Looking for APAP information and advice

[markrb]

After having my sleep study and failing miserably at being able to use a CPAP or a BIPAP machine I am looking into alternatives, including a dental appliance that I have now, but fear it is not enough. My Doctor allowed me to take a machine home to see if I could get used to it and I really tried, but just can't do it. I have a pretty deep seeded fear of suffocating as I almost died from a bad asthma attack when I was very young and it deeply affects me to this day. Strangely I am not claustrophobic, but have a problem with the air pressure going against my needing to breath out.

I read about the APAP here and am interested in finding out more. I tried a search, but got thousands of hits and the ones I looked at were unable to guide me.
If I understand them correctly they monitor your breathing and if an event occurs increases air pressure until it detects normal breathing has returned. My hope is that while I am awake and aware of the air pressure there will be little to none as it isn't until I fall asleep that the events occur and if I am asleep I will not notice the air pressure turning on and as such will not panic.
Is there a thread or a page some one could link for me that I can read up on them?
Are there any devices more highly recommended for people like me that have been unable to use traditional CPAP/BIPAP machines?

Honestly I am pretty scared that my only option will end up being painful mandible advancement surgery as I already had the UPP done some years ago.

I really have tried to read up before posting and always are pretty diligent about doing so, but in this case I have had very little luck.

Thanks for the advice,
Mark

[Janknitz]

have a pretty deep seeded fear of suffocating as I almost died from a bad asthma attack when I was very young and it deeply affects me to this day. Strangely I am not claustrophobic, but have a problem with the air pressure going against my needing to breath out.

A machine with expiratory pressure relief (EPR or Flex) will make it much more comfortable to breathe out and should greatly reduce your discomfort from that.

I read about the APAP here and am interested in finding out more. I tried a search, but got thousands of hits and the ones I looked at were unable to guide me.
If I understand them correctly they monitor your breathing and if an event occurs increases air pressure until it detects normal breathing has returned. My hope is that while I am awake and aware of the air pressure there will be little to none as it isn't until I fall asleep that the events occur and if I am asleep I will not notice the air pressure turning on and as such will not panic.
Is there a thread or a page some one could link for me that I can read up on them?
Are there any devices more highly recommended for people like me that have been unable to use traditional CPAP/BIPAP machines?

Start at the top of this page by clicking the lightbulb for the CPAP wiki. You will find all sorts of info there. Our hosts, CPAP.com, have a nice tutorial that explains APAP as well.

APAPs (and CPAPs for that matter) can have a "ramp" feature that starts the pressure out very low for patient comfort while awake. As you go into a deeper sleep stage and your need for pressure increases, the APAP will adjust accordingly. Surprisingly many of us find the ramp feature has the opposite effect—we feel like w aren’t getting enough air and feel like we are suffocating when the pressure is too low. The ramp feature is very helpful for SOME people who are new to CPAP, but most of us don’t use it beyond a few days or the first week. Nevertheless, it’s important to have that feature, in case it’s helpful for you.

I would leave “painful mandibular surgery” as a last resort. You may go through all that and STILL need CPAP, so you might as well resolve to adjust to CPAP in the first place. It’s not an easy adjustment, as you have found, but it CAN be done and you will feel worlds better after you get through the adjustment process.

[Emilia]

Hi Markrb and welcome to the forum! If you have a copy of your sleep study results, it might help if you can let us know what your event numbers look like. If you have moderate to serious OSA, you can not afford to be without a machine. If you know what type of machine you used and what mask, that may also help us understand what might help you feel more comfortable.

If your OSA is mild, a dental appliance may work for you, but my reading on them seems to indicate they don't work very well for most people. Cpap is still the gold standard treatment for these types of sleep disorders.

You will find that the veteran cpapers on this forum are an amazing resource to help you. I am a newbie, myself, and I have learned so much in just a couple of weeks, it makes my head spin. Knowledge is power!! Read, share, and learn..... Best of luck!

[jweeks]

After having my sleep study and failing miserably at being able to use a CPAP or a BIPAP machine I am looking into alternatives, including a dental appliance that I have now, but fear it is not enough. My Doctor allowed me to take a machine home to see if I could get used to it and I really tried, but just can't do it. I have a pretty deep seeded fear of suffocating as I almost died from a bad asthma attack when I was very young and it deeply affects me to this day.

Mark,

How long did you use the machine? Many folks find that the sensation of air pressure goes away after they get used to it. That can be anywhere from a few weeks to a few months. The type of mask might also make a difference. I use a Swift LT, and after about 90 days, I could not even feel the pressure any more.

Did you actually get to use a BiPAP machine in Bi-Level mode? I would think that might be the easiest to get used to since they track your breathing and reduce the pressure to allow you to breathe out. They normally don't prescribe BiPAP machines unless you have a very high pressure or have a more complex case. But if you fail on CPAP, you can make the case to get a BiPAP.

I very nearly freaked out when I first tried CPAP. I couldn't breathe out, especially as the pressure was raised. In fact, this problem ruined my first titration study. I found a few things that helped. First, timing the way I put on the mask so I was breathing in when I put the mask up to my face. This reduced the initial blast of air. Second, it helped to learn about the mask and how the anti-suffocation valve works. Now that I know how it works, I have no worries about suffocating. A third thing was understanding from a medical point of view how much damage OSA was doing to me, and understanding that I had no other options--I had to make it work or it was game over for me since I could not work a paying job when I was sleepy all the time.

I would get several opinions before considering surgery. That is rarely ever a total solution. It can reduce the amount of pressure that you need, but few folks get completely off the machine, and many folks find themselves right back at the same pressure levels within a few years. Dittos for a dental appliance. They can help, but are rarely the total solution. They can also cost as much as or more than a good machine. If you go this route, make sure you get a really good dentist who has a lot of experience with OSA, and not some drive by sales type of dentist out to make a quick buck.

Good luck, and please post back.

-john-

[Wulfman]

After having my sleep study and failing miserably at being able to use a CPAP or a BIPAP machine I am looking into alternatives, including a dental appliance that I have now, but fear it is not enough. My Doctor allowed me to take a machine home to see if I could get used to it and I really tried, but just can't do it. I have a pretty deep seeded fear of suffocating as I almost died from a bad asthma attack when I was very young and it deeply affects me to this day. Strangely I am not claustrophobic, but have a problem with the air pressure going against my needing to breath out.

I read about the APAP here and am interested in finding out more. I tried a search, but got thousands of hits and the ones I looked at were unable to guide me.
If I understand them correctly they monitor your breathing and if an event occurs increases air pressure until it detects normal breathing has returned. My hope is that while I am awake and aware of the air pressure there will be little to none as it isn't until I fall asleep that the events occur and if I am asleep I will not notice the air pressure turning on and as such will not panic.
Is there a thread or a page some one could link for me that I can read up on them?
Are there any devices more highly recommended for people like me that have been unable to use traditional CPAP/BIPAP machines?

Honestly I am pretty scared that my only option will end up being painful mandible advancement surgery as I already had the UPP done some years ago.

I really have tried to read up before posting and always are pretty diligent about doing so, but in this case I have had very little luck.

Thanks for the advice,
Mark

Please define "failing miserably".
What was the result of your initial sleep study? Were you classified as severe? moderate? mild?
Perhaps what you really needed was a machine that had "Exhale Relief"......like ResMed's EPR or Respironics' C-Flex or Bi-Flex........and "Ramp" (available on most machines and allows the pressure to rise over a period of time.
Depending on what an APAP detects, it may NOT lower the pressure again (although theoretically, it's supposed to).
Did they ever prescribe a pressure for you?
If you've already had a UPP (or UPPP), using an APAP may not work very well. Many people who have had the procedure find they need higher pressures and/or the person's breathing may cause the APAP and raise pressures unnecessarily.


Den

[markrb]

I have yet to actually see the numbers, but had a phone conversation with the nurse and she said I was in the severe range. I may have misheard her, but I thought she said I had a 101 incidents an hour. I am hoping she is wrong and it was 101 for the entire time I was asleep. I meet with my Doctor in two weeks. It would have been sooner, but she has to go get married. Geesh you would think she would put off something like that for me. j/k

I had access to a machine for several weeks and started out by waring the mask during the day and got used to that pretty quickly. It was an over the nose only mask, don't know the model as my doctor supplied everything. I then tried it with the machine on a low pressure every night and was unable to wear it no matter how hard I tried for more than about 2 minutes.

On my last sleep study they tried a BIPAP machine in Bi mode and I actually thought it was worse. I don't know the model of the machine or mask and I never actually saw the machine as it was in a cabinet next to the bed.

Thanks,
Mark

[Julie]

Hi, there is something to be said for not starting out on low pressure (ramp feature) every night,and the majority of us stop using that very quickly as we find that the initial phase, whether it's 5 mins. or 15, is harder to breathe through than just going straight to our scripted pressure(s). The feature's there for those (especially on scripted high pressures) who want it, but you don't need to use it at all. Have you tried not doing so?

[Wulfman]

Do you currently have a machine?
Do you have a prescription with which to purchase a machine?
Did they prescribe a pressure for you? (would be on the prescription)


Den

[torontoCPAPguy]

After having my sleep study and failing miserably at being able to use a CPAP or a BIPAP machine I am looking into alternatives, including a dental appliance that I have now, but fear it is not enough. My Doctor allowed me to take a machine home to see if I could get used to it and I really tried, but just can't do it. I have a pretty deep seeded fear of suffocating as I almost died from a bad asthma attack when I was very young and it deeply affects me to this day. Strangely I am not claustrophobic, but have a problem with the air pressure going against my needing to breath out.

I read about the APAP here and am interested in finding out more. I tried a search, but got thousands of hits and the ones I looked at were unable to guide me.
If I understand them correctly they monitor your breathing and if an event occurs increases air pressure until it detects normal breathing has returned. My hope is that while I am awake and aware of the air pressure there will be little to none as it isn't until I fall asleep that the events occur and if I am asleep I will not notice the air pressure turning on and as such will not panic.
Is there a thread or a page some one could link for me that I can read up on them?
Are there any devices more highly recommended for people like me that have been unable to use traditional CPAP/BIPAP machines?

Honestly I am pretty scared that my only option will end up being painful mandible advancement surgery as I already had the UPP done some years ago.

I really have tried to read up before posting and always are pretty diligent about doing so, but in this case I have had very little luck.

Thanks for the advice,
Mark

See if your supplier will permit you to use a ResMed S9, out of curiousity, set to APAP with your Rx pressure as the low end of the pressure range and perhaps 4cmH2O above that as the high end of your range. Set the EPR (Exhalation Pressure Relief) to -3 (or 3 on the dial) which will make exhaling a whole lot easier. And you might even set the machine to ramp up to your pressure over 5 or 20 minutes. I spent almost a month on life support last summer, mosly in lala land thank goodness. When I was awake at the end of the 'coma' I still had a ventilator mask on me breathing for me. It blew air in and sucked it out and the worst feeling in the world until I got used to it and let it do the work entirely. So I empathize with your dislike of any restrictions on normal breathing.

BUT, I think that you will find that the EPR makes something of a difference as I have no issues with exhaling on the S9. For reasons unknown it seems even better than the S8 did. Go figure.

I would sure avoid the surgery if I could. I now actually find the mask and blower comforting and helps me to fall asleep. Laid down to watch TV last night and put on my mask just in case I fell asleep and apparently was asleep withing mintues, awakening at 3 a.m. to come up to bed, where I put another mask on and fell back to sleep. I have an issue with waking up at 5:00 am or so every morning and this morning ws no different excepting that there was NO WAY I was going to fall back asleep. My night was over. So I am a bit tired today and will do my best to stay awake and active until at least 10 or 11 tonight. Am supposed to go pick up #1 son at the soaring association airfield about an hour and a half from home and bring him home for a couple of days as we are expecting rain for a couple of days... but don't think I will do that myself as I did not get a good night of sleep. We have a friend who had his driver's license yanked until he got onto APAP and he is now using a dental appliance but for some reason it appears to me that it is not working as well as it did when he first got it... so he is going to have to go back to APAP. They make no guarantees on the surgery nor on the dental appliances in these parts. Says something, no?

I would get a copy of my Rx and try a ResMed S9 Auto or S8 Autoset II.... you may have to play around with pressures but I think that eventually you will get used to the mask and the blower and will find it a comfort as I do. No more night sweats, low blood oxygen due to shallow breathing events, very few if any apnea events. Last night was the worst in months and I can feel it today. No idea why excepting I think I am coming down with a cold or my allergies have reached a zenith. Tonight I am going to capture the data and have a look in the AM. Think I will also charge up the oximeter and see what my blood oxygen is doing- it seems to be inversely related to blood pressure. Might even check blood pressures as I awaken during the night. Praying for a good night of sleep here... even when you get used to all the gear you have good nights and bad nights it would appear.

The APAP will sense the impending OSA event and will raise the pressure to avoid it if possible and then reduce the pressure slowly. It helpsfor some of us but not all.

It is difficult to comment any further, really, without knowing more. Get a copy of your Rx and perhaps the results of your sleep test. If you can get them posted I think that the more experienced voices on this forum will be of great help to you as they have been to me.

If you decide to go with an APAP like the S9 or S8 AUTO, you can buy them from cpap.com or on the cpapauction site. I have been dealing with cpap.com (our sponsor) and they have been great to deal with but cannot sell you anything until they have your Rx on file (scan it and mail it; or fax it).

Above all, hang in there until you start getting some relief. With 100 events an hour you are in the severe stage of OSA and need to be under medical supervision constantly. I know that we see our GP every two weeks at a minimum since coming out of hospital - he is like a conductor with an orchestra of specialists that we are referred to in order to get things squared away and as of right now I have two issues remaining; the first is getting my weight down to skinny and the other is dealing with my OSA which I am told by my respirologist is the most likely thing to kill me in my sleep of all the things I may have had wrong. It is a sneaky killer "He died peacefully in his sleep" - so keep at it and eventually you will get used to it, will get great nights of sleep and will start to feel better and better slowly but surely. I am still tired in the mornings but am told that I am brighter and more alert during the day since starting therapy. And the odds of my dying in my sleep have been reduced by something like 90% as a result.

[jdm2857]

You might also consider finding a good therapist to work with. You know the origins of your fear, and with a lot of work a therapist just might be able to help you work through this.

[markrb]

Thank you very much for the information. That was exactly what I was hoping for and more.

At this point I still don't have a prescription as I haven't had a follow-up with the Doctor yet only a phone consult with a nurse.

Could they give me a pressure without me actually using a machine there? I can't use theirs as they are all standard CPAP or BIPAP. The best I could hope for is to be able to get one of the machines mentioned and find I am able to use that and maybe they could figure pressures while I use that machine? Looking it up it seems to be about $800-$900 for the machine. Hopefully insurance will cover some and my work has a program that I might qualify for that will pay 50% of out of pocket costs for medically necessary procedures and equipment. Even if none of that comes through I am willing to pay out of pocket for something that may may my life better.

I have been losing weight, 27lbs so far, and also have a dental appliance I purchased from Canada to try myself (Somnoguard AP). I am slowly moving the jaw forward and unless it's just placebo effect I am feeling more awake and have more energy during the day. I am not counting on this long term, just something to that might make things a little better until I can find a long term solution which I hope one of those 2 machines can be.

I meet with the Doctor on the 20th and want to be as well informed as I can be about possible solutions. I tend to find that Doctors are not always up on the latest advancements as they can get comfortable with prescribing the same thing. If I can build a case for a particular type of solution and bring it to her with data to back it up I might just be able to work to find a solution. All of you are helping me in this and I thank you very much.

Mark

[Janknitz]

Could they give me a pressure without me actually using a machine there? I can't use theirs as they are all standard CPAP or BIPAP. The best I could hope for is to be able to get one of the machines mentioned and find I am able to use that and maybe they could figure pressures while I use that machine?

Some sleep centers (where I get treatment, for example) do home titrations on an autoPAP machine, but I would NOT recommend that for you because you've already said you did not tolerate the machine. So you really need to be observed during the test and work with an experienced technician who can help you figure out the mask and pressure issues, titrate the pressures, and observe your responses.

See this thread viewtopic/t54226/Hey-you-experts-exactl ... tions.html which explains how the titration is done. It's not a "standard CPAP or BIPAP" machine--it is a computerized system that will help them determine the correct pressures and type of machine you need.

Don't assume that your previous experience means you cannot use CPAP. You were not instructed and followed carefully enough to see where you were having problems and work to resolve those issues. The very low pressure was probably a big reason you didn't tolerate it--and your doctor, RT, and DME should really work closely with you this time to ensure a better experience.