Please Help. Need assistance to see if my Tech is Correct.

[akelv1n]

Hello everyone,

I'm a newbie and have some questions about IPAP machines and how they should normally work. I realize that that's a broad subject and that most of it depends on the individual and how the doctor prescribes the settings, however, I'm kind of up against some obstacles that I believe may be preventing me from receiving the best treatment possible.

Long story shortened(sort of) , I've been through two sleep studies so far where during the first discovered that I was having an Apnea event once to twice every minute. The second was setup to discern if using a CPAP would help reduce or prevent Apnea events. Also, during each visit/follow-up, I spoke to a different doctor each time which was slightly confusing but not having gone through this process I have no idea what the norm is. The follow-up after the second study was with a doctor who had failed to read my file ahead of time and was basing his information and plan all on the first study, not realizing I had already been through a study with the CPAP. When I pointed it out he seemed overly embarrassed and then rushed through the follow-up briskly going over the numbers and graphs from the second study which was confusing since he mentioned I had many Apnea events yet when I took a look at both sets of information including each graph they were significantly different where the first graph demonstrated a full bar and the second small blips here and there.

So moving on, he apparently set me up with an IPAP machine which I later learned was a machine that would mimic my inhalation as well as my exhalation. The Tech that came to my house to set up the machine mentioned that the Smart Card was the prescription and that I could set my Ramp and Rise to settings that I felt comfortable with as I used the mask, however, these settings do not seem to have any impact that I can notice.

The problem that I'm having is that the Tech just doesn't seem all that credible. The first night I experienced a ton of alarms going off as Apnea events which kept waking up my wife all while having the mask on and awake. The next day I consulted with the Tech who worked very hard to convince me that the alarms are there for safety reasons and that it was a good thing to be woken up during each and every Apnea event totally discarding my many attempts to point out that they occurred while awake. Finally I stated plainly that I wouldn't use the machine unless he disabled the alarm. He didn't know how and stated that he would read the manual to find out how to do it. Later he called and said he found out how and would be by later to disable it, yet kept changing the times of the appointment until it was 6 p.m. and he to come out the next day.

So I contacted Respironics to find out the skinny and a Rep basically told me that the machine provides backup breaths and that the alarm should not have been activated in the first place. So out of frustration I worked about a half hour on the machine until I found out how to get into the settings to turn the alarm off . So the second night I used the machine and in the morning woke up having to use the restroom and put the mask back on to go back to sleep but was perplexed that the synchronization of the inhale and exhale seemed to be different. The exhale would begin before I had inhaled and it freaked me out so much that I just decided to wake up and call the Tech again.

So another eulogy about how many of his customers have called to say the same thing and that I would just have to get used to breathing with the machine, despite complaints of headaches, light-headedness, and feeling like the blood was rushing from my head if I sat up. The Tech just continued to tell me how it was a good thing and that I would get used to it. I believe he is only partially correct about that because I recognize that my breathing patterns are different during my sleep stage than when I'm awake, but the synchronization was so unnatural that I had wished that I had been given a CPAP.

So very sorry about the long explanation , but here are my settings in order clicking the right button -> IPAP = 14cm, 10cm, 10, time = 1.2s, Ramp = .30, Ramp Start = 6.0, Rise Time 5, Apnea 20(0), Patient = 15s, 16.7, Light = 1, Setup = 0. I'm using a Respironics BIPAP S/T Grey Model with Humidifier and Heat with a full face mask.

I do believe that ultimately my doctor will be the final say in all of this, but I'm frustrated because I believe the Tech is speaking out of his ... (nose). Can anyone give me some advice and validate whether or not the Tech is telling me the truth? I don't think he's intentionally lying, but I do feel like he doesn't know the answer so as a representative of his company is urged to try to make the patient feel like everything is normal.

Thanks for tolerating my long explanation and thanks in advance for your assistance.

Cheers.

[jda1000]

We use different machines (I have a Resmed), so I can't say much about your machine settings, etcetera. However, my delivery tech was a young mad nearly fresh out of business school. Nice enough, but I was a bit surprised his background was considered sufficient to teach me how to use the machine.

I have found cpaptalk.com considerably more useful in my treatment than the equipment provider's staff.

[Slinky]

And my experience has been that the local DME suppliers' RTs really don't know diddley-squat about the various brands and models xPAPs, especially bi-levels, that they provide except what the Quick SetUp Guide says for the pressure settings the sleep doctor included in the script and use the Default settings for everything else.

In addition I've found the vast majority of sleep doctors don't even look at the downloaded data except the compliance and the "averages". Many insist the fully data capable xPAP data isn't reliable or worthwhile, etc., etc. I've sat thru more than one spiel about the uselessness of the data collected by fully data capable devices, etc., etc. wasting my time and theirs that could better be utilized LISTENING to what problem I'm having and discussing how to "fix" that problem. I'd rather talk to a good RT who is FAMILIAR w/that brand and model xPAP and its options!! Or a good RPSGT who actually understands what the data means.

I say HURRAY for the manufacturers who developed fully data capable xPAPs and for the RPSGTs who manage to get a pretty darn good titration done whilst we sleep in unfamiliar surroundings and situation. As for the rest of the sleep profession .... snort ... not too many good ones available whether doctor or RT or whatever. WHEN and IF you do find good ones TREASURE THEM! They are much, much too RARE!

[rested gal]

I think Slinky is right about what happens all too often when DMEs have to set up something more than a plain cpap machine:

And my experience has been that the local DME suppliers' RTs really don't know diddley-squat about the various brands and models xPAPs, especially bi-levels, that they provide except what the Quick SetUp Guide says for the pressure settings the sleep doctor included in the script and use the Default settings for everything else.

akelv1n, I'm not a doctor or anything in the health care field. Just a cpap user who has tried a machine that can be set for "timed backup breaths", which is what the machine you were given can do. I don't need a timed backup rate. Just wanted to see what that kind of machine felt like. I didn't like using various "timed" rates at all. But as I said, I don't need "timed."

If a person doesn't absolutely need a timed backup rate to be set, that can be a most annoying, aggravating feeling -- the feeling of the machine switching at times to the higher inhale pressure (IPAP) while you're still exhaling.

I'm guessing that the back up rate set for you is for ten breaths per minute since you mentioned a setting of 10 right after you found the IPAP and EPAP pressure settings. If so, that would mean that if your breathing during each minute doesn't seem like it's going to reach the target of taking at least 10 breaths during the minute, the machine will switch to IPAP pressure at times, even if you are still in the midst of breathing out. If a person doesn't really need a backup rate to be set, that's what can make using an S/T machine a PITA. Feeling like one's exhalation has been cut off and feeling like you're being forced to breathe in again before you want to. But if a person really does need "timed back up", then yes, it is something to "get used to", but..... there are different brands and, more importantly, different TYPES of machines that can use timed backup rates.

What I'm about to say next, I'm not sure of at all, since I've not used the particular S/T machine you have. The S/T I tried was a different brand. One of the settings you came across -- time = 1.2s -- sounds like it might be the setting for how long the machine will let the higher inhale pressure keep blowing while you are inhaling. Blowing the higher IPAP pressure of 14 for 1.2 seconds of inhaling time. If the normal amount of time you actually breathe in is usually longer than 1.2 seconds, the machine is going to feel like it is cutting off your inhalation when it switches down to the lower EPAP (exhale pressure) after 1.2 seconds. That would be a major aggravation to me. Perhaps to you, too. IF that is a setting for "inspiration time", the most that setting can be set for is probably 3 seconds. I'd set it for 3 seconds...the most it can be set to.

That doesn't mean the machine would absolutely keep blowing the higher pressure for 3 full seconds even if you wanted to exhale before the 3 seconds was over. ANY time you start to exhale, a bilevel machine is going to switch down to the lower exhale pressure, even if it could keep delivering the inhalation pressure. Setting the inspiratory time for 3 seconds would insure that the machine would continue to use the IPAP pressure for as long as you are breathing in -- unless you normally do inhale for longer than 3 seconds, which would be rather unusual.

All that said, first and foremost I'd want to know WHAT they intended to treat in the first place, by giving you an S/T machine with a timed backup rate of breaths set.

I'd want to see the NPSG (nocturnal polysomnogram) report for both the diagnostic night and the titration night. Those reports should have a lot of histograms and/or charts on them -- not just be a one page summary report of each night, by the doctor who signed off on them.

If the diagnostic night showed almost exclusively central apneas rather than obstructive apneas, I'd want to be titrated again... on an adaptive servo ventilator machine rather than on a bilevel S/T machine. Specifically the ResMed VPAP AS machine. If I had Congestive Heart Failure (CHF) and had Cheyne-Stokes breathing, that's definitely the machine I'd want.

If the diagnostic night showed many obstructive apneas that needed more than a pressure of 10 to prevent them, along with many central apneas, I'd want to be titrated again... on an adaptive servo ventilator. Specifically the Respironics BiPAP Auto SV.

If the diagnostic night showed mostly obstructive apneas and none, or only a few central apneas, but the titration night showed a significant increase of central apneas (or showed centrals popping up when they didn't show up in the diagnostic study), I'd want a very experienced second opinion eye to see if the problem might be "complex sleep disordered breathing" (CSDB, also called CompSAS -- complex sleep apnea syndrome.) If that's the problem -- the application of CPAP causing central apneas -- and if they are not centrals that will go away if the body is given enough time to adjust to pressure -- again, I'd want a new titration night -- preferably using the Respironics BiPAP Auto SV first and then the ResMed VPAP AS, to see which machine was more effective AND more comfortable to me.

Yeah, that would be asking a lot for a sleep doctor to go along with. But you know, if effective treatment of "sleep apnea" is so important (and it is!) then it's equally important to know exactly what kind of sleep disordered breathing you're trying to treat, and once that's known, then be given the best machine to try to treat THAT sleep breathing disorder.

Throwing an S/T machine at "centrals" or at people with CHF is not what I think is the best idea. Not in this day and time. Not when there are Adaptive Servo Ventilator machines out there like the Respironics BiPAP Auto SV and the ResMed VPAP AS. But I'm not a doctor. I have no idea what your doctor saw on your sleep studies, or how he interpreted them, or what he knows about your health in general.

First, you've got to know what needs treating. Pin the doctor down about that. And...insist on the full NPSG reports from both study nights, so you can get a second opinion.

This business of "you just have to get used to it" applies to some things about "cpap", but not to everything. There ARE machines that are more effective and more comfortable to use than others, depending on what you're trying to treat. And there ARE settings adjustments on some machines that many RTs and DMEs and doctors don't realize can make a tremendous difference in comfort, yet still give effective treatment.

akelv1n, I think you're right to question whether the DME person who has set up your machine knows what they should know. And I'd definitely want to find out if an S/T machine using a timed backup rate is even the best machine for what needs treating.

I'd not accept the DME saying I had to "just have to get used to breathing with the machine" until I knew exactly what kind of sleep disordered breathing I had. Then I'd dig into this message board to try to figure out what machine would suit treating it well and as comfortably as possible.

Good luck!

[elader]

I have never heard of this sort of therapy. If I was you, I would make damn sure that you and your doc both understand what the heck is going on and what your treatment should be and how you should be monitored.

Dude, start getting angry.

[akelv1n]

Hi everyone, thanks a ton for all your help and valuable information. Rested Gal, you really hit it perfectly and I totally agree with you just as a newbie that after having read a bunch of info from here as well as on the Internet, it definitely seems apparent with my noted central apneas as well as regular apneas that I should have been given another study using the adaptive servo ventilator or placed with a machine like the Respironics auto SV. The one theme that kept coming up with my follow-ups is that due to my neurological condition as well as having Apnea events due to the part of the airway that relaxes and blocks my airway that the auto SV would be the ideal way to go, yet instead I was pretty disappointed that I was placed on a BIPAP without having gone through a sleep study with a BIPAP.

Also, thank you so much for your advice in noting my settings where what you are saying about the 1.2s setting having to due with the unnatural feeling of the device, causing me to be overly conscious about it and unable to get into a sleep state because of the stress of attempting to breath along with the machine. I feel some validation at least that I'm not just a newbie trying to get use to a machine that is obviously not working for me, or rather a machine with settings that are definitely not working with me.

As far as the Smartcard goes, I am becoming concerned since as it appears that the card records my events, I haven't been given any instructions to bring the card with me to my follow-up. So the whole thing seems wacky with a flaky tech, doctors who have no idea who did what and when, and a machine that is suppose to help me get some really good sleep yet is completely useless as is. And I think elader said it best about getting angry. I'm definitely there, and as in my usual way I'm starting out passive aggressive by playing with my settings while the card is out of the machine, and so far I think I'm using settings that seem to have the best affect during my sleep.

Since I decided to take the situation in my own hands, I decided to just be bold and with all the information that I've absorbed, especially all the advice about this machine in particular, I've discovered CPAP settings that greatly help with getting the device to work more naturally to my breathing, and have tried adjusting that 1.2s setting that was mentioned and have noticed much improvement with the way that I slept last night. I didn't wake up once, and my wife noticed that I seem to be completely peaceful and quite for a change, instead of the chainsaw/Harley that usually keeps my kids and her awake at times. I even woke up early this morning without the desire to go back to sleep and that's an improvement.

Am I crazy for making these changes as a complete newbie and having some information perhaps makes me a danger to myself? Sure, but when doctors and techs fail to properly respond to my concerns I think I have a duty to myself and my family to take charge of my own health management. It's a little scary to be sure, since I worry that the wrong settings can do serious harm to me during sleep, but it just seems to be the right thing to do.

If anyone thinks I'm wrong, obviously I refer to the much more experienced people here in this forum and appreciate advice and input.

Thanks again for all the help and info. It definitely provided me a clearer point of view.

Cheers.

[online money make]

My associate and I really loved reading this weblog submit, I was simply itching to know do you commerce featured posts? I'm at all times trying to find someone to make trades with and merely thought I'd ask.