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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Mon Jul 01, 2019 5:46 am
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Very, very small bank in a very small town. They don't have the stuff needed to make cards...and people might wonder why do we use them??
Because years ago when hubby needed a small loan and no one else would talk to us...they loaned us the money.

I have your files and they are in OSCAR and from a quick look....90% SWJ and not real flagged events. I will look more closely later and compose some thoughts and post some examples to help you learn what to look for.

I don't know what is causing your poor sleep but it ain't sleep apnea that is untreated. It's something else. I wish it was sleep apnea because it's easy to kill....figuring out other causes of crappy sleep is much more difficult in both figuring out and finding a way to fix things.


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Mon Jul 01, 2019 10:44 am

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I can see understand you being "loyal" to the bank that was willing to help you when you needed it. I hope you get your replacement card quickly and they refund your money.

It will be interesting to hear what you find from my data. I understand that if it is not sleep apnea that is causing my sleep problems then it will be a harder problem to deal with since the CPAP machine can't fix it. I have no idea what to look for in all that data.

Puzzling to me is that my score from last night was around 12 again! And I thought I slept pretty well but was again really tired when I got up!

Thanks again for your help! Richard


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Wed Jul 03, 2019 7:31 am
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Still looking through all your graphs and while you do have an occasional (what appears to me to be) real apnea event as in OA or hyponea....the majority seems to be SWJ or post arousal stuff.

There was a handful of post arousal stuff that happened after what appeared to be a real OA or hyponea meaning perhaps the apnea event itself contributed to the arousal and then the SWJ stuff happened to get flagged after the real event.

As far as machine tweaks...only thing I can think of maybe trying is a little increase in pressure to maybe prevent those handful of real apnea events that might be causing some arousals. It's a long shot but worth trying.

I haven't had time to get some example screen shots loaded into my imgur account but I will try to do that today so you can see what to look for on your own.

In general your high AHI is a by product of poor sleep quality and the poor sleep isn't related to sleep apnea. There's the maybe with the post arousal stuff from the handful of real events but those are not very numerous and no where near the bulk of your flagged events.
You have crappy sleep quality and probably from a number of factors and not so easily fixed either.
You feel better when you have lower AHI numbers because you sleep better in general. Has nothing to do with the sleep apnea therapy itself.
For the most part your sleep apnea is effectively treated...a handful of maybe real events but I am talking maybe 1 per hour average and that's a high average.
Lots of things cause crappy sleep....medication side effects...other health conditions...pain....restless leg (PLMD) can cause arousals.
Remember that we may or may not remember arousals.

The leaks you are having....they most often are bad enough and frequent enough to also be disturbing your sleep...so those leaks probably aren't helping your sleep quality.

The bulk of the centrals/CAs appear to be SWJ for sure....very rare real central which is normal.
I am not so sure that using EPR caused your centrals now afterall.


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Wed Jul 03, 2019 10:37 am

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Dear Pugsy: thanks so much for your analysis. Your conclusion that most of my flagged apneas are SWJ makes me feel somewhat relieved as it shows that at least the CPAP machine is working and handling my real apneas. I was so mystified why I was having such a high amount of AHI's when everyone else was getting almost total relief from CPAP therapy. Interestingly, the night before last I had a real problem getting to sleep, but had my mask on...probably was awake for well over an hour. I checked my AHI score and it was 30! Obviously these were all false positives and would distrort my entire score of 13! Last night I made sure that I was very close to being asleep before I put on my mask and my score, while not ideal, was 8.1. I realize that sleep hygiene is the real problem, and talked to my sister who said that she has the same problem and makes sure she does not eat any sweets before bed and does not use her computer or watch tv for an hour before she goes to bed. I will talk to my dr. about all your conclusions as I am sure you are right. As you said before, finding this out does not solve my problem of being sleepy all day, but at least it shows that the CPAP is working and hopefully my health is being benefited by assuring my brain/heart is getting enough oxygen! I have to run to a dr. appointment with my nephrologist but may have some questions for you that I will present in another post once I get home! Thanks again Richard


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Wed Jul 03, 2019 3:44 pm

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Pugsy: I am feeling a lot better today as I am really trying to make sure I go to sleep in a more calm setting and not reading or watching tv. When you mention EPR I assume you are talking about my bilevel option. I guess my problem was when I was on that setting I was having real high scores-15-25, but when I switched to CPAP mode at around 10 things were better. I will be seeing my sleep dr in a week or so and am wondering if I should go back to that bilevel mode with a 10/6 and see what happens? (I think that is the last setting he had given me.) I also It appears that I am better off staying on CPAP mode? I want to tell him about your conclusion that most of my real apneas are being resolved with CPAP therapy but that I am having a lot of arousals.

I was looking at several of my sleep studies and they all mention that I was having "rare isolated PAC's and PV's" and my EEG was "remarkable for alpha intrusion and increase in spontaneous arousals" and also an "increase in fragmentation and a decrease in sleep efficiency", whatever all that means. The report says they should be "clinically correlated" and I should consider having a 24 hour Holter study to further evaluate sleep related "cardiac dysrhythmias". He has never discussed or explained any of this to me so I may bring up all of this at my appointment. Any ideas? Thanks Richard


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Thu Jul 04, 2019 5:15 am
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The problem with 10/6 in bilevel mode is the 6 EPAP...it's going to allow too many obstructive apneas and hyponeas to sneak past the defenses.
A lot more. You are most likely going to need EPAP of at least 8 or 9.

EPAP is the most critical setting for holding the airway open and preventing the collapses.
6 EPAP....simply can't do the job. Now if you had an auto adjusting pressure machine...might work in auto mode but not with the machine you have now.

And all this simply means crappy sleep quality
Quote:
"remarkable for alpha intrusion and increase in spontaneous arousals" and also an "increase in fragmentation and a decrease in sleep efficiency"


Spontaneous as opposed to respiratory related. Spontaneous means no known cause...only respiratory related can maybe be fixed with cpap
Alpha intrusions....I forget what I read they might be caused by but pain seems to be stuck in my memory for some reason.

So technically you have more than 1 thing messing with your sleep quality...OSA and lord knows what else.
The OSA stuff you pretty much have under control with the EPAP settings around 10 ish....
The other stuff messing with sleep quality....much harder to figure out what it is and how to fix it.


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Thu Jul 04, 2019 5:28 am
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The heart stuff.....I don't mess with heart stuff.
I leave that up to the doctor.


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Thu Jul 04, 2019 10:22 am

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Hey Pugsy: thanks again for your response and I hope you have a great 4th of July celebration. At least I am not in DC and having to see all the jingoism going on with our fearless leader!...I hope it rains! The weather has been very nice here...about 80, although it is a bit foggy this morning but I assume it will burn off before fireworks.

I frankly do not understand the benefits of bi-level and will hold off even trying to change my settings, since I am consistently around an AHI of 8, and with the knowledge that many of those events are arousals, I am doing fine in terms of my CPAP therapy.

You mention that an auto adjusting pressure machine might help. I will ask my dr and see what he says and if insurance will cover it. Even if I have to pay out of pocket it may be worth it but I am doing so much better thanks to your help and encouragement I don’t know if it is worth the hassle. At least I know the CPAP is working and now I need to focus on getting better sleep.

As I said before, now that I am better educated I can ask my dr a lot more questions, including whether any of the other findings from the sleep study should be looked at. If you can let me know why you are convinced that the majority of my “events” are not apneas, that would be appreciated since I doubt he will accept my conclusions! No rush, as my appointment is not for 11 days.

Thanks again Richard


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Thu Jul 04, 2019 2:37 pm
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Here's nice normal asleep breathing. Notice how regular and rhythmic it is.

Attachment:
asleepbreathing.JPG
asleepbreathing.JPG [ 147.32 KiB | Viewed 22395 times ]


This is all awake breathing...none of the flagged events are real....you didn't really ever get to sleep and then you turned the machine off.

Attachment:
allawakebreathing.JPG
allawakebreathing.JPG [ 116.44 KiB | Viewed 22395 times ]


Below.....You were asleep...then there is an arousal breath...I circled it in red. So you woke up (may or may not remember it) and took a big gulp of air.
See how the breath has much bigger movement of air. All flagging done after it is related to the arousal and awake/semi awake status.
You weren't asleep. Ragged breaths and pauses in breathing and the machine thinking OAs and centrals. The machine can be fooled.

Attachment:
arousalbreath.JPG
arousalbreath.JPG [ 154.23 KiB | Viewed 22395 times ]


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Thu Jul 04, 2019 2:40 pm
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All SWJ...not asleep.

Attachment:
allSWJ.JPG
allSWJ.JPG [ 154.92 KiB | Viewed 22395 times ]


This one the first OA flagged is probably real but the rest of the flagged stuff looks like post arousal or halfway awake from maybe the first real OA.

Attachment:
firstrealOAmaybe.JPG
firstrealOAmaybe.JPG [ 158.86 KiB | Viewed 22395 times ]


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Thu Jul 04, 2019 6:27 pm

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Thanks so much Pugsy! Your examples are incredibly helpful in allowing me to understand how to read my data. Watching educational videos did not capture my problem which was significantly worse than what was used as the example. You have really clarified things for me and I truly appreciate the time and effort you undertook. I may bring this to my dr appointment so he can see what is going on too! (I assume he must be aware that a lot of my events were not apneas, but it won't hurt to show him!) Hopefully I can use this as I attempt to improve my "sleep hygiene" and see from the airflow whether it is apneas or other crap that is behind continuing problems! One question: looking at the first example where I was sleeping soundly (based on my breathing) I note there are still a number of flags...just wondering what those depict, if you can tell? Thanks again and have a great remainder of your 4th! Richard


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Fri Jul 05, 2019 7:15 am
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Buschman wrote:
One question: looking at the first example where I was sleeping soundly (based on my breathing) I note there are still a number of flags...just wondering what those depict, if you can tell?


I looked at each of the events through several nights....90% of the flagged events were SWJ....IMHO.
You weren't asleep when the bulk of the events got flagged.
I can't tell what wakes you up though....all I can see is evidence of awake/semi awake breathing.


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Fri Jul 05, 2019 11:45 am

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Thanks again Pugsy! I am feeling better as I am trying to go to sleep earlier but it frankly is hard to control my sleep. I am hoping my dr may have some explanation or solution, but I doubt it. But we have made tremendous progress! I am heading on the train to SD to visit my brother! Have a great weekend! Richard


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Mon Jul 08, 2019 4:57 pm

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Hey Pugsy! It seems like we are friends! I am sure you were waiting on bated breath to hear how my long weekend went (lol)! I usually don’t “travel” well, but I did great, with scores around 5-6, and I am sure most of those being arousal events. My energy is significantly better and I am not focused on my sleep or my scores since now it is pretty much a solved problem...with other “problems” (like figuring out how/if I can improve my sleep quality to diminish arousals) much less important. With the reduction in fatigue comes a much better attitude and I am really optimistic for the first time in a while; not only has my sleep disorder improved but I also had a very promising appointment with my kidney specialist advising me this kidney problem I developed is in total remission and my overall health is excellent!

Thanks so much to you and Diamount and all the others in this forum! I guess it is time to make a charitable contribution to Lefty for setting this up! But you deserve more than money could buy!

Pugsy, I don’t know how to send you a personal message but if you can PM me that would be appreciated as I would like to send you something to reflect my gratitude!

I hope all is well with you! Richard


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Wed Jul 10, 2019 3:32 pm
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Finally got my grandson on the plane today for his trip home.
Man is it ever too quiet here now.
I will send you a PM in a little bit.


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Buschman
Unread post  Post subject: Re: Problem with apneas after one year of CPAP and BiPap use  |  Posted: Mon Jul 15, 2019 8:27 pm

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Dear Pugsy, Diamaunt and other group members: I wanted to report on my progress. I saw my sleep dr today and he was rather stunned about my reduced AHI scores. While he wanted to take credit I made sure he was aware that I had to turn to you guys for help! I was a little concerned he would be PO'ed that I was making changes in my "prescription" without his consent, but he was cool with that and wants me to stay at the 10 CPAP setting and see him in a couple months! I looked at the one page summary he was relying on and it contained barely any info other than my average AHI score, my compliance, average hours of sleep, snoring level, etc. I did not see that he had any breakdown of the type of apneas I was experiencing, which makes it hard for him to really assess how effective my therapy is, since most of my apneas were open airway, which are not treatable with a CPAP. I sure am grateful to the guy who developed Sleepyhead/Oscar as that info is so complete. I told my doc that one member of my group (Pugsy) analyzed my AHI in contrast with my airflow and determined that most of my "events" were false positives since I was clearly awake at the time of the event! He did not say much and while he might have been impressed with my explanation, he merely said to come back in 6 weeks! Better than getting in trouble!

I feel much better over the last several weeks and am so grateful as I thought I was destined to be fatigued and in a fog for the rest of my life! I am now much more energetic and motivated. A true life altering event!

I hope anyone who reads these posts that is suffering from sleep apnea or not getting the results they need from their CPAP therapy will get inspiration from my story! As I was told when I joined this group, you have to take ownership of your condition, which led me to start educating myself about sleep apnea and CPAP therapy, instead of relying on my dr. I am not suggesting you should not have a dr periodically oversee your therapy, but there is no way a dr can review your data in a 15 minute appointment and make an educated decision about the efficacy of the therapy.

This forum (including members like Pugsy, who took me on like a wounded raccoon) is the greatest! The willingness of the members to devote their time and expertise to assist a person like me, coming out of the blue (from CA on top of everything else), along with the very helpful vidoes from Lefty, is a testament that there still is good in this divided land in which we live!

Thanks again to everyone! Richard


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Pugsy
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Tue Jul 16, 2019 6:56 am
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You do realize that most of what you told him that we did he didn't really have a clue what you were talking about. :lol:
Wanna bet he had no idea that you could actually zoom in on the flow rate and see individual breaths (and this feature can be done in ResScan so it's not like it's only on SleepyHead/OSCAR.) and figure out awake vs asleep.
That's okay...most doctors don't get training in that sort of stuff and they rely on the sleep techs to do it for them.

At least he didn't get his panties all in a wad because we played with the settings and you got his blessing to continue doing what we came up with.
Some docs really get upset when the patient does anything on their own no matter what the results.


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Tue Jul 16, 2019 1:07 pm

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Pugsy: you are likely right that my dr does not even have access to this data, other than the reports generated by the sleep tech after a sleep study. I remember reading somewhere that some drs. use Sleepyhead/Oscar but the one sheet I saw was not even close to the "statistics" report on Oscar (which gives us a weekly/monthly/yearly analysis of the data).

If that is the case, I can see why he was having trouble getting my settings right. He is a pulmonologist and specializes in sleep medicine so I assume he has been "trained" about all the intricacies of CPAP therapy. I must admit when I mentioned obstructive vs. open airway apneas, and looking at flow rate to determine if real apnea events were occuring, he did not respond in a fashion that gave me confidence that he knew what I was talking about!

Also he did not get upset about me changing my settings, so it was a good day! I was actually quite nervous since he is a hard guy to "read", even after being his patient for well over 10 years (initially for my PLMD disorder). The last thing I could afford was to get him angry at me, and cut off the meds I need for my other disorder. So I was diplomatic, although I was tempted to ask him why he did not tell me all this information before! Better left unsaid!

Anyway I am feeling a whole lot better and that is the most important thing. I still am getting AHI scores up to 10, but I know much of those are not apneas but arousals, etc. Most importantly I am feeling great...literally its like night and day, if you will pardon the pun! So you guys are my heroes!

Thanks again for all your help! I will keep you posted!

Richard


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loosingmyhair
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Fri Aug 02, 2019 3:08 pm

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I have read every single page post and word here. I am dealing with a ignorant Doctor and DME right now I have not even got a machine yet and on the verge of paying out of pocket but I to have wondered as I go on this journey that I don't feel comfortable in dealing with a doctor to adjust the machine. It's my life my decision I feel because now that I have moderate sleep apnea and between the misleading and LIES of doctor and DME I feel it's time to take my prescription pay for a machine out of pocket if the insurance will not authorize me for a auto bi pap and read read read and learn from others on these forums and adjust to what I feel is best for me.

Buschman honestly the doctor was probably upset because he couldn't get about 40 more vists out of you to make more money from the visits.

I have really really enjoyed this thread and this forum in general.


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Buschman
Unread post  Post subject: Re: Problem with apenas after one year of CPAP and BiPap use  |  Posted: Sat Aug 03, 2019 7:24 pm

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Thanks for your interest in my post...you had a chance to “participate” in a couple month “journey” that resulted in a “success” story, thanks to Pugsy, Diamaunt and others.

First, as the group members observed early on, every case is different but it is always best to take ownership of your condition. Some people can have a sleep study and be prescribed a CPAP with a pressure setting and it instantly transforms their life. That certainly was not the case with me. However, I am not blaming my dr. as I have other sleep disorders that complicate things and there is only so much time my dr. can devote to me. I do wish that he and his sleep tech worked with me more to “educate” me so I could better understand my sleep apnea diagnosis and recognize I was not one of the fortunate ones who would get instant relief. But that is water under the bridge.

Second, we determined I was one of the unusual group of people that apparently had adverse results from the bi-pap machine I started using earlier this year. Once I changed back to CPAP in the last 2 months and adjusted my pressure through trial and error and reviewing my sleep data from the Sleepyhead/Oscar software, I am doing dramatically better in terms of my fatigue and focus issues as well as my events/hr.

With that said, I am not an “expert” so please do not look to me for advice. You mention you are dissatisfied with your Dr but do not say why. Since you say you have moderate sleep apnea, I assume CPAP therapy would be beneficial, but there are other treatment options for moderate sleep apnea that are available. Since you say you have a prescription for a machine, I know there are wholesale suppliers who you can purchase your CPAP from if your insurance will not pay. After you have the machine and decided on the mask, there are likely members of this group who would be willing to help you with the pressure setting. Frankly you may be better off contacting Jason/LankyLefty (the group moderator) who is a licensed sleep tech, but unlike my sleep tech, is available to assist you with your settings and issues that might arise at a reasonable hourly rate. He could also assist you in analyzing your data.

I suggest you do your own post on this site as it is possible your post to me will not be seen and responded with o by other members. Good luck. Richard


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