New Here and need support/advice

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Sandramae
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Joined: Sat Dec 06, 2014 10:45 pm

New Here and need support/advice

Post by Sandramae » Sat Dec 06, 2014 10:48 pm

I'll keep this short but basically my husband has been diagnosed with moderate to severe OSA after deicing quickly for years (which I believe is due to stress and other factors). He is not trying all sorts of masks, he tries Nuvigil (horrible) and will stop and now cannot work for at least over a month because he was not able to function....not even drive, or do much more of anything.

Some people say that people don't start to feel better until their AHI GETS TO 2. HE had several nights of that but still felt like hell the next day. Does this mean that this has to remain steady for a while> basically I am trying to find out how long it takes to recover. I hear some feel better immediately and some never. I am scared because he is my life and bad things are happening for him. The quality of his life is so low is just heart breaking.

He has another sleep study scheduled for this Tuesday but I don't know what will come from it.

The two basic questions that I have are:

1. How long does it usually take to recover? And what does it take to do so? IE: Can one recover while working a stressful job?

2. Is there any place in the U.S. that is an actually residential sleep apnea center that has ENTs , Pulminologists, etc in the same place to speed up the treatment plan?

Any info would be appreciated.

Thanks,

Sandra

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.

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zoocrewphoto
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Location: Seatac, WA

Re: New Here and need support/advice

Post by zoocrewphoto » Sat Dec 06, 2014 11:59 pm

There are a lot of factors that determine whether somebody feels better quickly or not. For example, ahi is not the only number to worry about. Many doctors do not look at data and realize that while the number of events may be low, they could be clustered inti a short time period and/or very long. My mom had this problem as her ahi was low, but when she used a machine with full data, it showed that her events were mostly over 30 seconds each (one over a minute long), and they were clustered together, making that time frame really bad.

Fractured sleep. One way to avoid events is to wake up. Our brain stops events by waking us up enough to get us breathing again. Somebody who sleeps very lightly may have the beginnings of many events that don't get scored because the brain worked hard at waking them up. So those mini-wakeups mess with the sleeop cycles and leave us feeling like crap. This is also a common problem with new people since there is so much to get to used to. Air pressure, tickles, mask pressure, sounds, etc. Even changes in pressure if using an auto machine can mess with sleep. Many things, we get used to in time. Some things need to be adjusted. If sleep is fractured, you will never have good sleep.

The best thing you can do right now is find out and post what machine he has. Hopefully, he has a full data machine. if so, we can help you get the software for free, get your data downloaded, and then look at the graphs to see what is really going on. Some needed changes may be obvious. A lot of doctors prescribe machines, but really don't do much to make sure they are therapeutic. They just care abot=ut compliance data, which only means you tried, not that the therapy actually did what it needed to.

_________________
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

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Sandramae
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Re: New Here and need support/advice

Post by Sandramae » Sun Dec 07, 2014 12:46 am

Yes this makes lots of sense. First off he has the Air sense10 Autoset Resmed machine with humidifier. He had to change over to nose pillows and a chin strap 2 days ago because it was making his noise blister severely. Well it's now 1:15amEST and he woke up because he was breathing through the mouth for about 30 minutes straight - the strap does NOTHING to keep his mouth closed. He is going now to get the other full face and I will just make sure the gel strips are over the bridge. Who knows what will happen. This has been going on (with the masks and nose pillows and studies and tests, etc for a month and he continues to go down hill. He cannot drive , will pass out in mid sentence, cannot work, has barely any interaction with me or his friends, sleeps around 20 hours a day, etc. He was on Nuvigil and will stop tomorrow when he has no more work to do. It really wasn't working, yes he could barely function but like a zombie. The meds are also taking a toll on his immune system, personality and hey....they make it harder for him to sleep. Counterintuitive isn't it? His quality of life has gone down so low it's just shocking and heartbreaking. He has given up all his activities....exercise, music lessons, social functions, volunteer work, regular work, reading, watching TV/movies....o v e r. So so sad He was also so active an so smart...his IQ took quite the plunge too. Wow.

Well this is my life. every.night.and every.day. At least 3 to 4 hours on the phone with doctors and insurance companies, etc. He is set to go back to work at the beginning of January but I cannot see this being possible at all. The stress I suffer from taking on all of our responsibilities.....a new puppy....a new house...a new non-profit organization, everything makes me crack sometimes under the pressure and sometimes I'm not sure how much longer I can make it but I do. I love him so dearly.

BTW, the machine downloads data and in case you are interested this is the last spreadsheet I made:

Time Time Total (1-5) 5 bad
Date Day AHI Leak Mask Meds Asleep Awoken Hours Next Day Fatgue etc Notes

11-21 Fri 2.25 93% Nose only Mask/No chin strap 0 01:00 AM 06:40 AM 5hrs 40 min Pulled Mask off
11-22 Sat 0.55 73% Nose only Mask/No chin strap 0 04:00 AM 08:00 AM 4 hours 4.5 Passed out 3X
11-23 Sun 0.82 89% Nose only Mask/No chin strap 0 11:00 AM 05:00 AM 6 hours 5 Pulled off mask

11-24 Mon 2.76 29% Full face Resmed Mask 0 09:00 PM 05:30 AM 7.5 hrs 2 Felt worse at night
11-25 Tues 0.88 60% Full face Resmed Mask 0 09:00 PM 07:00 AM 10hrs 4 Dont remember
11-26 Wed 0.78 11% Full Face Resmed mask 0 11:00 PM 08:00 AM 9 hrs no data no data

11-27 Thur 1.01 10% New Full face leak guard new mask 0 11:30 PM 06:30 AM 7 hrs no data no data/thanksgiving
11-28 Fri 2.35 40% New Full face leak guard new mask 0 11:00 PM 06:45 AM 7 hrs 45 min no data no data
11-29 Sat 2.42 10% New Full face leak guard new mask NV ½ 11:00 PM 05:48 AM 6 hrs 48 min 4 extreme fatigue
11-30 Sun 0.73 0% New Full face leak guard new mask NV ½ 01:00 AM 05:40 AM 4 hrs 40 min 5 allover terrible
12-01 Mon 4.39 27% New Full face leak guard new mask NV ½ 10:40 PM 05:40 AM 7 hrs 3 Bad
12-02 Tues 3.32 41% New Full face leak guard new mask NV 1 11:30 PM 04:30 PM 6 hrs 4 declining rapidly
12-03 Wed 0.97 9% New Full face leak guard new mask NV 1 10:30pm off/on 6:30am 3.5 hrs 5 bad
12-04 Thur 3.56 6% New Full face leak guard new mask NV ½ 10:30 PM 05:45 AM 7.25 hrs 5 Bad

12-05 Fri TBD TBD Nose Pillow Mask NV 1 10pm off/on6:30am 8 hrs 5 worked 12 hours
12-06 Sat TBD TBD Nose Pillow Mask/switched to full face at 1am NV 1 11:30 - Worked 12 hours again
12-07 Sun TBD TBD NV 1
12-08 Mon TBD TBD 0
12-09 Tues TBD TBD 0 2nd Sleep Study
_____________________________________________________________________________________________________

Can you asses anything from this? And is there a residential place for this illness? What/who is the best hospital/doctor for sleep apnea?

And thank you so much for caring enough to respond. I can't tell you how much less isolating it is to be able to talk to someone about this who has a clue. BTW I had joined another forum but literally could not access it due to their server. No idea.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.

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Drowsy Dancer
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Re: New Here and need support/advice

Post by Drowsy Dancer » Sun Dec 07, 2014 1:31 am

I at least can answer one question. I am not aware of any residential treatment centers.

I'm sorry he is having such a hard time. There are a lot of things to sort out here.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Swift™ FX Bella Nasal Pillow CPAP Mask with Headgears
Additional Comments: Software: SleepyHead. Pressure: APAP 9.5 min/11 max, A-Flex x2
How we squander our hours of pain. -- Rilke

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zoocrewphoto
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Re: New Here and need support/advice

Post by zoocrewphoto » Sun Dec 07, 2014 1:42 am

Do you know what the pressure settings are? I'm not sure which versions of software you can use with the new machine, but you will get some advice on that soon from others. Once you can look at some data and post graphs, that will help. We can then see if there are lots of events (clustered or spread out), short or long, and what type they are. It will also help to see how bad the leaks are. Sometimes it helps to adjust the pressure settings. They may need to start higher to prevent events, or they may be causing problems by being too high. Some people are very sensitive to pressure changes, sounds, leaks, etc. THere are lots of ways to improve comfort and therapy, and this is a great group for figuring out what a person may need to change.

The weekends tend to be a bit slower, but I'm sure there will be some good responses soon. And it will get busier during the week. Your husband is very fortunate to have somebody like you advocating for him. A lot of doctors and equipment providers really don't don't look past compliance data, yet we really need comfort and useful therapy settings to be successful.

_________________
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

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kaiasgram
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Location: Northern California

Re: New Here and need support/advice

Post by kaiasgram » Sun Dec 07, 2014 2:08 am

Sandra, here is the website where you can download SleepyHead software to look at your husband's cpap data: http://sleepfiles.com/SH/index.html?TestingVersions

People here can help if you're having trouble getting it set up. We can also help when you're ready to post some screenshots of the report/graphs.

I'm sorry about what you and your husband are going through. How old is he? Does he have other medical conditions? There is no way we can give you an estimate of how long till he feels the benefit of the therapy, unfortunately. So many variables are involved. But we can troubleshoot the PAP therapy once we start looking at data.

Also, when you get the results of Tuesday's sleep study be sure to request a copy of the complete report (not just the summary). There are people here who can help you interpret it if you have questions.

_________________
Machine: AirSense 10 AutoSet with Heated Humidifer + Aifit N30i Nasal Mask Bundle
Mask: Aloha Nasal Pillow CPAP Mask with Headgear
Additional Comments: SleepyHead-now-OSCAR software on Mac OSX Ventura

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Sandramae
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Re: New Here and need support/advice

Post by Sandramae » Sun Dec 07, 2014 2:16 am

@Kalasgrams

You're very sweet but I just don't feel like I am doing enough sometimes. It sucks.
Anyway, I will ask him tomorrow about the pressure and see if I can add it to the spreadsheet.
I remember the doctor saying that he was going up to 80 second stints of no oxygen, but do not remember exactly how many.
I also remember them saying that the pressure was "all over the place" due to the mask moving around, etc.
I went and got the the piece of paper that mentions pressure and on one it says that the pressure ranges from min: 4.0cmH20 to 20cmH20. I'm still not sure what that means but I know that after they found this they insisted on another sleep study. From the graph, and maybe I am mistaken, but they look choppy, short and mainly clustered with a few outlying indicators.It also says that the median leak is 1.2L/min and the median pressure is 6cmH20.

Does this help at all??

@Drowsy Dancer - thank you for your input and empathy. It's been such a hard road. And yes, even after taking over 50 math courses in my day, I have still not sorted out all the variables here. Confounding actually.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.
Last edited by Sandramae on Sun Dec 07, 2014 2:26 am, edited 1 time in total.

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Sandramae
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Re: New Here and need support/advice

Post by Sandramae » Sun Dec 07, 2014 2:25 am

kaiasgram wrote:Sandra, here is the website where you can download SleepyHead software to look at your husband's cpap data: http://sleepfiles.com/SH/index.html?TestingVersions

People here can help if you're having trouble getting it set up. We can also help when you're ready to post some screenshots of the report/graphs.

I'm sorry about what you and your husband are going through. How old is he? Does he have other medical conditions? There is no way we can give you an estimate of how long till he feels the benefit of the therapy, unfortunately. So many variables are involved. But we can troubleshoot the PAP therapy once we start looking at data.

Also, when you get the results of Tuesday's sleep study be sure to request a copy of the complete report (not just the summary). There are people here who can help you interpret it if you have questions.
Hi....thanks for your response.....yes I used that software to download his data and make the spreadsheet for him. It took a while but I figured it out thank god.

I would like to figure out how to post these pages because I actually thought that this was the whole report (still trying to figure out why my signature is not showing). Anyway, I think I may just not be reading this last report correctly. I will make sure to get the full one Wednesday and post it somehow. That is SO nice of you guys to help me figure it out!!!!

He is only 52, no other medical conditions whatsoever....other than the ones that this illness has caused...it's burning out his immune system....chronic fatigue....skin rashes...mood/personality changes and maybe depression He was so full of life years ago and it just has slowly deteriorated.....especially since he took this new extremely stressful job. It just went spiraling down from there. I hope his leave of absence can help him rest some and also give us more freedom and time to figure this all out. Though I just do not know if he will be ready to go back to work in January when he planned. I hope so but I am not sure.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.

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kaiasgram
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Location: Northern California

Re: New Here and need support/advice

Post by kaiasgram » Sun Dec 07, 2014 2:29 am

A lot of people do not fare well with those pressure settings. 5-20 basically means that the pressure can range from the absolute lowest (actually the lowest is 4) to the absolute highest the machine can go. If the pressure is "all over the place" it could well be that those wild fluctuations in pressure are disrupting his sleep significantly even if he's not having a lot of apneas. Also, a mask that fits well at low pressures can start leaking like crazy when the pressure goes up into the heavens!

So there may be a lot of valuable information once we start looking at some graphs of what is actually happening with the pressure and with leaks throughout the night. We can help you with how to post screenshots. Are you on a Mac or PC?

To start, we want to see a typical night with the numbers on the left under the pie chart, and the graphs on the right (Events, Flow rate, Pressure, Flow Limit, Leak and Snore). The calender isn't really necessary but it doesn't matter as long as we can see those numbers below.

Image

_________________
Machine: AirSense 10 AutoSet with Heated Humidifer + Aifit N30i Nasal Mask Bundle
Mask: Aloha Nasal Pillow CPAP Mask with Headgear
Additional Comments: SleepyHead-now-OSCAR software on Mac OSX Ventura

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Sandramae
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Re: New Here and need support/advice

Post by Sandramae » Sun Dec 07, 2014 2:43 am

kaiasgram wrote:A lot of people do not fare well with those pressure settings. 5-20 basically means that the pressure can range from the absolute lowest (actually the lowest is 4) to the absolute highest the machine can go. If the pressure is "all over the place" it could well be that those wild fluctuations in pressure are disrupting his sleep significantly even if he's not having a lot of apneas. Also, a mask that fits well at low pressures can start leaking like crazy when the pressure goes up into the heavens!

So there may be a lot of valuable information once we start looking at some graphs of what is actually happening with the pressure and with leaks throughout the night. We can help you with how to post screenshots. Are you on a Mac or PC?

To start, we want to see a typical night with the numbers on the left under the pie chart, and the graphs on the right (Events, Flow rate, Pressure, Flow Limit, Leak and Snore). The calender isn't really necessary but it doesn't matter as long as we can see those numbers below.

Image
Ohhhhhh how wonderful!!! Yes this is what I was looking at on the doctor's screen. I will ask for the last report and the one from this Tuesday and I will post them immediately!! Omg I cannot believe how knowledgable and helpful you all are. I am in tears from feeling the slightest bit of relief as I sit up at 4am until he wakes up!!!!!

God I cannot thank you guys enough!!!

P.S. I have a MAC btw and I did download some software/rather he did but I can't remember - I think it was from the link someone posted.....sleepy's maybe?

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.

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kaiasgram
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Location: Northern California

Re: New Here and need support/advice

Post by kaiasgram » Sun Dec 07, 2014 2:52 am

I'm on a Mac too. I have a link to instructions on taking a screenshot on the Mac in my signature box below. When you get a screenshot, you upload it to a site like Photobucket or imgur. When you upload the image you'll get an image code that starts with [IMG]. You'll copy and paste that code right into a post here. It will just be text, but if you click on the Preview button you should see your image. if you can see it, then we will also see it once you click on Submit.

There really is reason to feel hopeful here -- it sounds like your husband is very new to this therapy and it also sounds like his therapy is not yet dialed in to an optimal pressure or range or pressures. Hang in there.

_________________
Machine: AirSense 10 AutoSet with Heated Humidifer + Aifit N30i Nasal Mask Bundle
Mask: Aloha Nasal Pillow CPAP Mask with Headgear
Additional Comments: SleepyHead-now-OSCAR software on Mac OSX Ventura

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Sandramae
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Joined: Sat Dec 06, 2014 10:45 pm

Re: New Here and need support/advice

Post by Sandramae » Sun Dec 07, 2014 3:17 am

kaiasgram wrote:I'm on a Mac too. I have a link to instructions on taking a screenshot on the Mac in my signature box below. When you get a screenshot, you upload it to a site like Photobucket or imgur. When you upload the image you'll get an image code that starts with [IMG]. You'll copy and paste that code right into a post here. It will just be text, but if you click on the Preview button you should see your image. if you can see it, then we will also see it once you click on Submit.

There really is reason to feel hopeful here -- it sounds like your husband is very new to this therapy and it also sounds like his therapy is not yet dialed in to an optimal pressure or range or pressures. Hang in there.
Oh ok well I wasn't looking at his screen when he read me the numbers so maybe that can be seen from his and not necessarily the doctor. That would be great. I'll try it tomorrow!

Thank you SO much !

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.

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Julie
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Re: New Here and need support/advice

Post by Julie » Sun Dec 07, 2014 4:55 am

Hi, I wanted to clarify something... OSA is not something you get all the way better from and therefore stop using Cpap. It is a condition (like diabetes is one) where if your therapy is set up well and you use it every night, you can function almost as if you didn't have it, but you will (99% of the time) not be 'recovered' in the sense that you get to quit using Cpap. A very few people have e.g. lost 100 lbs (or at least a major amount of weight) and following a new sleep study are able to stop using Cpap, but the great majority of us, until technology comes up with a better widget, are going to be on Cpap indefinitely. There are dental devices and surgery which dentists and ENTs will push, but they are generally not as effective at all, and sometimes surgery can make things worse because it is then not possible to go back to Cpap when OSA returns within a year (as it so often does), so Cpap (one version of it or another) is really the best way to go.

I think your husband may get a more useful result from his new study and once you both have learned more about OSA and Cpap a lot will make more sense to you. For now I suggest he make every effort to not sleep on his back because it provokes more apneas, and if he has GERD, to try and address that as well because it can waken people along with apneas.

Please let us know what happens and we'll try and get you both through what follows!

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Nick Danger
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Re: New Here and need support/advice

Post by Nick Danger » Sun Dec 07, 2014 7:54 am

Sandramae - I know it's hard. I'm impressed at the support you are providing to your partner. You are doing the right things, just keep doing them. At some point your husband will have to take charge of his own therapy if this is going to work long-term, but it is great that you are taking care of him now. Don't doubt yourself and don't get frustrated at the lack of instant improvement. If he keeps using the machine, improvement will come.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: APAP mode, minimum pressure = 9. No ramp, EPR = 3, medium. Soft cervical collar. Sleepyhead software.

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Sandramae
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Re: New Here and need support/advice

Post by Sandramae » Sun Dec 07, 2014 9:17 am

Julie wrote:Hi, I wanted to clarify something... OSA is not something you get all the way better from and therefore stop using Cpap. It is a condition (like diabetes is one) where if your therapy is set up well and you use it every night, you can function almost as if you didn't have it, but you will (99% of the time) not be 'recovered' in the sense that you get to quit using Cpap. A very few people have e.g. lost 100 lbs (or at least a major amount of weight) and following a new sleep study are able to stop using Cpap, but the great majority of us, until technology comes up with a better widget, are going to be on Cpap indefinitely. There are dental devices and surgery which dentists and ENTs will push, but they are generally not as effective at all, and sometimes surgery can make things worse because it is then not possible to go back to Cpap when OSA returns within a year (as it so often does), so Cpap (one version of it or another) is really the best way to go.

I think your husband may get a more useful result from his new study and once you both have learned more about OSA and Cpap a lot will make more sense to you. For now I suggest he make every effort to not sleep on his back because it provokes more apneas, and if he has GERD, to try and address that as well because it can waken people along with apneas.

Please let us know what happens and we'll try and get you both through what follows!
Thanks so much...yeah we realize he will be using this forever. He is not overweight so I'm pretty sure losing weight won't make much of a difference.

I do have a question, the doctor said that it does not matter if he sleeps on his back or side if he is using the mask. Should he still be sleeping on his side with the mask on? We have an apparatus to help with that too.

Thanks.

S

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Switches back and forth to AirFit P10 Nasal Pillow with chin strap due to nasal bridge blistering. I think the humidifier is contained in the machine.