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Help with the Diagnosis
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IAmBleedingOut Offline

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Posts: 2
Joined: Jul 2014

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: ResMed
Humidifier: H5i
CPAP Pressure: Unsure
CPAP Software: Not using software

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Sex: Male
Location:

Post: #1
Help with the Diagnosis
Hello Folks,

First time poster and newly diagnosed too. However, I have some doubts about the diagnosis. I will truly appreciate your feedback and insight.

The TLDR version: My question is how effective are the results of the home-test machine when tested for a single night on a especially restless night (restless due to having the machine attached to chest, the ribbon around chest to measure movement, tube in nose, and a pulse monitor on the index finger)?

Detailed version:

The Reason
Recently I started noticing that when I sleep on my back, my airway becomes constricted as if some muscle has collapsed in my throat. Even though I rarely sleep on my back, I mentioned it to my primary care physician. She advised that it was most likely due to the recent weight gain that I have had and would likely go away if I get back in shape. She still referred me to a Sleep Clinic.

The Sleep Study
I saw a technician at the clinic who showed me to to strap a small machine to my chest and the probes that go with it. Following are the details of the machine

1. It was a small sized rectangular black box (size of Apple TV I guess or a little larger than that)
2. There was a ribbon that went over my chest (to monitor chest movement I guess)
3. There was an attachment that went over my index finger (to monitor pulse I guess)
4. There was tubing with two little inlets that I had to put in my nose and tape the tubing

He programmed it for lights-out at 11:00PM and Out-of-bed at 6:30AM.
So feeling like RoboCop, I slept exceptionally poorly, woke up several times during the night, and actually had a sleep-deprivation type headache the next day and returned the device and scheduled an appointment with a sleep doctor.

The Symptoms
At the follow up appointment, the doctor asked me a bunch of questions about sleeping. Most pertinent ones were:

1. Do I Snore? Yes I do. Mostly softly and if I turn on my back, which is rare as I have been cultivating a habbit of sleeping on my sides to minimize snoring (and not disturb the wife) and most recently after my throat starts to collapse in sleep and I wake up.
2. Do I feel tired or sleepy during the day? Nope. Only feel tired or sleepy when I do not have enough sleep (have a baby so some nights are worse than others) or if I am too physically exhausted when I go to bed (like after a day spent hiking)
3. Does my wife hear me snoring? Yes she does some times. Does she feel like I stop breathing? not really sure as I do go quite when I stop snoring.
4. If I have hypertension or other conditions? No.

She made me say Aaaaa! and proclaimed my airway naturally narrow after examining it.

She also made me bite a few times and confirmed that my lower-jaw sits behind the upper jaw.

The results
The results from the nightmare machine were following:

• Out of some 450 recorded minutes, time in supine position was 0.5%
• Snoring was observed
• AHI of 20 per hour
• ODI of 22 per hour
• Apneas: 19 obstructive; 130 obstructive hypo, 2 central, and 5 mixed
• Minimum Oxygen Saturation: 79%
• Mean Oxygen Saturation: 94%
• Total time with less than 90% oxygen saturation: 3.2 minutes
• All leads to the conclusion: Moderate Obstructive Sleep Apnea

The Options
She gave me following treatment options to decide from:

1. Do Nothing: Not recommended but she said that statistically speaking my Apnea at this stage was not at the level to cause the cardio and other issues associated with severe Apnea. Also and option because I did not seem to be suffering from lack of energy. However, if I go this route, I should regularly get tested as Apnea likely to get worse as I age (I am in early thirties)
2. Get a Dental Device: Pushes lower jaw out, some 40% success rate, can de-shape the jaw over long term. around a thousand bucks after insurance and what not
3. Some soft tissue surgery UPAP or APAP or something like that to tone the tongue and muscles to open up the airway. Success rate around 50-65%. A decent chance of Apnea coming back as I age (as muscles de-tone). It will be a free operation (God Bless Canada!)
4. Jaw Bone Reconstruction Surgery to basically break my jaw bones and let them heal to give me a “perfect” bite to open my airway: Relatively new procedure (first generation with this treatment still alive). Success rate in high 80%. Very low chance (but a chance nonetheless) of it returning with age as its the bone that is fixed. Some CAD 18,0000 in cost as not covered by government (insurance may cover some portion or may not)
5. CPAP: Insurance will cover all cost of the machine and will replace it every 5 years and masks and stuff as often as needed or recommended by manufacturer.

The Decision
I asked for a one month trial of the CPAP machine: They gave me ResMed S9 Auto with H5i Humidifier, climate controlled tubing, and a Nasal mask (Mirage FX).

I also asked to set up an appointment with the surgeon to discuss soft tissue surgery in more detail.

The CPAP Experience
First night, I put it on for a couple of hours but found the breathing out extremely uncomfortable and after some two hours, took it off and slept soundly afterwards, waking up refreshed as usual.

Next night, I scolded myself for the lack of discipline to really give the machine a chance and kept it on the entire night. Have had the mask on for 3 full nights now. Have gotten used to the mask and the machine now but there are two issues:

1. I wake up with an extremely dry mouth - I have found that its due to having my mouth open during sleep. I will get a jaw strap or a full mask on my weekly checkup for trial and see how those solutions work.
2. I have kind of gotten used to the machine and I took a break for one night from it. I do not feel ANY MORE energy whether I sleep with or without machine. Makes it demotivating to have to put on the mask every night for some possible long-term benefit with no real short-term benefit.

The New Results
Sleepy head has stated that, counting my two hour first night and 3 full nights with the machine, I have an AHI of around 2. So seems all is good.

The Question
As I were never experiencing any troubling symptoms of sleep apnea, I have been feeling quite sorry for my self and kind of depressed that I have to sleep with a mask on for the rest of my life.

So my question for you experienced folks is that is it possible that I may have had a false positive with the exceptionally crappy night that I had with the sleep study machine? I mean is it like the digital blood-pressure machines because they tell you crap with just attempt (and values change with different types of machines)? or is it something more accurate and it is pretty much done deal that I have sleep apnea and either should get a surgery with mixed results and chances of apnea coming back or sleep with a mask on?

Thanks for reading.. I kind of feel better after posting all of this stuff. Looking for your feedback earnestly.
07-30-2014 01:42 AM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #2
RE: Help with the Diagnosis
Hi IAmBleedingOut
Apnea hypopnea index (AHI) http://www.apneaboard.com/wiki/index.php?title=AHI
AHI Rating
<5 Normal (no Sleep Apnea)
5-15 Mild Sleep Apnea
15-30 Moderate Sleep Apnea
>30 Severe Sleep Apnea

AHI 20 = Moderate Sleep Apnea

The home test is pretty accurate, down the track, you might have the test in sleep lab if covered by insurance

CPAP is the golden standard treatment for sleep disordered breathing and should be tried in earnest before looking at other options
Surgery is not guaranteed to works and once done its not reversible

Find out if CPAP therapy can be a life saver for people with obstructive sleep apnea (OSA)
http://www.apneaboard.com/forums/Thread-Can-CPAP-Save-Your-Life
07-30-2014 02:29 AM
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Moriarty Offline

Advisory Members

Posts: 270
Joined: Jul 2012

Machine: Respironics REMStar 50 Series Auto
Mask Type: Nasal pillows
Mask Make & Model: Fisher & Pakel Pilairo Q
Humidifier: Respironics System One
CPAP Pressure: 8.5-20 (average 9.4)
CPAP Software: SleepyHead

Other Comments: Image above is my CPAP machine...

Sex: Male
Location: Toowoomba - Qld - Australia

Post: #3
RE: Help with the Diagnosis
Hi IamBleedingOut...

Welcome to the forum.
I agree with Zonk's post... especially about the reports from people who have the surgery. It does not seem to be a permanent (or in some cases even an effective) treatment for OSA.

One's life partner is generally the best guide for OSA. If they report that you snore, and stop breathing afterwards and restart with a gasp then the only discussion to be had is how severe is the OSA.

Other indications can be increased night time urination and daytime sleepiness.

A naturally narrow airway will not necessarily cause snoring and periodic cessation of breathing if you are not overweight and are fit.

I think from the figures and your description that you might experience OSA or are likely to develop it.

Cheers

David

Disclaimer: The 'Advisory Member' title is a Forum thing that I cannot change. I am not a doctor and my comments are purely my opinion or quote my personal experience. Regardless of my experience other readers mileage may vary.
07-30-2014 03:08 AM
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archangle Offline
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Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #4
RE: Help with the Diagnosis
The dental device is pretty much quackery. Maybe a little help to some people, but you don't really have any way to know whether it's working or not unless you do another sleep test while wearing the device.

UPPP is dangerous quackery. Not very effective. The doctors declare "success" if it reduces your apnea index by 50%. Bad side effects and painful. Your apnea usually comes back.

Jawbone surgery, new, untried quackery. The "success" rate is very suspect. Is this another 50% reduction=success, even though you're not cured? What are the long term complications? Plenty of people have jaw problems without having had the structure of their jaw tampered with by some surgeon with delusions of grandeur. Once done, you don't know whether it's working unless you have another sleep test. Very painful, long recovery.

CPAP. Works. If there are complications with CPAP, you stop using it, and the complications go away. (Other than the health problems from untreated apnea) If you get a proper CPAP machine, you basically get a mini sleep test every night. The machine will detect apneas and let you know if it's working. Read the links in my signature line to figure out how to avoid getting screwed by a DME (CPAP seller) with a non-data capable CPAP machine.

What are your pressure settings, and what pressure does the machine auto adjust to?

The apnea numbers on the S9 are probably pretty accurate, but you can look in more detail with SleepyHead and see if you really stop breathing, for how long, and how completely. The pressure changes the machine makes also give you some indication of whether you have apnea or not.

See if you can post a screenshot of your daily report from SleepyHead.

The main risk of incorrect data from the in-home sleep test is if it was recording data when you were not asleep. Normal waking breathing may show up as apneas because your breathing isn't regular enough. Analyzing your AutoSet data will give you some idea whether you really have apnea. If necessary, sometime later, you can probably set your AutoSet pressure low and verify that you actually do have apneas at lower pressure.

See if you can get the full report of your sleep study, especially including graphs of when you had the apneas. You want to figure out whether you were really asleep when the apneas happened.

If you're not sure you have apnea, a true sleep test is an in-lab PSG sleep test with EEG probes. That's the only test that can tell for sure that you were asleep.

Do not under any circumstances consider surgery unless you have a real in-lab PSG sleep test.

As for not feeling bad, your body adjusts somewhat to living with apnea, but there is long term damage. You may not feel the effects until years of damage accumulate and your apnea gets worse. It's a bit like smoking cigarettes.

As for not feeling better, sometimes it takes a while for your body to adjust to the new normal.

I'll say DO NOT do the surgery unless you try CPAP for six months at least.

If you do stay with CPAP, be careful that they don't switch you to a different type of CPAP machine. They might switch you to a cheaper but more profitable machine that doesn't record as much data.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
07-30-2014 04:11 AM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #5
RE: Help with the Diagnosis
By co-incidence home testing is on the news tonight
From channel 9 6PM tonight news: we examine the recent surge in testing devices.
Having trouble sleeping is an age old problem but recent studies into sleep difficulty have almost doubled in the country. New figures are suggesting that Australians are increasingly utilising home testing devices to diagnose sleeping disorders
[Image: 10247486_737171866330653_3186039173747073426_n.jpg]
07-30-2014 04:21 AM
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NickDanger Offline

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Machine: Resmed S9 Autopap
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Post: #6
RE: Help with the Diagnosis
The oxygen desaturation numbers and the large number of apneas and hypopneas combined with the history of snoring (YOU say it is soft snoring, but you also talk about being worried about your snoring disturbing your wife), suggest that the diagnosis is accurate. I would avoid the surgeries (I had the UPPP and the hyoid/genoglossal advancement surgeries - the effect was to lower the pressure needed for CPAP, they didn't "cure" the apnea). The dental appliances can mess up your bite (those who use them frequently talk about increased jaw pain and feeling as though their bite takes several hours to return to normal after removing the appliance).

I am surprised that your physician does not seem worried about oxygen saturations in the high 70's - I'm not a physician, but I can't understand how living with that for an extended period doesn't cause damage to the body.
(This post was last modified: 07-30-2014 09:09 AM by NickDanger.)
07-30-2014 09:08 AM
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trish6hundred Offline

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Posts: 6,450
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: #7
RE: Help with the Diagnosis
Hi IAmBleedingOut,
WELCOME! to the forum.!
I wouldn't get the surgery because they are risky and there is no guarantee that you won't have to use the CPAP machine in the end anyway.
As far as your dry mouth goes, try a chinstrap. That will help you keep your mouth closed. You could also turn your humidifier up a notch or two and see if that will help.
Just stick with it, CPAP can take some time to get used to but it does get better as you use it.
Best of luck to you and hang in there for more suggestions.

trish6hundred
07-30-2014 10:18 AM
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IAmBleedingOut Offline

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Posts: 2
Joined: Jul 2014

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: ResMed
Humidifier: H5i
CPAP Pressure: Unsure
CPAP Software: Not using software

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Sex: Male
Location:

Post: #8
RE: Help with the Diagnosis
Hey Everyone,

Thanks a lot for wonderful links and feedback. I am definitely weary of the surgery now, even if it is for free. I will try to stick with the machine.

As for the DME, they are currently going to charge me $2350 (Canadian) for the ResMed S9 Autoset with H5i Humidifier and the mask and tubing. Insurance will cover up to $2,000. So unless I shop around, I will have to pay $350 out of pocket. Technician was mentioning that they will give me an additional year of warranty (over manufacturer's 2 year warranty) and free filters and tech support and what not.

Archangle I am attaching the daily report to this message (last graph won't fit in my attachment size. I will upload that as subsequent post)

Thanks


Attached File(s) Thumbnail(s)
               
07-30-2014 07:56 PM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #9
RE: Help with the Diagnosis
(07-30-2014 07:56 PM)IAmBleedingOut Wrote:  As for the DME, they are currently going to charge me $2350 (Canadian) for the ResMed S9 Autoset with H5i Humidifier and the mask and tubing. Insurance will cover up to $2,000. So unless I shop around, I will have to pay $350 out of pocket. Technician was mentioning that they will give me an additional year of warranty (over manufacturer's 2 year warranty) and free filters and tech support and what not.
This is as good as it get, they can provide on-going support and trialling different masks

Nothing unusual about the graphs, looks good to me
The most important is leak below the red line (24 L/m) and well controlled for most of night, those few spikes might indicate mouth leaks
I suggest trying chinstrap to helps with those mouth leaks
07-30-2014 08:28 PM
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Moriarty Offline

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Posts: 270
Joined: Jul 2012

Machine: Respironics REMStar 50 Series Auto
Mask Type: Nasal pillows
Mask Make & Model: Fisher & Pakel Pilairo Q
Humidifier: Respironics System One
CPAP Pressure: 8.5-20 (average 9.4)
CPAP Software: SleepyHead

Other Comments: Image above is my CPAP machine...

Sex: Male
Location: Toowoomba - Qld - Australia

Post: #10
RE: Help with the Diagnosis
(07-30-2014 07:56 PM)IAmBleedingOut Wrote:  .....As for the DME, they are currently going to charge me $2350 (Canadian) for the ResMed S9 Autoset with H5i Humidifier and the mask and tubing. Insurance will cover up to $2,000. .

That is a good deal...

In Australia the prices seem to be about the same in dollars but it seems that the best insurance companies only give a flat $500 for the machine and $0 for consumables including masks, filters, hoses etc.

Cheers

David

Disclaimer: The 'Advisory Member' title is a Forum thing that I cannot change. I am not a doctor and my comments are purely my opinion or quote my personal experience. Regardless of my experience other readers mileage may vary.
07-30-2014 11:07 PM
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