CPAP machine is making me sick and causing me lung problems

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Re: CPAP machine is making me sick and causing me lung problems

Post by 49er » Sat Sep 01, 2012 3:02 am

I think that what is helpful to a person in denial is not attack of thier character, but rather to share one's own actual experiance
.

This is almost the statement of the year:) I do disagree with assuming someone is in denial as that is an awfully loaded label when there could be valid reasons for that perception.

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Re: CPAP machine is making me sick and causing me lung problems

Post by zoocrewphoto » Sat Sep 01, 2012 3:17 am

I think when people come here and are in denial, they are looking for someone to say - you're right. cpap is terrible. you're not crazy. it's really hard. don't use it because it doesn't really do any good. And then I think they are surprised when people don't coddle them with platitudes. I'm sure there are other OSA boards that are more focused on cpap alternatives. Would it be better to just point them to those boards instead of try to change their mind or scare the shit out of them? Or am I living in Internet Forum Fantasy Land??? IFFL = If you Fail Feel Free to Leave. Ok, past my bedtime. I'm rambling now.

Considering that my brother is in denial, and won't even tell me what brand of machine is hiding in his closet, I would rather scare the shit out of him. Right now, I am trying to scare his wife. My family does have a history or heart disease. My grandfather on my dad's side died almost 5 years before I was born. I think he was 44 or 45. My uncle was 2 years older than my dad, and he died 5 or 6 years ago. He was out on a weekly hike, didn't feel good, and had a heart attack before the medics arrived. He was lean and seemingly healthy. My dad got 2 stents in an artery a couple years ago when he went in for pain, and they found a 94% blockage.

I put off my treatment for years because I thought it was just lack of sleep. My own form of denial was simply not to look into it as I look into just about anything else that comes up. If I had actually spent 20 minutes doing a google search, I would have known about the heart problems, high blood pressure, and stroke. I knew I didn't want to use a cpap machine, so I never bothered to look at sleep apnea and see what it was about.

Now, that I have fessed up, did the sleep study, and started treatment (4 months now), I feel much better. I'm not even consistent yet as I have a few great nights, a few really bad nights, and mostly good and okay nights. But I can already feel t he improvements in my health. And in a way, it is addictive. It feels so good to have an awesome night, that I want one again, and I will keep trying because I want it.

I am trying to help friends get started or get back on it. And I really want my brother to give it an honest try. I don't want to lose him at an early age. He is already 47, older than my grandfather was when he died.

At my birthday dinner a few weeks ago, I did my best to promote cpap treatment in a positive way. I told him how much better I feel, how my blood pressure is better, and how cool it is see the data and have a nice mask. My mom told him how I got her going again, and she now has a better machine, better mask, and feels better too. My sister jumped in and told him much nicer it is to share a hotel room with me as my machine is whisper quiet, and I don't snore anymore.

The positives did not help one slight bit. He doesn't want to be convinced. He won't do his own research. So, cold hard facts are the next techniques. I suspect the only way to make him serious about treatment will be a heart attack. I just hope it isn't his last day on earth. For some people, the first obvious symptom of heart disease is the heart attack that kills them.

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Re: CPAP machine is making me sick and causing me lung problems

Post by 49er » Sat Sep 01, 2012 3:36 am

Hi Jen,

Not to sound like I am bragging but I have consistently referred people to this board, http://www.apneasupport.org/, who were interested in dental appliances. There is a sleep medicine dentist, Dr. Luisi, who posts there, who I feel has been pretty honest about their effectiveness. He also consistently stresses that the tap 3 is the most effective one for sleep apnea.

This site, http://www.talkaboutsleep.com also has a dental sleep medicine section. The last post was in January but I still found old posts helpful. Interestingly, some of the same discussion appear there that come up on this board regarding cpap vs. other treatments.

Unfortunately, in my opinion, because the research is quite limited, there aren't any boards for alternative sleep apnea methods to cpap. So essentially, if a person is struggling big time and feels they have tried everything to make cpap work to no avail, they are on their own.

What may come across as denial may be simply a person being overwhelmed with all the issues and having difficulty sorting things out, particularly if she is sick with pneumonia as the op was. This makes sense since apnea can greatly impair cognitive function. So why not have compassion instead of assuming the worst about someone?

Of course, the exception would be folks who post who may be potential crooks.

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Re: CPAP machine is making me sick and causing me lung problems

Post by 49er » Sat Sep 01, 2012 3:47 am

Zoo Crew,

I understand what you are saying and I couldn't begin to imagine what you are experiencing.

Sorry if you mentioned this but did your brother mention why he had quit using the cpap machine?

I can only tell you from personal experience that telling me I would drop dead of a heart attack if I gave up on my cpap treatment would not work. I don't relate to what to me represents an abstract possibility.

Here is what did motivate me to keep at it while I am waiting for my unit to be returned. Having brain fog after my caffeine wore off from the morning. Seeing an immediate issue lets me know I have to keep at this come heck or high water or until I find an alternative treatment which doesn't exist for me right now.

Are there any issues like that that might motivate your brother? Would simply suggesting that he explore it out of curiosity help?

If you have tried all of this, of course, disregard what I said.

Best of luck.

49er




Considering that my brother is in denial, and won't even tell me what brand of machine is hiding in his closet, I would rather scare the shit out of him. Right now, I am trying to scare his wife. My family does have a history or heart disease. My grandfather on my dad's side died almost 5 years before I was born. I think he was 44 or 45. My uncle was 2 years older than my dad, and he died 5 or 6 years ago. He was out on a weekly hike, didn't feel good, and had a heart attack before the medics arrived. He was lean and seemingly healthy. My dad got 2 stents in an artery a couple years ago when he went in for pain, and they found a 94% blockage.

I put off my treatment for years because I thought it was just lack of sleep. My own form of denial was simply not to look into it as I look into just about anything else that comes up. If I had actually spent 20 minutes doing a google search, I would have known about the heart problems, high blood pressure, and stroke. I knew I didn't want to use a cpap machine, so I never bothered to look at sleep apnea and see what it was about.

Now, that I have fessed up, did the sleep study, and started treatment (4 months now), I feel much better. I'm not even consistent yet as I have a few great nights, a few really bad nights, and mostly good and okay nights. But I can already feel t he improvements in my health. And in a way, it is addictive. It feels so good to have an awesome night, that I want one again, and I will keep trying because I want it.

I am trying to help friends get started or get back on it. And I really want my brother to give it an honest try. I don't want to lose him at an early age. He is already 47, older than my grandfather was when he died.

At my birthday dinner a few weeks ago, I did my best to promote cpap treatment in a positive way. I told him how much better I feel, how my blood pressure is better, and how cool it is see the data and have a nice mask. My mom told him how I got her going again, and she now has a better machine, better mask, and feels better too. My sister jumped in and told him much nicer it is to share a hotel room with me as my machine is whisper quiet, and I don't snore anymore.

The positives did not help one slight bit. He doesn't want to be convinced. He won't do his own research. So, cold hard facts are the next techniques. I suspect the only way to make him serious about treatment will be a heart attack. I just hope it isn't his last day on earth. For some people, the first obvious symptom of heart disease is the heart attack that kills them.[/quote]

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Re: CPAP machine is making me sick and causing me lung problems

Post by zoocrewphoto » Sat Sep 01, 2012 4:12 am

Zoo Crew,

I understand what you are saying and I couldn't begin to imagine what you are experiencing.

Sorry if you mentioned this but did your brother mention why he had quit using the cpap machine?

I can only tell you from personal experience that telling me I would drop dead of a heart attack if I gave up on my cpap treatment would not work. I don't relate to what to me represents an abstract possibility.

Here is what did motivate me to keep at it while I am waiting for my unit to be returned. Having brain fog after my caffeine wore off from the morning. Seeing an immediate issue lets me know I have to keep at this come heck or high water or until I find an alternative treatment which doesn't exist for me right now.

Are there any issues like that that might motivate your brother? Would simply suggesting that he explore it out of curiosity help?

If you have tried all of this, of course, disregard what I said.

Best of luck.
My brother vaugely said that he couldn't wear a mask because he has bad dreams and wakes up acting them out. I believe the sleep apnea is causing those dreams, and they would stop once he gets some real therapy. His girlfriend told me that he is stubborn, so she sees no reason to try convincing him. She did mention once that she told him it didn't bother her. So, he may be thinking he doesn't look cool in bed.

I believe he figures he is functional, so there is no real problem. That is how I felt. Sure, I was tired, but I figured that was from not enough hours in bed. I've had lack of sleep since I was a teenager, so no big deal, right?

I honestly think the only thing that will reach him is a medical scare. Most of the problems associated with sleep apnea get worse over time, so without a realy noticeable change (such as a great sleep study with energy after the cpap machine), there is no comparison to show just had bad "Bad" really is.

The day after my sleep study, I felt really good. The next night, I had a bad dream about having to wait 6 months for my machine. My brain suddenly knew it wanted a machine, and it wanted it NOW. The next day, I felt like crap. And I realized that I felt normal. I just didn't know that my normal was crap. Now I know.

If somebody has not tried cpap treatment, or didn't get immediate improvement (as many do not); then they don't have as much incentive to use the treatment. They may know rationally that treatment is better than no treatment. But they don't know it physically.

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Re: CPAP machine is making me sick and causing me lung problems

Post by 49er » Sat Sep 01, 2012 4:20 am

Thanks, now I understand.

Yeah, in my limited success, if I hadn't had some rare great moments, there is no way I would be motivated to continue.

Good luck in getting him to come around.

49er

zoocrewphoto wrote:
Zoo Crew,

I understand what you are saying and I couldn't begin to imagine what you are experiencing.

Sorry if you mentioned this but did your brother mention why he had quit using the cpap machine?

I can only tell you from personal experience that telling me I would drop dead of a heart attack if I gave up on my cpap treatment would not work. I don't relate to what to me represents an abstract possibility.

Here is what did motivate me to keep at it while I am waiting for my unit to be returned. Having brain fog after my caffeine wore off from the morning. Seeing an immediate issue lets me know I have to keep at this come heck or high water or until I find an alternative treatment which doesn't exist for me right now.

Are there any issues like that that might motivate your brother? Would simply suggesting that he explore it out of curiosity help?

If you have tried all of this, of course, disregard what I said.

Best of luck.
My brother vaugely said that he couldn't wear a mask because he has bad dreams and wakes up acting them out. I believe the sleep apnea is causing those dreams, and they would stop once he gets some real therapy. His girlfriend told me that he is stubborn, so she sees no reason to try convincing him. She did mention once that she told him it didn't bother her. So, he may be thinking he doesn't look cool in bed.

I believe he figures he is functional, so there is no real problem. That is how I felt. Sure, I was tired, but I figured that was from not enough hours in bed. I've had lack of sleep since I was a teenager, so no big deal, right?

I honestly think the only thing that will reach him is a medical scare. Most of the problems associated with sleep apnea get worse over time, so without a realy noticeable change (such as a great sleep study with energy after the cpap machine), there is no comparison to show just had bad "Bad" really is.

The day after my sleep study, I felt really good. The next night, I had a bad dream about having to wait 6 months for my machine. My brain suddenly knew it wanted a machine, and it wanted it NOW. The next day, I felt like crap. And I realized that I felt normal. I just didn't know that my normal was crap. Now I know.

If somebody has not tried cpap treatment, or didn't get immediate improvement (as many do not); then they don't have as much incentive to use the treatment. They may know rationally that treatment is better than no treatment. But they don't know it physically.

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Re: CPAP machine is making me sick and causing me lung problems

Post by -SWS » Sat Sep 01, 2012 8:33 am

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.
Why are so many people in this thread expending effort to reduce and dismiss the OP's plausible problem that the doctor probably diagnosed correctly? Rhinitis is a well-documented side effect of CPAP. And the OP's lower-airway infections are a well-documented complication of the OP's rhinitis. Here's the OP's plausible sequelae: 1) no rhinitis and thus no rhinitis complications, 2) CPAP is initiated, 3) prolific rhinitis as a CPAP side effect, 4) common rhinitis lower-airway complications.

The OP's lower-airway complications of rhinitis are significantly more severe than a "runny nose". So I don't understand that either/or choice, which ignores/dismisses the OP's worst part of his health sequelae. If this were an either/or choice, then for the OP it would be CPAP versus serious lower airway infection---with the latter being a much more severe health problem than a runny nose. But I'm not so sure it's an either/or choice. My hope is that more posters would offer possible rhinitis solutions rather than debate with the OP who has come to this board seeking counsel for a serious health issue.

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Re: CPAP machine is making me sick and causing me lung problems

Post by pats » Sat Sep 01, 2012 8:54 am

-SWS wrote:The OP's lower-airway complications of rhinitis are significantly more severe than a "runny nose". So I don't understand that either/or choice, which ignores/dismisses the OP's worst part of his health sequelae. If this were an either/or choice, then for the OP it would be CPAP versus serious lower airway infection---with the latter being a much more severe health problem than a runny nose. But I'm not so sure it's an either/or choice. My hope is that more posters would offer possible rhinitis solutions rather than debate with the OP who has come to this board seeking counsel for a serious health issue.
A couple of the first few posts suggested adjusting the humidity. That seems like a reasonable suggestion on the face of it.

Has anyone suggested Provent? CPAP would be the better solution if the OP could use it, but if not Provent may well be better than nothing. I would try humidity adjustment first, but consider trying Provent as a fall-back.

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Re: CPAP machine is making me sick and causing me lung problems

Post by -SWS » Sat Sep 01, 2012 10:27 am

Woot... a brainstorming session toward solving both the OP's rhinitis and his lower-airway complications of rhinitis!

If I were the OP I'd experiment with more humidity and either less or no humidity. One of the links in the above Google search suggested that CPAP induced rhinitis might be an over-reaction to CPAP first drying the mucous membranes, before triggering rhinitis as an over-response to the dryness. In that case more humidity might work---but I'd also try slathering a generous layer of a saline gel on those nasal mebranes that seem to over-react with prolific rhinitis:
http://www.amazon.com/s/ref=nb_sb_noss_ ... saline+gel

In this case I would recommend NOT using petroleum based gel (eg. Vaseline). The idea is to experiment with a LOT of protective gel on the nasal membranes,hoping to stave off dryness----but also hoping to stave off stimulation of the nasal membranes with a protective, thick layer of gel. Slather Vaseline or petroleum gel in copious quantities, and you risk lipid pneumonia, since the lungs cannot resolve pertroleum gel. Saline gel is perfectly safe if you're going to slather copious quantities on.

Is there an allergic component to CPAP-induced rhinitis? Or is CPAP-induced rhinitis non-allergic, based on sensory-stimuli and/or dryness of the nasal membranes? I honestly don't know. But I'd take the earlier advice offered in this thread about trying nasal irrigation. I'd experimentally do that before slathering on saline nasal gel----hoping to first flush possible allergens from the nasal passages. I'd also be sure to try a hypoallergenic or HEPA air filter on the CPAP machine's intake. Lastly a note to the OP: your CPAP-induced rhinitis might even diminish as you gradually adapt to CPAP.

So my fellow brainstormers, what would YOU do to counter CPAP-induced rhinitis? What would you try to cope with lower-airway infections that occured as a result of that prolific rhinitis?

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Re: CPAP machine is making me sick and causing me lung problems

Post by Janknitz » Sat Sep 01, 2012 11:28 am

I have not weighed in on this thread before but will do so now. We have the perfect storm for CPAP failure here, and all the tea in China will not redeem CPAP for this unfortunate op. here's how I see it:

1)OP is a "yes butter". She was looking for excuses in the first place because she's really now willing to adjust to CPAP. All the kind suggestions to help offered have been met with "yes, but". She doesn't want to make this work.

2) She got rotten support from her DME and sleep professionals, dooming her from the start. Sometimes we can help, when this is the primary reason for CPAP failure. But in this case it is not.

3). Her doctor is incompetent. People do not get repeated bouts of bacterial or viral bronchitis from rhinitis. I'll bet a doughnut she doesn't have any infectious process going on. More likely she has asthmatic bronchitis, an autoimmune response to a trigger which MIGHT be related to the CPAP (or not). Throwing antibiotics at her is not solving the underlying issue. Tamping down the autoimmune response with an appropriate asthma treatment plan, including systematically determining what, if any, aspect of the CPAP in triggering her responses would be good care, but she's not getting that, and we can't make a dent in that issue unless she gets competent medical care. Meanwhile, her poorly treated respiratory issues make a handy, dandy excuse for someone who doesn't want CPAP in the first place.

Bottom line is that the op's situation is not going to improve with our advice because she won't take it and it's not enough until her medical situation is addressed, and maligning her is not effective either. We can weigh in all we want, but it will not fix thing for the unfortunate OP.

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Re: CPAP machine is making me sick and causing me lung problems

Post by -SWS » Sat Sep 01, 2012 12:46 pm

Janknitz wrote: Her doctor is incompetent. People do not get repeated bouts of bacterial or viral bronchitis from rhinitis.
I honestly don't think there's enough information in this thread to make that assessment about the doctor----especially if it's based on that second statement, which I believe is in error...

Sinusitis rather commonly spreads to bronchial infection or even bacterial pneumonia. In that transmission scenario I believe microbial pathogens originate in the upper airway, and then transmit to the lower airway thanks to mucous flow. The pathogens simply ride that prolific mucous flow into the lower airway where they infect the lower-airway membranes. So if the OP has some infection going on in the upper airway, it's entirely plausible that CPAP-induced rhinitis will cause the infection to spread to the lower airway. That's only one scenario by which rhinitus can cause lower airway infection.

If the rhinitis flow into the lungs is copious enough during sleep, then aspiration pneumonia is yet another scenario.
http://www.lahey.org/Health_and__Wellne ... kiid=99635

People in this thread sure are trigger-happy declaring the OP's doctor incompetent... I suspect the doctor is right.

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Re: CPAP machine is making me sick and causing me lung problems

Post by greatunclebill » Sat Sep 01, 2012 1:00 pm

theoregonlife wrote: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
go to your doctor with this. if you don't trust your doctor, find a new doctor real soon. as much as people here want to diagnose and advise you, they are strangers on a forum and have not examined you, nor do they know your medical history.

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Re: CPAP machine is making me sick and causing me lung problems

Post by avi123 » Sat Sep 01, 2012 1:08 pm

SWS = Slow-Wave Sleep = deep sleep = stage 3 and 4 of nonREM sleep, so what do you suggest doing? I read only your and Jen posts. If it is an allergic rhinitis then allergic ENTs know what to do. If it is vasomotor rhinitis then we know how to go about it. If it is lungs infection then we have antibiotics for it. Isn't it sufficient?

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Re: CPAP machine is making me sick and causing me lung problems

Post by robysue » Sat Sep 01, 2012 1:32 pm

-SWS wrote: If I were the OP I'd experiment with more humidity and either less or no humidity. One of the links in the above Google search suggested that CPAP induced rhinitis might be an over-reaction to CPAP first drying the mucous membranes, before triggering rhinitis as an over-response to the dryness. In that case more humidity might work---but I'd also try slathering a generous layer of a saline gel on those nasal mebranes that seem to over-react with prolific rhinitis:
http://www.amazon.com/s/ref=nb_sb_noss_ ... saline+gel

In this case I would recommend NOT using petroleum based gel (eg. Vaseline). The idea is to experiment with a LOT of protective gel on the nasal membranes,hoping to stave off dryness----but also hoping to stave off stimulation of the nasal membranes with a protective, thick layer of gel. Slather Vaseline or petroleum gel in copious quantities, and you risk lipid pneumonia, since the lungs cannot resolve pertroleum gel. Saline gel is perfectly safe if you're going to slather copious quantities on.
Would Lasinoh lanolin have the same problems as vaseline as far as the lungs are concerned?
Lastly a note to the OP: your CPAP-induced rhinitis might even diminish as you gradually adapt to CPAP.
There may be something to this last idea even though "It takes time" would not be welcomed as a suggestion by the OP. For the first year of PAPing, when I was having myriad adjustment problems, one collection of those problems was a serious uptick in my nasal congestion accompanied by even more discomfort when using the machine with a stuffy nose. And my first spring & summer (2011) on the machine I found that I had to be far more intolerant of my nasal allergy symptoms than I'd ever been in my life if I wanted to be able to sleep semi-comfortably with the machine. The solution for me was the whole nine yards: Flonase (for the first time ever), daily use of Zyrtec instead of on an "as needed basis, use of a neti pot about an hour before bed, humidifier set top 5 (max), Biotin mouthwas every night, and lanolin (but not copious amounts) smeared just inside my nostrils. Doing all that every single day kept the nasal congestion at "uncomfortable but tolerable" levels when I had my mask on at night, with the added bonus of less daytime congestion than I ever had during allergy season.

Fast forward a year: I'm pretty lackadasical about the nasal hygiene these days: When the allergies are acting up, I use the zyrtec. My prescription for the Flonase has expired and I'm undecided abouit whether to ask for a new one. The neti pot gets used sometimes---somestimes for allergies and sometimes if I've had more snoring than usual for two or three days since snoring and nasal congestion seem to be correlated.
And I'm having far fewer problems overall with the PAP and far fewer problems with the PAP making me feel congested during the night this year than I did last year. And I think the real reason is just plain old time: My highly sensitive body has finally learned how to deal with all that air (and all the other stimuli) comming from my machine.

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Re: CPAP machine is making me sick and causing me lung problems

Post by -SWS » Sat Sep 01, 2012 1:50 pm

Well, the OP doesn't think the current antiobiotic is clearing up the airway infection. After running the antibiotic's full treatment cycle, a different antibiotic or Rx might be in order. The present antibiotic might not be effective for this infection type.

Hmmm... I suppose if I were the OP, I might try a strategy something like this:

1) aggressively treat the current airway infection
2) try hard to make that gold-standard CPAP treatment work BEFORE exploring alternate apnea treatments (the rhinitis and complications may actually go away)
3) aggressively manage sinus & nasal passages thereafter, to avoid dryness and upper-airway infection that might spread to the lower airway (nightly nasal rinses)
4) if CPAP continues to induce rhinitis as a side-effect, then experiment with a thick, protective saline gel coating on the nasal membranes

I'd also consider getting a second opinion from an ENT who also prescribes CPAP, if one can be found...

P.S. Robysue, I don't think Lasinoh Lanolin presents the same lipid pneumonia risk as petroleum jelly---especially if applied sparingly. I also think most people can apply petroleum jelly very sparingly. But if applied liberally, then petroleum jelly risks ending up in the lungs where it cannot be safely resolved---hence a lipid pneumonia risk.