More questions about the different machine types

[markrb]

Please forgive me for all my questions. I am trying to get my head around all the machine types.
To get anyone reading my posts for the first time caught up.
I have no equipment or an actual prescription yet. Highlighted because in previous posts others have missed this.
I have not had a follow-up visit to the doctor yet, but did have a phone consult with a nurse who said I have severe sleep apnea. I go on the 20th to meet the doctor.
I have a deep seeded fear of suffocating from asthma that I have had throughout my life.
I was unable to use either machine at the sleep study and have tried without success in the past with a machine that I borrowed from a previous doctor.
I have already had the UPP surgery as the first doctor saw it as an alternative since I was unable to use the machine. This latest study shows that I still suffer.
At the sleep study I tried both a CPAP and a BIPAP, although I didn't notice any difference in BIPAP mode.
I then found out about APAP machines, but the more I read about them it seems that my best hope might be a BIPAP auto like maybe https://www.cpap.com/cpap-machine/resme ... chine.html.
I understand masks and other things can make a huge difference, but for now I want to stay focused on the machine type.
If I think my only hope of getting used to a machine would be to find one that has very low pressure to start, ramps up as needed while I am asleep and then can lower pressure as I breath out so as not to wake me, would this be an auto BIPAP or am I just looking for something that just doesn't exist?

I have looked over the machines at CPAP.com and would like to hear about experience with this type of machine as well. If possible a recommendation of a particular machine to look at would be nice too.

Thanks for all the help,
Mark

[who]

The machine you linked to is a great machine. I would recommend it.

[Julie]

Hi, I think you're confusing yourself a bit by looking at too many things at once (and we all do it). Unless a doctor prescribes a bipap for you, or you have an awful lot of money, it's very unlikely that you'd need one. What I'm curious about though, is that you say you have a deep seated fear of suffocation, but most of us feel we can't breathe on low (ramp) pressures, so have turned off the feature and start right off at our prescribed pressures. Maybe this is happening to you, but you don't realize the problem is the ramp... guess you'll have to test that out.

If you do have trouble exhaling (whether due to asthma or not), then an auto machine with either EPR or C-flex may help, as they relieve the pressure of exhaling while on the machine. And an auto machine would lower your pressure if necessary providing you've set the lower number just below your scripted pressure (and the higher one about 5 notches above it). If your prescription calls for a high number, then setting a low one much lower is pointless as you won't be treated well. I do however think you need to not sweat things now before having tried anything properly and see if you can rent an apap for a trial (don't let them know you know - and we'll help you to do it - how to reset pressures because it usually gets the DME's upset... takes away their power), giving a different set of very incrementally increased pressure settings a few days to a week each to see what works (one night just won't tell you anything). It seems the majority of us tend to end up with 10 as the 'straight' pressure that works, and set our machines to something like 8 for the low number, and 12 to 15 for the high one.

[markrb]

I was allowed to borrow a CPAP from my doctor some years ago and allowed to play with the pressure and the mask to try and get used to the feeling. I never could.
What happens to me is that I really freak out with almost any pressure. It was so bad that even the oxygen thing they put in your nose at the hospital bothers me and that pressure was nothing like the CPAP. I seem to have this phobia of not being able to exhale and it ramps from discomfort to outright terror over time, even though I consciously know there is nothing to fear. I am not really claustrophobic. The mask does bother me a bit, but I know I can get used to it as I have worn one without pressure for hours without fear.

What I am hoping is that by having a machine that does most or all of it's work after I am asleep and actually having events I will never know it's happening and at the same time work on getting rid of the fear completely.

Has anyone ever had a sleep study test where they put the mask on you, but not turn on the machine until you are asleep? I am thinking this way they might actually be able to find my pressure and I might be able to get through the test without going crazy. Just a thought.

The rent idea sounds like an ideal solution if I could find machines I liked and find a place that would do it. What is the typical cost and is there a time limit minimum? I would probably like to compare several machines.

Thanks again,
Mark

[who]

Some when starting out have to "practice" by using the machine during the day while watching TV or doing something else that distracts them from the fact that they are wearing the mask and experiencing the pressure. That gets them used to the pressure so that it is no big deal at night.

As explained, it is sometimes the case that the only way for a patient to get an autobilevel paid for by insurance is for the patient to make sure that everything he or she goes through in his or her attempts to use other types of machines gets well-documented so that the doc has plenty of ammunition to "prove" to insurance that the patient has "failed" all reasonable attempts to use those other types of machines (CPAP/APAP/BPAP). Some doctors hesitate to prescribe autobilevels at all because they represent (to the doc) too much work needed in order to document that "proof." So, depending on your doc, your circumstances, your insurance, and your financial situation in general, it may take some work to get a VPAP Auto 25.

[breakfast]

Hey Mark

I'm just next to you in Bedford, and I use Reliable Respiratory. My RT is Tricia and she is AWESOME. They do indeed rent machines-- my s9 is a rent-to-own.

My last titration study was at the Eliot and the sleep tech offered to turn off the blower until I was out. They can control it remotely.

I had some fears based on my previous attempt at xPAP, specifically of my pressure not being correct or being too strong that I couldn't breathe against it. I chose an APAP with EPR (expiratory pressure relief) and that seems to help me a whole lot.

If you want to come by and play with the S9 to see if it would be right for you, you are more than welcome to do so.

[markrb]

Thanks for the offer, I might just take you up on it. I would want to see what the Doctor and insurance say before I intrude on your hospitality.

I had mine at the Eliot too and I really wasn't impressed. The facility was nice, the bed was comfortable, but I just didn't get a warm fuzzy about the staff.

They didn't offer me alternatives and the tech who put the mask on was arguing with me when I told him I couldn't take the machine, instead off offering me alternatives he just kept saying "you need it, you have to use it," while I was freaking out and to make it worse, not to be prejudice, he didn't seem to speak fluent English and being half asleep I needed that person to be easily understandable. If I do another sleep study I don't want to do it there. I just can't chance getting him again.

Thanks I might be in touch,
Mark

[Janknitz]

Let me put this in perspective for you, Mark. The Medicare allowable rate for the monthly rental of a CPAP or AutoPAP machine is $85 to $101, depending on what state you're in. The Meicare allowable rate for montly rental of a BiPAP is $200 to $400 depending on machine and state. If you don't have Medicare, it may be more. Neither you nor your insurance company is going to want to pay for a BiPAP unless you absolutely need it.

An autopap will do what you are asking, to a degree. They are all going to blow at some pressure while you are still awake. The better machines all have some sort of expiratory pressure relief that will help your discomfort, and all of them work much better than machines did even two years ago.

BUT, you will still need help adjusting. It isn't a piece of cake.

Baby steps, baby steps, baby steps. First, get the right machine--you MUST have a data capable auto machine with pressure relief. That means a Resmed S9 autoset or a Phillips Respironics System One with Auto Aflex.

Next baby step, just put the mask on and turn on the machine during the DAY while you are wide awake, and doing something distracting (reading, watching t.v., listening to music). Keep practicing during the day while you are in full control until you can wear the mask comfortably without ripping it off. We can help with problems that arise in this phase, before you proceed to nighttime use.

[chunkyfrog]

The baby steps approach sounds very helpful.
Once you get used to the equipment while awake,
it should become easier to trust it when you are going to sleep.
Never give up.
This is very important.
It will be worth it--more even than you can imagine.
Best wishes in your adventure.

[breakfast]

Thanks for the offer, I might just take you up on it. I would want to see what the Doctor and insurance say before I intrude on your hospitality.

I had mine at the Eliot too and I really wasn't impressed. The facility was nice, the bed was comfortable, but I just didn't get a warm fuzzy about the staff.

They didn't offer me alternatives and the tech who put the mask on was arguing with me when I told him I couldn't take the machine, instead off offering me alternatives he just kept saying "you need it, you have to use it," while I was freaking out and to make it worse, not to be prejudice, he didn't seem to speak fluent English and being half asleep I needed that person to be easily understandable. If I do another sleep study I don't want to do it there. I just can't chance getting him again.

Thanks I might be in touch,
Mark

Yeesh, that sounds real unpleasant. I'm the same way about being half-asleep. Sometimes I can't even understand a native speaker. My tech was a guy called Steve, he is a CPAP patient himself and he was really wonderful. Actually everyone I've seen there was great, I just make sure to go on a Friday or a Monday. Hopefully, though, you are done with having to go in. If you do have to go back, see if you can request him before you try another hospital. CMC's lab isn't as comfortable.

I'm around all the time if you decide you'd like to check it out or if you need to bounce ideas off someone.

[jnk]

The facility was nice, the bed was comfortable, but I just didn't get a warm fuzzy about the staff.

People about to watch you sleep may make it a point not to stir up too much warmth or fuzziness.

he didn't seem to speak fluent English

I live in NYC. Speaking fluent English is frowned upon here.

[jweeks]

Hi,

In seeing Mark's other posting, it sounds like he gets a little panicky when breathing out under pressure. My thought is that a BiPAP could be set with the exhale very low, and he could increase it over time as he becomes increasingly desensitized to the fear. Of course, I have no clue about this, and I am probably talking out my butt, but it sounds like a good theory.

-john-

[markrb]

The nice thing about where I work is that if I qualify my company will pay 50% of my out of pocket expenses for DME.


The warm fuzzy wasn't about them watching me sleep. I had a lack of confidence in their ability. The nurse was a bit ditsy and the tech was very hard to understand.

Maybe I could start by renting a S9 autoset and if that doesn't work for me that could help in proving I need a true BIPAP Auto. That is if I can ever use a machine at all.

Thanks,
Mark

[jnk]

I had a lack of confidence in their ability. The nurse was a bit ditsy and the tech was very hard to understand.

That makes sense. You have every right to expect competence and professionalism. The tech who wires you up should come across harmless and not overly familiar. That tech isn't generally the guy who reads the results, so as long as he is good with glue and tape and moves deliberately, the rest shouldn't matter TOO much. And I've always had a kind of thing for ditsy nurses, but hey, that's just me. (The last nurse I saw kept dropping everything and forgetting what she was doing. It was highly entertaining, since she didn't have a needle in her hand at the time.)

That being said, I'm sorry that didn't go better for you. A sleep study can be an uncomfortable enough situation without things being odd in so many other ways. Sorry it wasn't a more pleasant experience. I was only trying to make you laugh.

jeff

[ozij]

Hi Mark,
2 weeks ago I wrote the following in another thread.

When I started therapy, 5 and something years ago, just looking at a human being wearing a nasal pillows mask made me queasy.
We come to this therapy traumatized by having experienced choking hundreds of times a night, every night. It happens when we're asleep, and the more primitive part of our brain, the one that is tuned to the brain's need for oxygen, the one that controls our breathing has been saving us from real danger by alerting our body to the real danger it is in. Night by night. Our brain knows that we are in grave danger -- because we have a breathing problem when we sleep. And night by night it does what it has to do to alert us: it pours anxiety causing hormones into our blood to wake us up.

As a person with asthma, Mark, you are also traumatized by the constriction in your airway that keeps you from exhaling properly even when you're awake. Simply put, your panic attacks have an objective source. And while by now you may responding to signals, like I did when I saw a person with nasal pillows, the origin of that response is objective, and has to be handled. Given your experience, it is no wonder that your brain is - to put it mildly - wary of having something on your face that may obstruct your breathing.

Now, when you know consciously what sleep apnea is, it is your job to convince that life saving part of your brain that you are finally listening to it - that your more evolved part had finally realized the danger, and you are doing something about it. And this can only be done by giving your brain repeated experiences of that fact. That primitive, life saving part of your brain isn't too good with words "you have to to, you need it" won't work. "I hear you, we're in this together" may.
You start by tell that panicking part that you finally know and appreciate what an important job it had in alerting you to danger, you thank it. Don't try to ignore it - it will scream louder. When the anxiety starts take the mask off, and tell your brain "I hear you, you're afraid we'll choke. You kept us from choking. But you see this mask here? This is to help us breathe. This is here to help you in your job of keeping me properly oxygenated. It reminds you of danger, but it is not dangerous . Thank you for alerting me so many times, I really was not aware of the danger - but now I know what the real danger is." And then ask for permission to put the mask on again. Promise you will take the mask off the minute your frightened part asks you to do so, and keep your promise, don't wait for panic, don't ignore the request to take off the mask. But then put the mask on again. You have to negotiate with a part of your brain that is intent on saving your life, you have to let that panicking part experience your new ability to take care of the threats, it has to learn to trust you - you will not let danger (or supposed danger) overwhelm it. But you also have to be very clear about the fact that now that things have changed you don't accept your brain's assessment that anything on your face puts you in grave danger. Which is why you will take off the mask at the slightest hint of discomfort, but then you will put it on again. Do that as many times as necessary.
When your life saving panicking part feels up to it, set yourself timed goals. "OK, brain, lets see if we can handle this for 5 minutes, that OK with you? I'll take it off after, 5, no matter what". (5 is an arbitrary number here - choose what feels right to you). And stick to your promise -- take the mask off after the agreed time, even if you feel fine. Your aim is establishing a feeling of trust within yourself. Extend the time only when your brain/self agree to the extension.

If you can teach yourself to trust your ability to avoid danger, you'll be able to use the machine and mask, both of which are not dangerous at all.
O.