Help needed - feel worse using CPAP - long story
Help needed - feel worse using CPAP - long story
I was diagnosed in December 2010 with OSA. My AHI was 33+. I never felt any better using the CPAP machine, was always congested, had chronic sinusitis, fibromyalgia, migraines, etc. In February 2013, I had sinus surgery and feel wonderful! A sleep study in May showed my AHI had dropped to 25. Sleeping on my side it is 3.5 and on my back it is 28. Good news! At least I'm now in the moderate range. I've also been tested for allergies and I don't have any.
Since my surgery, I have very little pain from the fibro, few migraines and I can breathe through my nose! I feel great as long as I don't use my CPAP machine. I've tried several times to use it and each time I've gotten sick. After using it for 1-3 days, I'm severely congested, sneezing all day, look like I've been crying for days and have zero energy at all. The longer I use it, the worse I feel. My doctor diagnosed me with emphysema because I was so sick! Fortunately he was wrong. I have seen a pulmonologist and had all the tests. He said he was the last doctor I needed to see. Great news, except that I still haven't been able to use my machine without getting sick. It is so bad that when I try again, I have to make sure that I don't have any plans for a few days because I know I will be sick or at the very least have no energy to do anything.
I use a REMstar Plus C-Flex machine. My pressure is set at 11.0cmH20. Previous to the sinus surgery, the setting was 10.00cmH2O. I have tried 0 humidity up to the 5 setting. It doesn't seem to matter what the humidity is set at. I wake up congested and my nose is freezing. I also have a cover for the hose. I suffer from dry eyes, dry mouth and I'm very sensitive to leaks. I use Azelastine, Flonase and Triamcinolone HCl twice a day, use Ayr gel in my nose at night and do 2-3 nasal rinses daily. I wake up if there is even a tiny leak. I couldn't even tell you how many different masks/styles I've tried. My husband also uses a CPAP machine and when his mask leaks, I wake up. (I can hear it in the living room and he doesn't wake up! I know that's a WHOLE other issue. )
I'm tired of being told I'm going to have a heart attack, stroke, etc. No one seems to have any suggestions that have helped. My sleep disorder doctor said to keep trying and would recommend an oral appliance as a last resort. She felt it would be better than nothing. My sleep apnea events occur during the REM cycle.
I am at my wit's end. The DME and insurance company are no help either. The only thing I haven't tried is heated tubing. Insurance doesn't pay for it and I'm leery of trying it since nothing else has made a difference. I've searched the posts on this site and have not found any posts that are similar to my situation.
Any suggestions that I could try? I really want to make this work, but I can't afford to be sick all the time.
Since my surgery, I have very little pain from the fibro, few migraines and I can breathe through my nose! I feel great as long as I don't use my CPAP machine. I've tried several times to use it and each time I've gotten sick. After using it for 1-3 days, I'm severely congested, sneezing all day, look like I've been crying for days and have zero energy at all. The longer I use it, the worse I feel. My doctor diagnosed me with emphysema because I was so sick! Fortunately he was wrong. I have seen a pulmonologist and had all the tests. He said he was the last doctor I needed to see. Great news, except that I still haven't been able to use my machine without getting sick. It is so bad that when I try again, I have to make sure that I don't have any plans for a few days because I know I will be sick or at the very least have no energy to do anything.
I use a REMstar Plus C-Flex machine. My pressure is set at 11.0cmH20. Previous to the sinus surgery, the setting was 10.00cmH2O. I have tried 0 humidity up to the 5 setting. It doesn't seem to matter what the humidity is set at. I wake up congested and my nose is freezing. I also have a cover for the hose. I suffer from dry eyes, dry mouth and I'm very sensitive to leaks. I use Azelastine, Flonase and Triamcinolone HCl twice a day, use Ayr gel in my nose at night and do 2-3 nasal rinses daily. I wake up if there is even a tiny leak. I couldn't even tell you how many different masks/styles I've tried. My husband also uses a CPAP machine and when his mask leaks, I wake up. (I can hear it in the living room and he doesn't wake up! I know that's a WHOLE other issue. )
I'm tired of being told I'm going to have a heart attack, stroke, etc. No one seems to have any suggestions that have helped. My sleep disorder doctor said to keep trying and would recommend an oral appliance as a last resort. She felt it would be better than nothing. My sleep apnea events occur during the REM cycle.
I am at my wit's end. The DME and insurance company are no help either. The only thing I haven't tried is heated tubing. Insurance doesn't pay for it and I'm leery of trying it since nothing else has made a difference. I've searched the posts on this site and have not found any posts that are similar to my situation.
Any suggestions that I could try? I really want to make this work, but I can't afford to be sick all the time.
_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.
Re: Help needed - feel worse using CPAP - long story
Gee, the only thing I can think of is something is dirty. Are you changing/cleaning the filter?
What kind of cleaner are you using for the mask hose and humidifier?
Maybe it is time to take your machine to get it serviced and cleaned.
What kind of cleaner are you using for the mask hose and humidifier?
Maybe it is time to take your machine to get it serviced and cleaned.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Humidifier: DreamStation Heated Humidifier |
Additional Comments: Settings are IPap 23 EPap 19 |
Re: Help needed - feel worse using CPAP - long story
"Are you changing/cleaning the filter?I What kind of cleaner are you using for the mask hose and humidifier?
Maybe it is time to take your machine to get serviced and cleaned."
The filter is changed frequently. I don't let it get really dirty. I clean the hose with Dove dish soap, the mask with the same or the CPAP wipes. The humidifier is cleaned once a week with vinegar and water. My machine has been checked by the sleep tech at my doctor's office and the DME. They've asked me all the same questions and been satisfied with what I'm doing.
Thanks for trying to help though!
Has anyone used a filter inside their mask? I saw them online the other day but the reviews weren't too positive.
Maybe it is time to take your machine to get serviced and cleaned."
The filter is changed frequently. I don't let it get really dirty. I clean the hose with Dove dish soap, the mask with the same or the CPAP wipes. The humidifier is cleaned once a week with vinegar and water. My machine has been checked by the sleep tech at my doctor's office and the DME. They've asked me all the same questions and been satisfied with what I'm doing.
Thanks for trying to help though!
Has anyone used a filter inside their mask? I saw them online the other day but the reviews weren't too positive.
_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.
Re: Help needed - feel worse using CPAP - long story
This is a longshot, but I'm a big fan of NOT using chemicals. Take responsibility for what you are putting into your body. The average person consumes 700+ chemicals a day. The reason you might be sick is from a compromised immune system. The flonaze and other things could be making things worse. All the medical profession wants to do is give people pills and all people want to do is ask the medical profession for pills lol. My apologies if this sounds a bit harsh. I know what you are going through! I mean this with the greatest of sincerity, TAKE responsibility for what passes your lips and what you are consuming. Consider taking a break or seriously reduce ALL sugar and white flower intake. Sugar is a killer to the immune system. A gluten-free diet could change your situation but you have to really make the effort. The only real control people have when they are ill for a long time, is to closely monitor what they put in their body. Avoid all processed foods. Yes all. No more fancy, printed packages or boxes in the frozen food section. No more fast food. Get some exercise, even if it's walking for 15 or 20 minutes a day. Quit all soda. One can of coca cola has 16 teaspoons of sugar! Talk to your doctor and get off all unnecessary pills! People think taking a pill is going to help their problems. Most pills are toxic to the body. The side effects of what people are taking are sometimes worse than the problem lol. Don't think DIET. Think NUTRITION. Go see a dietitian or professional to help get things started if you don't have the willpower. Be cautious and refuse pills or tons of "vitamins." Everyone is pushing this stuff to make a dollar and the ingredients are not healthy for the body. Eat whole foods and start juicing fresh dark leafy, organic (if possible) vegetables every day. Focus on nutrition and unless you have a serious medical condition should see results and start feeling better with commitment and dedication in a short period of time. Consider getting off pills. They pose a health risk and could be the root of the problem. Look into cayenne pepper for an organic and successful reduction of migraines. There are healthy alternatives the pharmaceutical profession would not like people learning about! Sorry, not familiar with your equipment, but consider a heated hose if available. Getting the machine serviced and everything else cleaned is a good idea. There are also optional filters to add to the hoses. Stop smoking and all alcohol consumption. Sometimes good health requires a strict intake of nutritious foods and reduction of toxins and chemicals.
Last edited by Tech Guy on Tue Oct 08, 2013 12:01 am, edited 1 time in total.
PR System One & Humidifier
Re: Help needed - feel worse using CPAP - long story
Hi bobbi4272,bobbi4272 wrote:I was diagnosed in December 2010 with OSA. My AHI was 33+. I never felt any better using the CPAP machine, was always congested, had chronic sinusitis, fibromyalgia, migraines, etc. In February 2013, I had sinus surgery and feel wonderful! A sleep study in May showed my AHI had dropped to 25. Sleeping on my side it is 3.5 and on my back it is 28. Good news! At least I'm now in the moderate range. I've also been tested for allergies and I don't have any.
Since my surgery, I have very little pain from the fibro, few migraines and I can breathe through my nose! I feel great as long as I don't use my CPAP machine. I've tried several times to use it and each time I've gotten sick. After using it for 1-3 days, I'm severely congested, sneezing all day, look like I've been crying for days and have zero energy at all. The longer I use it, the worse I feel. My doctor diagnosed me with emphysema because I was so sick! Fortunately he was wrong. I have seen a pulmonologist and had all the tests. He said he was the last doctor I needed to see. Great news, except that I still haven't been able to use my machine without getting sick. It is so bad that when I try again, I have to make sure that I don't have any plans for a few days because I know I will be sick or at the very least have no energy to do anything.
I use a REMstar Plus C-Flex machine. My pressure is set at 11.0cmH20. Previous to the sinus surgery, the setting was 10.00cmH2O. I have tried 0 humidity up to the 5 setting. It doesn't seem to matter what the humidity is set at. I wake up congested and my nose is freezing. I also have a cover for the hose. I suffer from dry eyes, dry mouth and I'm very sensitive to leaks. I use Azelastine, Flonase and Triamcinolone HCl twice a day, use Ayr gel in my nose at night and do 2-3 nasal rinses daily. I wake up if there is even a tiny leak. I couldn't even tell you how many different masks/styles I've tried. My husband also uses a CPAP machine and when his mask leaks, I wake up. (I can hear it in the living room and he doesn't wake up! I know that's a WHOLE other issue. )
I'm tired of being told I'm going to have a heart attack, stroke, etc. No one seems to have any suggestions that have helped. My sleep disorder doctor said to keep trying and would recommend an oral appliance as a last resort. She felt it would be better than nothing. My sleep apnea events occur during the REM cycle.
I am at my wit's end. The DME and insurance company are no help either. The only thing I haven't tried is heated tubing. Insurance doesn't pay for it and I'm leery of trying it since nothing else has made a difference. I've searched the posts on this site and have not found any posts that are similar to my situation.
Any suggestions that I could try? I really want to make this work, but I can't afford to be sick all the time.
Since your AHI is 3.5 sleeping on your side, I am curious as to what your sleep study shows regarding how many hours you slept that way. If it was significant since that means you probably hit REM, this might be a possible option.
And with an AHI of 25 and good nasal potency due your surgery, actually a dental appliance might be more than a last resort. Check out this study which shows that for your AHI, the chances of success (getting AHI to 5 or below) for an adjustable appliance (TAP), was 60%.
https://advancedbrainmonitoring.app.box ... 7pjn8s11y4
I wish I knew what suggestions to make regarding your pap therapy as it sounds like you have done everything that you should. That is why I was offering alternative options.
49er
_________________
Mask: SleepWeaver Elan™ Soft Cloth Nasal CPAP Mask - Starter Kit |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Use SleepyHead |
Re: Help needed - feel worse using CPAP - long story
Turn down (or off) your humidifier - it congests many people and probably is the source of half of your trouble! You don't need it as 'therapy' - it's a convenience for people who feel they need it living in dry climates, etc.
Re: Help needed - feel worse using CPAP - long story
Maybe you should address the sleeping on your back issue - try putting on a t-shirt with a pocket backwards and tuck a tennis ball into the pocket - this might keep you off your back.
_________________
Mask: Mirage Activa™ LT Nasal CPAP Mask with Headgear |
Additional Comments: pressure 10-12 |
Re: Help needed - feel worse using CPAP - long story
It's a shame that your stuck with a brick. There's no way to tell what's really going on in terms of leaks or residual events, both of which could be at least partially responsible for why you're feeling worse, not better.bobbi4272 wrote: I use a REMstar Plus C-Flex machine.
Why was the pressure increased? Just because you reported "feeling worse" or because of a follow-up sleep study or what??? Also, did you feel even marginally better at 10cm than you do now that you are using 11cm? In other words, did the pressure increase add to the problems?My pressure is set at 11.0cmH20. Previous to the sinus surgery, the setting was 10.00cmH2O.
For the freezing nose problem: I wonder if a heated hose would help. Unfortunately if you've had this machine since 2010, it's the Series 50 System One that does NOT have an integrated heated hose option. There are standalone heated hoses, however. And maybe that might help. You've also said that you've tried a whole bunch of different mask styles, but have you ever tried a nasal pillows mask? The air is blown directly into the nostrils with a pillows-style mask and for some people that helps with the whole "frozen nose" problem. When the pillows are properly placed, the air flow should NOT directly hit any part of the inside of the nose. If it does, the pillows are at the wrong angle.I have tried 0 humidity up to the 5 setting. It doesn't seem to matter what the humidity is set at. I wake up congested and my nose is freezing. I also have a cover for the hose. I suffer from dry eyes, dry mouth and I'm very sensitive to leaks. .... I wake up if there is even a tiny leak. I couldn't even tell you how many different masks/styles I've tried. My husband also uses a CPAP machine and when his mask leaks, I wake up. (I can hear it in the living room and he doesn't wake up! I know that's a WHOLE other issue. )
For dry eyes, dry mouth, and sensitivity to leaks problems: I suspect that you are leaking more than you suspect (and there's no way to tell with that Plus). I suspect that you ARE asleep for quite some time with the leak and once it crosses a certain threshold---either in time or in size, that's when you wake up and you think you just started leaking. So what to do?
For the dry eyes: You need to locate where the problem is coming from. Most likely the dry eyes are due to either the exhaust flow bouncing off the covers and back into your eyes OR mask leaks around the top of the mask if you're using a nasal mask or a FFM. In either of these cases, an eyemask worn with/under your CPAP mask could help quite a bit. But there's also a small chance that air is getting into your eyes via your tear ducts. And in that case you need to report the problem to your sleep doc.
For the dry mouth: That is usually the result of mouth breathing (regardless of whether you are using a FFM or not). The more air being blown through the mouth, the drier the mouth becomes. (And while a FFM allows you to breathe through your mouth without loosing therapy pressure, it does not automatically prevent dry mouth problems.) Your signature shows you are currently using a Swift FX Nano nasal mask; so my guess is that you are opening your mouth during your sleep. Or perhaps you are managing to keep the lips closed, but the tongue drops down from the roof of the mouth and that is allowing air to enter into your oral cavity. If you are open to the idea of using a chin strap, that might be worth trying.
For the overall sensitivity to leaks problems: Does the exhaust flow from the mask bother you? In other words, is part of your sensitivity being caused by the exhaust flow from your mask hitting the covers and bouncing back into your face or onto your arms or chest? If that's a potential problem, then hose management may be the answer. Have you considered hanging your hose? Have you considered alternate hose positions for your hose? Another thing about that exhaust flow is that it can be LOUD if its hitting a bed pillow or the covers. So is there any chance that what you are HEARING from hubby's mask is his EXHAUST flow rather than his mask springing a leak? In that case, hubby may also need to work on some hose management. Maybe his and her hose hangers are worth trying.
Perhaps you are trying too hard here. If your nasal problem is nonallergic rhinitis, then as counter intuitive as it sounds, the "treatment" may very well be aggravating the problem. Your nose may be happier with LESS of this regime than you think it will be. (It may take some time, however, for the nose to recover from all this "treatment gone wrong". Two sources of information about how to deal with congestion problems while using CPAP are:I use Azelastine, Flonase and Triamcinolone HCl twice a day, use Ayr gel in my nose at night and do 2-3 nasal rinses daily.
Nasal Breathing Video Series from Dr. Barry Krakow's web pages
Unstuff Your Stuffy Nose from Dr. Steven Y. Park's web pages
Both of them do address the issue of nonallergic rhinitis by the way.
The heated hose WILL fix the "freezing nose" problem. So it's worth trying. Of course you may find that using a heated hose with a high temperature setting and a high humidity setting will make you feel like you're sleeping in a swamp. But you can always experiment with the temp and humidity settings until you find a pair that keep the nose from freezing (temp setting) and keep the "swamp" feeling minimized (humidity setting)The only thing I haven't tried is heated tubing. Insurance doesn't pay for it and I'm leery of trying it since nothing else has made a difference.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
Re: Help needed - feel worse using CPAP - long story
A word about the freezing nose...and heated hose.
The PR System One 50 series default humidification mode is known to use less heat since it uses room sensors in the machine.
It also uses less water.
You might be able to change the mode to Classic mode humidification....it will provide more heat...it also uses more water and chances of rain out increase. Some of the 50 series machines that first came out in early 2010 didn't have Classic mode available though. Classic mode was added sometime in 2010. You could go to the clinical menu and see if you can turn off the "new humidification system" and if you can then you have Classic mode available. Something to try if you can. I had the same problem with my 50 series machine. I called it ice cube nose. My nose got so cold it woke me up. Switching to Classic Mode helped and I used a hose cozy to help reduce the rain out and also helps insulate the air so it stays warmer.
There is a stand alone heated hose...I used one so that I didn't have to use a hose cozy but the one I used...the Hybernite 2300...says that you need to be able to use Classic mode with it. It isn't advisable to use that heated hose unless you have Classic mode available on your machine. You can find them on EBay or cpap.com sells them but you need a RX on file.
Do you know how to get to your clinical menu so you can see if you have Classic mode available? If not this link tells you how and there's a video at the bottom
http://www.apneaboard.com/pr-system-one ... structions
Do you have any money available where you could purchase a machine that offers full data so you can monitor your therapy?
STLMark has a great machine available for $400..the model 560 and it has the option of adding the Respironics heated hose (additional $75)...I have it now and it is so worth it.
The PR System One 50 series default humidification mode is known to use less heat since it uses room sensors in the machine.
It also uses less water.
You might be able to change the mode to Classic mode humidification....it will provide more heat...it also uses more water and chances of rain out increase. Some of the 50 series machines that first came out in early 2010 didn't have Classic mode available though. Classic mode was added sometime in 2010. You could go to the clinical menu and see if you can turn off the "new humidification system" and if you can then you have Classic mode available. Something to try if you can. I had the same problem with my 50 series machine. I called it ice cube nose. My nose got so cold it woke me up. Switching to Classic Mode helped and I used a hose cozy to help reduce the rain out and also helps insulate the air so it stays warmer.
There is a stand alone heated hose...I used one so that I didn't have to use a hose cozy but the one I used...the Hybernite 2300...says that you need to be able to use Classic mode with it. It isn't advisable to use that heated hose unless you have Classic mode available on your machine. You can find them on EBay or cpap.com sells them but you need a RX on file.
Do you know how to get to your clinical menu so you can see if you have Classic mode available? If not this link tells you how and there's a video at the bottom
http://www.apneaboard.com/pr-system-one ... structions
Do you have any money available where you could purchase a machine that offers full data so you can monitor your therapy?
STLMark has a great machine available for $400..the model 560 and it has the option of adding the Respironics heated hose (additional $75)...I have it now and it is so worth it.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
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Re: Help needed - feel worse using CPAP - long story
Less chemicals? I think you may actually need more. Specifically a tranquilizer. That may be your best shot at this point. You seem to be bothered more from waking up due to sensory 'stimuli' like leak noises and a chilly nose more than snoring or waking up gasping. You really should get a prescription for something to knock you out, at least for the start of your therapy, so you can start to get better sleep and much needed rest. You need to get over this hurdle, first.
Re getting sick, that could simply be a coincidence. If you are drying out your nose and mouth, try raising the humidity setting (even try the manual humidity setting which raises the moisture higher than the auto humidity setting). Also try biotene rinse for your mouth and saline for your nose. Do you have the new Nano or the plain FX pillow mask?? If you use a nasal pillow mask that can definitely increase nasal/throat dryness. Perhaps if you have the Nano, it may be more leak prone for you at that pressure. You would be wise to try a good FF mask or even a good 'standard' nasal mask with better leak ratings. Finally, all the sinus/allergy drugs you take cause dryness and nasal irritation. Those alone could be causing or contributing to a good deal of your problems.
Re getting sick, that could simply be a coincidence. If you are drying out your nose and mouth, try raising the humidity setting (even try the manual humidity setting which raises the moisture higher than the auto humidity setting). Also try biotene rinse for your mouth and saline for your nose. Do you have the new Nano or the plain FX pillow mask?? If you use a nasal pillow mask that can definitely increase nasal/throat dryness. Perhaps if you have the Nano, it may be more leak prone for you at that pressure. You would be wise to try a good FF mask or even a good 'standard' nasal mask with better leak ratings. Finally, all the sinus/allergy drugs you take cause dryness and nasal irritation. Those alone could be causing or contributing to a good deal of your problems.
Re: Help needed - feel worse using CPAP - long story
My doctor said that I have a small throat opening and the soft palate is the problem. I guess I don't have a big mouth, just loud! I am 58 and my BMI is high. She said the OA would probably help a little but not enough. During the therapeutic study, the tech noted I slept 56 minutes with 0 minutes of REM sleep. The pressure was titrated at 11cmH2O with 0 respiratory events at 11 pressure with AHI of 11. Oxygen saturation at that pressure was 94%. The info I have doesn't indicate if I was supine or non-supine.49er wrote:
Since your AHI is 3.5 sleeping on your side, I am curious as to what your sleep study shows regarding how many hours you slept that way. If it was significant since that means you probably hit REM, this might be a possible option.
And with an AHI of 25 and good nasal potency due your surgery, actually a dental appliance might be more than a last resort. Check out this study which shows that for your AHI, the chances of success (getting AHI to 5 or below) for an adjustable appliance (TAP), was 60%.
https://advancedbrainmonitoring.app.box ... 7pjn8s11y4
I wish I knew what suggestions to make regarding your pap therapy as it sounds like you have done everything that you should. That is why I was offering alternative options.
49er
I don't know how they can tell if its helping if I never got to the REM cycle during the therapeutic study and the diagnostic study indicated that most of the events I had was during REM.
_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.
Re: Help needed - feel worse using CPAP - long story
Julie - thanks for the suggestion. I have tried using my machine without the humidifier or set very low. It doesn't seem to matter what the humidity level is set at. It seems that the main problem is the air blowing into my nose.Julie wrote:Turn down (or off) your humidifier - it congests many people and probably is the source of half of your trouble! You don't need it as 'therapy' - it's a convenience for people who feel they need it living in dry climates, etc.
_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.
Re: Help needed - feel worse using CPAP - long story
I really try to sleep on my side. I use a body pillow between my knees and switch sides often during the night. I've had a rotator cuff repair and have arthritis on the other shoulder. The pain wakes me up so I move around. I haven't tried the tennis ball yet because of the pain. I don't get enough sleep during the night if I'm on my side because of the pain. I hate taking anything to knock me out because I'm so groggy the next day. The doctor also said it would make my OSA worse.herefishy wrote:Maybe you should address the sleeping on your back issue - try putting on a t-shirt with a pocket backwards and tuck a tennis ball into the pocket - this might keep you off your back.
_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.
Re: Help needed - feel worse using CPAP - long story
robysue wrote:It's a shame that your stuck with a brick. There's no way to tell what's really going on in terms of leaks or residual events, both of which could be at least partially responsible for why you're feeling worse, not better.bobbi4272 wrote: I use a REMstar Plus C-Flex machine.
Why was the pressure increased? Just because you reported "feeling worse" or because of a follow-up sleep study or what??? Also, did you feel even marginally better at 10cm than you do now that you are using 11cm? In other words, did the pressure increase add to the problems?My pressure is set at 11.0cmH20. Previous to the sinus surgery, the setting was 10.00cmH2O.
I had a follow up study done after my sinus surgery and that was when the pressure was increased. I didn't feel any better or worse due to the increase. I used my CPAP machine at the 10cm setting and experienced the same problems.
For the freezing nose problem: I wonder if a heated hose would help. Unfortunately if you've had this machine since 2010, it's the Series 50 System One that does NOT have an integrated heated hose option. There are standalone heated hoses, however. And maybe that might help. You've also said that you've tried a whole bunch of different mask styles, but have you ever tried a nasal pillows mask? The air is blown directly into the nostrils with a pillows-style mask and for some people that helps with the whole "frozen nose" problem. When the pillows are properly placed, the air flow should NOT directly hit any part of the inside of the nose. If it does, the pillows are at the wrong angle.I have tried 0 humidity up to the 5 setting. It doesn't seem to matter what the humidity is set at. I wake up congested and my nose is freezing. I also have a cover for the hose. I suffer from dry eyes, dry mouth and I'm very sensitive to leaks. .... I wake up if there is even a tiny leak. I couldn't even tell you how many different masks/styles I've tried. My husband also uses a CPAP machine and when his mask leaks, I wake up. (I can hear it in the living room and he doesn't wake up! I know that's a WHOLE other issue. )
I seem to have more sneezing and congestion when using the nasal pillows. It seems that it concentrates the air flow more than a nasal mask or face mask. I have much less leakage from the nasal pillow masks and the nasal masks. With a full face mask the leaking is awful! I tried a couple of them when I first got my machine. Apparently the shape of my face doesn't make a full face mask a good fit. The freezing nose was a problem with both the pillows and nasal masks.
I am going to the DME again tomorrow. I will ask again about the heated tubing option. Each time I've gone, I've gotten conflicting answers. One tech will say it helps, another will say it won't. I've also gotten conflicting answers as to whether my machine will even work with one or if I need an adaptor. I don't know if the heated tubing would address the sneezing and congestion issue.
For dry eyes, dry mouth, and sensitivity to leaks problems: I suspect that you are leaking more than you suspect (and there's no way to tell with that Plus). I suspect that you ARE asleep for quite some time with the leak and once it crosses a certain threshold---either in time or in size, when you wake up and you think you just started leaking. So what to do?
I wish I had a better machine! I feel it would really help me identify what is causing all my problems so I could start addressing them. If I felt even a tiny bit better using my machine, I might consider paying for a better one. Right now I'm afraid to even use it because I feel so lousy when I do.
I have a really difficult time getting to sleep because of the leaks. They can be really minor and it drives me crazy. I'm sure that once I finally do manage to get to sleep there is a lot of leakage with some of the masks and that is why I'm suffering from the dry eye problem. Even using a chin strap doesn't eliminate the dry mouth problem. Once the congestion starts I end up breathing through my mouth. With the chin strap it feels like I can't get enough air through my nose.
For the dry eyes: You need to locate where the problem is coming from. Most likely the dry eyes are due to either the exhaust flow bouncing off the covers and back into your eyes OR mask leaks around the top of the mask if you're using a nasal mask or a FFM. In either of these cases, an eyemask worn with/under your CPAP mask could help quite a bit. But there's also a small chance that air is getting into your eyes via your tear ducts. And in that case you need to report the problem to your sleep doc.
The leaking seems to come mainly from around the top of the mask. The exhaust flow doesn't bother me much. If it does, I just move the hose and am fine. The noise from the exhaust doesn't bother me either. The last mask I've tried is the new Nano nasal mask and it is very comfortable. It fit well and I was able to reduce the leaks to the point where it didn't wake me up much at all. The leaks are the least annoying part of all this. I just can't deal with feeling awful from the sneezing and congestion after using my machine.
I haven't tried using a eye mask recently. I will try it again. My eyes tend to be dry anyway. I use drops that help most of the time.
For the dry mouth: That is usually the result of mouth breathing (regardless of whether you are using a FFM or not). The more air being blown through the mouth, the drier the mouth becomes. (And while a FFM allows you to breathe through your mouth without loosing therapy pressure, it does not automatically prevent dry mouth problems.) Your signature shows you are currently using a Swift FX Nano nasal mask; so my guess is that you are opening your mouth during your sleep. Or perhaps you are managing to keep the lips closed, but the tongue drops down from the roof of the mouth and that is allowing air to enter into your oral cavity. If you are open to the idea of using a chin strap, that might be worth trying.
[So is there any chance that what you are HEARING from hubby's mask is his EXHAUST flow rather than his mask springing a leak? In that case, hubby may also need to work on some hose management. Maybe his and her hose hangers are worth trying.
The exhaust flow from hubby's mask sometimes bugs me because I feel it blowing on me. It is pretty quiet. When his mask leaks it makes an awful noise that I can't describe. He doesn't wake up when it happens. If I'm still awake in the livingroom, I can hear it! When I'm next to him I want to administer some "Pillow Therapy".
Perhaps you are trying too hard here. If your nasal problem is nonallergic rhinitis, then as counter intuitive as it sounds, the "treatment" may very well be aggravating the problem. Your nose may be happier with LESS of this regime than you think it will be. (It may take some time, however, for the nose to recover from all this "treatment gone wrong". Two sources of information about how to deal with congestion problems while using CPAP are:I use Azelastine, Flonase and Triamcinolone HCl twice a day, use Ayr gel in my nose at night and do 2-3 nasal rinses daily.
Nasal Breathing Video Series from Dr. Barry Krakow's web pages
Unstuff Your Stuffy Nose from Dr. Steven Y. Park's web pages
Both of them do address the issue of nonallergic rhinitis by the way.
The info from these videos was great. I will start experimenting with some of the suggestions. It doesn't make sense to me that I feel fine during the day. Its only when I have wind going up my nose that the problems start.
The heated hose WILL fix the "freezing nose" problem. So it's worth trying. Of course you may find that using a heated hose with a high temperature setting and a high humidity setting will make you feel like you're sleeping in a swamp. But you can always experiment with the temp and humidity settings until you find a pair that keep the nose from freezing (temp setting) and keep the "swamp" feeling minimized (humidity setting)The only thing I haven't tried is heated tubing. Insurance doesn't pay for it and I'm leery of trying it since nothing else has made a difference.
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Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.
Re: Help needed - feel worse using CPAP - long story
What makes the machine worth having? I would love to figure this out but am not sure that a different machine will help me with the main problem of the severe congestion and sneezing. I know it would help pinpoint leak issues, apnea and hypopnea events, etc. If I can't solve the congestion issue, then I guess none of the rest matters.Pugsy wrote:A word about the freezing nose...and heated hose.
You might be able to change the mode to Classic mode humidification....it will provide more heat...it also uses more water and chances of rain out increase. Some of the 50 series machines that first came out in early 2010 didn't have Classic mode available though. Classic mode was added sometime in 2010. You could go to the clinical menu and see if you can turn off the "new humidification system" and if you can then you have Classic mode available. Something to try if you can. I had the same problem with my 50 series machine. I called it ice cube nose. My nose got so cold it woke me up. Switching to Classic Mode helped and I used a hose cozy to help reduce the rain out and also helps insulate the air so it stays warmer.
I'm pretty sure I've tried using the machine in the classic mode. The tech changed the humidifier setting one time for me. I'll have to check again. There is a place where I know I can turn the humidifier on and off. It doesn't say "new humidification system" though.
There is a stand alone heated hose...I used one so that I didn't have to use a hose cozy but the one I used...the Hybernite 2300...says that you need to be able to use Classic mode with it. It isn't advisable to use that heated hose unless you have Classic mode available on your machine. You can find them on EBay or cpap.com sells them but you need a RX on file.
Did you notice a difference between using the Classic mode of humidification and the hose cozy vs. the heated hose? Are you using the heated hose as a matter of convenience or because there was a significant difference in how frozen your nose was?
Do you have any money available where you could purchase a machine that offers full data so you can monitor your therapy?
STLMark has a great machine available for $400..the model 560 and it has the option of adding the Respironics heated hose (additional $75)...I have it now and it is so worth it.
_________________
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Pressure Setting: 8cmH2O - 14cmH2O, Sleepyhead software |
Progress....not perfection.