Help needed - feel worse using CPAP - long story

[bobbi4272]

Less chemicals? I think you may actually need more. Specifically a tranquilizer. That may be your best shot at this point. You seem to be bothered more from waking up due to sensory 'stimuli' like leak noises and a chilly nose more than snoring or waking up gasping. You really should get a prescription for something to knock you out, at least for the start of your therapy, so you can start to get better sleep and much needed rest. You need to get over this hurdle, first.

Re getting sick, that could simply be a coincidence. If you are drying out your nose and mouth, try raising the humidity setting (even try the manual humidity setting which raises the moisture higher than the auto humidity setting). Also try biotene rinse for your mouth and saline for your nose. Do you have the new Nano or the plain FX pillow mask?? If you use a nasal pillow mask that can definitely increase nasal/throat dryness. Perhaps if you have the Nano, it may be more leak prone for you at that pressure. You would be wise to try a good FF mask or even a good 'standard' nasal mask with better leak ratings. Finally, all the sinus/allergy drugs you take cause dryness and nasal irritation. Those alone could be causing or contributing to a good deal of your problems.

I am bothered by the leaks and frozen nose but the biggest problem is the congesting and sneezing I experience AFTER I've used CPAP. I have no energy and feel like I have severe allergies afterwards. I have had tons of tests that show I do not have allergies so that isn't the problem. The Nano actually is very comfortable and I didn't have a lot of leaks with it. I still get the frozen nose syndrome. During the day or when I do not use CPAP, I do not experience any congestion or sneezing.

I use Biotine and saline sprays. I also use Ayr gel in my nose which helps some. My doctor explained it this way: The air blowing into my nose dries out my nasal passages. My body reacts to it because when the nasal passages are dry, bacteria and viruses can enter. My nose then starts producing excess mucus to wash away the bacteria, viruses, irritants, etc. and then the sneezing and congestion starts. I am going to experiment with taking away some of the sprays to see if I'm experiencing a reaction to the stimuli. I am desperate and discouraged. There are times when I've felt people think I'm making this up but it is hard to make up getting so sick that you are diagnosed with emphysema! Thankfully that isn't the case, but it was a very scary situation. I get sick every time I use my machine. Sometimes it isn't as bad as others, but its bad enough that I really don't want to keep doing it. I only keep trying because I don't want to have a heart attack or worse.

[Pugsy]

Did you notice a difference between using the Classic mode of humidification and the hose cozy vs. the heated hose? Are you using the heated hose as a matter of convenience or because there was a significant difference in how frozen your nose was?

Even in Classic mode with the hose cozy I still had ice cube nose in the winter. Not as bad as in the "new humidification mode" which was horrible.
That's why I bought the heated hose. In the winter my bedroom is like 50 degrees.
I am now using the 60 series machine with the heated hose that came with it. I didn't need it this past summer but it started cooling off here a couple of weeks ago and I was getting some rain out in the hose so decided time to put the heated hose back on.
There's a huge difference in the ice cube nose when using heated hose when my bedroom is in the 50s.

What makes the machine worth having? I would love to figure this out but am not sure that a different machine will help me with the main problem of the severe congestion and sneezing. I know it would help pinpoint leak issues, apnea and hypopnea events, etc. If I can't solve the congestion issue, then I guess none of the rest matters.

Up to you what you think is worthwhile. Some people don't care about the data but I do. If I am going to go through all this stuff to try to optimally treat my OSA I darn well want confirmation that what I am doing is the best I can do. Some people don't care though.
There's more to the heated hose than just the warm nose...it also allows for more constant humidity delivery so that the nasal mucosa stay nice and happy. I happen to need lots of added moisture or I get horribly congested.
I happened to have the very same symptoms as you described a few times when I accidentally let the tank run dry by not adding water every night. People are different...some people don't need much if any added moisture and some people would almost need to snort water to keep the nasal mucosa happy. I didn't like the "new humidification system" mode for this reason. Even at 5 my nose was itchy and sneezy so even if I hadn't had ice cube nose with it I wasn't happy with it and would have preferred to use Classic Mode. Unfortunately Classic mode at 5 setting and 50 degree bedroom temps means condensation in the hose and you would be surprised how much noise a little water makes in the hose....not to mention the cold spray in the face.
For me a heated hose is much more than convenience...it eliminates aspects to this therapy that would disturb my sleep and anything that disturbs my sleep is unwanted.

Oh...it often takes more than one night for the nasal mucosa to get "happy" again.
Once I set the humidity at 1....and probably 5 times over the past 4 years I have let the tank go dry to the point that the nasal mucosa got dried out. Every time it took my nose 3 days to get back to normal and it was a miserable 3 days. Since I have only had those symptoms when I either didn't use water or reduced the setting I know that my symptoms were directly related to the amount of moisture delivered.
Now with the 60 series...I am using maximum setting which delivers 90% humidity. Feels great. Temperature isn't maxed out yet because the nights aren't horribly cool just yet. Often my nose is clearer in the AM than it is when I go to bed. The humidified air ...for me...allows me to breathe better.

All this cpap stuff comes with a YMMV sticker. All I can do it suggest that you keep trying things to see if you can get your issues resolved. What works for one person doesn't always work for the next person though.
Learn about your machine. Look to see if you have Classic mode and make sure you give it a try if you do.
Don't rely on the DME person to know everything because often they know very little about each machine's different functions.

[bobbi4272]

Did you notice a difference between using the Classic mode of humidification and the hose cozy vs. the heated hose? Are you using the heated hose as a matter of convenience or because there was a significant difference in how frozen your nose was?

Even in Classic mode with the hose cozy I still had ice cube nose in the winter. Not as bad as in the "new humidification mode" which was horrible.
That's why I bought the heated hose. In the winter my bedroom is like 50 degrees.
I am now using the 60 series machine with the heated hose that came with it. I didn't need it this past summer but it started cooling off here a couple of weeks ago and I was getting some rain out in the hose so decided time to put the heated hose back on.
There's a huge difference in the ice cube nose when using heated hose when my bedroom is in the 50s.

What makes the machine worth having? I would love to figure this out but am not sure that a different machine will help me with the main problem of the severe congestion and sneezing. I know it would help pinpoint leak issues, apnea and hypopnea events, etc. If I can't solve the congestion issue, then I guess none of the rest matters.

Up to you what you think is worthwhile. Some people don't care about the data but I do. If I am going to go through all this stuff to try to optimally treat my OSA I darn well want confirmation that what I am doing is the best I can do. Some people don't care though.
There's more to the heated hose than just the warm nose...it also allows for more constant humidity delivery so that the nasal mucosa stay nice and happy. I happen to need lots of added moisture or I get horribly congested.
I happened to have the very same symptoms as you described a few times when I accidentally let the tank run dry by not adding water every night. People are different...some people don't need much if any added moisture and some people would almost need to snort water to keep the nasal mucosa happy. I didn't like the "new humidification system" mode for this reason. Even at 5 my nose was itchy and sneezy so even if I hadn't had ice cube nose with it I wasn't happy with it and would have preferred to use Classic Mode. Unfortunately Classic mode at 5 setting and 50 degree bedroom temps means condensation in the hose and you would be surprised how much noise a little water makes in the hose....not to mention the cold spray in the face.
For me a heated hose is much more than convenience...it eliminates aspects to this therapy that would disturb my sleep and anything that disturbs my sleep is unwanted.

Oh...it often takes more than one night for the nasal mucosa to get "happy" again.
Once I set the humidity at 1....and probably 5 times over the past 4 years I have let the tank go dry to the point that the nasal mucosa got dried out. Every time it took my nose 3 days to get back to normal and it was a miserable 3 days. Since I have only had those symptoms when I either didn't use water or reduced the setting I know that my symptoms were directly related to the amount of moisture delivered.
Now with the 60 series...I am using maximum setting which delivers 90% humidity. Feels great. Temperature isn't maxed out yet because the nights aren't horribly cool just yet. Often my nose is clearer in the AM than it is when I go to bed. The humidified air ...for me...allows me to breathe better.

All this cpap stuff comes with a YMMV sticker. All I can do it suggest that you keep trying things to see if you can get your issues resolved. What works for one person doesn't always work for the next person though.
Learn about your machine. Look to see if you have Classic mode and make sure you give it a try if you do.
Don't rely on the DME person to know everything because often they know very little about each machine's different functions.

I checked my machine and I do have Classic mode. It's been at that setting since I've been using it the last few times. I will try it again tonight and see what happens. I don't rely on the DME person at all. I find it maddening that one will tell me one thing and someone else will say the opposite! I'm not getting any help from the doctors or the sleep techs either. Everyone keeps saying they haven't heard of anyone having the symptoms I've been having. No help at all. I'm hoping this site will get me some answers. You have been very informative and I appreciate the suggestions.

[bobbi4272]

I tried using my machine Wednesday night. The humidity was set at 3 at first. My nose was pretty cold and woke me up a couple of times. I bumped it up to 4 and it was a little better. The Nano nasal mask is pretty comfortable and I don't get a lot of leaks with it. My face was swollen in the morning and I kept sneezing. It wasn't as bad as it has been in the past.

I got a new mask yesterday. This time I got a full face mask, the Resmed Quattro Air for Her. I still woke up a few times with a cold nose. The leaks were pretty bad because I'm a restless sleeper. I kept waking up and re-adjusting the straps. I really hate the marks they leave on my face. It takes 8 or 9 hours for them to go away. The good news is that my nose wasn't going crazy with sneezing.

I'll try again tonight and see what happens. I think that the heated tubing be a big help. Any comments on CPAP pillows? I tried balling up my pillow to keep it away from the mask. It was okay but not optimal.

Thanks for the help.

[atarmiga]

This is a longshot, but I'm a big fan of NOT using chemicals. Take responsibility for what you are putting into your body. The average person consumes 700+ chemicals a day. The reason you might be sick is from a compromised immune system. The flonaze and other things could be making things worse. All the medical profession wants to do is give people pills and all people want to do is ask the medical profession for pills lol. My apologies if this sounds a bit harsh. I know what you are going through! I mean this with the greatest of sincerity, TAKE responsibility for what passes your lips and what you are consuming. Consider taking a break or seriously reduce ALL sugar and white flower intake. Sugar is a killer to the immune system. A gluten-free diet could change your situation but you have to really make the effort. The only real control people have when they are ill for a long time, is to closely monitor what they put in their body. Avoid all processed foods. Yes all. No more fancy, printed packages or boxes in the frozen food section. No more fast food. Get some exercise, even if it's walking for 15 or 20 minutes a day. Quit all soda. One can of coca cola has 16 teaspoons of sugar! Talk to your doctor and get off all unnecessary pills! People think taking a pill is going to help their problems. Most pills are toxic to the body. The side effects of what people are taking are sometimes worse than the problem lol. Don't think DIET. Think NUTRITION. Go see a dietitian or professional to help get things started if you don't have the willpower. Be cautious and refuse pills or tons of "vitamins." Everyone is pushing this stuff to make a dollar and the ingredients are not healthy for the body. Eat whole foods and start juicing fresh dark leafy, organic (if possible) vegetables every day. Focus on nutrition and unless you have a serious medical condition should see results and start feeling better with commitment and dedication in a short period of time. Consider getting off pills. They pose a health risk and could be the root of the problem. Look into cayenne pepper for an organic and successful reduction of migraines. There are healthy alternatives the pharmaceutical profession would not like people learning about! Sorry, not familiar with your equipment, but consider a heated hose if available. Getting the machine serviced and everything else cleaned is a good idea. There are also optional filters to add to the hoses. Stop smoking and all alcohol consumption. Sometimes good health requires a strict intake of nutritious foods and reduction of toxins and chemicals.

Good advice. Some people just don't want to hear they need to change their diet or exercise.