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2 full years of CPAP usage - zero improvement
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Route67 Offline

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Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #1
2 full years of CPAP usage - zero improvement
Was diagnosed with OSA in June of 2012.

Got my Resmed CPAP machine in August and same as the majority of us had a hard time getting used to the mask and sleeping with it was difficult. I solved that problem by October or November of 2012 and have been using it faithfully ever since.

I am nowhere. Still waking 3 or 4 times a night to void. Still feeling like complete garbage during the day, including today; woke up at 6am after 3 voids and going to bed at midnight. I would absolutely love to get a solid 8 or 9 hours; I have had a handful in 2 years but that's it.

I go to bed every night saying to myself "maybe tonight will be the night" but it never is. The bed is my enemy and has been for more than three years now.

Yes, I have a sleep doctor, since summer of 2012; he told me 10 months ago that I was "cured" as long as I wear my mask to bed, based on the readings from the media card which slides into the back of my machine. Sent me to a urologist, my 3rd in three years; he sent me back to the sleep clinic after voluminous testing found nothing wrong with my prostate or kidneys. I have also seen a Nephrologist, a doctor who only works on kidneys, but he also said I was fine after equally-thorough testing.

It's impossible to ever get into stage 4 sleep if you have to wake every 2 hours or less to void. I do not drink coffee or tea, never have, and do not drink any type of alcohol. I keep my daily intake of soda and even water down to a very low level, perhaps dangerously low, because I so dread those multiple trips to the toilet during the overnight hours. Nothing helps.

I am going insane and feel like total crap every day, including right now. I am seeing a new sleep doctor on September 2nd, hoping for some kind of help. I have tried adjusting the settings on my machine but nothing ever works; I will ask her to set it at the highest possible levels, because despite the fact that everyone tells me I am fine I haven't had a really good night's sleep for multiple nights since 2010 or so.

Considering spending 1000 dollars for one of those dental mouthpieces, heck I would pay 5000 if I thought it would work. I wear the mask VERY faithfully but have gotten nowhere. Anyone else here have the same problem?
(This post was last modified: 08-23-2014 06:06 AM by Route67.)
08-23-2014 06:02 AM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #2
RE: 2 full years of CPAP usage - zero improvement
This is my problem, explained very well by a sleep Doctor.....when I mentioned peptides to my current doctor he had no idea what I was even talking about; I will print this out for my next doctor but we all know how much these people hate us getting things off the internet;


''Too Many Bathroom Trips At Night? See A Sleep Doctor First
Steven Park MD
There have been numerous studies that show that a major reason why people go to the bathroom to urinate frequently are doing so not because of irritable bladders or enlarged prostates, but due to an underlying sleep-breathing problem. Here’s another study that showed that about 58% of men with nocturia had obstructive sleep apnea. When treated for sleep apnea, nocturia can be significantly improved, if not completely cured in many cases. Prescription medication for this problem can’t even come close to these results.


It’s been shown in numerous studies that the reason why you wake up is not because your bladder is too full—it’s because you’ve stopped breathing and you think your bladder is full, but it’s not. Here’s what happens: Every time you stop breathing, blood flow to the heart diminishes, but once you start breathing again, blood rushes back in your heart which dilates the heart chambers, making your heart think that you’re fluid overloaded. The heart then makes a hormone called atrial natriuretic hormone (or peptide), which makes your kidneys make more urine. At a certain point, with even a small amount of urine, you’ll feel like you have to go but only after you’ve woken up after an apnea event. Notice too, that urine volumes are typically not that large.

The thing that get me upset about all this is that despite all that we know about urinary frequency and its’ connection to obstructive sleep apnea, PCPs and urologists haven’t changed their ways at all. They continue to place patients on medications that help to relax the bladder, shrink the prostate, or even do surgery, which is like placing a band-aid. Treating with medications may help people go to the bathroom less often, but it won’t prevent cardiovascular morbidity and mortality.''
(This post was last modified: 08-23-2014 06:11 AM by Route67.)
08-23-2014 06:10 AM
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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: #3
RE: 2 full years of CPAP usage - zero improvement
HI Route 67..

Apart from feeling poorly - can you give us some feeling for your CPAP results? - possibly put some details in your profile

Re peptides - my General Practitioner told me about this phenomena when i was worried it meant something far more sinister than OSA.

It stopped with my first night on CPAP.

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.
08-23-2014 06:25 AM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #4
RE: 2 full years of CPAP usage - zero improvement
Honestly I have no idea what to tell you about my results.....they have been read a handful of times by the people at the DME store and my sleep doctor, they all tell me my readings are perfectly normal and I don't need any adjustments. I am on auto setting with the top pressure topping out at 18.

I tried a nasal ''pillow'' but that didn't do anything, I am thinking this time I will try the full face mask which covers the mouth as well. I have a dozen nasal masks and have rotated through all of them at various times.

Funny your GP knew about the peptides release; when I mentioned it to my sleep Doc he had no clue what I was even talking about.
08-23-2014 06:39 AM
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yaggy_bear Offline

Members

Posts: 15
Joined: Aug 2014

Machine: ResMed A10
Mask Type: Full face mask
Mask Make & Model: ResMed Large
Humidifier: unsure
CPAP Pressure: 18
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #5
RE: 2 full years of CPAP usage - zero improvement
Yeah my frequent bathroom trips stopped with my first night on CPAP as well..

I feel for you mate, not a good situation.

Post some results from your SD card here if you can.. or scan in any graphs or results you have for us to check out.
08-23-2014 06:49 AM
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justMongo Offline

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Posts: 3,840
Joined: Sep 2013

Machine: ResMed VPAP Auto (S9)
Mask Type: Full face mask
Mask Make & Model: ResMed Mirage Quattro
Humidifier: ResMed H5i
CPAP Pressure: 18 IPAPmax - 11 EPAPmin, PS=5
CPAP Software: Other Software

Other Comments: μολὼν λαβέ

Sex: Male
Location: Калифорния

Post: #6
RE: 2 full years of CPAP usage - zero improvement
Route66+1:
You should start doing your own evaluation of your APAP therapy to determine if it is adequate.
BTW -- ask for insist on getting copies of all medical reports; including your polysomnography report.

Then look to other conditions that might make you feel lousy:
1) Medications
2) Lack of exercise
3) Weight
4) Diabetes
5) Depression

Most of us old geezers never get to stage 4 sleep; we're lucky to get to 3.
Do you mind if I ask your approximate age?

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.
08-23-2014 07:42 AM
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Stroppy Offline

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Joined: Jul 2014

Machine: F&P Icon
Mask Type: Full face mask
Mask Make & Model: F&P
Humidifier: F&P
CPAP Pressure: 17cm
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: Australia

Post: #7
RE: 2 full years of CPAP usage - zero improvement
(08-23-2014 07:42 AM)justMongo Wrote:  Route66+1:
You should start doing your own evaluation of your APAP therapy to determine if it is adequate.
BTW -- ask for insist on getting copies of all medical reports; including your polysomnography report.

Then look to other conditions that might make you feel lousy:
1) Medications
2) Lack of exercise
3) Weight
4) Diabetes
5) Depression

Most of us old geezers never get to stage 4 sleep; we're lucky to get to 3.
Do you mind if I ask your approximate age?


Great advice here. Diabetes is certainly worth testing for if he is still experiencing the need to void all the time at night.
08-23-2014 09:17 AM
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justMongo Offline

Monitors

Posts: 3,840
Joined: Sep 2013

Machine: ResMed VPAP Auto (S9)
Mask Type: Full face mask
Mask Make & Model: ResMed Mirage Quattro
Humidifier: ResMed H5i
CPAP Pressure: 18 IPAPmax - 11 EPAPmin, PS=5
CPAP Software: Other Software

Other Comments: μολὼν λαβέ

Sex: Male
Location: Калифорния

Post: #8
RE: 2 full years of CPAP usage - zero improvement
Considering the workups, one would hope they would have caught untreated diabetes.
Sometimes doctors just miss the obvious.
A friend of mine (54 years of friendship) recently dx'ed with DM-II.
His doc ran an HgA1C and it was nearly 10%. A multi-check urine test strip should have caught that as the estimated average blood glucose is above the urinary threshold of ~200 mg/dL.

I have read that untreated OSA increases insulin resistance.

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.
08-23-2014 10:59 AM
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retired_guy Offline

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Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #9
RE: 2 full years of CPAP usage - zero improvement
Given it sounds like they've got your pressure jacked up a lot, it is very possible they have traded Central Apneas for your Obstructive Apneas. Or, you've been on the wrong machine all along.

What you really, really, really need to do is download and install the Sleepyhead software from the link at the top of this page. Then you need to import your very own data into the software so you/we can start seeing what's really going on. Slide the little switch on the side of the sdcard to the "lock" position before you stick it in the computer.

Ok... What is needed to know, is what is your current AHI? Of the events recorded, how many (%) are OA, CA, Hypops... What is your minimum/maximum and average pressures? What are your leak numbers?

All this, and even more, can be yours once you download and run the software.
08-23-2014 11:25 AM
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PaytonA Offline
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Posts: 3,005
Joined: Dec 2013

Machine: ResMed S9 VPAP Auto
Mask Type: Full face mask
Mask Make & Model: Resmed Mirage Quattro
Humidifier: H5i(distilled-top up)
CPAP Pressure: VAuto MinE14.0 MaxI 20.6 PS4.0
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Orange County,California

Post: #10
RE: 2 full years of CPAP usage - zero improvement
Route 67,

My first impression of what you explained and without seeing any data (so its a WAG) was that your leaks are high enough to make your therapy a non-starter. It would take data to know this. Could you provide us with some?

Best Regards,

PaytonA
08-23-2014 11:35 AM
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