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CPAP Sinus Infection?
This is from a correspondence I've been having with Susan McCord, who gave me permission to share it with all you on the forum. Italicized emphasis is my own... Will be interested to hear what you guys think she should do:
"I've been sicker than a dog with this CPAP/sinus stuff since the day after Christmas. Nobody, including my sleep doc will really discuss it with me or else they just dismiss it. This has been going on, off and on, since shortly after I started CPAP in July.
Today I was at my cardiologist for a checkup, and was telling him about all this ongoing. Usually it goes away spontaneously in 2-3 days--this time it's hung on for 10 days so far. Can't stand it.
Anyway, cardiologist, who's also an internist prior, told me it's not uncommon at ALL for pts. on CPAP to have this and that I have an infection. I asked him why the MDs don't tell us about it--he and I have a VERY open relationship and he knows I can't stand having smoke blown up my ass--he told me it's because the sleep docs are so worried about compliance that they don't tell pts. about the possibility of sinus complications AND that it's not uncommon for them to avoid talking about it even if pts. bring it up. They tend to assign the sinus problems to something else.
I was mildly horrified and, frankly, I think he is too. He told me to talk to my PCP and get started on an antibiotic and whatever else PCP recs. He also said people usually stay off CPAP for a week or so till the infection clears. THAT scares me to death. I don't think I'm gonna do it. Internet says to d/c too, but I don't think I can......what do you think I should do???"
"I've been sicker than a dog with this CPAP/sinus stuff since the day after Christmas. Nobody, including my sleep doc will really discuss it with me or else they just dismiss it. This has been going on, off and on, since shortly after I started CPAP in July.
Today I was at my cardiologist for a checkup, and was telling him about all this ongoing. Usually it goes away spontaneously in 2-3 days--this time it's hung on for 10 days so far. Can't stand it.
Anyway, cardiologist, who's also an internist prior, told me it's not uncommon at ALL for pts. on CPAP to have this and that I have an infection. I asked him why the MDs don't tell us about it--he and I have a VERY open relationship and he knows I can't stand having smoke blown up my ass--he told me it's because the sleep docs are so worried about compliance that they don't tell pts. about the possibility of sinus complications AND that it's not uncommon for them to avoid talking about it even if pts. bring it up. They tend to assign the sinus problems to something else.
I was mildly horrified and, frankly, I think he is too. He told me to talk to my PCP and get started on an antibiotic and whatever else PCP recs. He also said people usually stay off CPAP for a week or so till the infection clears. THAT scares me to death. I don't think I'm gonna do it. Internet says to d/c too, but I don't think I can......what do you think I should do???"
Views: 24009
Replies to This Discussion
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Permalink Reply by Mike on
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I think this calls all of our attention to the importance of cleaning and replacing our CPAP supplies, and emptying our humidifier reservoirs of all water each morning, and replacing with distilled water ONLY each evening. The idea is to keep as much bacteria out of your CPAP system as possible.
Personally, if I were you, I'd throw away my hose, CPAP cushion, filters, and replace them with new ones. Then I'd clean my humidifier tank, and I'd continue withe the CPAP even while using the antibiotics. That said, if i couldn't breathe out of my nose, i wouldn't bother. I have a nasal mask, so there would be no point.
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Permalink Reply by susan mccord on
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Mike, even as pissed as I am, (and you KNOW I am!) I don't think I would assign "cover-up" to this deal. My gut sense of it is that the MDs who do it are so focused on patients getting treatment, specifically CPAP in this case, and so many people are resistant anyway, that they worry that informing about possible side effects will scare people away from treatment.
I've seen the EXACT same thing happen with oncologists who over and over don't give patients information re: risk vs benefit prior to the patient starting chemo or radiation treatment. Then when some of the inevitable side effects begin, patients get really upset and anxious, and sometimes VERY angry when they find out that it's not unusual. The oncologists tend to say things like "If I tell them what the possible/probably side effects of (whatever treatment it is), they'll develop those symptoms". AS IF!!!
I didn't like it when I was working with cancer patients--I don't like it now. But I honestly don't know if it smacks as much of "cover-up" as it does terribly limited thinking, particularly specialists, re: patients rights to make INFORMED decisions. It's almost as if the more dangerous the illness is, the more the docs just want to treat and not talk about it much.
Don't get me wrong!! I'm NOT defending the practice--good God, after what I've been going through, I wouldn't wish it on anybody. What chaps my ass is that if I'd known what it WAS, I could have been handling it from the get-go instead of having 5 months of misery that, I think, was unnecessary.
Like I told you, before you posted this, my concern (always on SG) is for new people coming in. I don't want anyone to make a decision out of fear, based on what's happening with me. Despite the fact that CPAP is the contributing factor here, and probably will continue to be a chronic issue for me, I'm not even CONSIDERING d/c-ing treatment. I know too much now about how dangerous apnea is. AND I also already have heart disease so I'm double-jeopardy. But even if I weren't a heart patient, I wouldn't stop CPAP. There are just too many reasons to stay compliant.
So here we are again, on SleepGuide, hashing things out and trying to figure out how it is that we can find ways to optimize our (difficult) courses of treatment. How the hell do we navigate the health care system? I was a practitioner for many years and even knowing all that I know about communicating, here I am in a mess because, for whatever reason, I didn't realize I was gonna have to fight my caregivers for information.
It's not news to me, people!!!!! I've seen it happen to a gazillion patients!!!
My youngest son came within an inch of dying from pneumonia 3 years ago because two different MDs didn't listen closely to what was happening to him. WE knew he was desperately ill--they thought he had "a virus". I sat in the hospital with him, all night, every night, and watched him dying right in front of my eyes.....turned out his immune system has been compromised by Type II Diabetes. We didn't know that was even an issue at the time. The pulmonologist who cared for him (from ER on) said he was too sick to move to a hospital better-equipped to care for him, but he saved him anyway. Sweet Jesus.......another totally different scenario than apnea, but same problem. Communication, or rather the lack thereof.
Just my opinion, but I don't think the problem is only relative to sleep specialists. I think it's (probably) rampant among many MDs, for who truly knows what reason. ( I can just hear Dan Lyons right now: "It's a $$ issue--they're just out to make as much $$ as possible!).....lol Maybe he's right. I don't know. But sleep docs are the ones we're concerned with here, so what ideas do any of you guys have?????
I read on the internet that we shouldn't stay on CPAP with an upper respiratory infection (see!, that's the kicker for me--I KNEW on a gut level that I was having side effects although nobody would say that, but it never occurred to me that I have an infection--never even occurred to me. This doesn't have some of the features, at least not yet, of an ordinary sinus infection. But it's some kind of miserable, I know that.....). The kicker, as I understand what I read, is something about pressure on the ears with CPAP running. Don't quote me on that 'cause I didn't study the article, just read it.
I just can't reconcile in my mind a plan that includes stopping a treatment, that everyone says is keeping me from dying in my sleep, for a week. I can't imagine how that's safe. Months ago I'd have probably welcomed the chance to stop!, but not anymore. Now I get it. Now I'm more comfortable with that stupid mask on and the machine running than I am without it. But that's what new people don't know yet.
This is turning into my thinking out loud which probably isn't helpful for what we're trying to sort out, sooooo.....
What do you guys think? I REALLY need some input here. I don't want this to turn into a bitch session, at least not endlessly--but I DO want to know what any and all of you think about the lack of upfront communication.....
Thanks for listening. I wouldn't have posted this till Mike really wanted me to. Now that he's posted it (with my permission), and now that I've started putting it down myself, I'm glad I did.
Thanks, MIke, for encouraging me to speak up about it. I truly DO trust this Forum and everyone on it--have for many months now.
Susan McCord (ain't go no smiles to give away at the moment--sorry.......)
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Permalink Reply by Tim on
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I am sorry to hear that you have a sinus infection, I know how are miserable they are. Has your PCP started you on an antibiotic? I wonder why your cardiologist states that sinus infections are common for people on CPAP -- and I think that he is probably wrong. I have not seen any documentation or heard of people on various forums that they have had increased rates of respiratory infections. There are a number of people who have various type of congestion, and I occasionally see some people who blame their CPAP for a cold, but I see no pattern of infection. A CPAP would make a sinus infection more miserable and it may make some people more susceptible to respiratory infections, but I don't see that there is an issue.
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Susan, I think you're right that "cover up" is the wrong term... as is jnk when he says that he doesn't think it's a conspiracy. Susan nailed it on the head in a way that makes it very clear to me exactly what this is about:
"I honestly don't know if it smacks as much of "cover-up" as it does terribly limited thinking, particularly specialists, re: patients rights to make INFORMED decisions. It's almost as if the more dangerous the illness is, the more the docs just want to treat and not talk about it much."
It's all about this paternalistic and/or arrogant attitude among many doctors that patients cannot making informed, intelligent decisions based on the total mix of information. And this is very damaging: how are we supposed to question our doctors about risks we do not know about? Well, Susan, at least by hashing this out here some folks will be in a better position should they develop similar symptoms than you were, and will not have to spend quite as much time spinning their wheels suffering. So i'm glad you gave me permission to share this with the group. We did the right thing.
susan mccord said:Mike, even as pissed as I am, (and you KNOW I am!) I don't think I would assign "cover-up" to this deal. My gut sense of it is that the MDs who do it are so focused on patients getting treatment, specifically CPAP in this case, and so many people are resistant anyway, that they worry that informing about possible side effects will scare people away from treatment.
I've seen the EXACT same thing happen with oncologists who over and over don't give patients information re: risk vs benefit prior to the patient starting chemo or radiation treatment. Then when some of the inevitable side effects begin, patients get really upset and anxious, and sometimes VERY angry when they find out that it's not unusual. The oncologists tend to say things like "If I tell them what the possible/probably side effects of (whatever treatment it is), they'll develop those symptoms". AS IF!!!
I didn't like it when I was working with cancer patients--I don't like it now. But I honestly don't know if it smacks as much of "cover-up" as it does terribly limited thinking, particularly specialists, re: patients rights to make INFORMED decisions. It's almost as if the more dangerous the illness is, the more the docs just want to treat and not talk about it much.
Don't get me wrong!! I'm NOT defending the practice--good God, after what I've been going through, I wouldn't wish it on anybody. What chaps my ass is that if I'd known what it WAS, I could have been handling it from the get-go instead of having 5 months of misery that, I think, was unnecessary.
Like I told you, before you posted this, my concern (always on SG) is for new people coming in. I don't want anyone to make a decision out of fear, based on what's happening with me. Despite the fact that CPAP is the contributing factor here, and probably will continue to be a chronic issue for me, I'm not even CONSIDERING d/c-ing treatment. I know too much now about how dangerous apnea is. AND I also already have heart disease so I'm double-jeopardy. But even if I weren't a heart patient, I wouldn't stop CPAP. There are just too many reasons to stay compliant.
So here we are again, on SleepGuide, hashing things out and trying to figure out how it is that we can find ways to optimize our (difficult) courses of treatment. How the hell do we navigate the health care system? I was a practitioner for many years and even knowing all that I know about communicating, here I am in a mess because, for whatever reason, I didn't realize I was gonna have to fight my caregivers for information.
It's not news to me, people!!!!! I've seen it happen to a gazillion patients!!!
My youngest son came within an inch of dying from pneumonia 3 years ago because two different MDs didn't listen closely to what was happening to him. WE knew he was desperately ill--they thought he had "a virus". I sat in the hospital with him, all night, every night, and watched him dying right in front of my eyes.....turned out his immune system has been compromised by Type II Diabetes. We didn't know that was even an issue at the time. The pulmonologist who cared for him (from ER on) said he was too sick to move to a hospital better-equipped to care for him, but he saved him anyway. Sweet Jesus.......another totally different scenario than apnea, but same problem. Communication, or rather the lack thereof.
Just my opinion, but I don't think the problem is only relative to sleep specialists. I think it's (probably) rampant among many MDs, for who truly knows what reason. ( I can just hear Dan Lyons right now: "It's a $$ issue--they're just out to make as much $$ as possible!).....lol Maybe he's right. I don't know. But sleep docs are the ones we're concerned with here, so what ideas do any of you guys have?????
I read on the internet that we shouldn't stay on CPAP with an upper respiratory infection (see!, that's the kicker for me--I KNEW on a gut level that I was having side effects although nobody would say that, but it never occurred to me that I have an infection--never even occurred to me. This doesn't have some of the features, at least not yet, of an ordinary sinus infection. But it's some kind of miserable, I know that.....). The kicker, as I understand what I read, is something about pressure on the ears with CPAP running. Don't quote me on that 'cause I didn't study the article, just read it.
I just can't reconcile in my mind a plan that includes stopping a treatment, that everyone says is keeping me from dying in my sleep, for a week. I can't imagine how that's safe. Months ago I'd have probably welcomed the chance to stop!, but not anymore. Now I get it. Now I'm more comfortable with that stupid mask on and the machine running than I am without it. But that's what new people don't know yet.
This is turning into my thinking out loud which probably isn't helpful for what we're trying to sort out, sooooo.....
What do you guys think? I REALLY need some input here. I don't want this to turn into a bitch session, at least not endlessly--but I DO want to know what any and all of you think about the lack of upfront communication.....
Thanks for listening. I wouldn't have posted this till Mike really wanted me to. Now that he's posted it (with my permission), and now that I've started putting it down myself, I'm glad I did.
Thanks, MIke, for encouraging me to speak up about it. I truly DO trust this Forum and everyone on it--have for many months now.
Susan McCord (ain't go no smiles to give away at the moment--sorry.......)
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Permalink Reply by BeeAsleep on
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WOW. And here I sit right now with a whopper sinus infection....the second one I have had in the 7 months I have been on CPAP. I always clean my machine and mask and hose. I feel horrible and had one heck of a time sleeping last night due to the sinus infection...probably going to head out for some antibiotics tomorrow...
Sure would have been nice to know that this is a common side effect. I will give my sleep specialist doc a call tomorrow. If I have something to repot I will post it as well. bee
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A little condescending there on your part, Tim. You don't have all the facts by a long shot. Mike edited quite a lot of my message to him. Can't say that I find your comments very helpful today.....
Susan McCord
Tim said:I am sorry to hear that you have a sinus infection, I know how are miserable they are. Has your PCP started you on an antibiotic? I wonder why your cardiologist states that sinus infections are common for people on CPAP -- and I think that he is probably wrong. I have not seen any documentation or heard of people on various forums that they have had increased rates of respiratory infections. There are a number of people who have various type of congestion, and I occasionally see some people who blame their CPAP for a cold, but I see no pattern of infection. A CPAP would make a sinus infection more miserable and it may make some people more susceptible to respiratory infections, but I don't see that there is an issue.
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I've edited the title so that it doesn't include the term "cover up" -- we all know there's no conspiracy here, and that wasn't the proper term to use.
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Hi Bee--I hear 'ya. You and I are by FAR not the only ones. I started an antibiotic last night along with some other things my PCP recommended. I've apparently had this one, low level, since at least August. Per MD, my immune system was able to hold it off to 2-3 days of symptoms at a time, but when I went to AZ the sudden temperature change and the change of pressure flying blew out my immune system. Sicker'n a dog. I've had maybe 2-3 sinus infections in my life, none recently (except this business), but this is a whopper. Probably due to the fact that it's been chronic for several months and I had no idea that's what it was. There's stuff all over the internet about people with the same thing. I just wasn't looking under "infection" 'cause I didn't know that's what it was. Oy vey.........
I don't think mine's related to cleaning issues. I'm careful with my equipment. I recall reading somewhere, probably internet, that distilled water doesn't harbor bacteria because it has to have something to feed on and distilled water has no such thing. Haven't re-checked about that, but I did see it somewhere. Will check again tonight and see what I can find.
Glad you're gonna ask for an antibiotic--both my cardiologist (who's also an internist) and my PCP said I definitely need one.
Did you sleep with CPAP on last night? I did, but didn't sleep as long as usual. I'm scared to go off it but that's what my docs mentioned.(haven't talked to sleep doc--can't get to him, at least I couldn't today). There are several medical sites online that say we should go off with a sinus infection also. Can't quite wrap my mind around the safety issue.....
Let me know how you're doing.
Susan :-)
BeeAsleep said:WOW. And here I sit right now with a whopper sinus infection....the second one I have had in the 7 months I have been on CPAP. I always clean my machine and mask and hose. I feel horrible and had one heck of a time sleeping last night due to the sinus infection...probably going to head out for some antibiotics tomorrow...
Sure would have been nice to know that this is a common side effect. I will give my sleep specialist doc a call tomorrow. If I have something to repot I will post it as well. bee
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I have high-moderate to severe OSA, depending on whether I believe the sleep lab's doc's #s or my sleep doc's impression of the #s. Sleep lab evaluation was low severe with #s that support that. Not talking about a cold here, Jeff. Talking about a recurrent infection that's totally impacted the quality of my life and my activity-planning--I never know how I'll be when I wake up in the a.m. When I'm symptomatic, I can't go anywhere because it's not a pretty sight to see....
j n k said:Avoiding PAP therapy out of fear of getting a cold would be silly. And you get colds from other people, not from yourself.
Sure, you should clean your stuff for the same reason you wash your dishes after a meal. But there is no need to get too obsessive about such things under normal circumstances. A climate-controlled home is a different environment from the outdoors, but every home is different.
It is true, though, I think, that it is not uncommon for someone starting out with CPAP to get a whopper of an upper respiratory infection sometime during the first few weeks/months, because the pressurized air creates a new environment in the airway that the upper respiratory system has to adapt to. As it adapts, that window allows opportunistic bugs an opportunity to make it past the defenses in the sinuses. If it happens, it happens. No big deal. Being forewarned about the possibility wouldn't help too much, I don't think. The important thing is to get used to the therapy.
When that infection occurs, if a patient feels unable to make the decision about whether to discontinue use for a few days in that circumstance, the patient may want the input of his primary care doc or his sleep doc. But the answer may depend on a lot of factors. For example, if an otherwise healthy patient has relatively mild sleep apnea, a night or two without PAP, in order to help the body deal with the infection, won't likely do much damage. That person may choose to spend a few nights sitting up sleeping in a recliner, no big deal. On the other hand, a person with very severe apnea and a heart condition may want to think about things more seriously and not make the decision all on his own. So the answer really does depend on many factors.
PAP therapy can cause irritation to the sinuses. But with proper humidity and a good mask and some time and experimentation, most can find a way to make it work. It may take saline or nasal irrigation or maybe even a medicated nasal spray--but there are things to try.
There is no conspiracy, though. Personally I agree that compliance is more important than avoiding use of CPAP for fear of getting a cold. Such problems can be solved with good communication with docs and with one another here as patients as we help one another try solutions one at a time, scientifically and methodically, to get things as good as they can be.
That is my understanding as a patient based on what I've read in forums.
jeff
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To keep this conversation on track, I think Susan would benefit from 2 things:
1. Has anyone else (like Bee) experienced these kind of sinus problems?
2. She NEEDS to try to figure out whether to go off CPAP for a week. What do you all think in light of all the circumstances?
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Does anybody have any links showing that CPAP increases the likelihood of respiratory or sinus infections? I have never seen anything that would indicate that this is a known problem -- and I have been reading about sleep apnea and treatments for the past 10+ years.
I just did a quick Google search and found one cite that has some information: http://www.ncbi.nlm.nih.gov/pubmed/11353913
"Nosocomial infections are recognized as a major problem in patients with endotracheal ventilation, but the risk of nosocomial pneumonia is less well known and considered to be lower for patients on noninvasive ventilation. ... The notion of a specific risk of noninvasive ventilation-related nosocomial infection is less certain although current data do show a risk level no higher than in non-ventilated patients. ..." I added the emphasis.
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Tim, you might want to google "CPAP and sinus infection"--that's where I ran across a # of different conversations. Sorry, I don't remember the exact sites 'cause I was going from one to another. Thanks for checking further. I didn't mean to be rude to you while ago. I've had a bad couple of days, and I think I'm touchier than I'd be ordinarily. Forgive me?, I hope.....
Susan :-)
Tim said:Does anybody have any links showing that CPAP increases the likelihood of respiratory or sinus infections? I have never seen anything that would indicate that this is a known problem -- and I have been reading about sleep apnea and treatments for the past 10+ years.
I just did a quick Google search and found one cite that has some information: http://www.ncbi.nlm.nih.gov/pubmed/11353913
"Nosocomial infections are recognized as a major problem in patients with endotracheal ventilation, but the risk of nosocomial pneumonia is less well known and considered to be lower for patients on noninvasive ventilation. ... The notion of a specific risk of noninvasive ventilation-related nosocomial infection is less certain although current data do show a risk level no higher than in non-ventilated patients. ..." I added the emphasis.
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