional data that might help address these issues - especially the heart rate and oxygen saturation levels. A model like the CMS50F is easy to use and can interface with SleepyHead for integrated reporting.

Sometimes the food we eat can cause disturbances in our sleep that results in feeling really lousy the next day. A food journal can help identify issues of foods that disturb your sleep or to which you may have a mile allergy. Just three Hershey's kisses in the morning messes up my sleep that night. It's the caffeine that does it. You may have something like that. It's possible that you suffer from a form of GERDS and that is contributing to your sleep issues.
3) Whether or not your sleep hygiene is a contributor. Sleep Hygiene, if it is not optimum for you, can be a problem. Going to bed only when sleepy, going to bed only for sleep and masked up, not watching TV while in bed, not eating just before bed time, etc. are all issues of sleep hygiene.
4) Whether any medications you are taking may give symptoms that you are having. Some stay in the system for many hours. Looking for drug side effects for any meds can lead to changes in how you feel. I take a tiny dose of Trazodone at night to help improve how I feel the next day. Your primary physician or sleep doctor might have other suggestions along those lines.

You mentioned the use of Adderall but only in the morning. The serum half life of Adderall is 10-14 hours so that by bed time, about half of it is still circulating in your system. That could contribute to your arousals. A 40 mg dose taken at 9:00 AM leaves 20 mg still in your system by 9:00 PM and 10 mg still there by 9:00 AM the next morning. Amphetamines are tricky things and may be a subject you wish to discuss with the prescribing physician or pharmacist. If you are taking a lower dose, the serum levels will be proportionally lower. Adderall interacts with a variety of other compounds so it might be appropriate to bring a complete list of everything you are taking to your pharmacist for an interaction check - both prescription meds and OTC meds as well.

[Sleeplessintulsa]

In the past, I had used a food journal, in order to try and correlate what I'm doing to how I feel. This included ANYTHING that I put into my body: food, drugs, water, you name it. I also tracked my sleeping patterns during this time as well. Over the course of 2 months, I had what I would consider to be 12 good days, or 1-2 per week, which is completely unacceptable to me. Of those good days, I looked back at what I did on that day, and the previous couple days, in order to see if there was a correlation. I could not find anything. It appears to be completely random.

For example, one thing I suspect may help me is drinking more water. My feeling is that drinking water helps clear my head and lets me focus better. However, if everything else was the same, then drinking water should always help with that, but it does not. I'll have some days where I drink 8+ glasses of water and feel terrible, yet other days where I drink 4 and feel great. The same goes for sleep. I would sometimes sleep between 5-10 hours per day without the BPAP machine, with an average of about 7. Some days, I would sleep 9 hours and feel great, while others I would sleep 8 and feel terrible, and others I could sleep 6 hours and feel great. I can't draw any consistent conclusions based on my findings. There's just too many variables.

I usually go to bed and wake up at roughly the same time, give or take an hour, depending on how I'm feeling for the day. That's something I've never understood about having a fixed sleep schedule. The concept seems ludicrous to me. I'm going to have some days where I'm more tired than others, if only because I may being doing more chores, shopping, or various other physical activities on some days than others. Thus, isn't it logicial to say that my sleep should also vary, depending on my body's energy consumption?

There are four possibilities, including the aforementioned one I use now. If I fix my sleep time, then I'll almost always either be going to bed when I'm not tired, and sitting in bed for hours before going to sleep. Another scenario that would often happen is I'll be tired much earlier in the day, but can't go to sleep yet, and by the time I do, I'm wide awake by then. If I fix my wakeup time, then I either interrupt my sleep cycles and wake up feeling even worse than I do now, or I'll wakeup before I'm supposed too, then have to go back to sleep again. Fixing both my sleep and wakeup times compounds both problems. What I think works best (read: least bad) for me is what I do now, even though it's not nearly good enough, but it mitigates the bad nights.

As for the Adderall, that is certainly a problem, but the alternative is even worse. Due to my lack of focus, it's quite easy for me to get bored and fall into despair, especially late at night. While I am still trying to wean myself off of it, it's an extraordinarily difficult process. Every time I've tried, I get severely depressed, to the point where I feel like I might need to check into a hospital. It gets really bad. At least this way, with the Adderall, I feel like I have a remote amount of hope, I can at least function during the day, and I have enough focus to be able to distract myself from how terrible I otherwise feel. It's the lesser of two evils, by my estimation. Also, I was first diagnosed with sleep apnea a year before I started taking Adderall.

[JDS74]

What you describe is very encouraging. You are very motivated and disciplined.
Now you have a way to collect sleep data different from how you feel.

Having a regular bed time is a good thing but tempered by do you feel sleepy. If you feel sleepy earlier, go to bed earlier, if later, then later.
Don't ever lie in bed waiting to go to sleep. 20-30 minutes and not sleeping, then getup, go to another room and do something quiet and boring until you are sleepy.

Have you a pulse-oximeter? With one you can look at heart rate data and arousal. Arousals are frequently associated with hypopneas and a change in breathing pattern. Its easier to see this with Encore as you don't have to drill down in the breathing data - the waveform file lays out every breath and the event markers are superimposed.

[Sleeplessintulsa]

According to my sleep study, my SpO2 levels were about 95%, which I would imagine is pretty good. My heart rate is around 70-90 bpm.

Regarding hypopneas, they are the majority cause of my arousals. However, it's still under 5 AHI on most days, which I would think should be more than good enough for me to have observed some difference by now, if that were really the cause. I'm getting the impression that one of two things is true: either something really small is having a huge impact on my health, and I just haven't found it yet, or my sleep apnea is not the majority cause of my health problems. If the former is the case, I don't know how to track it down. If the latter is the case, I don't know what other potential causes I could investigate.

[JDS74]

A SpO2 level of 95% at night is quite good. Mine, with 3 liters of supplemental oxygen rarely gets there but close.
Your heart rate seems a little high for a sleeping rate - more like 60 or so would be more like it. Does your heart rate spike at night? Mine averages around 60 BPM with spikes up to 90+ that seem to coincide with arousals. Of course, each of us is very different and, as is said, mileage may vary .

Careful to not confuse correlation with causation.

When transitioning from a deeper stage of sleep via an arousal, it is common for the brain to switch gears and change control of breathing from O2 levels to CO2 levels. For most people, these triggers don't exactly coincide so that as the brain is switching, there is a pause or delay in the resumption of the next breath. During a sleep study, these events are ignored because they are not true apneic events - just pauses.

It may be that the hypopneas you are seeing are the result of the arousal and not the cause of the arousal. In my case, such is the situation. So I am still searching for the cause of the frequent arousals while continuing to use my ASV machine to treat the complex sleep apnea. I get additional symptoms related to the arousals. These are: frontal headache, flushing, full body sweating, increases in blood pressure. All of these are common to a type of endocrine tumor called a pheochromocytoma. Many tests, scans, etc. later and still no definitive diagnosis. I still believe that if I collect enough data, some day, some doctor will look at it all and say "I know what that is!"

So, do you have blood pressure issues? Have any of your blood tests shown any abnormalities either above or below the normal range - thyroid, hemoglobin levels, ferritin levels, metanephrines, etc. All of these can give 'feeling lousy" symptoms.

Do you have any episodes during the day that, if they happened during the night, would waken you?
Stress is a great contributor to bad sleep architecture. Any great stresses in your life?

It seems likely that the apnea issues are not related to your quality of life issues at all. The ASV is treating your complex apnea (AHI below 5 is considered well treated) and you should continue while trying to look elsewhere for other causes.
Have you consulted with a neurologist or and endocrinologist to see if they have an insights into what is going on?

[Sleeplessintulsa]

Yeah, my blood pressue and cholesterol are high, though I've never experienced chest pains, heart attacks, or strokes.

I had a blood test done late last year. All it found was that I was Vitamin D deficient, so I take a supplement for that now, but never felt any tangible results from it.

Aside from my health, the external conditions of my life are perfect. I'm just incapable of enjoying them, so it doesn't matter. It doesn't help that I have anxiety issues, and getting poor sleep doesn't help that.

I tried contacting several neurologists and other specialists. Most of them wouldn't give me the time of day, and none would let me make an appointment. Infact, on two occasions, upon calling them back and giving them my information, they said they never heard of me. The best I ever got out of one was a referral to see a psychiatrist, who I've already been seeing for most of my adult life, also to no avail. Everyone just keeps passing the buck onto someone else.

If this BPAP machine isn't helping, then I'm out of options. I have no viable treatment plan, no courses of action, and no means of coping with this life anymore. I don't know what else to do, but it's late, so I'll sleep on it. Oh well. I guess there's nothing that I can do with the BPAP machine, so I'll take my problems somewhere else, unless anyone has some helpful advice. Otherwise, thanks anyway.