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ZolliStar posted a discussion
Sunday
liz4cps commented on liz4cps's group Prince William Co, VA support group
"I talked to Kimberlie at the Novant Sleep lab last week (at Prince William Hospital) and she said they would not be holding any meetings this year but are planning to start holding meetings again next year.  I'll let you know when we have…"
Jul 14
richard graham posted a status
"I just have mask called the Wisp. Hope it works. Anybody have experience with it. I have an ultra mirage nasal mask and get leaks at brid"
Jul 9
Andy posted a discussion

Resmed S8 AutoSet II - No Longer Collecting Data??

Hi All,First off, my apologies for not checking in for a long time.I've been using my Resmed S8 AutoSet II for almost 3 years! I feel great, have lost almost 30 lbs, am no longer sleepy during the day, sleep through the night, and have my short-term memory back.Yay!I've told my doctors that I'm the "poster child" for Sleep Apnea and CPAPs! It's been, and continues to be, such an amazing experience that I want everyone to know!Everything has been going well in CPAP-land, but in the last few…See More
Jul 7
hifay replied to richard graham's discussion mouth breathing
"What type of chin straps?"
Jul 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"No real improvement in sleep study.  Just not having to use cervical neck color.  What a bummer. Surgeon wants another sleep study in about a month or so (home one) Not sure if will do or not. "
Jun 22
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Ginny, how are you doing after the tongue procedure?"
Jun 22
Mary Z posted a discussion

AHI finally under five.

I have been on CPAP since March 2008 and had a good AHI when I started therapy (under 5).Then my AHI started getting worse- for a while it stayed in the 20's, then we got it to the high teens.  Nothing we did would help.  My doctor said it was due to the meds I take.  For a couple of years I just tolerated the high AHI.  I did another sleep study and changed to an ASV machine.  For two years I still had a AHI around 11-13.  Then all of a sudden - a month ago I noticed my AHI was running five or…See More
Jun 22
ZolliStar replied to richard graham's discussion mouth breathing
"FWIW, I've been alternating between my mouth device and my APAP. I haven't used humidity at all when I use the APAP -- and don't miss it, either. "
Jun 14
richard graham replied to richard graham's discussion mouth breathing
"I still use humidity but less of it. It seems to be working OK.."
Jun 14
ZolliStar replied to richard graham's discussion mouth breathing
"I rarely use the humidifier. I think it's less necessary during the summer when there is humidity.   I also switch between my mouth device and the APAP.  I like each for different reasons. Not sure with which I sleep better, though.…"
May 21
Mary Z replied to richard graham's discussion sick again
"I've been doing well.  I think you were going to try the cpap without humidity- did that help at all?  I haven't had a cold for a couple of years."
May 14
Ginny Edmundson replied to richard graham's discussion sick again
"CPAP seems to cause stuffiness in many of us.  ANother reason I hate it so much!Do you rinse your nose with saline once a day…maybe before you go to bed for the night? "
May 5
richard graham replied to richard graham's discussion sick again
"I do wake up stuffed up most days"
May 5
richard graham replied to richard graham's discussion sick again
"I do have non allergic rhinitis. Now I'm thinking that's probably it because I only feel that way for a day or 2. Thank you"
May 4
Ginny Edmundson replied to richard graham's discussion sick again
"I have been lucky.  Not one cold past three years. Could some of your problem be allergies?"
May 4
richard graham posted a discussion

sick again

It seems like I am sick with colds more often when I'm on the CPAP. Anybody experience that.
Apr 30
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"As of now I no longer have to use a chin strap.  I am anxious about the sleep study.  Wondering if I will be able to sleep WITHOUT the CPAP….even thought I hate it it is a part of every night now and is what I am used to.  "
Apr 20
Clueless in Redwood Shores replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"I had it on the same outpatient basis.  Much pain, no long term gain.  I did not have the annual repetition - that might or might not have made the difference. "
Apr 20
Mary Z replied to richard graham's discussion mouth breathing
"glad to hear it, Richard.  Keep us posted."
Apr 13
Can anyone please tell me if they are using oxygen instead of the CPAP machine. I could not tolerate the CPAP machine, I told my Dr I wouldnt be able to use that and sleep. The forced air would wake me up when it ramped up as I had a feeling of bein suffocated. So she put me on Oxygen.

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Sue,
Hi! This is Melodie (Mel) and I am also an oxygen patient, but I have central sleep apnea too. I am on oxygen due to the fact that I have Emphysema. When my pulmonologist found that I also have the central sleep apnea, he added a Bi-PAP Auto SV unit to my oxygen and the oxygen is bled into the Bi-PAP at a rate of 4 liters per minute for "nocturnal" usage. My actual Bi-PAP Auto SC unit has 3 different settings, and it is set at 14-4-14.

The forced air is actually quite helpful to me, as just the oxygen itself wasn't helping me enough. Now that the oxygen is bled into my Bi-PAP, I actually sleep and feel much better - that is WHEN I SLEEP. I also have Narcolepsy and fall asleep during the day and have no control over it, so I am prescribed "Provigil" to keep me awake, and then "Seroquel" at night to help me sleep. It sounds crazy - and trust me - it is!!!!!!!!!!!!!!! If I take a whole Provigil tablet in the morning, then I cannot sleep at all that night, and sometimes the next night too. I feel like a total zombie half the time and am just waiting for the doctors to figure out the best combinaton to help both problems.

Hope this crazy response is helpful to you or anyone else in the group. And if anyone has any suggestions for me, I would greatly appreciate it.

Melodie (Mel) Aultman-Morris
Melodie said:
Sue,
Hi! This is Melodie (Mel) and I am also an oxygen patient, but I have central sleep apnea too. I am on oxygen due to the fact that I have Emphysema. When my pulmonologist found that I also have the central sleep apnea, he added a Bi-PAP Auto SV unit to my oxygen and the oxygen is bled into the Bi-PAP at a rate of 4 liters per minute for "nocturnal" usage. My actual Bi-PAP Auto SC unit has 3 different settings, and it is set at 14-4-14.

The forced air is actually quite helpful to me, as just the oxygen itself wasn't helping me enough. Now that the oxygen is bled into my Bi-PAP, I actually sleep and feel much better - that is WHEN I SLEEP. I also have Narcolepsy and fall asleep during the day and have no control over it, so I am prescribed "Provigil" to keep me awake, and then "Seroquel" at night to help me sleep. It sounds crazy - and trust me - it is!!!!!!!!!!!!!!! If I take a whole Provigil tablet in the morning, then I cannot sleep at all that night, and sometimes the next night too. I feel like a total zombie half the time and am just waiting for the doctors to figure out the best combinaton to help both problems.

Hope this crazy response is helpful to you or anyone else in the group. And if anyone has any suggestions for me, I would greatly appreciate it.

Melodie (Mel) Aultman-Morris
Sue said:
Melodie said:
Sue,
Hi! This is Melodie (Mel) and I am also an oxygen patient, but I have central sleep apnea too. I am on oxygen due to the fact that I have Emphysema. When my pulmonologist found that I also have the central sleep apnea, he added a Bi-PAP Auto SV unit to my oxygen and the oxygen is bled into the Bi-PAP at a rate of 4 liters per minute for "nocturnal" usage. My actual Bi-PAP Auto SC unit has 3 different settings, and it is set at 14-4-14.

The forced air is actually quite helpful to me, as just the oxygen itself wasn't helping me enough. Now that the oxygen is bled into my Bi-PAP, I actually sleep and feel much better - that is WHEN I SLEEP. I also have Narcolepsy and fall asleep during the day and have no control over it, so I am prescribed "Provigil" to keep me awake, and then "Seroquel" at night to help me sleep. It sounds crazy - and trust me - it is!!!!!!!!!!!!!!! If I take a whole Provigil tablet in the morning, then I cannot sleep at all that night, and sometimes the next night too. I feel like a total zombie half the time and am just waiting for the doctors to figure out the best combinaton to help both problems.

Hope this crazy response is helpful to you or anyone else in the group. And if anyone has any suggestions for me, I would greatly appreciate it.

Melodie (Mel) Aultman-Morris
Hi Melodie,
I am a first time user here and as you can see tried to send a response a couple of times without my response. :)
I thank you for your response because Sleep apnea is a new diagnosis for me. I have several other diagnosis I am dealing with as well. I have COPD, yup from smoking but i have been smoke free for 2years 2months and 14 days. How about knowing those exact numbers :) only from an ex smoker counting the days in hopes of better lung capacity. I see you were on oxygen first due to emphysema.
I was on oxygen but they took it away when my readings were high enough to not be qualified per the insurance company. Then, after having a sleep study done they found my levels went down several times during the night due to apneas. I think i have central apnea as well and am going to ask my Pulmanologist about your set up with the Bi-Pap. I would think they would have asked to have another oximeter overnight reading with the oxygen to see what if anything it is doing. Thank you again for your reply because it has given me another idea.
Thanks, Sue Grasso
Sue,

Please follow up with your doctor on this. Typically oxygen will not keep the throat open. One has to adjust to therapy and it is not overnight process. For many it takes several weeks to a few months to become adjusted to therapy.

What was your pressure? You may see if it could be turned down some -- or better yet try getting an apap so that the machine can have a range of pressures. You could stay at a lower pressure and have the machine go up when you are having apnea events.

You may need another sleep study to see about a bipap or other type of machine depending upon your diagnosis. Just don't give up.
Oxygen and CPAP or BiPAP (bilevel) is not the same thing. Sleep apnea (at least obstructive sleep apnea) is a mechanical problem that 9 out of 10 times is caused by a weakness of the tissue in the back of the throat above the voice box. Depending how bad the sleep apnea is, one may experience low oxygen levels during apneic episodes. While using oxygen alone can help with the low oxygen produced by the sleep apnea, it in no way treats the sleep apnea. It is the sleep apnea that causes the stress on the heart and other organ systems.

The goal is treating the sleep apnea. If you're having problems with CPAP you need to speak with your sleep professional to find other options. Find a lab that will work with you as much as you need.
Sue said:
Hi Melodie,
I am a first time user here and as you can see tried to send a response a couple of times without my response. :)
I thank you for your response because Sleep apnea is a new diagnosis for me. I have several other diagnosis I am dealing with as well. I have COPD, yup from smoking but i have been smoke free for 2years 2months and 14 days. How about knowing those exact numbers :) only from an ex smoker counting the days in hopes of better lung capacity. I see you were on oxygen first due to emphysema.
I was on oxygen but they took it away when my readings were high enough to not be qualified per the insurance company. Then, after having a sleep study done they found my levels went down several times during the night due to apneas. I think i have central apnea as well and am going to ask my Pulmanologist about your set up with the Bi-Pap. I would think they would have asked to have another oximeter overnight reading with the oxygen to see what if anything it is doing. Thank you again for your reply because it has given me another idea.
Thanks, Sue Grasso


Sue,
My Pulmonologist didn't find the Central Sleep Apnea until he realized that the C-PAP wasn't giving the results he had hoped for, so he ordered another sleep study and then found that I actually have the Central Sleep Apnea.

I AM getting MUCH BETTER results from the Bi-PAP (bilevel) device and now my oxygen levels during the daytime are improving as the physician had hope for, but he is still continuing the oxygen bleed into the Bi-PAP at this time and until further notice.

You MUST see your physician and do not get frustrated and give up on the PAP machine until another sleep study has been done! Hopefully your physician will obtain a better overview of your particular needs in another sleep study and if necessary change your PAP machine accordingly. If he/she feels that you also need oxygen - they will order it to be bled into the PAP device for you and the DME will give you the proper equipment according to the doctor's findings. And do keep taking any medications for your COPD!!!!!!!!!!!

Keep us informed on your situation and good luck!
Melodie (Mel)
Dave D. said:
Oxygen and CPAP or BiPAP (bilevel) is not the same thing. Sleep apnea (at least obstructive sleep apnea) is a mechanical problem that 9 out of 10 times is caused by a weakness of the tissue in the back of the throat above the voice box. Depending how bad the sleep apnea is, one may experience low oxygen levels during apneic episodes. While using oxygen alone can help with the low oxygen produced by the sleep apnea, it in no way treats the sleep apnea. It is the sleep apnea that causes the stress on the heart and other organ systems.

The goal is treating the sleep apnea. If you're having problems with CPAP you need to speak with your sleep professional to find other options. Find a lab that will work with you as much as you need.
Sue, I have COPD and when I was Dx'd w/OSA via an in-lab sleep evaluation I read up on all the problems patients have acclimating to CPAP therapy. My Dx was mild OSA. After thinking it over I cancelled the in-lab titration study and asked my family doctor to order an overnight oximetry. The overnight oximetry readings qualified me for overnight oxygen use and my family doctor scripted the overnight oxygen.

Sometime later the sleep pulmonologist called me to ask if I intended to reschedule the titration study and I told him I had opted to go on oxygen instead. He suggested that after I had been on overnight oxygen for 3 months to call him and he would order an overnight oximetry w/the overnight oxygen. He was a heck of a nice sleep pulmo so I obliged - and the overnight oximetry showed I was still desatting w/the oxygen!

So, I scheduled the in-lab titration study (oh yeah! despite I like this doc, trusting soul that I am (not) I still got a copy of the results to see for myself!) and sure enough I needed the titration study - and CPAP. *sigh*

The good news tho is that while after a goodly amount of time on CPAP w/2L of oxygen bled in another overnight oximetry w/CPAP indicated I no longer needed the oxygen bled in, CPAP was sufficient. And altho I was sleeping so much better and feeling so much more rested I still wasn't really up to par. I was switched to a bi-level and am doing great - finally.

So be patient and be willing to work your way thru this. If you and your doctor work as a team you can make a success of this therapy.
Can anyone please tell me if they are using oxygen instead of the CPAP machine. I could not tolerate the CPAP machine, I told my Dr I wouldnt be able to use that and sleep. The forced air would wake me up when it ramped up as I had a feeling of bein suffocated. So she put me on Oxygen.

I have heard of this treatment before, even from several nurses who refused to tolerate CPAP. It makes no sense to me. With sleep apnea, air cannot enter your lungs. What makes the doctor think supplemental oxygen will enter your lungs when you are having an apnea?
If you cannot tolerate the xPAP treatment at all, then you have to consider other treatments. Oxygen itself cannot treat your SA.
Henning
I was put on oxygen in 2006, the study showed I needed it at night. I had 3 sleep studies over a period of three years. The first two studies, the attendants had me use the oxygen. Sleep study almost normal, the last study without oxygen showed that I average going into shallow breathing or stopped breathing 51 times an hour. You can use the oxygen, but don't neglect apnea, either can kill.

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