CPAP hell- please help!

[jeff123816]

I feel like I've hit a brick wall in terms of making any further progress with my CPAP machine. I'd really appreciate some suggestions. Here’s my story…

I have been on CPAP now for two and a half months and am still horribly tired most days. I had two sleep studies- the first one showed an AHI of 40 arousals per hour. The second one was a titration study which determined that a pressure of 9.0 was best for me. Like I said, I have still been feeling extremely tired most days. On average, my AHI has been around 6.5. The higher it is, the worse I feel, so I know that there is a correlation. I also have chronic nasal congestion when sleeping. Usually, I will wake up in the morning and one nostril will be completely plugged. I am wearing a nasal pillow mask and taping my mouth. There have been a few nights when the congestion was not bad- my AHI was around 3.0 those nights and I felt good the next day.

My sleep clinic is so incredibly busy, appointments are 8-12 weeks out. About two weeks ago, I had my first follow up appointment at the sleep clinic since starting on CPAP. I go to Stanford University hospital and each time I go, I see a fellow for most of the duration of the appointment and then an attending doctor for maybe two minutes. Each time I go, I seem to get different fellows and attending doctors. So anyway, I told my story to the doctor at the last visit and he said that my pressure was intentionally started low and that it needed to be raised. He gave me a prescription for a pressure of 10.0. I told him about my nasal congestion and he looked in my nose- immediately, he stated that my nasal passages were swollen to a great extent. I explained that this was a normal state and that I wasn't sick. He wrote me a prescription for Flonase and said that he wanted to see me back in three weeks to see if it would work. Of course, there were no appointments available for eight weeks. If the Flonase didn't work, he said that they may want to do a procedure that would remove some of the inner tissue in my nose (!). I don't remember the name of the procedure but I had never heard of such a thing before.

So two weeks ago, I started at a pressure of 10.0. I also use an EPR of 3. The Flonase has done nothing to help my congestion. Yet, my AHI went down to 2.5 consistently at that pressure. The big problem, however, was a horrible case of aerophagia. I would wake up every 30 minutes or so horribly bloated. I would have to remove the tape from my mouth and belch or release the air in some other way. After a couple of days, I called the clinic about the aerophagia and, over the phone, they prescribed a generic form of Prilosec, which I believe is an acid reducer. I don't understand how that could help since the problem is air in my stomach, not acid but I started taking it nonetheless. The medication has done nothing to reduce the aerophagia. After a second week, I could no longer stand the aerophagia and set my machine to a pressure of 9.2 (with EPR of 3), which seems to be the maximum that my stomach can stand. I am back to square one with an AHI between 6-7.

I am not sure what to do next. It is so hard to get in to see a doctor, it seems like they just throw all the standard treatments at me at once, eg: raise the pressure, medicate the nose and stomach and hope something works. Problem is that nothing has worked and I still feel like I could fall asleep at the wheel on my commute to work. Can anyone throw some suggestions at me? I have heard about an AutoPAP machine that is supposed to be good for people suffering from aerophagia. Does should I broach that subject the next time I see the doctor? There is such a long time between appointments for me that I can't afford to waste another one.

Thanks everyone.

[roster]

Welcome Jeff,

Three suggestions:

1. Aerophagia prevention, see viewtopic.php?f=1&t=43663

2. Congestion, see Dr. Falcon's and my posts here viewtopic.php?f=1&t=36483&st=0&sk=t&sd=a

3. Get a full face mask. With congestion you may not be getting enough air through your nasal airway. Your mouth opens to bring in more air. With your mouth taped it won't open (Smart ain't I?). A full face mask will allow you to get additional air through your mouth when you are congested.

Work on those two things and later we may need to talk about seeing an ENT.

Regards,

[Wulfman]

If you're using a lot of humidification with your CPAP, turn it way down or off. Too much humidity can exacerbate nasal congestion.


Den

[Pugsy]

Take a look through this thread and pay particular attention to the comments from Wulfman about EPR.
viewtopic/t43760/What-do-clumps-of-A-am ... -mean.html

I have an APAP and I use it in auto mode. Once I experienced bad aerophagia with the Hybrid mask. I don't have any problems with swallowing air with any other mask I have tried. Just having an auto unit doesn't mean you won't swallow air.

That said. I don't use any exhale relief even when I use a minimum pressure of 11 cm. It can be done and I am not superwoman. I got better numbers and felt better when I turned off my CFlex (sort of like EPR).

If I were in your shoes I would turn off EPR or reduce it significantly and see if 10 cm of pressure still gives you air swallowing problems or maybe try 9 cm again. EPR of 3 is the equivalent of 3 cm reduction in therapy pressure. You may be needing those 3 cm to adequately treat the events.

Oh, I see some comments about humidifier. Some need less, I need more to relieve congestion. People's needs will vary on this one. You will need to experiment to find which works for you.

[Hawthorne]

I am thinking you maybe should drop your EPR to 2 or even 1. It probably won't help you 2 problems but may well bring the AHI down.

How high do you have your humdifier set? For some people, a very low setting ( 1or 2) or even pass over mode helps congestion. I do better as far as congestion is concerned with pass over mode (water in the chamber but no heat setting) except on very cold, dry winter nights. I am in Canada.

I do not have any aerophagia problems since I started using an auto with a narrow range. I did have problems with a straight cpap. I don't know if that helps for everyone but it's my experience.

[jeff123816]

Thanks everyone for your quick responses. I want to make sure that I am understanding this correctly. It sounds like a couple of you are suggesting that reducing or turning off the EPR will acually improve the aerophagia? The reason that I had the EPR on at all was that I was experiencing aerophagia at a pressure of 9cm. An EPR of 2 seemed to relieve it. But at a pressure of 10cm, the EPR, even when set at 3, is not enough to relieve the aerophagia.

I have no doubt that the higher pressure will improve my AHI. That was the case when I tried it at 10cm for a couple of weeks. The problem was that I was waking up almost every 30 minutes bloated and in pain. Even though the AHI was much lower, I obviously felt even worse than normal in the morning because I was fully awakend so many times each night.

I am pretty sure that the higher pressure worsens the aerophagia, which in turn means that I don't sleep well, despite a low AHI. On the other hand, a pressure of 9cm, along with the nasal congestion, seems not to be enough to sleep well either due to a high AHI.

I read about some of the posts about the congestion. I may try taking a Clairatin tonight, just to see if clearing the congestion could solve the problem. I somehow doubt it though.

[Pugsy]

I want to make sure that I am understanding this correctly. It sounds like a couple of you are suggesting that reducing or turning off the EPR will acually improve the aerophagia?

I was suggesting it as a potential way to improve AHI numbers and your general well being feeling. I was not aware that EPR reduction already had been known to make the aerophagia worse. You are sort of between a rock and a hard place. Seem to need a little higher pressure to feel better except for aerophagia but any backwards way to increase pressure (like reducing EPR) causes worse aerophagia.

Might benefit from some words of wisdom from those that have battled aerophagia and won. I am sorry but I haven't been down that road to offer anything except the one night I had it, I felt ill the entire next day. My solution was not to try that mask again....yet... So I am no help.

You are going to have to do battle on several fronts. Congestion, aerophagia, pressure needs, overall well being feeling...... Would be so much simpler if all we had to do was hook up to a machine and go to sleep.

[robertmarilyn]

Hi Jeff,

From the first night I used a machine (my titration study), I had problems with aerophagia. Almost all the doctors I saw said that this could NOT be happening and said if it was, that it must be because I was gasping air through my mouth. (I was not mouth breathing.) I had never had aerophagia or acid reflux until I used a machine. I kept being told that using CPAP usually helps folks acid reflux. But in my case, since it was causing acid reflux and aerophagia, it certainly wasn't going to help it.

After being put on several different anti reflux/GERD meds and having several medical tests that showed there was nothing wrong with my stomach, a mere two weeks ago my sleep doctor suggested that I try the generic form of Gas-X (simethicone). I take 250 mg before I go to bed and 250 mg when I get up. I still have the problem although it helps it a lot. I had gotten to where I could barely tolerate a pressure of 8 and could not tolerate a pressure any higher...now I can tolerate a pressure of 11.

I don't think doctors and folks who don't have this problem realize how painful it is. Hope this helps.
mar

[jdm2857]

If you want to get an appointment sooner, call the office every day or two and ask about cancellations. You'll get one if you can be flexible.

[Muse-Inc]

...I also have chronic nasal congestion when sleeping. Usually, I will wake up in the morning and one nostril will be completely plugged...looked in my nose- immediately, he stated that my nasal passages were swollen to a great extent...The Flonase has done nothing to help my congestion...

Many of us have this condition, we understand how frustrating it is to deal with...now if we just didn't have to wear a mask every night it'd be so much easier to live with. My current tactics include 1 spray of Astepro nasal antihistamine in each nostril in early evening, 1 spray Nasonex nasal steroid (Flonase doesn't work for me) in each nostril about 10-15 mins before maskup. If I am congested in the day, I use the Nasonex again OR if I'm totally plugged up I use the Grossan nasal irrigator with his saline mixture. I also take Quercetin and vitamin C as well as Coromega fish oil packettes.

When I wore the OptiLife mask (pillows), I had to keep my humidifer set to at least 3 in summer and at least 7/8 max during winter to prevent major congestion; now that I'm wearing the Hybrid mask (covers mouth and has nasal pillows), to avoid rainout in the nasal pillow part of this mask I set the humidifier on 1. Paradoxically, wearing this mask I have much less congestion..go figure, mask change = less congestion. I'm only 3 nights on this mask so this might change. I forgot the Nasonex last night and woke up with the same amt of congestion as I usualy do so I'm gonna skip it again tonight and see what happens. You might consider trying a hybrid style mask...Innomed (RespCare) Hybrid or ResMed Liberty...and see if either one helps.

...do a procedure that would remove some of the inner tissue in my nose (!). I don't remember the name of the procedure but I had never heard of such a thing before...

Was it radio ablation of the turbinates or coblation? That's using radio waves to reduce the size of the nasal turbinate...they numb the area and use a small probe that is inserted into the area and turned on for about 5 mins, it is a cold procedure that shrinks the tissue without heating. It is the most conservative of the gosh, I'd call them surgical procedures for treating congestion caused by the anatomy (physical structure) of the nasal passage. There are other surgical options as Rooster alluded to...he's had it all and had lots of useful info posted. Give the nasal steroid a good trial...might need to try a different brand...BEFORE submitting to a procedure. These sprays reduce inflammation (swelling) and that might be all you need to use consistently. If you have significant yr round nasal allergies, the new spray antihistamine (one of the azelastine HCL) might help -- been using Astepro for 4 wks now and it's really helped reduce my congestion enabling me to breathe thru my nose at night.

I wish you well on your CPAP progress...welcome back to the world of hoseheads!

[jules]

you fail to mention your leak numbers - how do you know you aren't opening your mouth? - taping doesn't solve all for everyone

I tend to agree with rooster - get a FFM and use it

get the software and see if the events are in groups or isolated too

[mars]

Problem is that nothing has worked and I still feel like I could fall asleep at the wheel on my commute to work. Can anyone throw some suggestions at me?

Hi Jeff

A lot of good suggestions above.

Now - to keep you alive whilst you are working on this you might find the following link helpful -

http://www.nonap.com.au/

I really wish this had been available when I was falling asleep at the wheel, and eventually had to stop driving in the late afternoon.

cheers

Mars

[jeff123816]

I hope you all don't mind me keeping this going for a while. I am committed to solving this problem and your suggestions and advice have already helped a great deal. One glaring omission. I forgot to mention this before: my leake rate is almost always zero when I use nasal pillows.

So last night, I set my machine to 9.0 pressure and an EPR of 1. (versus a pressure of 10.0 and EPR of 3) and took 250mg of generic Gas-x before bed. I slept well from about 10-3:30 and then started getting bloating and stomach pain again. I couldn't get back to sleep due to that issue. I'm sure that the medication had worn off by that point. My AHI for the night was approximately 4.2. Definitely an improvement over the previous night but I am still extremely tired due to only getting five hours of sleep. One of my nostrils was also entirely clogged once again when I woke up.

Here's my hypothesis: If my nose was clear all the time, I would be able to get decent AHI numbers at a pressure of 9.0 and EPR of 2 (which seems to be the max that my stomach can tolerate). Because it is constantly clogged, I have to raise the pressure and/or lower the EPR which then aggravates the stomach. So perhaps it would be better to address the congestion? I think I am going to try a pressure of 9.0, EPR of 2 and a Claritin tonight.

About the full face mask, I have a hybrid and used it only one night but it was a disaster. I had a ton of leakage around my mouth. I sleep on my side and so the seal around the mouth-portion of the mask would constantly become dislodged (despite it being as tight as I could stand) and I woke up with an AHI around 14. I do tape my mouth when using the nasal pillows but not because I breath through my mouth. Rather, it's because the muscles in my throat relax to the point that my cheeks blow up with air and my lips part. Without the tape I'd end up with fluttering lips. But I don't think that the use of a FFM would provide me with the option of breathing through my mouth when the nose is clogged. I just don't think my body will do it when I'm unconscious.

Thanks again everyone for your helpful comments.

[robertmarilyn]

So last night, I set my machine to 9.0 pressure and an EPR of 1. (versus a pressure of 10.0 and EPR of 3) and took 250mg of generic Gas-x before bed. I slept well from about 10-3:30 and then started getting bloating and stomach pain again. I couldn't get back to sleep due to that issue. I'm sure that the medication had worn off by that point. My AHI for the night was approximately 4.2. Definitely an improvement over the previous night but I am still extremely tired due to only getting five hours of sleep. One of my nostrils was also entirely clogged once again when I woke up.

For the best results with the Gax-X, we'd set an alarm during the night so that we could take more halfway through the night but since my sleep is so fragmented (there is a big post on my problems), there is no way I want to wake myself up in the middle of the night, in case I'm REALLY sleeping at that time. So the best I can do is take more Gas-X when I wake up. That at least gets me over any pain sooner, once I get up.

I have allergies too but have taken allergy meds for years so I don't have the congestion problem that you have.

mar

[LinkC]

"As tight as you can stand" isn't usually the answer to leakage. The seals on most masks need room to "inflate" to remain sealed under normal movement.