beginning anew

[DeepBreathing]

My apologies re the bipap - I tend to think of bipap and ASV being the same but of course they're not.

Peter, that's a very good thought about using the APAP to treat the obstructives and not worry too much about the centrals if the O2 stays high enough. However, Goodonya did say that 86% of his events are centrals, which leads me to think he'll still have a problem even if all the obstructives were eliminated. This is why I recommend a rental period before committing a large sum of cash for a new machine - he can see if the APAP reduces his symptoms sufficiently, then make an informed purchase decision. Maybe there is a rent-to-buy scheme available?

[Peter_C]

Yes, I can't say anything against that at all. My point is that right now, he is using *nothing* whatsoever.

So, if the choice were nothing, or an APAP and Oximeter setup - he'd be miles ahead.

The big issue here is to find someone that's going to allow (say) a 90 day rental to get all the settings sorted out, and give his body enough time to see if his centrals decline.

I'd be curious to know what his settings were, and what type of mask he was using with 86% centrals? Correct me if I am wrong (please!),But aren't centrals the default catch-all for weird wide awake breathing, mouth breathing, and holding your breath while rolling over?

I can't read the graphs well - I just don't get it - another member has been kind enough to help me going over mine, and he looks at more than just the centrals themselves - leak rate, O2 stats, respiration, etc to try to determine if an item is a central, or 'periodic breathing' etc...

But then too, my older machine cannot even 'see' centrals.

At the end of the day, money (or the lack of) is the deciding factor for many of us. Ideally, a new study, and starting from the beginning again is of course the best choice. Failing that, 90 days and a rental would be my next choice. But, if for whatever reason, the OP needs a fix sooner rather than later. Which means getting a machine, get plugged in, and start sleeping.

Are 'centrals' an issue if, they don't wake you, and, your O2 numbers stay reasonable? I do not know that answer?

[DeepBreathing]

Hi Peter, yes I believe centrals are an issue. They are an event when your breathing stops for 10 seconds or more, just like any other apnea. While it's true that some machines will record centrals during the transition to sleep period (which can be largely ignored), in general they need to be taken seriously.

The American Academy of Sleep Medicine International Classification of Sleep Disorders Revised Diagnostic and Coding Manual defines central sleep apnea as: "Central sleep apnea syndrome is characterized by a cessation or decrease of ventilatory effort during sleep and is usually associated with oxygen desaturation". The key being that in a central apnea the muscles of respiration (diaphragm etc) are not getting the message to "breathe now" from the brain. The sleep study shows this up by the chest and abdomen bands showing no attempt to take a breath. Other traces can help rule out the incidental types of events you mentioned. There may be a wide range of reasons for central apneas, often associated with heart or other vascular disorders or (rarely) brain lesions of some sort.

Centrals can also be caused by the body's reaction to breathing under CPAP pressure. These need to be eliminated (usually by gradually adjusting pressures up or down) as they are still an event where you stop breathing.

I agree that for Goodonya, almost anything is better than doing nothing, right now. I'm aware that he's on a very limited budget, so I don't want to suggest buying a machine that may not do the trick. I've looked at a couple of supplier sites, and some of them offer 30 day rentals. Most of the Aussie companies offer a four week rental for around $350, which includes three consultations with a therapist and three mask changes. If any of the American companies offer anything similar, that would be a great start. (90 days would be better of course). It would also be ideal if the rental price was deducted from the eventual price of the purchased machine.

In my case I had a four week package that blew out to seven weeks (at no extra cost) because we couldn't get the centrals under control. I tried three different machines and five (?) masks before settling on the ResMed VPAP Adapt. The cost of the four week trial was deducted from the purchase of the brand new ResMed.

[goodonya]

Hi, and happy holiday! Thank you for the response. I had the sleep study in 2010. I have never adjusted my AutoServe Bipap. I was working with the Dr. and the supplier. The only thing they ever changed was the flex. That was after I demanded change enraged at the destruction of what was left of my sleeplife. I may have been in trouble before the sleep study but after going on the prescribed pressures I got to find out what it was like to really be sleep deprived.
It was hellishly hard to have a seal at 24 lb. max pressure. Breaking seal was instant awake with a sound like the balloon squeal. The machine itself is designed to handle that pressure but it is very hard on it and it heats up. Which then heats the air which then wakes me up.
I was introduced to a therapy world where my treatment was worse than the problem. I stuck with the situation with determination following it into the abyss. After the switcheroo from a warranteed machine to an unwarranteed machine and the subsequent learning I still stuck with it.
In amongst all of that there were short periods of time I managed to get some real sleep and it was awesome. I believe that this therapy can work. I want to start anew like I said. I am curious about something I read in another post where someone said Respironics software is not accessible for laymen who are not directly working with or for Respironics.
Is there some kind of smartcard reader I have to buy as well as a new machine and this sleepyhead software? This next time around I am going to be somewhat in better control of my treatment in that no one is going to force me into a pressure that is such an unbearable situation. So it does not work as well at least I will be able to work it.
I do not mind buying a different brand or it being used and recertified as long as it is good and can handle the required action. I do not see outrageous prices on the internet like the supplier here on the ground charges. I want to learn to work the software and get this dialed in to where I am getting real sleep again. It was the new Dr. that said Apap. I have paid this doctor over 500 dollars out of pocket and did get a new easier prescription for the ASV Bipap Respironics machine that is malfunctioning but the supplier says is fine. I have had nothing but trouble with this machine or two machines as I have said. So I got the supplier to change the settings but they said they could only change way it works on the minimum or on the maximum not both. At any rate it is stuck on searching algorithms and it made no difference with the new prescription the machine pulses the mask on my face inhale and exhale all the time it is in use with my full face mask. Which I did(had to) change out every three months.
Please bear with me here as I learn and will follow through with a course of action and get through this. The amount of time/life I have thrown into the central sleep apnea situation is shocking to me but I see that it is better than croaking off early. I did do all the required check ups and there is not something else causing the central. It is happening on its own I guess. It still seems to me that it is a symptom and not a cause.

[me50]

I had a CPAP that was malfunctioning and I took it back to the DME and they swore nothing was wrong. I got tired of the BS because I knew something was wrong and the machine was less than a month old so no skin off the DME's back. I called the manufacturer and they gave them authorization to return the machine and for them to give me a new one that they had in stock. Sounds like your DME should have returned the machine to the manufacturer since it was under warranty. The DME isn't a tech for your machine. So, can you call the manufacturer and tell them what happened to your first machine and what the DME did and see what they say? It can't hurt.

[DeepBreathing]

I had a CPAP that was malfunctioning and I took it back to the DME and they swore nothing was wrong. I got tired of the BS because I knew something was wrong and the machine was less than a month old so no skin off the DME's back. I called the manufacturer and they gave them authorization to return the machine and for them to give me a new one that they had in stock. Sounds like your DME should have returned the machine to the manufacturer since it was under warranty. The DME isn't a tech for your machine. So, can you call the manufacturer and tell them what happened to your first machine and what the DME did and see what they say? It can't hurt.

I was just thinking the exact same thing. If you had the sleep test in 2010 and the machine came with a 5 year warranty, then it is still under warranty. Sounds to me like your DME is either a crook or hopelessly incompetent. Maybe this is something you could take up direct with the manufacturer, or alternatively through the better business bureau or small claims tribunal.

If you still have the Respironics machine why not try reducing the max pressure so it's not blowing at 24? You can get the instructions here: http://www.apneaboard.com/pr-system-one-...structions and download the clinicians manual here: http://www.apneaboard.com/adjust-cpap-pr...tup-manual

I'd suggest for a start you leave the epap alone, reduce the maximum pressure support to 10 and the maximum pressure to 19. That at least will get the pressure within reasonable bounds so that you can get some sleep with fewer leaks and hopefully without the machine overheating. Once you've got that established then you can take further steps.

Regarding the software - SleepyHead will give you everything you need. It's a free download, though Mark does appreciate a donation if it proves useful. The current model machines use a standard SD card (like a digital camera). If you don't have a card slot on your computer, you can buy a reader for a few dollars from Radio Shack. I think it is a very good thing to get the software - it will give you a much better appreciation of what's happening during your sleep, and gives you a better basis for adjusting and enhancing your therapy.

Edited to add: I believe there is one model Respironics ASV machine that SleepyHead can't handle. Murphy's law says it's your model but I don't know for sure. The software's free so it will cost you nothing to try it out.

[vsheline]

Hi goodonya,

Although an APAP machine may be better than nothing, I think an APAP machine would quite likely end up being a waste of money which delays you (or, heaven forbid, depletes your financial resources enough to prevent you) from being able to get a machine that can properly treat your condition. So be very sure you understand the full cost of a rental unit at the end of the one, two or three month rental period.

From your story, I think your best bet would be the ResMed S9 VPAP Adapt manufactured Nov 2012 or more recently. (In the USA this is called Ref# 36037, 36047 or 36057 depending on whether it is without humidifier or packaged with humidifier, or with humidifier and heated hose.) This new model automatically adjusts the EPAP only as high as needed to treat the obstructive apneas, and adjusts the IPAP (or Pressure Support, actually) only as high as needed to treat the centrals. The problem with this model is I think this new model would be very expensive unless you were lucky enough to find a used one on Craigslist or somewhere. (But remember, there are lots of scammers on Craigslist, so be very cautious or you will lose your money.)

I think the next best bet (and probably much more affordable) would be the S9 VPAP Adapt manufactured before Nov 2012. (In the USA this is called Ref# 36007, 36017 or 36027 depending on whether it is without humidifier or packaged with humidifier, or with humidifier and heated hose.) This is the model I use. The EPAP pressure is adjustable manually, and the IPAP (or Pressure Support, actually) adjusts automatically only as high as needed to treat the centrals.

SecondWind (Supplier #2 on our Supplier List) intermittently has used units in stock. (New "Open Box Special" units are also intermittently in stock, usually about $400 higher.) If they are out of stock this week or this month they may have one next week or next month. Below is a recent ad for a used one:

Low Hour Used ResMed S9 Adapt SV
1 year warranty on machine and humidifier. ClimateLine tubing included. Model 36007. $1449.00

[goodonya]

Hi, I have read through everything everyone wrote and am falling asleep. I am thanking you all! I am in Alaska. I live in a small village
halfway between the major cities here. I went to Anchorage the largest city thinking I would get the best care in 2010. I learned that there was one busy doctor that my insurance had a preferred provider for. One officious Physicians Assistant doing the actual work.
I did not know anything about all of this stuff. I took his recommend for a provider and they all seemed okay up until it came time for some kind of adjustment. Things devolved from there. The machine set at 24 is capable of it but it works the doggie out of it and it did not last long, nor the second one. I am done with Respironics. I recognize they are quality and so on. I just have to keep my stress level somewhere in the bearable zone. I will try and go direct to the main office of the supplier in Oregon down in the lower 48 states to see if I can salvage anything out of this. I like the sound of the Resmed machines as stated here. I was going by costs here at the supplier. I see that the Resmed is doable. The problem with the rental is they charge 200 and some dollars a month. The Resmed sounds like it does everything the Apap machine does plus and while more expensive it is actually for the central apneas. I have even less obstructive now than I did when I got sleep tested.
I invented some exercises that seem to help. I do not wake up anymore feeling like I snored a lot. I better knock out for now and once again thanks I will be on here again!

[me50]

It is sad that when you call a doctor's office to ask a question that the majority of the time you get a response from the medical assistant and they are the one answering the question, not the doctor. As an example, I was in my doctor's office for test results last week. The test results were negative so why they called me in for an appointment the very next day, which made me very concerned about the test results, unnecessarily so, is beyond me.

I took in everything that I take, including vitamins. The medical assistant looked at them and said, I don't care about your vitamins. I think, well, why not as they can affect any medication that I take or that the doctor prescribes for me.

Then, the nurse practitioner comes in. She looks at all of my vitamins and prescribed medication but still, nobody records them in my record. The nurse told me it isn't necessary for me to take a daily multiple vitamin and to quit taking them. The doctor had prescribed metoprolol for a medical test I was having but I didn't include that in my medication since that office prescribed it for me.

As I was leaving and the nurse had left the room, I proceeded to ask the medical assistant to have the nurse come back in after seeing her current patient as I had a question for her about the metoprolol. The medical assistant said you don't have to take it anymore since your test is over (not a medical doctor/nurse and not knowing what the doctor said, she was giving medical advice). Then I waited outside the office as instructed and another medical assistant told me that I had to keep taking it (again, not knowing what my chart notes from the doctor said). Eventually, I got to talk to the nurse and she admitted that she overlooked that the doctor had prescribed metoprolol for me and that I needed to keep taking it. I still have no clue as to why I am taking it. As a matter of fact, when I called to clarify something regarding what he told me in the office and what the prescription was written for, they couldn't find any notes about it being prescribed for me or find the order for the medical test, which they made a copy of before I left the office).

I also take welbutrin and I found out that there could be an interaction between welbutrin and metoprolol so I left a message for the medical assistant to ask the doctor (since they didn't seem to diligent about noting what medication and vitamins I take) if it was safe to take metoprolol if I had sleep apnea and mentioned that I take welbutrin and also wanted to confirm that taking both of these medications was okay. I get a voicemail message from the medical assistant while I was in an appointment that the doctor encouraged me to continue to take the metoprolol. That didn't answer my question so I called the medical assistant and she apologized for not being clear with me. Not one time did she mention sleep apnea nor the welbutrin. It makes me wonder why we pay for the knowledge of a doctor if we don't get that knowledge when asking a question. I have no issues getting an answer from the medical assistant as long as the answer comes from the doctor!

As a side note: The pharmacy also missed the fact that I take welbutrin and metoprolol so I inquired with the pharmacist (which is something that a patient should do and that the pharmacist says they do check all of our medications that are filled there to make sure there are no interactions with other medications prescribed when we get our prescriptions filled) and I was told that there is a chance that taking welbutrin and metoprolol that the welbutrin can further lower the effects of metoprolol, i.e., lower my heart rate even further. Before the medical test, my heart rate was 74 and within the normal range so I still don't know why I am required to take this medication.

So, pay attention to your medication, check reliable sources for drug interactions and be your own best advocate.

When our child was in the hospital for 2 years several years ago, I was given daily updates on changes in medical treatments, medication, etc. and I would research things I was not familiar with. Once, when the main doctor went on vacation, the on call doctor prescribed a new medication that had a big interaction with a medication my child was taking and it wasn't caught until I called back and told them about it. When the main doctor got back from vacation, we were talking and I mentioned the situation as well as a medical article I had gotten in the mail regarding my child's condition, etc. The doctor said that I knew about it before he was notified. That is pretty scary as it could have killed our child.

[goodonya]

Hi Peter, yes I believe centrals are an issue. They are an event when your breathing stops for 10 seconds or more, just like any other apnea. While it's true that some machines will record centrals during the transition to sleep period (which can be largely ignored), in general they need to be taken seriously.

The American Academy of Sleep Medicine International Classification of Sleep Disorders Revised Diagnostic and Coding Manual defines central sleep apnea as: "Central sleep apnea syndrome is characterized by a cessation or decrease of ventilatory effort during sleep and is usually associated with oxygen desaturation". The key being that in a central apnea the muscles of respiration (diaphragm etc) are not getting the message to "breathe now" from the brain. The sleep study shows this up by the chest and abdomen bands showing no attempt to take a breath. Other traces can help rule out the incidental types of events you mentioned. There may be a wide range of reasons for central apneas, often associated with heart or other vascular disorders or (rarely) brain lesions of some sort.

Centrals can also be caused by the body's reaction to breathing under CPAP pressure. These need to be eliminated (usually by gradually adjusting pressures up or down) as they are still an event where you stop breathing.

I agree that for Goodonya, almost anything is better than doing nothing, right now. I'm aware that he's on a very limited budget, so I don't want to suggest buying a machine that may not do the trick. I've looked at a couple of supplier sites, and some of them offer 30 day rentals. Most of the Aussie companies offer a four week rental for around $350, which includes three consultations with a therapist and three mask changes. If any of the American companies offer anything similar, that would be a great start. (90 days would be better of course). It would also be ideal if the rental price was deducted from the eventual price of the purchased machine.

In my case I had a four week package that blew out to seven weeks (at no extra cost) because we couldn't get the centrals under control. I tried three different machines and five (?) masks before settling on the ResMed VPAP Adapt. The cost of the four week trial was deducted from the purchase of the brand new ResMed.

Thank you Paul. The main problem is centrals. The regimen I was on with the ASV- Bipap from Respironics did help during the short periods of time I was able to control the leak situation with the 24 pressure, an the machine working properly. The original prescription I was rigidly held to was to have the auto breath turned off. I would often wake up not breathing at all wearing the mask. I was so addled from lack of sleep I could not even figure out that that function was turned off. I kept questioning at the supplier what is going on?

No one told me it was turned off until I asked for a copy of the prescription. Whoa. I am kicking myself hard now that I did not understand how important it was to learn for myself.

I am still in a holding pattern trying to get out and about and do more than eat and sleep. I appreciate your input. I will somehow break out of this at home cycle of whatever it. The bills are stacking up and I ain't moving. This is a very helpful forum.