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New member here - Love the site already - Need some advice
#11
Hi Biglar,

Welcome to the forum! I am fairly new to this myself. My sleep study was terrible, spent most of it in stage 1 sleep, think I got like 12 minutes in Rem sleep. They recommended a pressure of 6 for me also but I knew that I hadn't really slept. They recommended another titration study if I did not feel improved. Based on recommendations from this forum, I talked my DME into an APAP (s9 autoset). I asked for the full face mask, I know I open my mouth at night.

My DME set the machine up in CPAP mode, I changed it when they left. My average pressure is now around 8. The machine titrates for me every night. No need for the extra Sleep study, imho, in my case. I set my machine to range from 6 to 10.5 .

So you might consider calling your doc and asking for a data capable apap. Hopefully your machine is a rental and not a difficult switch. You can tell him your sleep study shows you need higher pressures when you are on your back and that your compliance will be better if you have lower pressures (more comfort) when on your side. Or just talk your DME into it like I did. You could also make a case with the doc that the apap will allow you to do home titration since the sleep center was not that successful.

If I had not found this forum I probably would have given up on the cpap. The pressure they recommended for me is my starting pressure now. The nights I tried to sleep with their recommended pressure my AHI was over 15 and I didn't sleep very well.

Good luck to you!
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#12
IMO as you have not slept well at the sleep lab to be titrated with the correct pressure, You ought to be using an auto machine which can control your apnea in all sleeping positions. Which System One machine are you using? The Auto and Pro are data capable machines and the Plus is not. also the 50 series is compatible with SleepyHead software and the 60 series with the heated hose is not.
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#13
(08-26-2012, 10:28 AM)Sleepster Wrote: I do not think that a pressure of 7 cm is doing you any harm. What's happening is that your airway nearly closes, significantly reducing the flow of air into your lungs, but not completely stopping it. These events are called hypopneas. They make you wake up 67 times per hour! Untreated, this will significantly increase your chances of a heart attack or stroke.

But it will also dramatically reduce the quality of your life. Without CPAP therapy you will lead a miserable sleep-deprived life and likely die at an early age of a heart attack or stroke.

Please don't think I'm being mean. I've chosen to tell you these truths because I want to scare you into using your CPAP machine.

The good news is that with continued and consistent use of your CPAP machine you will start to see improvement in the way you feel. You will reduce or remove the liklihood of a heart attack or stroke. You will improve the quality of your life.

For some of us this takes longer than for others. I've been on CPAP therapy for almost 10 months. It took me a couple of weeks to see any improvement, and since then improvement is slow. But steady! It accumulates and makes a huge difference in my ability to function and lead a life worth living. My stress and anxiety levels have dropped to near zero. I used to worry about all kinds of little things, and I had trouble concentrating and completing simple tasks. I was driving myself nuts!

I think you may not need a second sleep study. We need to take a look at your therapy and see if we can improve it.

1. Do you have a data-capable machine? What's the full name and model number of your machine? Look at the on-screen display and tell us your AHI, percent time in large leak, and percent time in periodic breathing.

2. Why are you wearing a full face mask? A nasal mask is easier to wear and less likely to leak. Do you have issues with breathing through your nose when you're awake?

3. Wear your mask at all times when sleeping. Don't worry about how you look to other people. You are saving your life by wearing it. Your fiancee will understand this completely.


Wow! I am overwhelmed by all of the responses already. I will do my best to answer all of the questions. Thank you for the information Sleepster. I am taking this very seriously. Hopefully it's not too late to reverse some of the damage leaving my apnea untreated might have caused. To answer your questions:

1. The type of machine I have is a Phillips Respironics REMstar System One 150p. Serial Number P05804456. It doesn't appear to record much information. It has a modem and sim card. They recently asked for the modem back. I downloaded Sleepyhead v0.9.1 and it appears my machine kept track of the pressure number and the hours uses and that's it.

2. When sleeping I tend to breath out of my mouth and I seem to be congested at night. At the sleep study, the nurse attempted to give me nasal pillows. Everytime I opened my mouth, I felt like a dragon with air shooting out of his mouth. Now that I have played with the pressure setting on my CPAP machine, I swear they had it in the 20's when they first hooked me up. I actually had nasal spray- That seemed to fix the congestion but it still was very tough to sleep. I remembered that when I got fitted for the mask and thats why I went with the full face mask. The mask process seemed kind of rushed and they only had like four options with one of them being the nasal pillows.

3. I will from now on. I feel like a dummy not taking this more seriously in the past. Oh-jeez
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#14
(08-26-2012, 11:39 AM)JudgeMental Wrote: Biglar...Welcome and thank you for your kind words about this forum. We hope you will visit and contribute often/
I think you may get a few differences of opinion about your position at this time. We are not physicians, but are only sharing our experiences, suggestions and opinions. All offerings are "well intended", by "sleep apnea patients helping one another"..
I am glad that your primary care doctor eluded to the weight issue. Your (BFI) body fat index, is terribly high. It is bound to have some effect on your apnea. Your 3 to 3 1/2 hours of sleep in the study is pretty good. Some folks, like me, didn't sleep at all or not enough to make a determination during my first study. You mentioned anxiety and I believe that was a case for me. My second study was more decisive.
With that said, and after reading the report from the sleep technologist, I feel if its possible, both financial and time wise, to have another study done. Especially after she said that the pressure of 6 normalized your AHI but you were without REM. The increase of pressure to 7 placed you into some area of REM but AHI was not normalized..The body needs REM to regenerate and rest. You need to find a combination of both a low AHI and REM sleep. Your anxieties will probably be zero now that you have been to the sleep study before and the outcome of the study will probably be more decisive.
Mask leaking issues are the norm and take a lot of determination to deal with. You will find one however, thru trial. You will get a much better handle on your therapy if your CPAP machine is a full data capable one.
There are a couple of sleep professionals and technologist who visit this forum occassionally, so maybe one will offer some words.
Remember, that you have probably had sleep apnea for quite a while, so don;t expect to feel 100% better overnight. Takes time.

Thank you very much. I think that was one of my issues- Unrealistic expectations. Since 6 normalized my AHI and I achieved REM sleep at 7..maybe a setting of 6.5 will do the trick. I'm not sure how much my mask is leaking. I have it pretty tight- to the point that my face is red in places where the mask rests. That's why I thought maybe a higher pressure setting might do the trick in case there is a small leak.


(08-26-2012, 12:00 PM)eaglett1111 Wrote: HI Biglar - wanted to put my two cents in and welcome you, too.

I am relatively new here, having used the CPAP for a month now. I can attest to what the previous posters have said about it being a roller coaster for awhile. I have yet to sleep through the night, but my AHI is way down and I know the sleep I am getting is good sleep.

I use a nasal mask, and though it's the only one I've ever used so I am by no means a great judge, it does work for me. I don't know what I would do with a full mask. There are some nights when I feel like I can't breathe with the mask, and those nights I have to use the ramp and ease into it. My pressure is at 9. There are also some nights when I have to concentrate on the inhale through the nose and exhale through the mouth for awhile until my nose opens up (yes I'm using the nasal gel spray, but it doesn't always work). That said, I always end up adjusting to it.

Life isn't perfect as a hosehead. I only got two hours sleep last night, because I was fretting about a friend whose brother had just been killed in a horrific accident. Actually as I'm writing this I realize I need to call someone for a debrief myself. She found out when I was on the phone with her, and her hysterics from a thousand miles away still send my heart to my feet.

Ahh... anyhow. Sorry for that. I know sleep studys are not cheap, even with insurance. I'm wondering if you could call your DME and just try the nasal mask for a couple of weeks, to see if that would help.

Can you still breath out of your mouth with the nasal pillows? One of the things that is frustrating with the full face mask is that I feel like I am fighting to exhale. Especially since I turned up the pressure.

(08-26-2012, 01:12 PM)PaulaO2 Wrote: I agree with the others on the mask. A full face mask should be the final mask, not the first.

If you snore with your mouth open, that may be why they tried it but there's other ways. Many use a nasal mask and then a chin strap to help hold the mouth closed. After a while, many are able to stop using the chinstrap altogether.

I also agree to the second sleep study. You are too new at this to guess on your own.

Losing weight may decrease your need for a CPAP. It may not. Either way, it's overall a good thing to lose the weight (says she who is obese).
I agree. I think it has gotten this bad because I have gotten so heavy. I think that I have gotten so heavy because I have been in this fog and the only good feelings I have is when I eat something horrible for me that tastes good. I am also on the road every other week for work and that seems to not hep. I want to lose weight- I just need the energy. The way I feel now- little tasks like cleaning the house feel like such a choir- No pun intended.

(08-26-2012, 02:00 PM)mjbearit Wrote: Hi Biglar! Welcome
First of all, congratulations on making the decision to take this seriously. You may have just extended you life and made it bearable all at the same time! Smile
I have to agree with what has been said so far. Many of us on the board are married or living with someone and I don't think a single person who has used their machine long enough for it to improve their life will tell you that they are concerned about how they look while they are sleeping! Now in the old days my wife hated my machine because they used to make quite the racket so it would interrupt her sleep! It was a bad time then! The new machines fix that problem and never once have I had her tell me that she hated my mask. And you should have seen some of the masks years ago! It may not be the sexiest of items, but frankly when you let it go too long you will be too tired for anything, even a little cuddle at night. Don't sweat the looks! You'll both get over it!
I have gone through a few different mask designs but ever since the nasal pillows came out, way back with the Adam circuit, I have been hooked on nasal pillows! They work far better for me! They do not leak nearly as much as the other masks I have tried. Some folks can't use them, but for me, I think they are great! Especially nowadays as they are so light and unobtrusive!
As far as advice goes, if you sleep better on your back with a few pillows propping you up, then go that route and wear the CPAP too! Bottom line is that you need to do whatever you have to do in order to make that CPAP bearable! Take it from someone who bailed on treatment for many years. I am back because the alternative sucks! Since I have been back I don't fall asleep at my desk (how I ever pulled that off is a miracle!), I don't have to pull the car over and get coffee every hour, the fog is not nearly as bad as it used to be, and most importantly, my heart rhythms have stabilized a lot! Even if you lose the weight and become a french swimsuit model, don't think you have no more sleep apnea! You do another study before you put that machine away! It's not gone, just controlled! Good luck and feel free to ask anything you like. Lots of folks with lots of experience. We may not always agree on everything, but we can at least tell you what works for us!

Thank you so much for the info! I guess I should be clear. My fiance is wonderful about everything. She was even okay with me turning on the light and attempting to change the pressure setting when she was trying to sleep. The point I was attempting to make (quite poorly I might add) was during the original sleep study my anxiety was at an all time high with thoughts of what she would think and how I got to this point (etc, etc) She has been 100% supportive and great with it. It was my own hang up the first few nights.
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#15
ThanksThanksI-love-Apnea-BoardI-love-Apnea-BoardI-love-Apnea-BoardThanksThanks


Thank you all for your responses and suggestions. I am calling to schedule another sleep study ASAP and I am going to look into getting a new machine APAP and/or mask. I definitely want a machine that records information if mine doesn't.

Again thank you guys so much!!!
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#16
(08-26-2012, 03:53 PM)zonk Wrote: IMO as you have not slept well at the sleep lab to be titrated with the correct pressure, You ought to be using an auto machine which can control your apnea in all sleeping positions. Which System One machine are you using? The Auto and Pro are data capable machines and the Plus is not. also the 50 series is compatible with SleepyHead software and the 60 series with the heated hose is not.

The name if my machine is a Phillips Respironics REMstar System One 150P is the model number sleepyhead pulled off of it.
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#17
(08-26-2012, 06:01 PM)biglar831 Wrote: 1. The type of machine I have is a Phillips Respironics REMstar System One 150p. Serial Number P05804456. It doesn't appear to record much information.

Call your doctor's office and ask them to prescribe a fully data-capable APAP, such as the ResMed S9 Autoset or equivalent. You need this because they weren't able to determine the correct pressure for you during your sleep study. Call the company that provided your CPAP machine and tell them the same thing. If you can't get a APAP, at least get a fully data-capable CPAP such as the Philips Respironics Remstar Pro with C-Flex. Again, with a machine like this you can use the data it generates to have your doctor make adjustments to the pressure.

Quote:When sleeping I tend to breath out of my mouth and I seem to be congested at night.

Tell your provider the mask is not working for you and you want to try a nasal mask with a chinstrap.

If necessary, call your insurance company and tell them about these issues.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#18
Quote:The point I was attempting to make (quite poorly I might add) was during the original sleep study my anxiety was at an all time high with thoughts of what she would think and how I got to this point (etc, etc)

Yup. My mind had me running in circles with anxiety when my OSA was untreated.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#19
(08-26-2012, 06:32 PM)biglar831 Wrote: The name if my machine is a Phillips Respironics REMstar System One 150P is the model number sleepyhead pulled off of it.
This is a very basic machine and if not mistaken does not have CFlex (exhale pressure relief). No efficacy data, It does not help you or help your doctor to know how the therapy is working beside how many hours that you,re using the machine each night. My advice is ask your doctor for ResMed S9 machine (AutoSet or Elite) preferably S9 AutoSet (No Escape in the name) it can function in either CPAP/APAP modes, data capable and supported by readily available software. The S9 is the best machine for newbies, better and clearer efficacy data display on the machine screen including breakdown of AHI and unintentional mask leak. The prescription should specify the type of the machine for example:
S9 AutoSet - pressure range 7-12, humidifier, climate line, cleanable water tub (sometimes its optional), mask of choice and DISPENSE AS WRITTEN. The DME is under legal obligation to gives you whats the doctor ordered.
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#20
Hi Biglar! I am so happy to hear that you are taking CPAP seriously. As a sleep technologist, I am a little frustrated at how rushed some techs seem to be with masks. Did they try a chinstrap on you in conjunction with a smaller mask? Looking through your study results, it looks like the doctor chose the pressure of 6 because it causes had the best outcome, however, without REM supine, that pressure may not be helpful at all. I can have a patient be at a pressure of 6 or 7 on their back and be fine UNTIL they hit REM. That same guy who may need a 6 or 7 on their back in NREM (non REM) may be a 12 or 13 in REM. So going back to have a sleep study dedicated to PAP is a good idea.

If you are having difficulty tolerating the pressure, the technologist or nurse should try C-Flex or even BiPAP. That is what I would have done. A good tech should make you feel at ease and comfortable and should be able to answer all of your questions and be part of your support system there. Using the mask now will help you acclimate to the mask/pressure at the lab and you should have a better study. If the pressure is under titrated, you will probably have better sleep on your side. Good luck on your next study! You'll do great and keep using that CPAP.
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