CPAP machine is making me sick and causing me lung problems

[49er]

Hi Zoo Crew,

Actually, it depends on the dental device used as noted by the sleep medicine dentist who posts on the other apnea support board. If the Tap 3 is used, the success rate is higher in getting the AHI below 5, particularly with mild to moderate apnea. For severe cases, it isn't as great.

http://www.apneasupport.org/topic29162.html

""And many people who have had the surgery or used a dental device get worse later and still need to do cpap, assuming they get retested. Some assume they are cured, and don't realize they are still suffering more long term damage. ""

I don't think anyone who has used a dental device has claimed they were cured. Regarding people getting worse on a dental device, I am wondering if perhaps that was due to using one that didn't have a great track record as far as preventing apneas.

Does using the tap3 make a difference as Dr. Luisi points out on the other board?

Yeah, cpap works great if you can tolerate it. But it isn't worth a darn if you can't. And yes, there are people who try like heck to to make it work and don't succeed. Dr Park stresses that constantly.

To the OP - Every medical treatment has side effects even if it seems benign. Personally, I never doubted that you could develop pneumonia from the treatment even though I am guessing it isn't common.

I am just glad that your doctors validated your experience as usually, they are quick to blow off side effects.

49er

[zoocrewphoto]

I don't think anyone who has used a dental device has claimed they were cured. Regarding people getting worse on a dental device, I am wondering if perhaps that was due to using one that didn't have a great track record as far as preventing apneas.

I think there are a lot of people who assume that they have been cured (or want to believe it), so even if the doctor hasn't said they were cured, they think it is good enough. And then there are commercials selling various dental devices that claim they will cure snoring. And many people believe that if the snore is gone, the sleep apnea is gone.

A coworker told me a couple days ago that her husband got the surgery for sleep apnea. She sounded really positive about it, so I asked (in a positive way) how well it worked for him. She said it worked great for a few years. It sounds like the sleep apnea is back, and the surgery just postponed it for a few years. And it is now going untreated since he doesn't want to use an cpap machine. I would not want to go through surgery just to have the problem return in a few years.

[kteague]

I do hope you are at some point in a position to test your theories as well as some of the theories offered here. I would expect after you've not used your CPAP for a while, whether it's an allergic reaction, humidity problem, pressure on sinuses or whatever reason, your symptoms should clear up once recovered from the exposure. At that point you'll being going off of the Flonase, right? Working with your doctor, it could be revealing if you can get totally off the med, wait a while, then resume the med and see if your symptoms return. After clearly demonstrating the med is not a problem, you could try cpap again and see if symptoms return. If they do, stop immediately. Don't want to invite another bad spell. Right now you have two potential contributors, and until each can be isolated, the picture remains unclear.

I was in a situation where I was absolutely certain my medication was causing some symptoms, went off them, but to prove it to myself and my doctors, agreed to go back on the med and see if the side effects returned. They did. It was an ordeal, but I needed to know. My future treatment course was in question. (Plus I wanted to prove I wasn't crazy.) Maybe you can just go ahead with the dental appliance and have no need to revisit any of this. Just a thought.

[Madalot]

As for you your comment makes me wonder if you got your phd from the Internet.. Oh thats right I bet you don't have one and you are just bloviating based on what you think you know.. The persantat drainage that a cpap does cause in some users such as my self, caused me pneumonia and landed me in the hospital and you the know the dr aka the one with a phd said it was caused from the drainage which was started by guess what the CPAP. But go ahead and keep on bloviating in the meantime ill listen to the pulmolnologist and not u.

I am so sorry that you have become so ill. I have no clue if the cpap caused it, but I think it should be on the list of things to look at. Perhaps it IS a situation where your body is different and cpap affects you in a way that makes it a bad choice for you.

However, sometimes even doctors are uneducated and/or stupid and incompetent. Just because a person has MD by their name doesn't mean they are necessarily *right* all the time. I had a doctor tell me once that ANY patient that takes ANY medication for pain is a drug addict. This "doctor" is still practicing in the city where I live and I weep for those that go him, unaware of how he feels about treating pain. I also had a therapist tell me once that if I got down on my hands and knees and prayed to God, he would take away my Muscular Dystrophy and my not having strong enough faith was the reason for my illness.

Wack-a-doodle!!!

Not saying YOUR doctors are incompetent, but in a situation like yours, you need to consider all possibilities.

But I can't help but wonder why, if you are absolutely certain that cpap is the cause of your illness and will never be something you can do, why are you back posting on the CPAPtalk forum? Why didn't you simply walk away from the forum? It's akin to going to an AA meeting trying to sell wine.

The purpose of this forum is to help people be successful with cpap treatment, which IS the therapy of choice. I'm sorry that you may be one of the few people that simply cannot be successful, but it's hard enough to get people to keep working at it without somebody trying to push how cpap made them sick. Even if it IS true, it's so unusual that it should NOT be considered typical.

[Java Time]

Just a quick thought here on the nasal spray and your drainage. My son is not on CPAP, but he does use Flonase (generic) at night for nasal congestion when he lays down. Right after he uses the spray it causes drainage, so he has to wait a while after using it before laying down or the drainage is awful. Just wondering if you use the spray and then immediately go to bed. If you do, you could try waiting a while to see if that helps. Also, there are different kinds of steroid nasal sprays. My son tolerates some better than others, and some are more helpful than others.

To original poster, I also had trouble with flonase at night as mentioned by WearyOne. I actually switched to taking mine in the morning which worked better for me. Just a thought.

[Todzo]

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

Hi again theoregonlife!

After being brought to the point of being homeless by this disease (OAS), retraining as a cook and starting to build a new carrier (before all this I had worked over 20 successful years as a broadcast technician) – but then – being assaulted and robbed – well - my nerves are frayed. Close to the anniversary of the assault and robbery especially so.

While I can normally tolerate CPAP - during the anniversary times I often woke up breathing very hard with my heart beating out of my chest. I now understand that this was PAP induced unstable breathing. My “air hunger” grew to crazy levels – I suppose you could think of it as PAP induced hyperventilation. I can see how this sort of thing could indeed cause your symptoms!

When I found this article: ( http://www.ncbi.nlm.nih.gov/pubmed/21206741 ) I knew it would help. So, having the skills to do it, I did insert a bit of “dead space” into my system moving the essential lossy mask vent point to just below that – and – much less unstable breathing was the result. My doctor could see no real problem with me doing this.

Since then I have noted that some doctors are doing this for patients with problems like yours.

Please discuss this with your doctor.

May we find continually better health!

Todzo

[49er]

As for you your comment makes me wonder if you got your phd from the Internet.. Oh thats right I bet you don't have one and you are just bloviating based on what you think you know.. The persantat drainage that a cpap does cause in some users such as my self, caused me pneumonia and landed me in the hospital and you the know the dr aka the one with a phd said it was caused from the drainage which was started by guess what the CPAP. But go ahead and keep on bloviating in the meantime ill listen to the pulmolnologist and not u.

I am so sorry that you have become so ill. I have no clue if the cpap caused it, but I think it should be on the list of things to look at. Perhaps it IS a situation where your body is different and cpap affects you in a way that makes it a bad choice for you.

However, sometimes even doctors are uneducated and/or stupid and incompetent. Just because a person has MD by their name doesn't mean they are necessarily *right* all the time. I had a doctor tell me once that ANY patient that takes ANY medication for pain is a drug addict. This "doctor" is still practicing in the city where I live and I weep for those that go him, unaware of how he feels about treating pain. I also had a therapist tell me once that if I got down on my hands and knees and prayed to God, he would take away my Muscular Dystrophy and my not having strong enough faith was the reason for my illness.

Wack-a-doodle!!!

Not saying YOUR doctors are incompetent, but in a situation like yours, you need to consider all possibilities.

But I can't help but wonder why, if you are absolutely certain that cpap is the cause of your illness and will never be something you can do, why are you back posting on the CPAPtalk forum? Why didn't you simply walk away from the forum? It's akin to going to an AA meeting trying to sell wine.

The purpose of this forum is to help people be successful with cpap treatment, which IS the therapy of choice. I'm sorry that you may be one of the few people that simply cannot be successful, but it's hard enough to get people to keep working at it without somebody trying to push how cpap made them sick. Even if it IS true, it's so unusual that it should NOT be considered typical.

Hi Madalot,

Oh, I agree with all the comments you have made about doctors.

But it is pretty unusual for them to acknowledge side effects and the fact that two of them agree that the cpap caused the pneumonia leads me to be believe that the op encountered a rare side effect of the machine. Now if they felt a hangnail was caused by the cpap, that would be another story.

Hmm, I am not sure why feel this person shouldn't post here about how cpap made her sick. Most people understand this is a rare side effect and aren't going to stop their treatment based on this.

49er

[Madalot]

Hi Madalot,

Oh, I agree with all the comments you have made about doctors.

But it is pretty unusual for them to acknowledge side effects and the fact that two of them agree that the cpap caused the pneumonia leads me to be believe that the op encountered a rare side effect of the machine. Now if they felt a hangnail was caused by the cpap, that would be another story.

Hmm, I am not sure why feel this person shouldn't post here about how cpap made her sick. Most people understand this is a rare side effect and aren't going to stop their treatment based on this.

Hey 49er!

You've brought up a valid point and I appreciate your politeness in disagreeing with something I said. Thank you.

I said what I said, the way I said it, because of the antagonistic way the OP is replying. Perhaps OP feels attacked, but I still find her responses a bit overboard. Since this kind of thing has happened before, it seemed likely that the OP was trying to convince people on this forum that cpaps are BAD and will cause the rest of us the same problems she has.

Part of me was more questioning WHY she would want to keep posting here if she felt people weren't taking her situation very seriously. The nastiness seemed, to me anyway, disproportionate to what people said.

Maybe we've had too many trolls in recent months and I'm oversensitive!

[49er]

You've brought up a valid point and I appreciate your politeness in disagreeing with something I said. Thank you.

I said what I said, the way I said it, because of the antagonistic way the OP is replying. Perhaps OP feels attacked, but I still find her responses a bit overboard. Since this kind of thing has happened before, it seemed likely that the OP was trying to convince people on this forum that cpaps are BAD and will cause the rest of us the same problems she has.

Part of me was more questioning WHY she would want to keep posting here if she felt people weren't taking her situation very seriously. The nastiness seemed, to me anyway, disproportionate to what people said.

Maybe we've had too many trolls in recent months and I'm oversensitive!

Hi Madalot,

As someone who pleads guilty to being highly sensitive, I would never accuse someone of being oversensitive. But all jokes aside, I understand your concerns, especially in light of previous trolls.

I think I am looking at it from the perspective of having taking drugs and not beeing believed about the side effects because they were "rare". I know if someone tried to tell me that what I experienced wasn't true, I would not be happy and might come across as overreacting.

49er

[Julie]

And I'm still wondering why the OP and his humidifier setting of 4 have yet to come back with results of bringing that way down (or putting it in passover mode) while turning up the humidity in the rest of the house... such a simple thing to try, after which more complicated stuff like Flonase or something else could be looked at...

[BlackSpinner]

And I'm still wondering why the OP and his humidifier setting of 4 have yet to come back with results of bringing that way down (or putting it in passover mode) while turning up the humidity in the rest of the house... such a simple thing to try, after which more complicated stuff like Flonase or something else could be looked at...

Because he doesn't want to. It is his excuse to dive into "De Nile".

[jen4700]

While I agree with Madalot 100%, I appreciate 49er's open-minded and caring response to the OP.

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.

[-SWS]

let me spell this out, cpap causes constant drainage in sinus which goes into the lungs which in turn causes infection and possibly pneumonia source my dr.. so yes it is causing me problems and is causing me quite a lot of discomfort and problems and for some reason my lungs are not tolerating it (not everyone can use a cpap, it may be the gold standard of care but keep in mind its not for everyone!).. Dunno what do next, and as for my upper res infection i am already on antibiotics..

Sorry to hear that. 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?

[BlackSpinner]

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.

[Todzo]

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.

Hi BlackSpinner,

The runny nose is likely caused by PAP induced ventilatory instability - which - if left unchecked - could well lead to a stroke.

When we are breathing so much we irritate our nose we are also likely to wash out our CO2. When that happens our circulatory system closes down and oxygen transport is frustrated - the brain responds by going into a "Rob Peter to pay Paul" circulation scheme in an attempt to save what it can.

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.

Take care,

Todzo