Help! My first night with this Cpap…..ugh!

Hi Listmates.

Wow what a night! A little background: Diagnosed with sleep apnea in 2016. Tried 2 or 3 machines (both cpap & bipap) and different masks..but could not tolerate any of them. I have significant autoimmune issues. The use of the machines back then would dry out my head so badly..that I would wake up with migraine-like headaches. I would spend the whole day trying to rid of the headache..only to do it again the next night. I attempted to change settings to no avail. These were machines which included humidifiers. I gave up.

Fast forward to now. I have more autoimmune diseases..which cause significant symptomology with eye and nose dryness (Sjogren’s, Scleroderma, Dermatomyositis) I now have pulmonary hypertension (and one lung). My pulmonologist wanted me to try this again. Last night was my first night. I was perfectly okay when I started. As the night went on, I became more and more congested. I began to have huge sneezes and a bloody nose. I had to to quit. I now feel like I have a horrible sinus infection. I have a horrendous headache over my left eye. I have been sneezing all day.

They gave me little pillow cushions that go inside the nose.

Is this a pointless effort? Is a pressure setting too high? I feel like chucking this thing out the window. Any suggestions or similar experiences?

Thanks so much.
SjoDry

SjoDry,

I'm sorry that you are having such intense problems.

I want to start with this comment:

SjoDry wrote: ↑

Sat Dec 31, 2022 1:00 pm

They gave me little pillow cushions that go inside the nose.

I can't help but wonder if the severe problems you are having are being caused in part by shoving too much of the nasal pillow cushions up your nose. That's actually a pretty common beginner problem, and unfortunately many folks who work at DMEs don't know diddly-squat about how the nasal pillows are supposed to be fit.

Only the very tippy-tip of the cones are supposed to be inside the nostrils. And when nasal pillows are properly positioned, you should not be able to feel the cones touching any part of the inside of your nose. If you can feel the cones, you either have too much of the cone stuffed into your nose or the angle you have the the cones oriented in is not correct.

It's worth noting: If you've got too much of the cones inserted into your nostrils OR if you don't have the orientation of the cones correct, you can get all kinds of significant nasal irritation from those cones rubbing against the inside of your nostrils.

It would help us help you if we knew exactly which nasal pillows mask you are using and what size pillows you are using.


Next, it would help us answer many of your questions in a more useful way if we knew the following information:

Exactly what make and model machine are you using?

What mode are you using? Straight CPAP? APAP? bi-level?

What are your settings? In addition to telling us about the pressure settings, we also need to know what you have your humidifier set on. And if you are using a heated hose, it would help to know what temperature you have the hose set at.

Finally, do you typically breathe through your nose or your mouth when you are trying to get to sleep without using the CPAP machine?

All of these things can affect how your nasal mucosa and your sinuses react to the addition of CPAP pressure. Without knowing more about your particular situation, it's very difficult to make specific recommendations on what setting(s) you should be experimenting with in order to make the whole experience more bearable to you.

Wow what a night! A little background: Diagnosed with sleep apnea in 2016. Tried 2 or 3 machines (both cpap & bipap) and different masks..but could not tolerate any of them. I have significant autoimmune issues. The use of the machines back then would dry out my head so badly..that I would wake up with migraine-like headaches. I would spend the whole day trying to rid of the headache..only to do it again the next night. I attempted to change settings to no avail. These were machines which included humidifiers. I gave up.

Even though those machines had humidifiers, it's not at all clear from what you've written how you were using the humidifiers. It may be that your particular nose needs the humidity set all the way at its maximum setting even though that increases the chances of rainout. But it could also be that you had the humidity set too high and that your nose and sinuses really wanted drier air instead of more moist air.

Fast forward to now. I have more autoimmune diseases..which cause significant symptomology with eye and nose dryness (Sjogren’s, Scleroderma, Dermatomyositis)

It would help us help you if we knew what's been recommended in order to treat the eye and nose dryness from the Sjogren’s, Scleroderma, Dermatomyositis that you are dealing with.

In other words, are you using artificial tear eyedrops? If so, do you use them right before bed? What specific things are you doing to address the nasal dryness? Do you have a humidifier in your bedroom? Do you have a whole house humidifier on your forced air heater? Do you use something like Ayr gel to help keep your nose hydrated?

And prior to last night's disaster with the CPAP, how well are the things that you are doing actually treating the symptoms of eye and nose dryness?

I now have pulmonary hypertension (and one lung). My pulmonologist wanted me to try this again.

Untreated sleep apnea is a known cause for pulmonary hypertension, and untreated pulmonary hypertension can lead to significant heart disease. It's no wonder than your pulmonologist wants you to try CPAP again: CPAP is most likely the best, most effective way of treating the pulmonary hypertension.

You might want to read this article from the NIH:
https://www.ncbi.nlm.nih.gov/pmc/articl ... pertension.

Last night was my first night. I was perfectly okay when I started. As the night went on, I became more and more congested. I began to have huge sneezes and a bloody nose. I had to to quit.

More questions to help us help you:

When you say you were perfectly okay when you started, do you mean you were comfortable enough to actually get to sleep in a reasonable amount of time?

How long were you able to tolerate using the machine before you gave up? And did you get any sleep at all with the machine?

Did you wake up congested? Or did you start to get congested even before you fell asleep?

If I had to guess what was happening, I'd be betting on the idea that you are likely using a heated hose and that your machine has been set up with both the hose temperature and the humidifier set to "Auto". And your particular nose and sinuses are just not happy at all with that setting. But teasing apart what you should do is going to take some patience and effort on your part.

My own recommendations would be to set the hose temperature and humidifier level manually. But actual suggestions on where to start with those settings has to be based on knowing whether you felt the air coming into the mask was feeling too cold, too warm, or just about right. And as crazy as it sounds, it would also be useful to know a bit about your sleeping environment: What's the ambient air temperature in your bedroom? Do you use a room humidifier while sleeping?

I now feel like I have a horrible sinus infection. I have a horrendous headache over my left eye. I have been sneezing all day.

I remember feeling that way after my first (disastrous) titration study. It took me time to figure out how to route the hose so that the exhaust vents were not blowing in ways that were bouncing off the bedcovers and into my eyes or (just as bad) directly onto my chin and lips creating massive amounts of chapping. And yes, I do recall it taking some time for my nose to simply get used to having the extra air coming in through the mask.

Back with I was a newbie, I had to take meticulous care to proactively deal with the nasal congestion. At one point I was taking zyrtec (an antihistamine) every day, using a Neti pot about an hour before bed, and using two squirts of Flonase in each nostril right before masking up. That, combined with setting the humidifier pretty high, was enough to keep my nose from getting too congested while using the machine. During the daytime, if congestion or dryness was an issue, I used a lot of saline nasal sprays. About a year or so after I started, I was able to slowly back off on all this stuff. I think I quit taking the Zyrtec first. Then I got sloppy about not always doing the Neti pot. And finally I just quit using the Flonase when I ran out and didn't want to bother getting the script refilled because it was still not available over-the-counter.

Is this a pointless effort?

It's not a pointless effort. But you may have to work harder than some people to make this crazy therapy work for you. But given that you already have pulmonary hypertension, that ought to give you the motivation you need for sticking with CPAP this time: The consequences of pulmonary hypertension can be quite significant in terms of your overall health and sense of well being.

Is a pressure setting too high?

There's no way anybody here can answer that question based on what you've told us. But in general the pressure setting has to be high enough to properly support your upper airway and keep it from collapsing.

I feel like chucking this thing out the window. Any suggestions or similar experiences?

Quite a few of use have felt like chucking our machine out the window when we were just starting out. Quite a few of us have actually thrown the dang machine across the room in a fit on anger when we were still learning how to sleep and how to sleep well while using the machine.

Sometimes the best we can do is to take it one night at a time. And each night at bedtime tell ourselves that we're going to try to use the machine just for tonight and that we're going to try to use it all night long if possible. Don't worry about all those future nights since that can be overwhelming when you are struggling to figure everything out.

RobeySue,

Wow! Thank you so much for your response. So many variables to consider. I will def do some investigation to consider all of your great points.

Thanks so much.
SjoDry

And, of course, too much added humidification in a room/locale with naturally good humidity can cause congestion.