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New member here - Love the site already - Need some advice
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biglar831 Offline

Members

Posts: 14
Joined: Aug 2012

Machine: Phillips Respironics REMstar Auto A-Flex
Mask Type: Full face mask
Mask Make & Model: Respironics Amara
Humidifier: System one
CPAP Pressure: 8.0-15.0
CPAP Software: SleepyHead

Other Comments: This place is the best

Sex: Male
Location: Cleveland, Ohio

Post: #1
New member here - Love the site already - Need some advice
As someone who participate in a few different entertainment and sports forums, I have to say that this board is a godsend! Whoever created it, thank you very much. It is nice to talk with other people diagnosed with Sleep Apnea. Well here is my story:


About three months ago I went to my doctor for a routine checkup. We got to talking about my weight (i'm 5'8 and 300 pounds) and we talked about me joining a gym. I explained that I barely have enough energy to work and keep up my home. He asked me how I have been sleeping and I told him I feel like I haven't had a good nights rest in years. He sent me for a sleep study. He said that apnea and weight gain can go together and if you have apnea, and we treat it, you will be more likely to lose weight.

At the sleep study, they hooked me up to what seemed like a 1,000 wires and told me to go to sleep. She said she would wake me and fit me for a mask if I had it and it was severe enough. I had a hard time falling asleep, but when I finally did the lady burst into my room and said I had sleep severe sleep apnea. She gave me the mask and left. By nature, I worry a lot. Not knowing anything about sleep apnea my heart was racing. I started asking questions "how did I get to this point?" "I can't believe I have gotten so fat that I now need this to sleep" "How will me fiance look at me having to wear this to bed every night". Anyway, long story short, it took me hours to fall back asleep. It appeared when they first fit me for the mask that they had the pressure so high that it was causing me to swallow air cause I started burping. I asked her to turn it down as I was afraid that it would start coming out the other end if this keeps up, and she wouldn't want to deal with that.

I FINALLY fell asleep for what seemed to be about 30 minutes when she came in and said that time was up. She recommended that I participate in another sleep study. Even though I have insurance, it still cost me a decent amount so I said I would look into it and left.

I will copy and paste the results of my sleep study at the end of my long boring story. I was given a Phillips Respironics REMstar with a system one heated humidifier. I have a full face mask ResMed Mirage Quattro. They had set it to 6 cm H20. I tried using the system, but I would wake up gasping for air. It felt like there just wasn't enough air coming into my mask and it was making things worse. I threw all the CPAP crap back in the bag and said, "*Screw* it"

Fast forward to yesterday- I spoke to a close friend that almost died because of his undiagnosed sleep apnea. His brain basically fell asleep while he was awake and driving. He drove into a six lane intersection. Luckily they survived but that story was enough to scare me into taking this more seriously.

I found out how to change the pressure (thanks to this website) so I changed it to 7.0 I made it through the night but had to get up to urinate four times which I have been told is a symptom of apnea.

Since I was diagnosed- I have found that if I sleep on my back (without the CPAP machine) and use a bunch of pillows I sleep a little better, dream better, and have to get up to urinate only once.

I guess I am a little concerned. Do you think I need to up my pressure even more? Do you think I was still having apnea episodes and that is why I had to get up so many times last night? Did changing the pressure make my apnea worse? I have read about a lot of experiences on this forum and a bunch of people had peaceful restful sleep their first night. I want that so bad!

I guess I am looking for some advice. Obviously, I will be calling the doctor to arrange to have another sleep study done. I usually will have to wait about 45 days to get in for a sleep study so I am looking for some tips to help me survive and maybe even have a good nights rest prior to the sleep study. Here are the results of my sleep study:

Sleep history: The patient is a 31 year old male with a history of snoring,
choking/gasping while asleep, excessive daytime sleepiness and daytime
fatigue. A split-night polysomnogram study was performed. A medium ResMed
Quattro Fx full face mask was used during the titration portion of the study.
Past medical history: GERD
Medications: Omeprazole
Sleep procedure: PSG w/CPAP or Bilevel PAP 4 or > addtl param PC (95811)

Procedure: The study was attended continuously by a sleep technologist. The
monitored parameters included: left (E1-M2) and right (E2-M1) EOG, frontal
(F3-M2 & F4-M1), central (C3-M2 & C4-M1) and occipital (O1-M2 & O2-M1) EEG,
mental and submental EMG, left and right anterior tibialis EMG, single ECG
waveform, snoring, continuous airflow with thermistor, nasal pressure
transducer, and PAP Interface, chest and abdominal effort, oxygen saturation,
EtCO2, and body position via video monitoring.

Hypopnea definition: The nasal pressure signal excursions (or those of the
alternative hypopnea sensor) drop by =50% of baseline. The duration of this
drop occurs for a period lasting at least 10 seconds. There is a =3%
desaturation from pre-event baseline or the event is associated with an
arousal. At least 90% of the event?s duration must meet the amplitude
reduction criteria for hypopnea.

SLEEP ARCHITECTURE:
The study started at 22:50:46 and ended at 06:23:10. Total sleep time was 221
minutes resulting in a sleep efficiency of 51.4% (TRT = 430 m). There were 12
awakenings with a total time awake after sleep onset of 168.5 minutes. The
sleep latency was 38.0 minutes and the REM latency was 161 minutes. The
patient spent 64.5% of sleep time in the supine position. The sleep stage
percentages were 14.9% stage N1, 75.1% stage N2, 0.5% stage N3 and 9.5% REM
sleep. There were 174 arousals, resulting in an arousal index of 47.2. There
were 87 stage shifts.

BASELINE RESPIRATORY DATA:
Snoring was noted. There were 154 respiratory events consisting of 2 apneas
(2 obstructive, 0 mixed, and 0 central) and 152 hypopneas. The patient spent
40.8% of baseline sleep time in the supine position. The apnea-hypopnea index
was 69.7. The back index was 108.9. The offback index was 42.8. The REM index
was 80.0. The non-REM index was 68.4 and the arousal index was 69.7. The mean
oxygen saturation during the first part the study was 94.0%, with a minimum
oxygen saturation of 88.0%. The patient spent 5.9% of sleep time with an
oxygen saturation below 90%. The maximum end-tidal CO2 was 45 mmHg.

REM-Time REM-Index NREM-Time NREM-Index Total-Time Total-Index
Supine 0.0 m -- 54.0 m 108.9 54.0 m 108.9
Off-Supine 15.0 m 80.0 63.5 m 34.0 78.5 m 42.8
Total 15.0 m 80.0 117.5 m 68.4 132.5 m 69.7

POSITIVE AIRWAY PRESSURE THERAPY:
During the second part of the study, CPAP titration was initiated at 02:45:16
and ended at 06:05:57. The patient did have difficulty falling back asleep.
Snoring was eliminated at a CPAP setting of 5 cmH2O. The mean oxygen
saturation during the second part of the study was 96.0%, with a minimum
oxygen saturation of 93.0%. There were 23 stage shifts.


CPAP-BILEVEL SUMMARY:

IP EP TST REM %Sup Apn Hyp Tot SupIdx AHI RAHI ArIdx Nadr Mean SaO2
5 5 09 m 0 m 100.0% 0 5 5 31.6 31.6 0.0 37.9 93.0% 96.0%
6 6 23 m 0 m 100.0% 0 1 1 2.6 2.6 0.0 10.2 96.0% 96.0%
7 7 23 m 6 m 100.0% 0 8 8 20.4 20.4 20.0 17.9 93.0% 96.0%
8 8 32 m 0 m 100.0% 0 0 0 0.0 0.0 0.0 0.0 95.0% 95.0%
9 9 00 m 0 m 0.0% 0 0 0 0.0 0.0 0.0 0.0 -- --

LIMB MOVEMENT DATA:
There were 0 periodic limb movements during sleep, resulting in a PLM-index
of 0.0.

ECG DATA:
The average heart rate during sleep was 65 beats per minute, with a range of
56 to 83. During wake, the heart rate ranged from 57 to 104 beats per minute.

ICSD DIAGNOSIS:
Obstructive Sleep Apnea Syndrome [327.23]

IMPRESSION:
1. Severe obstructive sleep apnea syndrome. Respiratory events were
associated with oxygen desaturations (nadir of 88% on room air).
2. Due to prolonged wakefulness, titration time was relatively short. At a
CPAP setting of 6 cmH2O, the apnea-hypopnea and the arousal indices were
normalized. At this setting, supine sleep was recorded, snoring was
eliminated and the oxygen saturation was maintained above 95%. However at
this setting, there was no REM sleep recorded. Of note the only setting of 7
cmH20 recorded REM sleep but it did not normalize the AHI.
3. Abnormal sleep architecture likely due to respiratory events, PAP
titration and first night effect.

RECOMMENDATIONS:
CPAP 6 cmH20 with humidification for habituation. A dedicated overnight PAP
titration study should be considered.
(This post was last modified: 08-26-2012 09:58 AM by biglar831.)
08-26-2012 09:58 AM
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Bompa Offline

Monitors

Posts: 854
Joined: Mar 2012

Machine: DreamStation Pro
Mask Type: Nasal pillows
Mask Make & Model: Nuance Pro
Humidifier: DreamStation Heated Humidifer
CPAP Pressure: 12.0
CPAP Software: SleepyHead Other Software

Other Comments:

Sex: Male
Location: Falkenburg,

Post: #2
RE: New member here - Love the site already - Need some advice
First of all Welcome aboard !!
You must realize that it takes more than a few nights, and a few adjustments, to get used to and receiving full benefits of a CPAP machine. From personal experience, it took quite some time and severak different mask types to really settle in and use the machine to my benefit.
There are those here that are able to give you better advice than I can.

So again, Welcome and don't give up.
08-26-2012 10:12 AM
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biglar831 Offline

Members

Posts: 14
Joined: Aug 2012

Machine: Phillips Respironics REMstar Auto A-Flex
Mask Type: Full face mask
Mask Make & Model: Respironics Amara
Humidifier: System one
CPAP Pressure: 8.0-15.0
CPAP Software: SleepyHead

Other Comments: This place is the best

Sex: Male
Location: Cleveland, Ohio

Post: #3
RE: New member here - Love the site already - Need some advice
(08-26-2012 10:12 AM)Bompa Wrote:  First of all Welcome aboard !!
You must realize that it takes more than a few nights, and a few adjustments, to get used to and receiving full benefits of a CPAP machine. From personal experience, it took quite some time and severak different mask types to really settle in and use the machine to my benefit.
There are those here that are able to give you better advice than I can.

So again, Welcome and don't give up.

Thank you! I look forward to becoming educated and hopefully helping others at one point. I know from reading this board that patience is the key to success. I am also downloading sleepyhead software. Maybe that can tell me something too. I am trying to stay positive and tackle this thing!

Thanks
08-26-2012 10:19 AM
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Sleepster Offline
Wiki Editor
Moderators

Posts: 4,995
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #4
RE: New member here - Love the site already - Need some advice
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.

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.
(This post was last modified: 08-26-2012 11:03 AM by Sleepster.)
08-26-2012 10:28 AM
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trish6hundred Offline

Advisory Members

Posts: 6,449
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #5
RE: New member here - Love the site already - Need some advice
Hi biglar831, First of all, WELCOME! to the forum.! I just encourage you to stick with CPAP therapy, it can take lots of TIME AND PATIENCE.! Best of luck and of course, feel free to post any questions you have.

trish6hundred
08-26-2012 10:44 AM
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JudgeMental Offline

Advisory Members

Posts: 324
Joined: Feb 2012

Machine: Respironics DreamStation Auto-CPAP
Mask Type: Full face mask
Mask Make & Model: Respironics Amara View
Humidifier: Respironics
CPAP Pressure: 11-14
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Florida USA

Post: #6
RE: New member here - Love the site already - Need some advice
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.

Yesterday is history; Tomorrow is a mystery; Today is a gift; Thats why its called "The Present".
08-26-2012 11:39 AM
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eaglett1111 Offline

Preferred Members

Posts: 52
Joined: Aug 2012

Machine: Phillips Remstar Pro C Flex
Mask Type: Nasal mask
Mask Make & Model:
Humidifier: System one
CPAP Pressure: 9
CPAP Software: Other Software

Other Comments: Software is Encore Basic

Sex: Female
Location: Northern California

Post: #7
RE: New member here - Love the site already - Need some advice
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.
08-26-2012 12:00 PM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #8
RE: New member here - Love the site already - Need some advice
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).

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
08-26-2012 01:12 PM
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lonnieb Offline

Preferred Members-2

Posts: 113
Joined: Jul 2012

Machine: ResMed S9
Mask Type: Nasal mask
Mask Make & Model: Phillips ComfortGel Blue
Humidifier: ResMed H5i
CPAP Pressure: 7 - 13
CPAP Software: ResScan SleepyHead

Other Comments: I intend to live forever. So far, so good:Steven Wright

Sex: Male
Location: Tennessee

Post: #9
RE: New member here - Love the site already - Need some advice
Hi biglar, First of all, WELCOME! to the forum.!
You have already got better info from the very knowledge people here than I can give you and you are so right this is a great forum you are also right to stay with your CPAP as it may safe your life,I can tell you that I went a long time before going to a sleep study and I wish I went a lot sooner after several weeks I did start to sleep better,before CPAP I never sleep much, life for me has changed becouse of the machine I hook up to each night so do your self a huge favor and use it every night and learn all you can about it and how to use it and this is the best place that i know of to learn it.
Sleep-well



All our dreams can come true, if we have the courage to pursue them.
Walt Disney
08-26-2012 01:50 PM
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mjbearit Offline

Preferred Members-2

Posts: 605
Joined: May 2012

Machine: REMstar Auto AFlex DS550
Mask Type: Nasal pillows
Mask Make & Model: RESMed Swift FX
Humidifier: Heated humidifier - 2
CPAP Pressure: 12.5-20
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: So Cal

Post: #10
RE: New member here - Love the site already - Need some advice
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!

As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
08-26-2012 02:00 PM
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