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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???"

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I just googled "cpap and sinus infections" and the first page of sites that came up did not have any studies linking a direct link to cpap usage and sinus infections / respiratory issues. I am talking scientifically based research and just not users' opinions / doctors' stating that there is a direct relationship. I guess it is the teacher in me saying it must be scientifically based research, since we are constantly basing our teaching on scientifically based research models.

Everyone has their own opinions, doesn't make them scientifically based.

One doctor may see a higher number of patients that are more prone to issues than other doctors. Doesn't mean that everyone will be affected the same.

All medicines and medical procedures have their own pitfalls. Have you ever read the inserts included in many medicines? Most of them can put your life at risk for major complications or even death.

I am not trying to downplay Susan's illness. Just saying there are side effects to just living -- from even walking across the street (maybe hit by a car), eating (may choke on a piece of food), taking a shower (may slip in the shower), etc.

One thing I am curious about why didn't your cardio doctor prescribe an antibotic? It seems he should have been capable of doing it. How familiar is he with sleep disorders? Is he in a position to make fully informed decisions on whether a patient should discontinue treatment for a period of time? Even when one is hospitalized they tell you to continue your treatment.
I guess that the question is whether the CPAP makes the pain worse than not using it. I would use my CPAP if it doesn't increase the pain significantly. I haven't had a sinus infection while on CPAP, but I have had an ear infection and a few bouts of strep throat -- I always used my CPAP.
Hi Carol--Cardiologist and PCP don't cross-prescribe--each takes responsibility only for his area. In this case, It's a PCP call--my PCP doesn't Rx or refill my heart meds either. It's not a turf thing--just the way they prefer to prescribe for their patients. Makes no difference to me. I had no problem getting an Rx from my PCP yesterday.

My cardiologist is VERY familiar with sleep apnea. He's the one who recognized the symptoms last spring and referred me to neurology for a workup and sleep study. He does see patients who have both OSA and heart conditions of all kinds 'cause the two are linked in some major ways. Not at all uncommon for a patient to have both.

I would say he's in a position to make fully-informed decisions re: treatment for apnea. That's not what he did with me, however. I asked him what the protocol for CPAP with a sinus infection are, and his response was, "People usually go off CPAP for a week or so, take antibiotics (and whatever else the PCP rx's), and then go back on when the symptoms get better". When I responded that it scares me to even think about going off CPAP, he said, "I know"--no treatment recs--he was just giving asked-for information and being supportive.

And frankly, even if he had made some kind of recs, it seems to me it would have been appropriate considering that any O2 deprivation directly affects heart function. It IS part of his area, but he doesn't usurp another MD is one's involved.

Same as with PCP, he doesn't make cross-recs/treatment decisions or give his opinion about another MD's treatment protocol. NO MD I've ever known does that--they pretty much stick together! When he commented about MD's (in general) being reluctant to inform patients about potential side effects of CPAP, he was again responding to my question "Why don't doctors just tell us this stuff early on in treatment process so we'll be prepared/educated if and when a situation comes up"--again it was my general question to him. He's ALWAYS been incredibly honest and forthcoming with information 'cause I told him I wanted that in the beginning, when I was dx with heart disease 10/05, by him.

He's a licensed Internal Medicine doc as well as working in his specialty of Cardiac Intervention. Very highly- trained, knowledgeable and experienced, has an excellent professional and personal reputation here. Well known for superb patient care.

And yes, I am personally and painfully aware of the risks of taking combinations of medications. I take several heavy-duty meds for my heart that are scary as hell. But I was informed right up front of the risks and benefits of each one, and all of them in combination. I made an educated decision to take them because they're my best shot at keeping my heart disease under control. And I am experiencing too much of the "risk" part lately. So yeah, I get that......

THAT is the very point I'm concerned with in this entire thread this about apnea treatment. We aren't being fully informed re: treatment risks and benefits by our caregivers in many instances. I'm not making a blanket statement about every single sleep doc walking the planet--I'm talking about things I hear from people who have experienced that lack of education in this field, many of them here on SleepGuide. I'm only reporting specifics of what MY experience is and has been. It's a little hard for me to understand that some people are having a hard time accepting a reality that I'm dealing with. I'm not blaming anyone, but I just don't get why there's so much of an issue about what I'm talking about.

I didn't intend for it to be a topic of challenge or debate. I was just looking for some support and, hopefully, some thoughts that you guys might have about going off CPAP till I'm better. THAT you can find on the internet--guaranteed, including by the American Academy of Sleep whatever it is. Recs I've found all over the place related to this say to stop treatment if you have a sinus infection and some of them say with a cold as well. Easy to confirm if you want to. That flies in the face of everything I've been learning about the importance of staying compliant with CPAP.

I'm not trying to be belligerant here. I'm just confused and questioning why I've been dealing with this for 5+ months with no info forthcoming from my healthcare team.

Yikes!!!

Susan

sleepycarol said:
I just googled "cpap and sinus infections" and the first page of sites that came up did not have any studies linking a direct link to cpap usage and sinus infections / respiratory issues. I am talking scientifically based research and just not users' opinions / doctors' stating that there is a direct relationship. I guess it is the teacher in me saying it must be scientifically based research, since we are constantly basing our teaching on scientifically based research models.

Everyone has their own opinions, doesn't make them scientifically based.

One doctor may see a higher number of patients that are more prone to issues than other doctors. Doesn't mean that everyone will be affected the same.

All medicines and medical procedures have their own pitfalls. Have you ever read the inserts included in many medicines? Most of them can put your life at risk for major complications or even death.

I am not trying to downplay Susan's illness. Just saying there are side effects to just living -- from even walking across the street (maybe hit by a car), eating (may choke on a piece of food), taking a shower (may slip in the shower), etc.

One thing I am curious about why didn't your cardio doctor prescribe an antibotic? It seems he should have been capable of doing it. How familiar is he with sleep disorders? Is he in a position to make fully informed decisions on whether a patient should discontinue treatment for a period of time? Even when one is hospitalized they tell you to continue your treatment.
Liz, that's PRECISELY what I've been dealing with, combined with sudden switches back and forth to severe congestion, suddenly, for 5+ months. It's impossible to manage which is why I can't go out when I'm symptomatic. When it's gone, it's gone completely for days or even a few weeks at a time. Then it returns without warning.

Have you had major sneezing along with it? I had a patient several years ago who told me he had sneezed so hard one time that it threw his back out. I couldn't imagine that at the time. NOW I know exactly what he meant! Night before last I was walking down the bedroom hallway in my house and I sneezed so hard it actually threw me up against the wall. Talk about disconcerting......

Thank you for your input. I feel one iota less nuts now!

Susan McCord :-)

Liz Hamann said:
I was diagnosed in July of this year and having been using my CPAP machine regularly. In November, I developed major nasal symptoms, the worst of which was a constant runny (like a faucet) nose. After numerous OTC medications, I finally went to my PCP who prescribed antibiotics. Even had to have a 2nd prescription of a stronger type which finally did the job by mid-December. I am still trying different masks and trying to get used to it all.

Mike said:
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?
Hang in there Miss Susan, it is awful to have a sinus infection. It is not a cold for sure. I try to wear my mask. I put it on and try to sleep. I have been going for about 2 hours with it on then I get a coughing asthma fit, have to get my inhaler and start all over again with the mask. I don't think tonight will be good, right now I can not breathe at all through my nose.

The bottom line is this: I try to wear my CPAP no matter what. When my sinus hurts I don't wear my nasal mask because it feels like acid being blown up my nose. So I do the best I can until I can feel better and wear it again.

Antibiotics sure make a difference with a sinus infection. I hope you can find something that works for you. Thinking of you and sending you good energy.
doctors like to be incharge and they focus on one thing they do not focus on possible side effects they will treat the side effects latter thinking that the side effects are a lesser evil and so tolerate it as part of the treatment

also a doctor see so many pts that he does not want to get involved and so instead of saying mr williams they say that fractured leg or in this case that nose or whatever

also when you are ill to change the filter at the rear of the machine or give that a good clean
Thanks for your thoughts about this, 99. I appreciate it.

Susan :-)

99 said:
doctors like to be incharge and they focus on one thing they do not focus on possible side effects they will treat the side effects latter thinking that the side effects are a lesser evil and so tolerate it as part of the treatment

also a doctor see so many pts that he does not want to get involved and so instead of saying mr williams they say that fractured leg or in this case that nose or whatever

also when you are ill to change the filter at the rear of the machine or give that a good clean
thinking about cleaning the rear air intake filter
give it a good dusting and then expose the filter to uv light for 20-30 mins do not worry if you do not have a uv light as sun light will do the same

or just change them that is easyer

also insert a filter into the hose as a regulare user i do not use a filter because it my machine
Thanks Bee! Boy, I can't imagine having to deal with a sinus infection when you have asthma too. I haven't had to wrestle asthma or allergies, so maybe I oughtta give it a rest!! I'm sorry you're having such a tough time. Hope you can get started on antibiotics tomorrow.

Much as I fear going off CPAP, I'm inclined to try to do what you're doing--just do the best I can with what I can tolerate and stay on CPAP as much as I can. It's good to hear someone actually say what they do in a similar situation. Thank you.

I'm surprised to realize how really antsy I am about CPAP now. When I started out, I thought I'd never get used to it, but it didn't take too awfully long before I was okay. I must admit that occasionally, even now, I find myself stalling with putting it on for no reason (not connected with this current situation)--not sure why 'cause I always wear it and really don't mind it by now. But suddenly with a threat of not using it, it really does scare me not to.

Let me/us know what you decide about tomorrow and how you're doing. I'll be thinking about you....

Susan :-)

BeeAsleep said:
Hang in there Miss Susan, it is awful to have a sinus infection. It is not a cold for sure. I try to wear my mask. I put it on and try to sleep. I have been going for about 2 hours with it on then I get a coughing asthma fit, have to get my inhaler and start all over again with the mask. I don't think tonight will be good, right now I can not breathe at all through my nose.

The bottom line is this: I try to wear my CPAP no matter what. When my sinus hurts I don't wear my nasal mask because it feels like acid being blown up my nose. So I do the best I can until I can feel better and wear it again.

Antibiotics sure make a difference with a sinus infection. I hope you can find something that works for you. Thinking of you and sending you good energy.
Tim, one of the things I read said something about not using CPAP with sinus infection because of some potential pressure problem with ears. But I'm thinking if you were able to use yours with an actual ear infection, maybe it'll be okay.

Mine doesn't seem to increase my distress once I can get my nasal symptoms calmed down in bed. It takes a little while but so far, using mostly saline spray, I can eventually get it done. Once I can get to sleep I usually sleep okay but wake up sooner than usual. At least that's what happened last night. My symptoms actually seem to soothe out when I'm on CPAP 'cause I have a heated humidifier turned up as high as it will go. If I turn it down, by history, I REALLY have a lot of symptoms. Go figure.....the whole thing's weird to me.

Okay, between your reporting this and what Bee just was saying, I'm gonna go ahead and sleep with it as long as I can. If you guys have done okay with trying it, maybe I will be too. Feels better than just stopping.....

Thanks for your input, Tim. Did you forgive me for being a be-atch???!! :-)

Susan

Tim said:
I guess that the question is whether the CPAP makes the pain worse than not using it. I would use my CPAP if it doesn't increase the pain significantly. I haven't had a sinus infection while on CPAP, but I have had an ear infection and a few bouts of strep throat -- I always used my CPAP.
you should also drink plenty of H2O
No worries Susan. I forgive you. You are sick and miserable and I get a bit blunt at times.

I have been on CPAP for about 15 years, and in the past ten years I have read a lot of about sleep apnea. I haven't seen any research or medical articles linking CPAP with increased infections. I have read a few anecdotal reports on apnea and CPAP forums where people have blamed their CPAP use for colds, allergy symptoms, and infections. I don't know if CPAP is a factor for those relatively few people who get infections coincident with CPAP use, but I don't believe that the medical community on the whole believes that it is a factor. I don't believe that doctors are hiding or withholding information regarding any links between CPAP use and infection.

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