Newbie struggling

[Hope1952]

Hello, I’m new on this website. I have known that I periodically stopped breathing at night for probably 20 years. And until recently, I thought I was the only one! Misery loves company. In recent years the apnea has gotten worse. I saw the first sleep specialist 2 years ago. My husband went with me to the doctor’s appointment and he told the doctor I didn’t snore. (even though my daughter says she sometimes hears me snoring from the other room) The doctor, who is a personal friend, said I probably had acid reflux. Then he and my husband started talking about airplanes and I felt dismissed.

My sleep only became more disturbed. I’ve noticed for years that I often awaken in the morning with my heart pounding and that my heart rate is much faster than it should be during the day. Recently I went to a different sleep doctor and had two studies done showing I had 37 shallow breathing events per hour. I was surprised because I felt I had slept better during the study than I usually do at home.

The doctor said the sleep study with cpap showed I needed a pressure of 7. He prescribed a REMstar Auto A-Flex machine with heated humidifier. I have a CPAP pillow which I use part of the time. The settings were originally set at 5-9 but it took too long for the machine to pressure up to what I needed once I stopped breathing. Over and over I didn’t even realize I’d dozed off and immediately I was awakened either gasping for air (with a suffocating mask on my face) or by the machine making more noise as it powered up. It was often the noise from the increased air blowing which woke me up before I realized I needed more oxygen. I’d just traded one problem for another.

Because I’d noticed the machine was often at 9 when I awoke, the doctor changed my prescription to 9-13. But there wasn’t any improvement with the adjustment. I’d still fall sleep over and over again, then the machine continually woke me up when the air started blowing harder. On the night before my next doctor’s appointment, I noticed that the machine was blowing 12.8 when it woke me up so I told the doctor that when I saw him the next day. He always checks the data from my card but I think he said it doesn’t record the pressure, only the average hours per night I use the machine.

(And by the way, my cpap was adjusted incorrectly by a therapist who, when I realized and called to complain, insisted I was wrong. I didn’t back down until she called the doctor’s office who verified what I said, and I then I had to take the machine back in and put up with her defensive attitude)

Typically I only use the machine for one hour a night because within that hour, I’m awakened 30-40 times. I use it until I feel too exhausted to try any longer. Each time I’m awakened, it becomes harder and harder for me to go back to sleep because I become less sleepy and more aware (and irritated and frustrated) that I’m awakening.
Based on what I told him about reading the pressure gauge, this week the doctor prescribed to have my machine adjusted again, this time to a constant pressure of 11. Now I’m swallowing air and constantly feeling like I have to burp. I “slept” about 1½ hours with the cpap last night, awakening several times in a panic when I sat bolt upright in bed needing to burp and breathe at the same time. Thankfully I didn’t rip my mask off, but that was the end of my CPAP use for the night.

Because I have Migraine Disease and have many airborne triggers, I habitually breathe shallowly when I’m awake. I don’t know if this is a habit that I take to bed with me or if I might also have central apnea. My nose is often stopped up when I try to sleep no matter where I am. (we use the airtight mattress and pillow covers which helps some)

I am happy I found this website and hope that I will find answers that work for me. I’m not sure what to do at this point. I don’t see the doctor again for another 6 weeks. Can someone tell me how to adjust my own machine? I was given NO manual with it. Should I change the machine to a lower setting? I can’t use it where it is right now. Should I leave it on constant pressure or put it back to Apap? Where can I buy software for my machine? (I think from reading posts that I might need the Encore Pro 2 version?) Any suggestions would be greatly appreciated. Thanks!

[brazospearl]

Hope,
Welcome to the forum! I know it's distressing to continue to struggle when you're trying to improve your breathing during your sleep. It sounds like there are likely pressure issues afoot, and possibly mask leaks as well. I don't have your machine, so I can't advise you on how to adjust it, but I know someone here will be able to help. Sometimes DMEs don't provide a manual so that you'll have to keep going to them to have adjustments made. That's stupid, but some of them operate that way, and justify it by implying only they have the knowledge to do what needs to be done. Never fear, though, our friends here will be able to point you in the right direction. Don't abandon hope, and practice patience. Keep reading and posting, and good luck!

[aroche]

Welcome to the forums! Hang in there, it will pay off greatly in the end.

I don't have your machine so I can't help there, but I will tell you that the best person to manage your therapy is you. only you know how you slept. Only you know how comfortable the system is for you. Only you know how the pressure is affecting you. get advice from the doc, but remember that it is up to you.

[dave21]

I would try to talk to your doctor again and tell them about the burping and that you think you are swallowing air more than breathing it. They might try to lower your pressure again.

One hour a night isn't good, you need to try to do a full night. Once you've spent a full night on the machine it will get better over time. I don't think you're trying to give it long enough and that could also be part of your problem in sticking with one our a night.

Some people adapt to CPAP just fine, some have problems with the pressure or the thought about wearing a mask. Personally I find it as natural as taking a walk but I know some find it more difficult.

If you have 20 years debt, that will take some time to clear up to make you feel better, but think about hte positives about not having your heard skip or thud or race. I've been through the same thing like most here, and you'll find that will far outweigh the negatives of wearing a mask or getting used to the pressure

Good luck!

Dave

[ozij]

Because I’d noticed the machine was often at 9 when I awoke, the doctor changed my prescription to 9-13. But there wasn’t any improvement with the adjustment. I’d still fall sleep over and over again, then the machine continually woke me up when the air started blowing harder. On the night before my next doctor’s appointment, I noticed that the machine was blowing 12.8 when it woke me up so I told the doctor that when I saw him the next day. He always checks the data from my card but I think he said it doesn’t record the pressure, only the average hours per night I use the machine.

If the doctor is right, the you don't have an automatic machine -- please check that again, just to be sure.

If you have an automatic machine, and the doctor said an automatic machine does not report the pressures you're at, then he may be a proper diagnostician of PSG's, but he has a snowball's chance in hell of setting your machine properly. All automatic machines record the pressure they blow at, and the events that occurred during the night - and if your doctor has been setting your pressure without viewing both pressure and AHI results, then he is worthless.

If you don't have all the details of you sleep study - get them. They are yours, legally, and you need them both to understand what is going on, and to show to a another doctor should you decide to switch again.

My other step would be to set the pressure at 7-9, no ramp. Automatic machines sometime go to higher pressures, because the events happening at lower pressures drive them up - and that may be avoided if you raise the minimum pressure. If the 7 cm/h2o recommended by the PSG was the correct pressure, starting out there may let you sleep well, without the troublesome side effects.

You can track your AHI on you machine's screen --
And I would list the AHI reported every morning -- I'm sure forum members who know the PR will instruct you how to get data.
And I would try to get the software. The software will show you what is driving your pressure up, and will help you decide how to continue. It will also help a knowledgeable doctor.

Welcome to forum, and good luck.
O.

[newhosehead]

I would try to talk to your doctor again and tell them about the burping and that you think you are swallowing air more than breathing it. They might try to lower your pressure again.
Dave

Hope, I do not have the expertise that so many do on this board, but I will echo Dave's comment above. I had this problem when my pressure was raised from 10 to 14 on straight cpap and thought the air swallowing alone would drive me from VPAP forever. Lowering pressure (mine is now at 12 with good results) can make an incredible difference.

I am glad you are here, this is the best place for answers around, and I wish you the best in this journey.

Jeanette

[Hope1952]

If you have an automatic machine, and the doctor said an automatic machine does not report the pressures you're at, then he may be a proper diagnostician of PSG's, but he has a snowball's chance in hell of setting your machine properly. All automatic machines record the pressure they blow at, and the events that occurred during the night - and if your doctor has been setting your pressure without viewing both pressure and AHI results, then he is worthless.

If you don't have all the details of you sleep study - get them. They are yours, legally, and you need them both to understand what is going on, and to show to a another doctor should you decide to switch again.

Thank you so much for your response. I do have an automatic machine. My doctor doesn't set it. I take it to a technicians group and once out of three times it was set, it was done inccorectly. (5-13 instead of 9-13) The 5 was way too low for me and from what I've been reading, probably too low for my mask. I was suffocating. So I learned that valuable piece of the puzzle from this site already. The 5 setting was worthless for my apnea, also. The technician acted ugly and condescending. Thanks to this group for helping me think that one through instead of feeling like I am bothersome. I was right and she was wrong and she felt threatened by that. I'm going to start taking charge of this process.

I iike my doctor. He may not know about machines (how can a sleep doctor not be knowledgeable about cpap machines?) but he is sympathetic and listens to me...which is why my machine is now on 11 and I'm swallowing air! I was wrong. He didn't know how to help me. I've got to get informed myself.

I don't like his receptionist. Her attitude is horrible and I feel intimidated everytime I ask for something. And I need a copy of my sleep study.

[Hope1952]

My other step would be to set the pressure at 7-9, no ramp. Automatic machines sometime go to higher pressures, because the events happening at lower pressures drive them up - and that may be avoided if you raise the minimum pressure. If the 7 cm/h2o recommended by the PSG was the correct pressure, starting out there may let you sleep well, without the troublesome side effects.

You can track your AHI on you machine's screen --
And I would list the AHI reported every morning -- I'm sure forum members who know the PR will instruct you how to get data.
And I would try to get the software. The software will show you what is driving your pressure up, and will help you decide how to continue. It will also help a knowledgeable doctor.

Welcome to forum, and good luck.
O.

Thank you for that suggestion. If I can figure out how to set my machine, I will set it at 7-9 and try it there. Then I've got to learn how to get data and find the correct software for my machine...

[pappapronta]

Hi Hope1952,

welcome to the community. Let me echo the other members' comments that you know best what's going on with your sleep issues. Trust your instinct. I would also not hesitate to switch sleep doctor if you can. While it's true that it can take a while to adjust to a CPAP, I think that newbies to the therapy should get much more support and information. I started CPAP five months ago and went through a learning curve similar to yours, and learned much more from the contributors on this board than from my sleep doctor (sad to say).

Onto your pressure setting. If you have a PR One like mine, there is a 'secret' clinician mode that allows you to change almost all the settings:
1. Select SETUP with the selector knob
2. Press both the selector knob and the ramp button down for 10 seconds (until you hear a beep)
3. You are now in clinician mode, you can go to the SETUP menu and change all sorts of settings include the min pressure, max pressure, flex type/mode, and the ramp.
4. Select EXIT or walk away from the machine for a couple of minutes to exit

If you would like a copy of the clinician manual private message me.

Good luck and keep experimenting. I found keeping a sleep diary very useful in finding out what worked.

[Hope1952]

I would try to talk to your doctor again and tell them about the burping and that you think you are swallowing air more than breathing it. They might try to lower your pressure again.

One hour a night isn't good, you need to try to do a full night. Once you've spent a full night on the machine it will get better over time. I don't think you're trying to give it long enough and that could also be part of your problem in sticking with one our a night.

Dave

I'm embarrassed to go back to the doctor so soon and it's hard to get an appointment. And I get to pay the $40 co-pay every visit. I'd rather do it myself if I can.

The longest I have been able to use the macine was 4 hours...one time. The reason I don't sleep with it longer than 1 or 1 1/2 hours a night is because of how many times it awakens me in that time frame when I have an apnea which is 30-40 times. After that, I am exhausted. I think if the pressure is changed to a smaller range like 7-9, then maybe that might help. Always before it was set at a range between four numbers 5-9 or 9-13 and the machine was constantly trying to keep up.

I think the mask is fine. It's the second one I've tried. Going to sleep isn't a problem for me with it on. Staying alseep is.

I often have a stopped up nose and the pressure from the mask on my face doesn't help. The congestion sometimes makes me struggle to breathe.

I'm assuming I can tell if the mask is leaking? I feel around the entire thing often and don't notice any air coming out except at the top where the vent is. Every once in a while, if I adjust my position on the pillow, I will feel and hear the air leaking, but it seems to seal up nicely after I move.

[Hope1952]

Hi Hope1952,

welcome to the community. Let me echo the other members' comments that you know best what's going on with your sleep issues. Trust your instinct. I would also not hesitate to switch sleep doctor if you can. While it's true that it can take a while to adjust to a CPAP, I think that newbies to the therapy should get much more support and information. I started CPAP five months ago and went through a learning curve similar to yours, and learned much more from the contributors on this board than from my sleep doctor (sad to say).

Onto your pressure setting. If you have a PR One like mine, there is a 'secret' clinician mode that allows you to change almost all the settings:
1. Select SETUP with the selector knob
2. Press both the selector knob and the ramp button down for 10 seconds (until you hear a beep)
3. You are now in clinician mode, you can go to the SETUP menu and change all sorts of settings include the min pressure, max pressure, flex type/mode, and the ramp.
4. Select EXIT or walk away from the machine for a couple of minutes to exit

If you would like a copy of the clinician manual private message me.

Good luck and keep experimenting. I found keeping a sleep diary very useful in finding out what worked.

Thank you, thank you! I will try changing the setting later today when I don't feel so tired.

[Hope1952]

Thank you Brazospearl, Aroche, and Jeannette for your encouragement. Even though I'm tired this morning, I slept better last night than most nights because I could see a light at the end of this tunnel. I don't feel alone in my struggle any longer.

[KatieW]

I'm not familiar with your cpap, as I have a Resmed. I started with a S8 AutoSet II, and was uncomfortable using the apap (range of pressures) setting--even with a very small range, at the maximum, I got aerophagia (bloating and pain), and I think the pressure moving up and down disturbed my sleep.

I changed to cpap (fixed pressure), and did much better. I had to tweak it a little, moving it up a little (.2 cm) at a time, until my apneas and hypopneas were lowered. But stopping short of when I got any aerophagia.

So if you find you cannot find a comfortable and effective range for yourself, you might try cpap setting. It seems to vary with the individual, what works best for them.

Welcome to the forum, and hang in there. You have a good machine, just need to make it work for you.

[Hope1952]

I changed to cpap (fixed pressure), and did much better. I had to tweak it a little, moving it up a little (.2 cm) at a time, until my apneas and hypopneas were lowered. But stopping short of when I got any aerophagia.

So if you find you cannot find a comfortable and effective range for yourself, you might try cpap setting. It seems to vary with the individual, what works best for them.

Welcome to the forum, and hang in there. You have a good machine, just need to make it work for you.

Thank you, Katie. I will add that to my list to try. It's great that the machine will do either variable or fixed pressure. I do have pain in one lung when the pressure is high.

[Hope1952]

Onto your pressure setting. If you have a PR One like mine, there is a 'secret' clinician mode that allows you to change almost all the settings:
1. Select SETUP with the selector knob
2. Press both the selector knob and the ramp button down for 10 seconds (until you hear a beep)
3. You are now in clinician mode, you can go to the SETUP menu and change all sorts of settings include the min pressure, max pressure, flex type/mode, and the ramp.
4. Select EXIT or walk away from the machine for a couple of minutes to exit

Good luck and keep experimenting. I found keeping a sleep diary very useful in finding out what worked.

Thank you pappapronta,
I changed my setting to auto 7-9 and it was very easy with the directions you provided.