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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.......)
Have you ever tried ear candling also called ear coning? You can buy the candles in vitamin stores and on the internet.Susan,
I don't wonder that you ain't got any of those cutsie little smiley faces to put on your post. It sounds miserable. So far, I haven't had any problem with sinus infection, knock wood. BTW, I followed your suggestion and went full face mask, instead of Mirage Liberty w/ nose pillows. Feels much better and I don't wake up with air blowing snot out my nose. One thing I've gained a better appreciation for, in this discussion, is cleaning my equipment...especially humidifier reservoir. Hope the infection clears up for you.
Best regards,
Steve Benedict
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.......)
Susan,
I don't wonder that you ain't got any of those cutsie little smiley faces to put on your post. It sounds miserable. So far, I haven't had any problem with sinus infection, knock wood. BTW, I followed your suggestion and went full face mask, instead of Mirage Liberty w/ nose pillows. Feels much better and I don't wake up with air blowing snot out my nose. One thing I've gained a better appreciation for, in this discussion, is cleaning my equipment...especially humidifier reservoir. Hope the infection clears up for you.
Best regards,
Steve Benedict
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.......)
OK. My first reply to a very lively discussion, but you folks are a diverse and educated crowd.
Here is my spin after twenty years on CPAP. Susan, you WILL notice side effects of CPAP, even with the humifier. I regularly use VICKS, and that means NIGHTLY (after I kiss Deb Good Night, as she hates Vicks [opt.]). The vapor action helps to keep my sinuses clear. This or another Eucalyptus products (or perhaps many others) has become a ritual for me.
I know that we are supposed to keep our equipment clean, but I RARELY clean my stuff: only when it gets a grime film, and Deb fills my humidifier reservoir and she is obsessive/compulsive on cleaning. I use the well water on the farm and have used distilled water only in foreign travels, and even then think it's perhaps a waste, but a good safeguard. The farm water is untreated and I like that. It's 147 feet deep and I've tested it and it's pure.
I DO clean the foam filters every week during the summer when we are at the farm, as there is just so much pollen, and it's even visible, the detritus sucked in! I just use Dawn or Softsoap, soak briefly, rinse in hot or cold, wring out with a washcloth and set aside to dry. Germs cause colds (I just learned over Christmas that there are 151 different viruses which can cause what we see as the "Common Cold" (AARP), so the risk is always there.
Both Deb and I have gone through periods of allergies with MULTIPLE meds and inhalers plus sinus infections for the past thirty-five years. As with most folks, allergies thankfully do seem to come and go. Deb currently has sinus troubles for three years now and I am symptom free!
OK. I believe in accupunture and we use accupressure (plus do yoga) nightly to ease aches and pains and accupressure is INCREDIBLY good for relieving SINUS PRESSURE. I leared accupressure in the early '70's and you can find good books everywhere! It's just standard Chinese and universal medicine/self treatment. PLEASE TRY SINUS MASSAGE and POINT PRESSURE for relief. It really DOES work, and Deb was not a believer until I used it for her sinuses and now her back. I just zoom in naturally and you can clear your head, relieve headaches, etc. all in five minutes. NOTE: Buy book on ACCUPRESSURE or visit your local library.
Indian Medicine uses "Nati", which is really NASTY! It's a salt water daily nasal douche! Some of the members in our Yoga group do this, but most folks only try it once or in my case three or four times! If you want a horrible, buring sensation throughout your head and nasal cavities, try Nati. I guess that it's a cultural thing, and I've spent two summers in India (many years ago) and they have many good things, but I would SKIP the Nati! Good Luck to you! Duane in North Dakota
I suffer badly from the atmospheric pollution caused by the fuel reduction burning of our forests. To combat this problem I add a filter to my air hose. This filter filters out all particles of 2.5 microns and above which includes most viruses. This filter is used in hospitals. I get mine from Fisher and Paykel. It's product number is RT019. It costs me $64 Australian and $19.25 for delivery making an after tax total of $85.18 or $78.16 US. Depending on the air quality, under normal circumstances a filter lasts me about a week but, if the smoke is bad, as little as one night.
If you are prone to sinus infection I would seek out this product.
Does anyone else use these filters.
Gordon Osmond said:I suffer badly from the atmospheric pollution caused by the fuel reduction burning of our forests. To combat this problem I add a filter to my air hose. This filter filters out all particles of 2.5 microns and above which includes most viruses. This filter is used in hospitals. I get mine from Fisher and Paykel. It's product number is RT019. It costs me $64 Australian and $19.25 for delivery making an after tax total of $85.18 or $78.16 US. Depending on the air quality, under normal circumstances a filter lasts me about a week but, if the smoke is bad, as little as one night.
If you are prone to sinus infection I would seek out this product.
Does anyone else use these filters.
I'm not sure whether (in a quick glance at this discussion) anyone has mentioned the use of a neti pot. My sleep doc told me to expect the occasional sinus infection and that cleaning the equipment is the best way to minimize them. She also told me, though, that I should use a neti pot to help avoid and/or reduce the severity of an infection. Do you know about neti pots? They look sort of like Aladdin's lamps -- you can get them at drug stores these days, or online, or a place like Whole Foods. You put a bit of salt in them, add lukewarm water, and then insert first into one nostril and then the other, pouring the water through your sinuses. It really helps a great deal with sinus infections. I have a minor one now myself, and I'm sure it's from the PAP ... and I haven't been using my neti pot for awhile. I was just about to use it tonight before bed (and clean all my supplies too). See if that works for you. It's a weird feeling, but it does help a lot.
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.
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