Replies to This Discussion

Permalink Reply by Melinda Hertel on August 14, 2009 at 11:58am

Susan, are you using any medications for allergies? Pills, nasal sprays, nasal rinses, etc.? Are you experiencing the symptoms while using CPAP or just throughout the day after using CPAP? Did you have any of these problems before starting CPAP therapy?

Because CPAP opens your airway (including sinuses, nasal passages, throat, etc.) things can start running--I mean nasal drainage. Congestion can occur if the air is too dry coming from the CPAP. There could be a lot of factors involved, so more information would help. The cough is probably from post nasal drip. The headache could be from sinus irritation and pressure from congestion. Did you have allergies before starting CPAP?

Most importantly, have you talked to your doctor about this? Your symptoms are not unusual.

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Permalink Reply by susan mccord on August 14, 2009 at 12:37pm

Hi Melinda--thanks for replying to my c/o re: respiratory sides. I have no allergies, never have, take none of the meds you mentioned. These symptoms began the a.m. after the first time I was on CPAP. The first time, it lasted for 8 days, despite humidification. I thought I had a really bad cold and was on here with concerns re: using CPAP with a cold, sanitizing equipment, etc. It wasn't a cold 'cause the whole thing stopped overnight! I had it for 8 days, no relief, then I got up the next a.m. and it was GONE. Completely. I was doing fine for a couple of weeks, on CPAP, etc. Then yesterday (or the day before, I can't remember) I woke up with it again. Have had it ever since although it seems mildly improved today which is different from the first time. Re: meds, I will say that I use a squirt or two of a mild 4-hour nasal decongestant spray when I go to bed or I wouldn't be able to use the mask at all. Don't use it during the night, presumably because the humidity is helping. I'm scared to death of that stuff, so I use it sparingly, but I absolutely cannot breathe through my nose when the congestion gets really bad.

I have yet to see a sleep doctor, scheduled for 9/1. Was diagnosed in June. (That was the subject of a rant I posted yesterday re: no f/u care). I'm a heart patient, pretty sure my CPAP pressure is too low, and there's no Rx for a range of settings. It seems like I've talked to a dozen people about this, but no answers, except on SleepGuide.

I'm not prone to upper respiratory problems, headaches, etc., and never have been except when my kids were young and brought home every bug on the planet! So this is feeling pretty miserable. Everyone of SG says these sx will resolve with time. I have to believe that's true or I don't know if I could continue tx. But I HAVE to continue tx because I'm a heart patient as well. So I'm up and down in my head a lot. It spills over into SG because it's the one place where people listen and understand. (I've said that maybe a gazillion times before on here, but it's true).

I'm a young 67 yo retired professional, strong immune system by hx, and just frustrated right now with, what I know, are side effects of CPAP. I've signed up for Dr. Park's teleconference on Tuesday, 8/18 after submitting my questions about all this. He's been SO helpful to me and to many others here, that I think I may get some info there. I DO understand the mechanism behind all that air being forced into nasal and sinus passages, and the body's attempts to adjust to it with more mucous, etc. What's disturbing to me is that it seems so erratic and unpredictable. I use humidification every night and have since I started tx. Have tried various levels, heat and no heat, which helps some but when this rares up, it totally interferes with my day-to-day life, and I'm not very gracious about it!! For me, it's harder than adjusting to the pump. I'm interested in knowing your further thoughts about all this....

Susan McCord

Melinda Hertel said:

Susan, are you using any medications for allergies? Pills, nasal sprays, nasal rinses, etc.? Are you experiencing the symptoms while using CPAP or just throughout the day after using CPAP? Did you have any of these problems before starting CPAP therapy?

Because CPAP opens your airway (including sinuses, nasal passages, throat, etc.) things can start running--I mean nasal drainage. Congestion can occur if the air is too dry coming from the CPAP. There could be a lot of factors involved, so more information would help. The cough is probably from post nasal drip. The headache could be from sinus irritation and pressure from congestion. Did you have allergies before starting CPAP?

Most importantly, have you talked to your doctor about this? Your symptoms are not unusual.

• ▶ Reply

Permalink Reply by Melinda Hertel on August 14, 2009 at 12:58pm

Why do you think your pressure is too low? And why the heck have you not been to a sleep specialist yet? It sounds like things have been done a little backwards in your case! One thought would be to try a full face mask--one that covers your mouth too so that you can breathe through your mouth when you are congested. Does the nose running and congestion occur back and forth throughout the day? Or are you only congested at night and runny during the day?

You can develop allergies at any time in your life. It may just be that your nasal flow was blocked before CPAP and not much got in. Now that you are opened up, your nasal/sinus passages are reacting to having never been touched. How long have you been using CPAP?

If I were to guess, the physician I work with would have you try Mucinex to keep mucous thin and reduce congestion. Sometimes he recommends prescription nasal sprays (they have steroid solutions in them) to use just at bed time. I just really think you need to be evaluated by a doctor--a sleep doc and an ENT(ears,nose,throat) if symptoms continue.

• ▶ Reply

Permalink Reply by susan mccord on August 14, 2009 at 1:47pm

The reason I think my pressure is too low is a combination of things: #1. I've had a couple of mornings when I woke up after 4-5 hours of sound sleep on CPAP to feeling like I wasn't getting enough air. The second time it happened, it was uncomfortable enough that I had to get UP immediately, like an instinctive reaction. #2. I've brought it up on here after it happened, and a couple of people thought my pressure was probably too low. There's apparently something like "cluster episodes" that happen with some people where they have a bunch of events together at the 4-5 hour sleep point. THAT sounded familiar!! and #3. When I got my sleep study reports back (complete this time), the MD that evaluated me said I'd continued to have some "events" at 7 but hadn't been tested higher than that. So her beginning recs were for starting CPAP at 9 and providing "close clinical monitoring" to determine what pressure would be effective. THAT sure hasn't happened. It's like once I walked out of the lab I didn't exist anywhere. I didn't KNOW that's what she'd said till just last week when I finally got the complete report, or I'd have been all over finding an MD.

I was originally referred to Neuro by my cardiologist because of my extreme exhaustion, which does not seem to be related to cardiac problems at this time. Had an MRI, and both sleep studies, and went home. I finally called Neuro to find out what the outcome was, and the girl who speaks for the neurologist, (?) told me I had severe sleep apnea. I had been schedued with this same neurologist, who is NOT a sleep specialist, for 6-7 weeks after testing was complete. I didn't know any better at the time. Thought it was weird. Sleep clinic had told me DME would call me in two days to set up a fitting, etc. -I never heard a word. Finally got on here, thank God, after looking all over the internet for info/support. Learned a LOT since then. (was diagnosed in June, came here the end of August) I finally had to really rattle cages to find out why DME hadn't set me up with a pump. They kept saying they didn't have the proper paperwork and Medicare had to have it to approve treatment. So I called MD's, and DME, and Neuro, etc. ad nauseum one day, and just drove them all nuts. I worked in health care for many years so by then I KNEW what had happened which is that the paperwork was buried on the neurologist's desk somewhere. When, at the end of the day, I finally said that to "the girl who speaks for the neurologist!), she got all huffy with me, close to rude that I would dare question the MD. I asked her to just go look through the papers on neuro's desk. She was pissed off to say the least. This was weeks after DME was supposed to set me up, so I'm thinking "what does 'severe' mean?" And wonder of wonders, she called me back about half an hour later just as sweet as could be (no apology, of course) and said, again wonder of wonders, she'd "found" the paperwork and faxed it "immediately" to DME. OMG, I was ready to set a match to that office by then, but I just said thank you and hung up. DME did in fact call me immediately, and set up an appointment the next day--the tech stayed overtime to see me. So I finally got the machine and mask the third week of July or so. A month after testing. Oy vey!!!

Needless to say, I wasn't thrilled at the prospect of going back to that neurologist, so from what I learned here, I started looking for another sleep specialist. Good luck on that one. Finally found one who scheduled me for a month out, which is 9/1. There's another whole story that goes with all that, but it doesn't bear repeating right now.

So to answer one of your other questions, I've been on CPAP for about a month. Had a bad time initially, partly mask adjustment, and more so with the side effects we're talking about here. SG kept me going. The reason I have a hard time accepting the allergy explanation is that when this stuff cleared up for a couple of weeks, I had NO symtoms. Plus they went away overnight and I had NO symptoms till a couple of days ago. Doesn't make sense if it's an allergy. I was still using CPAP with humidification just like I always have.

Sooooo, I have a # of concerns. Have had some really good feedback and info on SG. Am now waiting (impatiently) to get in to see the doctor. My family doctor is sympathetic, knows me for over 35 years now, and hasn't got a clue what to do. He's great and I trust him, but there seems to be a monumental lack of universal basic education with a lot of doctors. My cardiologist didn't say much except he looked and acted pretty concerned when I told him about the diagnosis. He's a GREAT doc, and I trust both of them implicitly.

Jeez, I need to stop this. Whenever I get writing about just my experiences, let alone what others on here are going through, it just boggles my mind and I can't shut up! I should have sent this in installments, Melinda. Sorry.......

Susan McCord


Melinda Hertel said:

Why do you think your pressure is too low? And why the heck have you not been to a sleep specialist yet? It sounds like things have been done a little backwards in your case! One thought would be to try a full face mask--one that covers your mouth too so that you can breathe through your mouth when you are congested. Does the nose running and congestion occur back and forth throughout the day? Or are you only congested at night and runny during the day?

You can develop allergies at any time in your life. It may just be that your nasal flow was blocked before CPAP and not much got in. Now that you are opened up, your nasal/sinus passages are reacting to having never been touched. How long have you been using CPAP?

If I were to guess, the physician I work with would have you try Mucinex to keep mucous thin and reduce congestion. Sometimes he recommends prescription nasal sprays (they have steroid solutions in them) to use just at bed time. I just really think you need to be evaluated by a doctor--a sleep doc and an ENT(ears,nose,throat) if symptoms continue.

• ▶ Reply

Permalink Reply by susan mccord on August 14, 2009 at 1:50pm

Melinda, I didn't come to SG the end of August, it was toward the end of JULY.

Melinda Hertel said:

Why do you think your pressure is too low? And why the heck have you not been to a sleep specialist yet? It sounds like things have been done a little backwards in your case! One thought would be to try a full face mask--one that covers your mouth too so that you can breathe through your mouth when you are congested. Does the nose running and congestion occur back and forth throughout the day? Or are you only congested at night and runny during the day?

You can develop allergies at any time in your life. It may just be that your nasal flow was blocked before CPAP and not much got in. Now that you are opened up, your nasal/sinus passages are reacting to having never been touched. How long have you been using CPAP?

If I were to guess, the physician I work with would have you try Mucinex to keep mucous thin and reduce congestion. Sometimes he recommends prescription nasal sprays (they have steroid solutions in them) to use just at bed time. I just really think you need to be evaluated by a doctor--a sleep doc and an ENT(ears,nose,throat) if symptoms continue.

• ▶ Reply

Permalink Reply by Melinda Hertel on August 14, 2009 at 2:25pm

It's okay. I'm sorry you are having such a hard time. I'm not surprised though about the care, or lack thereof, you have received. I only wish you could be seen sooner. I'm glad you haven't given up yet!

Melinda

susan mccord said:

The reason I think my pressure is too low is a combination of things: #1. I've had a couple of mornings when I woke up after 4-5 hours of sound sleep on CPAP to feeling like I wasn't getting enough air. The second time it happened, it was uncomfortable enough that I had to get UP immediately, like an instinctive reaction. #2. I've brought it up on here after it happened, and a couple of people thought my pressure was probably too low. There's apparently something like "cluster episodes" that happen with some people where they have a bunch of events together at the 4-5 hour sleep point. THAT sounded familiar!! and #3. When I got my sleep study reports back (complete this time), the MD that evaluated me said I'd continued to have some "events" at 7 but hadn't been tested higher than that. So her beginning recs were for starting CPAP at 9 and providing "close clinical monitoring" to determine what pressure would be effective. THAT sure hasn't happened. It's like once I walked out of the lab I didn't exist anywhere. I didn't KNOW that's what she'd said till just last week when I finally got the complete report, or I'd have been all over finding an MD.

I was originally referred to Neuro by my cardiologist because of my extreme exhaustion, which does not seem to be related to cardiac problems at this time. Had an MRI, and both sleep studies, and went home. I finally called Neuro to find out what the outcome was, and the girl who speaks for the neurologist, (?) told me I had severe sleep apnea. I had been schedued with this same neurologist, who is NOT a sleep specialist, for 6-7 weeks after testing was complete. I didn't know any better at the time. Thought it was weird. Sleep clinic had told me DME would call me in two days to set up a fitting, etc. -I never heard a word. Finally got on here, thank God, after looking all over the internet for info/support. Learned a LOT since then. (was diagnosed in June, came here the end of August) I finally had to really rattle cages to find out why DME hadn't set me up with a pump. They kept saying they didn't have the proper paperwork and Medicare had to have it to approve treatment. So I called MD's, and DME, and Neuro, etc. ad nauseum one day, and just drove them all nuts. I worked in health care for many years so by then I KNEW what had happened which is that the paperwork was buried on the neurologist's desk somewhere. When, at the end of the day, I finally said that to "the girl who speaks for the neurologist!), she got all huffy with me, close to rude that I would dare question the MD. I asked her to just go look through the papers on neuro's desk. She was pissed off to say the least. This was weeks after DME was supposed to set me up, so I'm thinking "what does 'severe' mean?" And wonder of wonders, she called me back about half an hour later just as sweet as could be (no apology, of course) and said, again wonder of wonders, she'd "found" the paperwork and faxed it "immediately" to DME. OMG, I was ready to set a match to that office by then, but I just said thank you and hung up. DME did in fact call me immediately, and set up an appointment the next day--the tech stayed overtime to see me. So I finally got the machine and mask the third week of July or so. A month after testing. Oy vey!!!

Needless to say, I wasn't thrilled at the prospect of going back to that neurologist, so from what I learned here, I started looking for another sleep specialist. Good luck on that one. Finally found one who scheduled me for a month out, which is 9/1. There's another whole story that goes with all that, but it doesn't bear repeating right now.

So to answer one of your other questions, I've been on CPAP for about a month. Had a bad time initially, partly mask adjustment, and more so with the side effects we're talking about here. SG kept me going. The reason I have a hard time accepting the allergy explanation is that when this stuff cleared up for a couple of weeks, I had NO symtoms. Plus they went away overnight and I had NO symptoms till a couple of days ago. Doesn't make sense if it's an allergy. I was still using CPAP with humidification just like I always have.

Sooooo, I have a # of concerns. Have had some really good feedback and info on SG. Am now waiting (impatiently) to get in to see the doctor. My family doctor is sympathetic, knows me for over 35 years now, and hasn't got a clue what to do. He's great and I trust him, but there seems to be a monumental lack of universal basic education with a lot of doctors. My cardiologist didn't say much except he looked and acted pretty concerned when I told him about the diagnosis. He's a GREAT doc, and I trust both of them implicitly.

Jeez, I need to stop this. Whenever I get writing about just my experiences, let alone what others on here are going through, it just boggles my mind and I can't shut up! I should have sent this in installments, Melinda. Sorry.......

Susan McCord


Melinda Hertel said:

Why do you think your pressure is too low? And why the heck have you not been to a sleep specialist yet? It sounds like things have been done a little backwards in your case! One thought would be to try a full face mask--one that covers your mouth too so that you can breathe through your mouth when you are congested. Does the nose running and congestion occur back and forth throughout the day? Or are you only congested at night and runny during the day?

You can develop allergies at any time in your life. It may just be that your nasal flow was blocked before CPAP and not much got in. Now that you are opened up, your nasal/sinus passages are reacting to having never been touched. How long have you been using CPAP?

If I were to guess, the physician I work with would have you try Mucinex to keep mucous thin and reduce congestion. Sometimes he recommends prescription nasal sprays (they have steroid solutions in them) to use just at bed time. I just really think you need to be evaluated by a doctor--a sleep doc and an ENT(ears,nose,throat) if symptoms continue.

• ▶ Reply

Permalink Reply by susan mccord on August 14, 2009 at 2:35pm

Melinda--bet I put you into a coma with that message! LOL

Don't worry, I won't give up. Sometimes I just have to say that out loud (on here). Then I can start getting logical and non-stupid again!!!

Thanks for your support. It means a lot....

Susan McCord :-)

susan mccord said:

Melinda, I didn't come to SG the end of August, it was toward the end of JULY.

Melinda Hertel said:

Why do you think your pressure is too low? And why the heck have you not been to a sleep specialist yet? It sounds like things have been done a little backwards in your case! One thought would be to try a full face mask--one that covers your mouth too so that you can breathe through your mouth when you are congested. Does the nose running and congestion occur back and forth throughout the day? Or are you only congested at night and runny during the day?

You can develop allergies at any time in your life. It may just be that your nasal flow was blocked before CPAP and not much got in. Now that you are opened up, your nasal/sinus passages are reacting to having never been touched. How long have you been using CPAP?

If I were to guess, the physician I work with would have you try Mucinex to keep mucous thin and reduce congestion. Sometimes he recommends prescription nasal sprays (they have steroid solutions in them) to use just at bed time. I just really think you need to be evaluated by a doctor--a sleep doc and an ENT(ears,nose,throat) if symptoms continue.

• ▶ Reply

Permalink Reply by susan mccord on August 14, 2009 at 2:56pm

Melinda, I AM gonna try Mucinex--that's a really good idea. Thanks! I'll keep you posted. If that helps me cope better, I'm gonna put you in my will!!!!!!!!!

-Susan McCord :-)

susan mccord said:

Melinda, I didn't come to SG the end of August, it was toward the end of JULY.

Melinda Hertel said:

Why do you think your pressure is too low? And why the heck have you not been to a sleep specialist yet? It sounds like things have been done a little backwards in your case! One thought would be to try a full face mask--one that covers your mouth too so that you can breathe through your mouth when you are congested. Does the nose running and congestion occur back and forth throughout the day? Or are you only congested at night and runny during the day?

You can develop allergies at any time in your life. It may just be that your nasal flow was blocked before CPAP and not much got in. Now that you are opened up, your nasal/sinus passages are reacting to having never been touched. How long have you been using CPAP?

If I were to guess, the physician I work with would have you try Mucinex to keep mucous thin and reduce congestion. Sometimes he recommends prescription nasal sprays (they have steroid solutions in them) to use just at bed time. I just really think you need to be evaluated by a doctor--a sleep doc and an ENT(ears,nose,throat) if symptoms continue.

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