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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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Just getting started with my CPAP, a little over a week, I am reviewing this subject carefully. I have had sinus problems ongoing for so long, I thought that was my biggest problem before I learned about SA. I had an allergy test in mid 2009, showing allergy to grasses, weeds and trees. I also notice a difference on days with higher pollution levels (Denver metro area). I had a "cold" the week before I got my CPAP, but thought it was mostly cleared up by the time I started with the CPAP. I have had very good success using my CPAP with nasal pillow mask and oxygen, with heated humidifier, though not feeling much energy yet. Though I have much less tiredness and brain fog in the morning, I still start to feel significantly tired by mid afternoon. I was thinking this was going to take some time, as I may be more oxygen depleted than I knew. Also, I am thinking that my cold was still lingering. I did notice a little yellow mucus a few mornings, despite using a new antihistamine nasal spray - Astelin. I did not think this was doing much for me, so I called my PCP, as I also had sinus and ear pressure and mild pain. My PCP immediately gave me an antibiotic script (without my asking), and another nasal spray we had talked about - Fluticasone Propionate, a corticosteroid. I think the antibiotic helped but not sure if it was enough, and will be using the corticosteroid nasal spray for about a month until it is gone, to reduce inflamation and congestion. Yesterday, I had a sinus (?) headache that I treated with ibuprofen, a half dose of sudafed decongestant, and loratadine (generic Claritin). This combo, along with the nasal spray did allow me to sleep well with my CPAP, though the sinus pressure is not completely gone. I have relied on these OTC medications so much in the past few years that I was concerned about them affecting my overall health. I see that I will need to monitor this closely, and make sure to keep my equipment very clean.

I also was wondering about the potential effect of the CPAP air pressure to push bacteria already in the nasal passages deeper into the sinuses, making it more difficult for the body to flush it out. I am also wondering what the best course of action is for myself - to lay off the CPAP to get the sinus infection cleared, or keep using it. I sooo want this CPAP treatment to work. I'm tired of being tired.

I am also trying to increase my use of Nielmed Nasal Wash, which I recommend for keeping the nasal passages hydrated and flushing out bacteria and allergens. Another thing I have begun using occasionally is to eat a raw clove of garlic, chopped up in food, for it's natural antibiotic action.
Hi RL--sounds to me like you're doing a LOT of good, thoughtful things for yourself--good for you!! I think you can probably trust your apparently innate common sense to wade through this. Your MD is apparently pro-active on your behalf which is a blessing. I ended up sleeping with my CPAP on last night. Like you, I want this treatment program to work to its optimal level. As long as I can tolerate it, I'm gonna use it unless some MD tells me not to because of a specific reason.

The fact that you're already feeling less foggy this early in treatment is a VERY good sign. Don't get concerned about the energy piece. You have a sleep deficit going that will take awhile to eliminate. It's different for everybody. Sometimes you'll hear someone say 2 weeks should do it, sometimes someone will say 2 months, ans some folks take a lot longer. It varies, I think, related to amount of sleep deprivation, age, physical stamina in general, and overall health. Be patient. You WILL feel better. You're already making headway.

Since I've been having all this sinus trouble ( i don't have a history of it, nor of lots of colds), I've been trolling around for info and recs--I've read somewhere that steroid spray is helpful, so sounds like your doc's on top of things. I'm trying a nasal spray that Irma (SleepGuide), who's also having sinus problems, is using that helps her a lot. Her ENT recommended it to her. It's called Ayr Gel Nasal Spray. He told her it moisturizes the nose well and stays put better than just plain saline spray. I couldn't find it when I looked for it--she'd gotten hers from drugstore.com--I was hoping to find it in town. Irma checked the internet with my zip code and found out Meijer, a huge chain around here, carries it in stock. Sure enough I found the gel today. So I'm trying it for the first time tonight. It's helped Irma a lot. If you want the link sometime, just let me or Irma know. Probably shouldn't mix it with what YOUR doc Rx'd for you. Only my opinion.

I'm glad you're here. I'll hold good thoughts for your progress on CPAP. Feel free to contact me anytime if you want to. I'm glad to see you active on the Forum already. Lots of good people ready and willing to help.

Take care.

Susan McCord :-)

RL said:
Just getting started with my CPAP, a little over a week, I am reviewing this subject carefully. I have had sinus problems ongoing for so long, I thought that was my biggest problem before I learned about SA. I had an allergy test in mid 2009, showing allergy to grasses, weeds and trees. I also notice a difference on days with higher pollution levels (Denver metro area). I had a "cold" the week before I got my CPAP, but thought it was mostly cleared up by the time I started with the CPAP. I have had very good success using my CPAP with nasal pillow mask and oxygen, with heated humidifier, though not feeling much energy yet. Though I have much less tiredness and brain fog in the morning, I still start to feel significantly tired by mid afternoon. I was thinking this was going to take some time, as I may be more oxygen depleted than I knew. Also, I am thinking that my cold was still lingering. I did notice a little yellow mucus a few mornings, despite using a new antihistamine nasal spray - Astelin. I did not think this was doing much for me, so I called my PCP, as I also had sinus and ear pressure and mild pain. My PCP immediately gave me an antibiotic script (without my asking), and another nasal spray we had talked about - Fluticasone Propionate, a corticosteroid. I think the antibiotic helped but not sure if it was enough, and will be using the corticosteroid nasal spray for about a month until it is gone, to reduce inflamation and congestion. Yesterday, I had a sinus (?) headache that I treated with ibuprofen, a half dose of sudafed decongestant, and loratadine (generic Claritin). This combo, along with the nasal spray did allow me to sleep well with my CPAP, though the sinus pressure is not completely gone. I have relied on these OTC medications so much in the past few years that I was concerned about them affecting my overall health. I see that I will need to monitor this closely, and make sure to keep my equipment very clean.

I also was wondering about the potential effect of the CPAP air pressure to push bacteria already in the nasal passages deeper into the sinuses, making it more difficult for the body to flush it out. I am also wondering what the best course of action is for myself - to lay off the CPAP to get the sinus infection cleared, or keep using it. I sooo want this CPAP treatment to work. I'm tired of being tired.

I am also trying to increase my use of Nielmed Nasal Wash, which I recommend for keeping the nasal passages hydrated and flushing out bacteria and allergens. Another thing I have begun using occasionally is to eat a raw clove of garlic, chopped up in food, for it's natural antibiotic action.
Tim, I've always been told to soak my humidifier chamber in warm water and white vinegar -- one part vinegar to 10 parts warm water, then rinse well and air dry. I wash my hose by soaking it in warm water and I forget the name of it--that blue liquid dishwashing soap--that stuff works GREAT! Leaves only a clean smell. I hang it over the shower rod to dry. Do you have other ideas about cleaning? I know we're NOT supposed to use any kind of antibacterial soap, etc. on any of this equipment. I hear that from every source I've ever been on. So other than what I'm doing and changing filters, I don't know what else I can do. I'm pretty good about the cleaning business, just because I worry about it and always have with it pumping right into my body. I'm open to new ideas though, if they make sense to me. Someone on here yesterday, I think, said we can take our machines into DME and have them cleaned professionally. My DME is great---I know they have a super duper cleaning machine that sterilizes their stuff. I don't know if I need something that huge or not......I feel fairly comfortable about the hygiene piece of all this. It's not that hard to do. We just need to do it......

Susan :-)

Tim said:
I think that a takeaway from that study is that doctors and DMEs should emphasize to patients who use a humidifier that the water chamber and hose has to be kept clean.

One problem I read about is that DMEs tend to give cleaning instructions that do not agree with the manufacturer's instructions, and this confuses patients.
Thanks Susan,
I have learned so much from all of you already, which has helped me ask my PCP and DME better questions. This forum is great, as it must be impossible for general practitioner doctors to keep up with everything out there with all of their patients. I imagine most DMEs do want to be helpful also, but are not always well informed. Having and dealing with a condition personally is much different than learning about it abstractly, so patients have a certain advantage and ability to help each other. Plus we have "endless" time to spend reading and writing notes on blogs instead of going to bed at a reasonable hour - ha! Well it sounds like you have more than your share of physical challenges. I wish you a quick recovery from your sinus infection, as any type of infection can make a body feel quite bad all over.

I will look for that Ayr gel too. Always good to have another weapon in the arsenal. I especially like products that work without negative side effects from long term use.

susan mccord said:
Hi RL--sounds to me like you're doing a LOT of good, thoughtful things for yourself--good for you!! I think you can probably trust your apparently innate common sense to wade through this. Your MD is apparently pro-active on your behalf which is a blessing. I ended up sleeping with my CPAP on last night. Like you, I want this treatment program to work to its optimal level. As long as I can tolerate it, I'm gonna use it unless some MD tells me not to because of a specific reason.

The fact that you're already feeling less foggy this early in treatment is a VERY good sign. Don't get concerned about the energy piece. You have a sleep deficit going that will take awhile to eliminate. It's different for everybody. Sometimes you'll hear someone say 2 weeks should do it, sometimes someone will say 2 months, ans some folks take a lot longer. It varies, I think, related to amount of sleep deprivation, age, physical stamina in general, and overall health. Be patient. You WILL feel better. You're already making headway.

Since I've been having all this sinus trouble ( i don't have a history of it, nor of lots of colds), I've been trolling around for info and recs--I've read somewhere that steroid spray is helpful, so sounds like your doc's on top of things. I'm trying a nasal spray that Irma (SleepGuide), who's also having sinus problems, is using that helps her a lot. Her ENT recommended it to her. It's called Ayr Gel Nasal Spray. He told her it moisturizes the nose well and stays put better than just plain saline spray. I couldn't find it when I looked for it--she'd gotten hers from drugstore.com--I was hoping to find it in town. Irma checked the internet with my zip code and found out Meijer, a huge chain around here, carries it in stock. Sure enough I found the gel today. So I'm trying it for the first time tonight. It's helped Irma a lot. If you want the link sometime, just let me or Irma know. Probably shouldn't mix it with what YOUR doc Rx'd for you. Only my opinion.

I'm glad you're here. I'll hold good thoughts for your progress on CPAP. Feel free to contact me anytime if you want to. I'm glad to see you active on the Forum already. Lots of good people ready and willing to help.

Take care.

Susan McCord :-)

RL said:
Just getting started with my CPAP, a little over a week, I am reviewing this subject carefully. I have had sinus problems ongoing for so long, I thought that was my biggest problem before I learned about SA. I had an allergy test in mid 2009, showing allergy to grasses, weeds and trees. I also notice a difference on days with higher pollution levels (Denver metro area). I had a "cold" the week before I got my CPAP, but thought it was mostly cleared up by the time I started with the CPAP. I have had very good success using my CPAP with nasal pillow mask and oxygen, with heated humidifier, though not feeling much energy yet. Though I have much less tiredness and brain fog in the morning, I still start to feel significantly tired by mid afternoon. I was thinking this was going to take some time, as I may be more oxygen depleted than I knew. Also, I am thinking that my cold was still lingering. I did notice a little yellow mucus a few mornings, despite using a new antihistamine nasal spray - Astelin. I did not think this was doing much for me, so I called my PCP, as I also had sinus and ear pressure and mild pain. My PCP immediately gave me an antibiotic script (without my asking), and another nasal spray we had talked about - Fluticasone Propionate, a corticosteroid. I think the antibiotic helped but not sure if it was enough, and will be using the corticosteroid nasal spray for about a month until it is gone, to reduce inflamation and congestion. Yesterday, I had a sinus (?) headache that I treated with ibuprofen, a half dose of sudafed decongestant, and loratadine (generic Claritin). This combo, along with the nasal spray did allow me to sleep well with my CPAP, though the sinus pressure is not completely gone. I have relied on these OTC medications so much in the past few years that I was concerned about them affecting my overall health. I see that I will need to monitor this closely, and make sure to keep my equipment very clean.

I also was wondering about the potential effect of the CPAP air pressure to push bacteria already in the nasal passages deeper into the sinuses, making it more difficult for the body to flush it out. I am also wondering what the best course of action is for myself - to lay off the CPAP to get the sinus infection cleared, or keep using it. I sooo want this CPAP treatment to work. I'm tired of being tired.

I am also trying to increase my use of Nielmed Nasal Wash, which I recommend for keeping the nasal passages hydrated and flushing out bacteria and allergens. Another thing I have begun using occasionally is to eat a raw clove of garlic, chopped up in food, for it's natural antibiotic action.
do you take ecanater if you do please stop
ecenationa
Echinacea can have a reverse effect if you take to much as it produce more white blood cell to atack the imune system
99, I've had REALLY good luck with echinacea taken when a virus or infection is starting to occur--I take it throughout the course of whatever particular illness it is and stop when It's over. It really DOES work. I do agree with you, though, that taking it as a daily supplement probably makes it less effective. I don't know that for sure but it makes sense to me. And I've heard other people say to stop it when you don't have something active going on except as a preventative in certain situations.

I'll tell you something else OTC that REALLY does work--Airborne!! Seriously, that stuff works like a charm, at least it does for me. I take several doses before I fly, after I get off the plane, and also when I'm gonna be in a close crowd that I can't get out of or visiting in a hospital for any reason. I rarely have ANY immune system problems.

Susan :-)

99 said:
Echinacea can have a reverse effect if you take to much as it produce more white blood cell to atack the imune system
I've used this Ayr Gel Nasal Spray several times now. It does seem to help, the same as saline spray helps but it doesn't dry and/or irritate as saline sometimes does. It's kinda weird initially 'cause it works with a little pump attached, so if you find it, be sure to read the directions re: priming the pump. You can use it as much as you want because it's not irritating and doesn't cause rebound--also helps if you HAVE been using antihistimine sprays too much. Worth a check out if you have these issues.

THANKS AGAIN, IRMA!!!

Susan :-)

RL said:
Thanks Susan,
I have learned so much from all of you already, which has helped me ask my PCP and DME better questions. This forum is great, as it must be impossible for general practitioner doctors to keep up with everything out there with all of their patients. I imagine most DMEs do want to be helpful also, but are not always well informed. Having and dealing with a condition personally is much different than learning about it abstractly, so patients have a certain advantage and ability to help each other. Plus we have "endless" time to spend reading and writing notes on blogs instead of going to bed at a reasonable hour - ha! Well it sounds like you have more than your share of physical challenges. I wish you a quick recovery from your sinus infection, as any type of infection can make a body feel quite bad all over.

I will look for that Ayr gel too. Always good to have another weapon in the arsenal. I especially like products that work without negative side effects from long term use.

susan mccord said:
Hi RL--sounds to me like you're doing a LOT of good, thoughtful things for yourself--good for you!! I think you can probably trust your apparently innate common sense to wade through this. Your MD is apparently pro-active on your behalf which is a blessing. I ended up sleeping with my CPAP on last night. Like you, I want this treatment program to work to its optimal level. As long as I can tolerate it, I'm gonna use it unless some MD tells me not to because of a specific reason.

The fact that you're already feeling less foggy this early in treatment is a VERY good sign. Don't get concerned about the energy piece. You have a sleep deficit going that will take awhile to eliminate. It's different for everybody. Sometimes you'll hear someone say 2 weeks should do it, sometimes someone will say 2 months, ans some folks take a lot longer. It varies, I think, related to amount of sleep deprivation, age, physical stamina in general, and overall health. Be patient. You WILL feel better. You're already making headway.

Since I've been having all this sinus trouble ( i don't have a history of it, nor of lots of colds), I've been trolling around for info and recs--I've read somewhere that steroid spray is helpful, so sounds like your doc's on top of things. I'm trying a nasal spray that Irma (SleepGuide), who's also having sinus problems, is using that helps her a lot. Her ENT recommended it to her. It's called Ayr Gel Nasal Spray. He told her it moisturizes the nose well and stays put better than just plain saline spray. I couldn't find it when I looked for it--she'd gotten hers from drugstore.com--I was hoping to find it in town. Irma checked the internet with my zip code and found out Meijer, a huge chain around here, carries it in stock. Sure enough I found the gel today. So I'm trying it for the first time tonight. It's helped Irma a lot. If you want the link sometime, just let me or Irma know. Probably shouldn't mix it with what YOUR doc Rx'd for you. Only my opinion.

I'm glad you're here. I'll hold good thoughts for your progress on CPAP. Feel free to contact me anytime if you want to. I'm glad to see you active on the Forum already. Lots of good people ready and willing to help.

Take care.

Susan McCord :-)

RL said:
Just getting started with my CPAP, a little over a week, I am reviewing this subject carefully. I have had sinus problems ongoing for so long, I thought that was my biggest problem before I learned about SA. I had an allergy test in mid 2009, showing allergy to grasses, weeds and trees. I also notice a difference on days with higher pollution levels (Denver metro area). I had a "cold" the week before I got my CPAP, but thought it was mostly cleared up by the time I started with the CPAP. I have had very good success using my CPAP with nasal pillow mask and oxygen, with heated humidifier, though not feeling much energy yet. Though I have much less tiredness and brain fog in the morning, I still start to feel significantly tired by mid afternoon. I was thinking this was going to take some time, as I may be more oxygen depleted than I knew. Also, I am thinking that my cold was still lingering. I did notice a little yellow mucus a few mornings, despite using a new antihistamine nasal spray - Astelin. I did not think this was doing much for me, so I called my PCP, as I also had sinus and ear pressure and mild pain. My PCP immediately gave me an antibiotic script (without my asking), and another nasal spray we had talked about - Fluticasone Propionate, a corticosteroid. I think the antibiotic helped but not sure if it was enough, and will be using the corticosteroid nasal spray for about a month until it is gone, to reduce inflamation and congestion. Yesterday, I had a sinus (?) headache that I treated with ibuprofen, a half dose of sudafed decongestant, and loratadine (generic Claritin). This combo, along with the nasal spray did allow me to sleep well with my CPAP, though the sinus pressure is not completely gone. I have relied on these OTC medications so much in the past few years that I was concerned about them affecting my overall health. I see that I will need to monitor this closely, and make sure to keep my equipment very clean.

I also was wondering about the potential effect of the CPAP air pressure to push bacteria already in the nasal passages deeper into the sinuses, making it more difficult for the body to flush it out. I am also wondering what the best course of action is for myself - to lay off the CPAP to get the sinus infection cleared, or keep using it. I sooo want this CPAP treatment to work. I'm tired of being tired.

I am also trying to increase my use of Nielmed Nasal Wash, which I recommend for keeping the nasal passages hydrated and flushing out bacteria and allergens. Another thing I have begun using occasionally is to eat a raw clove of garlic, chopped up in food, for it's natural antibiotic action.
Okay, I'm awake now! The soap I use for cleaning is Dawn Original dishwashing liquid, the blue stuff, no anti-bacterial stuff in it. I REALLY like it and it's cheap. A little goes a long way.

susan mccord said:
Tim, I've always been told to soak my humidifier chamber in warm water and white vinegar -- one part vinegar to 10 parts warm water, then rinse well and air dry. I wash my hose by soaking it in warm water and I forget the name of it--that blue liquid dishwashing soap--that stuff works GREAT! Leaves only a clean smell. I hang it over the shower rod to dry. Do you have other ideas about cleaning? I know we're NOT supposed to use any kind of antibacterial soap, etc. on any of this equipment. I hear that from every source I've ever been on. So other than what I'm doing and changing filters, I don't know what else I can do. I'm pretty good about the cleaning business, just because I worry about it and always have with it pumping right into my body. I'm open to new ideas though, if they make sense to me. Someone on here yesterday, I think, said we can take our machines into DME and have them cleaned professionally. My DME is great---I know they have a super duper cleaning machine that sterilizes their stuff. I don't know if I need something that huge or not......I feel fairly comfortable about the hygiene piece of all this. It's not that hard to do. We just need to do it......

Susan :-)

Tim said:
I think that a takeaway from that study is that doctors and DMEs should emphasize to patients who use a humidifier that the water chamber and hose has to be kept clean.

One problem I read about is that DMEs tend to give cleaning instructions that do not agree with the manufacturer's instructions, and this confuses patients.
I am sorry to hear about all the sinus infection problems so many of you have been having. I had a lot of sinus infections before I got on CPAP, then BiPap. My doctor prescribed Nasonex, which worked wonders. It cleared up the problems I had, and though it may sound strange, it seems as though since I've been on CPAP, then the BiPap, I have had none. I had read that CPAP can go both ways, either causing sinus problems or clearing them up. I'm fortunate that I went the direction of no more sinus problems. I do keep Nasonex in my medicine cabinet in the event I should need it. Usually if I notice any sign of a sinus thing starting, I give myself a squirt in the morning and that's it. I pray you find relief soon.
I have been on CPAP for 5 months now and it is proving hugely beneficial for me however after about two months I developed an inner ear infection and a cough. I received treatment and the ear infection cleared but the cough remains and I am now weezing.

Could this be the result of CPAP? should I ask to go on a coarse of antibiotics? I wash my gear in soapy water, should I use a disinfectant as well?
I personnally cant sleep without mine at all ..I ALSO HAVE BEEN HAVING PROBLEMS with my sinuses lately .I am so stuffy I cant breathe,I have been using nasal strips and medication..I now know because of reading your story I need to go to my doctor and get the right antibiotic..phew!!! I was wondering about this for a few weeks now.. THank you!! but still I have to have my machine I cant sleep without it..I to am afraid do to my history..I probably didnt help but thanks now I will go to my doctor....

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