Where did all the help GO??

[racprops]

I am not complaining..well not much, BUT when I first joined I was getting lots of help and support, now I cannot flag down a cab.

I have a couple of new threads running with deeper questions and really need help understanding things and I am not getting any answers/help.

I keep waking up and ripping off my mask as I feel suffocated...

I really need help reading the reports of sleepyhead and help fixing this.

What’s up??


Rich

[Drowsy Dancer]

Well, in my case, I tend not to say much on ASV threads because I don't know anything about ASV, and I figure it's better to remain silent and be thought a fool than to open my mouth and remove all doubt.

[Kate M]

I am not complaining..well not much, BUT when I first joined I was getting lots of help and support, now I cannot flag down a cab.

I have a couple of new threads running with deeper questions and really need help understanding things and I am not getting any answers/help.

I keep waking up and ripping off my mask as I feel suffocated...

I really need help reading the reports of sleepyhead and help fixing this.

What’s up??


Rich

Hi Rich,

I am new here and know little, but maybe I can help a little since even though I know nothing I DID have a reaction to your "Help Reading Sleepyhead" post:

Please tell me what all this means and if I am seeing what I think is a major improvement:

Perhaps your question is a bit vague? "Please tell me what this all means" can be read as "I haven't read the help documentation and have no idea what this all is" or it could indicate a more detailed and advanced question about a specific graph and what it means about or to your own therapy. You gave no hints in your request for help. I would suggest sharing what do you think the major improvement is and asking some more specific questions about the sleepyhead data. It always helps to start the conversation off with some more detailed info to focus the responses.

Also, as Drowsy Dancer already pointed out, the ASV stuff is a little advanced for a lot of folks. It limits the number of users who feel qualified to respond. Better to have no response to that kind of question than to have a bad or misleading response! Then, you further limited it by making them think too hard about what you were really asking.

I do hope you find your answers soon!

Blessings,

Kate

[BlackSpinner]

There are only a few people who have the expertise you are looking for.
Sometimes they don't have their computer on, sometimes they work for a living.

[RandyJ]

I am not complaining..well not much, BUT when I first joined I was getting lots of help and support, now I cannot flag down a cab.

I have a couple of new threads running with deeper questions and really need help understanding things and I am not getting any answers/help.

I keep waking up and ripping off my mask as I feel suffocated...

I really need help reading the reports of sleepyhead and help fixing this.

What’s up??


Rich

Rich,

I have read your threads and, while I don't feel I am qualified to offer substantive help, I'll offer these suggestions:

1. Add "ASV" to this thread title. Those more familiar with complex apnea and your machine will be more likely to see it and actually read the thread. You could also do this with your other threads and add a post bumping them to the top.

2. Add info about when your last sleep study was, and what the results were, sleep doctor's comments, etc.

3. You mention feeling suffocation at 15cm pressure. I've never heard anyone complain of feeling suffocated at such a high pressure. What does your pulmonologist say?

4. Pugsy has posted a thread with a tutorial about understanding Sleepyhead reports. Give it a read if you haven't yet: viewtopic/t88983/Pugsys-PointersSleepyH ... nding.html

5. Ask specific questions whenever possible, and be aware that while the members of this forum really excel in general assistance to people having difficulty with cpap, the more complicated the case, especially when several co-morbidities are involved, the more difficult it is to offer useful assistance.

That said, I hope the wiser among us here will be able to help you in your particular situation.

[Pugsy]

We have no way to offer any help with you and your machine because we have no way to know what is going on or what past reports showed and you are changing things willy nilly after repeatedly being told that "IT TAKES TIME" when using ASV machine like you are using.

You elected not to have an in lab titraton with your ASV machine...believe me..it's hard enough to get optimal settings in a lab setting with the ASV.
Self titration on the ASV machine....Huge job to tackle and lots of education on your part is needed.

We don't know your history...haven't seen any reports from prior machines...we have zero way of knowing what primary problem was. Even IF we had access to all that history....it is extremely difficult for us to have any remote idea of what each one of those little intricate settings needs to be set at.

You show us a few SleepyHead reports that are pretty close to the ugliest reports I have ever and want us to help you fix it and the people who do have experience with your type of machine tell you to go slow but you don't. So you essentially start off right out the gate ignoring what they say. Well guess what is the worst thing that someone can do to piss off someone who is trying to help you....ignore them and yep..they will go away.

While we understand your frustrations....and your desire to fix last night's ugly reports with some sort of combination of various setting adjustments...it can't be done nightly and it can't be done with a lot of various changes getting implemented all at one time. There is no way to know what caused the change (if any).
BTW...bed to recliner to bed to recliner is considered a change.

ASV self titration is NOT something that someone should undertake unless they are EXTREMELY well educated on the ins and ours of their machine along with what the primary factor is they are wanting to fix. Minute changes at any level can make huge differences.

I don't mean to sound harsh...but I felt I needed to bring out the 2 X 4 ....
We don't know what magic combination of settings will offer you what you want...we have no way to know. Everybody is different. I could use a dart board and throw darts to give you some possible combinations...and even if I got super lucky and hit the lottery of perfect choices...it could take weeks/months for the body to show the response you want even IF the settings were optimal.
With ASV machines the body has to relearn how to breathe. It can take months to relearn.

I strongly urge you to get a proper in-lab titration. You aren't dealing with plain jane OSA or maybe just a handful of centrals here and there to worry about. You are dealing with a significant problem and you need proper input from the pros.

I can answer questions about specific items seen on the SleepyHead report but how to fix them???? Beats me.
You see what is going on...your breathing is a total train wreck...back to back centrals and I would bet my last dollar that Cheyenne Stokes Respiration is a huge factor without ever seeing a close up of the flow rate. Google it...with your history of open heart surgery....it is not to be taken lightly.
You need to get help from the real pros....not some dial a wingers here. We simply don't even have a clue where to start.
And we can't come up with an idea just by looking at a monstrous coyote ugly report.

[Pugsy]

I keep waking up and ripping off my mask as I feel suffocated...

Because you are suffocating and what I would expect to hear after seeing your reports.

I really need help reading the reports of sleepyhead and help fixing this.

Reading the reports is easy...fixing what you see is going to be EXTREMELY difficult because understanding what you see doesn't mean that SH can tell you how to fix it in your situation.

Also.. I am going to send you a link for Encore software for you to use. It will offer a different perspective for viewing the data. SleepyHead is not your best choice of software options in your situation.
Check your PM box in a couple of minutes.
EncoreGuide link this will show you examples of what you will see.
http://www.healthcare.philips.com/pwc_h ... _Guide.pdf

[Jimster]

Don't now how much help I can give you, but try sending Pugys a PM. That this first place I would look.

Now as to your feeling like you are suffocating more than likely you are, and that is why you are tearing off your mask.

I would suggest that you start wearing an Oximeter while you sleep. That should be a good indicator if your oxygen level is dropping for whatever reason. I use the CMS50D+ and bought it off of eBay for $42 including shipping and it works great. Very simple to use.

Dealing with Apnea on all levels is difficult to say the least. Due to the fact that you feel that you are suffocating I would also suggest that you check with your Doctor. Although this board has plenty of knowledgeable individuals on it you have to understand that most of us are only experienced based and not trained in Sleep Apnea, although I'm sure some more than likely have been. Until you can get a handle on this suffocation feeling and know for sure that you are not in danger, then by all means go to your Doctor.

I will tell you this, and that is if your suffocating feelings are coming from wearing your mask then wear it during the day while you are just resting to see if you get the same feeling. Also check your data for Leaks. I don't know when you started CPAP therapy, but I was told when I started that it would take me about 6 months to work everything out to my satisfaction, and that does seem to be holding true.

I wish you the best, just hang in there you will work it out in time.

Jim

[Jimster]

I need to check on posted posts before I post to keep down any confusion as to what I post.

I will try to do better.

Have a good day, and I'm glad that you heard from Pugys.

Everybody have a Great Week End,


Jim

[Pugsy]

I don't tackle dial a winging theories on ASV machines. I don't understand the ins and outs well enough. I leave that to the others that do understand the ins and outs of the ASV type of machines.
So other than using a dart board...I can't help for settings and people can make their own dart boards.

I can help with explanations of the terminology that is seen on reports but what to do to help fix stuff on ASV reports...I am no help.

I did send information on how to get Encore reports. If Rich sees a doctor about all this then the doctor will or should be familiar with Encore reports. The doctor won't have a clue as to what is shown in SleepyHead.

[NateS]

racprops,

As someone who, like you, also has a past history of heart bypass surgery and a later diagnosis of central apnea, and uses ASV, I need to add to the chorus of those warning you that you are playing with fire horsing around with your settings every night or two on your machine. Looking at your Events graphs ought to be scaring the hell out of you as it is scaring everyone here who sees your Events and reads what you are doing to mess around.

I recall you saying earlier in a post that someone named "Kathy" suggested to you that, since you have tried just about every possible setting of your own choosing with disastrous results, maybe you really ought to try your doctor's prescribed settings and stick with regular reviews of your progress with him. I am assuming that the person you named is someone who cares about you, your life and your health and well-being. Surely it is not a coincidence that her advice coincides with nearly all the advice you have received here.

Based upon your prior descriptions of your meetings with your doctor, I would guess that there is a good possibility that he is hoping and wishing you would fire him so that he will no longer have to worry about the consequences of his inability to convince you to follow his instructions and advice. You might want to reconsider your attitude when you next meet with him, engage in a bit of mea culpa after letting him know what you have been doing to yourself, and tell him you would like to turn your care back over to him. If that doesn't suit you, I would recommend finding a doctor whose advice you will respect and comply with.

But please do it quickly. The way you are now treating your body, and possibly neglecting your treatment and perhaps significantly aggravating your condition, may soon end in tragic results. We all hope not.

Good luck,

Nate

And, of course, when you are in better health and have established a history of consistent compliance with professional advice, we would then all like to hear about that project you described where you said you modified your car to get 50 miles to the gallon. Now that must have been a fascinating experiment!

[racprops]

racprops,

As someone who, like you, also has a past history of heart bypass surgery and a later diagnosis of central apnea, and uses ASV, I need to add to the chorus of those warning you that you are playing with fire horsing around with your settings every night or two on your machine. Looking at your Events graphs ought to be scaring the hell out of you as it is scaring everyone here who sees your Events and reads what you are doing to mess around.

First, sadly this has been jumping around as people seemed to stop reading and responding to my eailer threads. Sorry but a new thread seems to get noticed where a new post doesn't.

I started with my Doctors settings for the first two days and keep having to take the mask off within minutes of the ramp feature reaching it full pressure.

IT SEEMED to me if I cannot used it then it is a waste of time, money and space. I found as I do even not hard to exhale against the high pressure, so it was shutting me down. AND It seemed to almost blow the mask off my face with what seemed to be too much pressure.

And as I read up on centrals, complex centrals and how in my first sleep study I stopped snoring at 5 cm and how I got complex apneas on higher pressures it seemed to be a mistake to run me AT 10Cm.

And as I was very happy with the ramp's starting pressure and was still happy at 8cm, I thought they were more correct.

So I reset it to 8cm and ran it for a few days...BUT my reports looked as someone said, like a train wreak...

And I was still felling bad, then I got the full report of my second sleep study where I could plainly see I was better off at 9/15 than 10/15 where I readings jumped up again. So again I felt the Doctor had goofed.

And I tried talking with him only to have him rip me a new one over my changing the settings and NOT that I was having problems.

So having a Doctor more concerned in my obeying him than my health I really feel helpless, heck he did not want me to even get a reporting O2 reader...

So yes I tried lower EPAP settings and was getting no where when my wife Jackie suggested I revisit the Doctor's settings and they began to work, at least up to now..but now I cannot use it for a full night and once again I find exhaling a problem.




I recall you saying earlier in a post that someone named "Kathy" suggested to you that, since you have tried just about every possible setting of your own choosing with disastrous results, maybe you really ought to try your doctor's prescribed settings and stick with regular reviews of your progress with him. I am assuming that the person you named is someone who cares about you, your life and your health and well-being. Surely it is not a coincidence that her advice coincides with nearly all the advice you have received here.

I tried to follow your advice BUT until I can use it and then stand to use it when I sleep it seem a lost cause.

Based upon your prior descriptions of your meetings with your doctor, I would guess that there is a good possibility that he is hoping and wishing you would fire him so that he will no longer have to worry about the consequences of his inability to convince you to follow his instructions and advice. You might want to reconsider your attitude when you next meet with him, engage in a bit of mea culpa after letting him know what you have been doing to yourself, and tell him you would like to turn your care back over to him. If that doesn't suit you, I would recommend finding a doctor whose advice you will respect and comply with.

Finding a new Doctor seems the thing to do...one whom is not on power trips (ONLY he could preset my machine..not the company selling it to me..made me wait two days to get that done and it took 25 minutes to get there for a 10 minute set up and NO instructions nor was I checked out on my machine, just handed it and told to go home...)

Then not even wanting me to know about the SD card asked I bring the whole thing in when I met with him.

AND after all that said to come back in 60DAYS...

But please do it quickly. The way you are now treating your body, and possibly neglecting your treatment and perhaps significantly aggravating your condition, may soon end in tragic results. We all hope not.

I had a thread last week asking for a more helpful Doctor in Phoenix AZ.

Good luck,

Nate

And, of course, when you are in better health and have established a history of consistent compliance with professional advice, we would then all like to hear about that project you described where you said you modified your car to get 50 miles to the gallon. Now that must have been a fascinating experiment!

Sorry that is my hope not my results..so far...

[Kenwood]

I had a thread last week asking for a more helpful Doctor in Phoenix AZ.

I sent you a PM regarding that.

[racprops]

I know and I will be looking into them.

Sadly I fear they will say "We need our OWN sleep study.." and I cannot afford that...

I thought between two CPAP Sites I could get the help to figure all of this out, after all there is only 6 settings 7 (Rise time)if you turn off BiFlex and PS max is greater than zero...

Max Pressure

EPAP Min and Max

PS Min and Max

BPM (Usually auto)

TI if not using BPM on auto.

Flex type/BiFex settings 1, 2, 3.

And a few lock outs and alarms...

Doc's settings:

Max Pressure= 25cm

EPAP Min and Max 10/15

PS Min and Max 0/0

BPM (Usually auto) Auto

BiFex settings 3.

That is it, all of it....


OLD Car tuneups were more complex....

But sadly I have run into problems beyond most here have seen.

The big thing about ASV machines is hidden within its special programing...nothing I can touch. Nor seemly any one.

Only a fool would rise max pressure above 25cm.

Leaving only 5 adjustments or setting to change.

Not rocket science.

Rich

I had a thread last week asking for a more helpful Doctor in Phoenix AZ.

I sent you a PM regarding that.

[zoocrewphoto]

I started with my Doctors settings for the first two days and keep having to take the mask off within minutes of the ramp feature reaching it full pressure.

This is actually quite normal for most people. It takes awhile to get used to the mask, the air, and to really trust that the machine will take care of you.

IT SEEMED to me if I cannot used it then it is a waste of time, money and space. I found as I do even not hard to exhale against the high pressure, so it was shutting me down. AND It seemed to almost blow the mask off my face with what seemed to be too much pressure.

If it is blowing the mask off at 10, then the mask is NOT fitted well. Most masks will work fine at much higher pressures. If you are having mask issues, then post a separate topic as anybody here can help if they are familiar with your mask. We don't have to be ASV users to help with mask issues.

And as I read up on centrals, complex centrals and how in my first sleep study I stopped snoring at 5 cm and how I got complex apneas on higher pressures it seemed to be a mistake to run me AT 10Cm.

Snoring does not equal sleep apnea. My mom has severe sleep apnea, and she doesn't snore at all. She simply stops breathing...for LONG periods of time - over a minute. That is very serious. Don't assume that if your snoring stops, you are fine. You've got the data on your machine, so you can see if it is handling your events or not. It may take time to get used to your pressure, but it will come with time and experience...and patience.

I've been using my machine for a little over a year. Sometimes, I have great nights. Sometimes, I take my mask off in my sleep. I don't always remember why. Sometimes I do. Most nights are in between. Not awesome, but not bad either. And even my bad nights with cpap and better than my best nights without cpap. Give yourself some time to get used to it. Let yourself adjust to the pressure. Ask for help for mask fitting and other issues. Ask questions about your data. But try to slow down and let yourself adjust.