CPAPtalk.com

This is a great thread, especially since I'm new to my machine (BiPAP). I've learned a lot from everyone's comments. I've always had swollen sinuses. My mother keeps telling me to use sterile saline drops, but whenever I do I start to get an infection (even if it's a brand new bottle). The only thing I can use on my nose is a spray like Flonase.

I had a few of the same problems the OP had, but I've been waiting since 1997 to be able to afford a PAP machine so there isn't anything I wouldn't do to make it work. My insurance will only cover machines from certain providers (it's an HMO, but it's a relatively good HMO considering I'm on SSDI). I have a Phillips Resperonics BiPAP Flow BiFlex machine. I was supposed to have an ST model, but the people who provided the machine didn't pay attention to the doctor's prescription and gave me this one because it cost less and my mother could afford to pay the 10 month co-pay for the machine.

My point in saying all this is that I had the same panic problems as the OP, but they were caused by the machine. I didn't realize this until while forcing myself to meet compliance I was sitting in a chair using the machine while I was awake. The machine was intermittently faulty and turned off all by itself. Of course, not receiving air into the mask I started to panic as I was using a full-face mask at the time. I literally had to get a prescription for Xanax to be able to use the machine again. Later, with the nose mask, I found myself waking up in the middle of the night feeling like I was suffocating because there was no air coming in and caught the machine flexing back and forth between my flex settings (12 and 9) like it had a short in it. After making sure it wasn't a setting problem, they finally switched it out for me this week. I found panic was an incredibly strong influence to keep me as a new user from wanting to work with my machine. I just wanted it too much.

My pulmonary doctor (who has his own sleep clinic with the most amazing beds in it) holds a free PAP clinic every Wednesday between 1:00 & 3:00PM, often a representative from a PAP sales company will be there (very knowledgeable). I found that the guy from the local distributing company who gave me the machine didn't tell me squat about using it other than never plug it in a surge suppressor. The clinic gave me a FREE nose mask to replace my full face mask and I not only stopped having to use the Xanax, but had less sinus problems. As someone who hasn't read as many posts because I'm new, it sounded like the OP was afraid of the mask and what it was causing (infection) even though they said infection was the reason they were going to quit using their machine. The people at the clinic helped me whittle down all the problems I was having using the machine so swapping the machine out would be justified (I had to pay to visit my doctor to get a script for the replacement machine due to my insurance even though it was the distributor's problem for giving me a bad machine). It's nice to speak to people online who have a lot of experience, but when it comes to your specific apnea problem sometimes you just need someone who's standing in front of you and is familiar with the air quality in your area when sinus factors in.

Because I'm so prone to provoking a sinus infection (I take these incredibly high-dose anti-oxidants that knock out any infection if you take them as soon as you notice a change in what you're coughing up), I have to be very careful with my sinuses. Neti pots seem to encourage a sinus infection the same way saline spray does. The only way I can successfully use my nose mask is to wear a Breath Right strip with it. I keep my humidity at 2, but I don't have a fancy hose. I did have to amp it up to 3 a couple nights, but I'm much more comfortable at 2. So much of my sinus problem is brought on by allergy and asthma problems in a perfect storm of physical dysfunction that is exacerbated by the fact that EVERYONE in my apartment building smokes and all that 2nd hand smokes comes in through my front door (people sitting outside to smoke - I have a fan blowing at the door to try and blow it back before it gets in) and every place the plumbing comes through the wall in my apartment. Even with all these obstacles, I started PAP therapy on July 7th with 38 events per hour and am down to 2 per hour. The guy who brought the replacement machine postulated that my shallow, faster breathing and central apnea might be the reason for remaining 2 events.

I hope the OP isn't being thwarted by a malfunctioning machine. When I first used mine, it didn't record my usage correctly due to my abnormal sleep cycle, but forcing myself to work with the machine has enabled me to have a much more regular sleep cycle. It's not perfect, but I actually see day hours of late. I agree with the person who said they had to micro manage their allergies to keep the post-nasal drip to a minimum to keep from having infections. I had to buy a wedge for my bed even before I got my BiPAP machine to keep the drip under control as much as possible. If I had allowed my sinus problems to go so far as to create an infection and was as distraught as the OP, I know my PAP clinic nurses would have taken the machine apart to make sure it wasn't contributing to the problem.

When the distributor gave me my machine, he told me it was used and that they had some type of commercial level antiseptic sterilizer they cleaned the machines with before they were sent out again. The OP never said whether their machine was new or used, whether they were sterilizing it with white apple cider vinegar or how frequently they were cleaning and sterilizing the removable parts to the machine. Anything could be contributing to the infections.

It looks like they have completely given up, but I hope they will at least keep the thought of trying to work with someone who is very knowledgeable about the machine in the back of their mind. The OP didn't say whether they purchased the machine or whether there was a monthly cost associated with it. I know I had to go without a CPAP machine from 1997 to this year because I simply couldn't afford it.

BlackSpinner wrote:

-SWS wrote: As it turns out vasomotor rhinitis or runny nose is a well-documented side effect of CPAP treatment:
https://www.google.com/search?q=cpap+si ... 36&bih=526

What else might the OP try for this known side-effect of CPAP? Anyone have ideas?

I would rather have a runny nose then a stroke. I also like seeing daylight, the ends of tv shows, doing things with my family, and other health issues resolved.

Well good for you eh do want a award for being polite? listen here i don't know who you think u are nor do i bloody care, but don't you dare run your damn mouth to me about crap you know absolutely nothing about. THE DOCTOR ordered me off of the CPAP, I did not just walk away from it. I tried every bloody thing in the world to make that machine work, and the only thing i got was a trip to e blanking r and more problems then i care to mention.. i am not in denial about a god da** thing lady, so take your bloviated B* and tell it to someone who cares..

you people are biased and continually bloviate about crap you have no idea about you tell people they are full of crap when they ever the mention problems they are having and they do not fit what you consider possible. Multiple DR's discussed my case and all agreed that the cpap is NOT an option for me. 1) my lungs do not tolerate it 2) i almost died from complications from it 3) the medicine to fix my nose gave me thrush and caused me nose bleeds... need i go on? Oh but i am sure those of you with an internet phd are ready to step in and tell me and my DRS are morons right? This is my last post on this forum, to those that were polite respectful and helpful thank u to those told me i was making excuses or that i was in denile you can kiss my BFA

Good luck to you with your various health issues, Oregonian. You came here seeking opinions and became angry at the opinions you didn't like. Good luck with that issue as well.

Peace and better health.

theoregonlife wrote: Well good for you eh do want a award for being polite? listen here i don't know who you think u are nor do i bloody care, but don't you dare run your damn mouth to me about crap you know absolutely nothing about. THE DOCTOR ordered me off of the CPAP, I did not just walk away from it. I tried every bloody thing in the world to make that machine work, and the only thing i got was a trip to e blanking r and more problems then i care to mention.. i am not in denial about a god da** thing lady, so take your bloviated B* and tell it to someone who cares..

A nice therapist and anger management course would do you a world of good.

theoregonlife wrote:you people are biased and continually bloviate about crap you have no idea about you tell people they are full of crap when they ever the mention problems they are having and they do not fit what you consider possible. Multiple DR's discussed my case and all agreed that the cpap is NOT an option for me. 1) my lungs do not tolerate it 2) i almost died from complications from it 3) the medicine to fix my nose gave me thrush and caused me nose bleeds... need i go on? Oh but i am sure those of you with an internet phd are ready to step in and tell me and my DRS are morons right? This is my last post on this forum, to those that were polite respectful and helpful thank u to those told me i was making excuses or that i was in denile you can kiss my BFA

I, as well, am deeply grieved by what has been posted about you here - moderators where are you?? To those who would disrespect someone in real need and add to their pain, may you be like chaff before the wind.

BlackSpinner wrote:

theoregonlife wrote: Well good for you eh do want a award for being polite? listen here i don't know who you think u are nor do i bloody care, but don't you dare run your damn mouth to me about crap you know absolutely nothing about. THE DOCTOR ordered me off of the CPAP, I did not just walk away from it. I tried every bloody thing in the world to make that machine work, and the only thing i got was a trip to e blanking r and more problems then i care to mention.. i am not in denial about a god da** thing lady, so take your bloviated B* and tell it to someone who cares..

A nice therapist and anger management course would do you a world of good.

you know lady why don't you tell your self that, you and a lot of others have done nothing but run there mouths and down play my pain as false. Until you have walked a mile in my shoes and dealt with what i have you can do your self a favor and zip it...

i am sorry for being upset and saying nasty words, but seriously some of u have wished me dead, said my problems were false and said i was in denile.. Excuse me none of you have walked in my shoes and dealt with the problems i have and for you all to do and say the things you have is well beyond words. I can here expecting adults, instead i was meant by children who have no respect for those of us that have problems. What in the heck is wrong with you people you should all be ashamed of your selves. As for the cpap i tried every medication, trick possible and was still made gravely ill. This device was supposed to keep me alive and instead it ended up in a ambulance trip and 4 days in the hospital.. Several DRS have discussed my case and all have come to the same conclusion that i needed immediately cease CPAP and never be on it or bipap again. In the end alot of you should be ashamed of your selves and i truly hope you are! Learn to act like adults and THINK ABOUT WHAT YOU SAY!

theoregonlife wrote:

BlackSpinner wrote:

theoregonlife wrote: Well good for you eh do want a award for being polite? listen here i don't know who you think u are nor do i bloody care, but don't you dare run your damn mouth to me about crap you know absolutely nothing about. THE DOCTOR ordered me off of the CPAP, I did not just walk away from it. I tried every bloody thing in the world to make that machine work, and the only thing i got was a trip to e blanking r and more problems then i care to mention.. i am not in denial about a god da** thing lady, so take your bloviated B* and tell it to someone who cares..

A nice therapist and anger management course would do you a world of good.

you know lady why don't you tell your self that, you and a lot of others have done nothing but run there mouths and down play my pain as false. Until you have walked a mile in my shoes and dealt with what i have you can do your self a favor and zip it...

Hi again theoregonlife!

Some times I kind of wonder if we might be looking at a new kind of troll?

If so, may they be like chaff before the wind indeed, with celerity.

Have a great weekend!

Todzo

Todzo wrote:

theoregonlife wrote:

BlackSpinner wrote:

theoregonlife wrote: Well good for you eh do want a award for being polite? listen here i don't know who you think u are nor do i bloody care, but don't you dare run your damn mouth to me about crap you know absolutely nothing about. THE DOCTOR ordered me off of the CPAP, I did not just walk away from it. I tried every bloody thing in the world to make that machine work, and the only thing i got was a trip to e blanking r and more problems then i care to mention.. i am not in denial about a god da** thing lady, so take your bloviated B* and tell it to someone who cares..

A nice therapist and anger management course would do you a world of good.

you know lady why don't you tell your self that, you and a lot of others have done nothing but run there mouths and down play my pain as false. Until you have walked a mile in my shoes and dealt with what i have you can do your self a favor and zip it...

Hi again theoregonlife!

Some times I kind of wonder if we might be looking at a new kind of troll?




If so, may they be like chaff before the wind indeed, with celerity.

Have a great weekend!

Todzo

Todzo... as someone who usually agrees with your posts, please tell me what you mean by, "a new kind of troll"? Thanks.

theoregonlife wrote:i am sorry for being upset and saying nasty words, but seriously some of u have wished me dead, said my problems were false and said i was in denile.. Excuse me none of you have walked in my shoes and dealt with the problems i have and for you all to do and say the things you have is well beyond words. I can here expecting adults, instead i was meant by children who have no respect for those of us that have problems. What in the heck is wrong with you people you should all be ashamed of your selves. As for the cpap i tried every medication, trick possible and was still made gravely ill. This device was supposed to keep me alive and instead it ended up in a ambulance trip and 4 days in the hospital.. Several DRS have discussed my case and all have come to the same conclusion that i needed immediately cease CPAP and never be on it or bipap again. In the end alot of you should be ashamed of your selves and i truly hope you are! Learn to act like adults and THINK ABOUT WHAT YOU SAY!

Have you discussed Provent with your doctors? I use both that and APAP, and they feel to me like totally different experiences, so maybe you could use it. I don't know whether any of your medical history would make it counter-indicated, but presumably your doctors would.

You know, all you posted the first time you wrote was...

"I have had this machine (resmed s9 auto) for less then 23 days in that time frame i have had 2 upper respiratory infections near constant congestion and chest pain that is always worse after a long nights use of the machine. I have tried flonase to deal with the congestion as well as a neti pot nothing is helping, and it has done nothing to rid my persistent tightness and and pain. Before this machine i have NEVER had brocitus or any lung issues, I am currently at my wits end with this machine and am ready to take my chances without it. Have any of you been in or seen anything similar to this? Also does anyone have any advice as i am getting a bit desperate. Thanks"

Not a word about all the doctors, what they said, the 4 ambulance trips, blah blah blah.... yet you just blew your stack at a long time member (actually more than one) of this forum as if she or any of us was supposed to have your history magically engraved on their brain... we tried to offer help, but in fact, you didn't return for quite a while and when that happens, people tend to get kind of cynical and a little punchy with their ideas, but that's not a reason for you to have gone berserk.

Sorry for your problems, most of us have had some along the way at some point, but we're not doctors, you don't respect our knowledge of, or belief in Cpap, so why would you think we could help in any case?

She is beginning to sound more like our old friend "Sick with Apnea".

theoregonlife wrote:In the end alot of you should be ashamed of your selves and i truly hope you are! Learn to act like adults and THINK ABOUT WHAT YOU SAY!

I'm thinking very clearly on what I'm about to say because I could easily be banned from the forum forever and I just got here. Luckily, my doctor has a fantastic support team for his PAP users so it doesn't matter.

Having been on the internet since IBM released it's first home PC, I know one thing. I'm not ashamed of anything I say and I'm not so fragile I need to tell people to act like adults to make myself feel better.

I read through your posts ONLY in this thread and while you say you did everything, what you've written doesn't really reflect the type of investigation that so many other users on this forum have done. What it does look like is you asked for advice, tried a few things, got an infection and decided a PAP machine wasn't for you. That's what you're supposed to do - what works for you.

The fact that you felt you needed to tell other people they weren't behaving appropriately because you felt you were being attacked - an adult would have simply left and unclicked the "subscribe to this thread" option; not continued to engage post after post after post. I wish you happiness and a health in your life that allows you to realize you don't NEED to keep argumentative posts going. YOU make the choice to continue to engage.

For the rest of you who may actually be reading this thread to weigh whether the suggestions in it could help you solve some of the problems you are having adjusting to your PAP machine when you have a lot of sinus problems, I had the same problem with chest tightness and pain when I went to the 2nd half of my sleep study, where they put you on an actual PAP machine and adjust the controls all night until they find the right combination. The nurse who did mine was the same nurse who did my original study. She (the machine automatically) kept trying to push too much air and keep the intake and exhale at the same level. It made my chest tight, it was painful and felt like it was ripping my lungs apart and while I tried very hard to endure it, I got to the point where I realized I was never going to be able to use a machine if this was what it was like and I told the nurse as much. It took her the next six hours to figure out the correct settings for me to tolerate since she had to do it by hand instead of letting the machine assess it. She was very nice about it, as apparently I wasn't the first person to require special attention.

I have horrible sinus problems - I almost NEVER am able to breathe through my nose and I constantly have post-nasal drip. Sometimes the Flonase gets rid of it, sometimes it only helps a bit. If you're having problems when they're trying to figure out the settings, don't try to meet the machine - make the machine meet your comfort level. If it takes all night, it takes all night. Because of my pulmonary problems, I'm a very shallow breather and that is what caused a lot of my problems (unlike the OP).

If your doctor or his staff doesn't seem to be able to help you, another option is talking to the local school who teaches the nurses in the sleep center if you don't have a free clinic like I do. The nurse told me she got a LOT of first-hand experience using the equipment during her training (they had to use it with a class partner many, many nights) and told me the people who taught her said they had seen it all. Best of all it will help you gauge what your doctor knows about using the machines and it's free to pick the teacher's mind to boot! You can discuss anything you have been able to cultivate from the teacher with the doctor and see if it's ok to try it in your situation. Most likely he'll roll his eyes at you, but at least you'll know how committed he is to understanding the PAP machines. My doctor is GREAT with diagnosis and writing scripts, but if you ask him a specific question about using any specific machine he tells you to go talk to the staff person who was trained just for that.

ems wrote:

Todzo wrote:

theoregonlife wrote:

BlackSpinner wrote:

theoregonlife wrote: Well good for you eh do want a award for being polite? listen here i don't know who you think u are nor do i bloody care, but don't you dare run your damn mouth to me about crap you know absolutely nothing about. THE DOCTOR ordered me off of the CPAP, I did not just walk away from it. I tried every bloody thing in the world to make that machine work, and the only thing i got was a trip to e blanking r and more problems then i care to mention.. i am not in denial about a god da** thing lady, so take your bloviated B* and tell it to someone who cares..

A nice therapist and anger management course would do you a world of good.

you know lady why don't you tell your self that, you and a lot of others have done nothing but run there mouths and down play my pain as false. Until you have walked a mile in my shoes and dealt with what i have you can do your self a favor and zip it...

Hi again theoregonlife!

Some times I kind of wonder if we might be looking at a new kind of troll?

If so, may they be like chaff before the wind indeed, with celerity.

Have a great weekend!

Todzo

Todzo... as someone who usually agrees with your posts, please tell me what you mean by, "a new kind of troll"? Thanks.

Hi ems!

From Wikipedia, the free encyclopedia: Troll (Internet)

"In Internet slang, a troll is someone who posts inflammatory, extraneous, or off-topic messages in an online community, such as a forum, chat room, or blog, with the primary intent of provoking readers into an emotional response or of otherwise disrupting normal on-topic discussion."

The subject here seemed to move from helping theoregonlife to talking about supposed character flaws in the “OP”. Not at all useful to theoregonlife or anyone else really, and very hard on theoregonlife without cause.

Have a great weekend!

Todzo