Thread Closed 
SURVEY RESULTS SHOCKING
Author Message
TorontoCPAPguy Offline

Preferred Members-2

Posts: 126
Joined: May 2012

Machine: S9 Autoset II
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro FFM
Humidifier: H5i; Control III Germicide
CPAP Pressure: 12-20
CPAP Software: ResScan SleepyHead

Other Comments: CMS50EW Oximeter; Everflo Q O2 Concentrator; O2 Analyzer; Climate Control Hose (winter)

Sex: Male
Location: Toronto; Southern USA; etc.

Post: #1
SURVEY RESULTS SHOCKING
It is quite apparent that sleep apnea suffers on the board here take their affliction only marginally more serious than those that don't bother to learn of their life-threatening situation.

If you are not using a data collecting APAP machine along with a pulse oximeter that will record all night. If you do not have your AHI down to below 1.0 EVERY night without exception (or at least are heading that way rapidly). If you are poo-poo'ing your situation, rest assured that your tombstone will read "Died peacefully in his/her sleep". The post-mortem, if the bother, will probably say the cause of death was a massive stroke or myocardial infarction. Perhaps even a bleed. What it will not say is that it was the result of a plummet in SpO2, a massive spike in Blood Pressure, breaking off a piece of arterial plaque that made its way to your brain or to your heart.

I can only urge my fellow sleep apnea suffers to LEARN FOR YOURSELVES, contemplate for yourself and above all, advocate for yourself! Do not take ANY MD's word for it. I came out of hospital in 2009 after 3 weeks on life support due to H1N1. I also had sleep apnea and lungs that were now only capable of 65% capacity at best. I also, at some point, wound up with Atrial Fibrillation. Combine AFib, Sleep Apnea, damaged lungs and some of the associated afflictions (cardiopulmonary effusion, etc.) and it was a no brainer to learn as much as I could as quickly as I could. My sleep doc suggested that I knew as much or more than he did about apnea at my last visit. My respirologist was of little use. Ditto my pulmonologist except to write the scrip for all the tests to determine my level of apnea and monitor my cardiopulmonary effusions (water in the sac holding the lungs and heart.... gone now.... thanks to ME)!.

Those that are settling for not knowing what is going on with their body are going to find out soon enough what is going on with their bodies. The lucky ones will survive some time but have a whack of years knocked off life expectancy. The unlucky ones will die relatively young "peacefully in their sleep".

My AHI is virtually 0.0 ever night. I discovered I required a minor amount of oxygen infused into my airline and thence into my mask to keep me down in REM sleep and prevent my SpO2 from dropping below 90% and causing my body to arouse itself, preventing that REM sleep.

I have also taken care of the aFib for now by taking TIKOSYN, a very potent and dangerous medication, but absolutely necessary. Read up on aFib.... if you are not taking care of business you are 10X more likely to develop AFib that the person next to you. And it is nasty, trust me. And life threatening at times. Even with the TIKOSYN and being in normal sinus rhythm I am required to take Warfarin daily for the rest of my life or at least until my doctors and I are firmly convinced that I will not suffer a major spell of any arrhythmias. They kill too.

So, I beseech you to take advantage of this board and other resources on the net to learn of your affliction. Seek medical attention and insist on only the best in equipment that will tell you how you are doing. And get out and buy a Contec CMS50E recording pulse oximeter and use it nightly to determine your SpO2 through the night. The latest version of the CMS50E has bluetooth built in and is very convenient to use. The pulse tone and graph will also tell you if you have any significant arrhythmias. Your heart beat should be regular like a clock ticking and it should be regular in terms of strength as well. Anything other requires an IMMEDIATE visit to your cardiologist... and I would visit afibbers.org to find the best cardiologist/electrophysiologist near you. Your life may depend on it. I can tell you that it took the best in my area to correct my aFib and that my long-time cardiologist was certain that he had things well in hand. Well, it almost killed me and did more harm than good. Advocate for yourself and insist on that referal to the best.... and YOU find out who is the best and check their credentials online.

Good luck to all. Sleep apnea is a piece of cake to resolve compared to the other afflictions it will bring on if not taken DEAD seriously.

Have a friend that snores? Probably a good candidate for a sleep study. Have a spouse that seems to stop breathing during their sleep? RUN, do not walk, to have a sleep study done and get them on the machine that they need.... it may not be an apap machine.... it may turn out to be bipap or whatever. But they need a push. And perhaps you yourself need a push too.

Be healthy. Live to 120. God Bless.

Murray L.

----------------------------------------------------------------------------
Educate, Advocate, Contemplate.
Herein lies personal opinion, no professional advice, which ALL are well advised to seek.
08-24-2012 11:45 AM
Find all posts by this user
TorontoCPAPguy Offline

Preferred Members-2

Posts: 126
Joined: May 2012

Machine: S9 Autoset II
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro FFM
Humidifier: H5i; Control III Germicide
CPAP Pressure: 12-20
CPAP Software: ResScan SleepyHead

Other Comments: CMS50EW Oximeter; Everflo Q O2 Concentrator; O2 Analyzer; Climate Control Hose (winter)

Sex: Male
Location: Toronto; Southern USA; etc.

Post: #2
RE: SURVEY RESULTS SHOCKING
By the way, please excuse my spelling errors. I also wanted to say that you should be having a regular electrocardiogram regardless of your situation and it should be looked at by a cardiologist. If you are still feeling tired after a few weeks/months on successful APAP therapy, you need to be looking to see if your SpO2 is indeed dropping during the night and arousing you multiple times. You need to watch your AHI daily. If you are still tired after what your doctor(s) and you consider to be successful apnea therapy? Your next step is to carefully look for other signs of afflictions such as Atrial Fibrillation or other arrhythmias with some degree of urgency. aFib and other arrhythmias MAY appear as butterflies, heart palpitations, shortness of breath, high blood pressure (hypertension), thyroid issues, fatigue and so on. Get out there and LEARN, CONTEMPLATE and ADVOCATE! God Bless.

----------------------------------------------------------------------------
Educate, Advocate, Contemplate.
Herein lies personal opinion, no professional advice, which ALL are well advised to seek.
08-24-2012 11:54 AM
Find all posts by this user
Podd Offline

Preferred Members

Posts: 47
Joined: Aug 2012

Machine: Resmed S9 Escape
Mask Type: Full face mask
Mask Make & Model:
Humidifier: Specific to Resmed S9
CPAP Pressure: Reduced to 13.5cmh2o
CPAP Software: ResScan

Other Comments: Glad i'm mad, it stopped me from going insane?

Sex: Male
Location: Abingdon-on-Thames (UK)

Post: #3
RE: SURVEY RESULTS SHOCKING
While I agree with most of your comments, sadly in other parts of the world health insurance or unlimited funds do not actually exist and you take what you are given. In the UK the machines are 'Basic' and the support system is virtually non-existant. I have been to the Sleep Clinic only five or so times in thirteen years, disgraceful I totally agree but it is the norm here. You are diagnosed and then cast adrift. I am quite 'bitter' about this, I have a Resmed S9 Escape, even Resmed recommend that on the pressures I use I should be on a Autoset. Even though my sleep clinic is only twelve miles away, if I need a replacement part, I phone Resmed directly and order the part, it is then delivered by post, Resmed is ten miles the other way, as for talking to anybody that is a whole new ball game!
08-24-2012 12:54 PM
Find all posts by this user
PaulaO2 Offline
Wiki Editor
Moderators

Posts: 6,416
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Nuance (non-pro)
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome

Sex: Undisclosed
Location: western NC, USA

Post: #4
RE: SURVEY RESULTS SHOCKING
Quote:It is quite apparent that sleep apnea suffers on the board here take their affliction only marginally more serious than those that don't bother to learn of their life-threatening situation.

If you are not using a data collecting APAP machine along with a pulse oximeter that will record all night. If you do not have your AHI down to below 1.0 EVERY night without exception (or at least are heading that way rapidly). If you are poo-poo'ing your situation, rest assured that your tombstone will read "Died peacefully in his/her sleep". The post-mortem, if the bother, will probably say the cause of death was a massive stroke or myocardial infarction. Perhaps even a bleed. What it will not say is that it was the result of a plummet in SpO2, a massive spike in Blood Pressure, breaking off a piece of arterial plaque that made its way to your brain or to your heart.

Actually, the AHI only needs to be less than 5. While I find it great that you keep yours lower, I don't think it is possible for everyone. And for you to say that because some of us are happy with anything less than 5 but above 1? That is condescending and unnecessary. Some of us have worked hard to adapt to live hooked to a CPAP every night. Some of us have crappy insurance and cannot get data capable machines. And again, you saying that announces we don't care? What about all the people who don't know of this board, or know you, yet work hard to maintain their health? I am sure they would not thank you for your advice.

Whatever you said after the quoted text above, I didn't bother to read. While it was probably not your intention, you had by then insulted many of us at least twice.

So, for any new users or long time users who cannot get their AHI below 1, it's okay. You're doing great. Just the fact you are using it is helping. Just the fact you even got the sleep test to begin with is helping. Keep using it. Hold your head up and be proud of what you have done so far. And if you are having trouble, that's okay, too. Just keep working at it. Ask for help if you need any. You are not alone in this. Having your AHI regularly below 5 does not mean you will die in your sleep with sleep apnea as the cause. It means you have an AHI as normal as folks who do not have sleep apnea. And that is what counts.

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.
08-24-2012 01:53 PM
Visit this user's website Find all posts by this user
TomR1 Offline

Members

Posts: 14
Joined: Jul 2012

Machine: ResMed s9
Mask Type: Full face mask
Mask Make & Model:
Humidifier: S9
CPAP Pressure: 4-12
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #5
RE: SURVEY RESULTS SHOCKING
I would think that an APAP set to auto like the S9 would solve what problems are solvable by this technology. Doesn't the system automatically scale the pressure to suit your conditions?

My problem is that the ResScan software does not load on my win7 64bit machine so I really can only check statistics occasionally
08-24-2012 03:38 PM
Find all posts by this user
PaulaO2 Offline
Wiki Editor
Moderators

Posts: 6,416
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Nuance (non-pro)
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome

Sex: Undisclosed
Location: western NC, USA

Post: #6
RE: SURVEY RESULTS SHOCKING
Tom, have you asked for help in the ResScan thread?

http://www.apneaboard.com/forums/Thread-...n-3-16-SP1

That's one of them. You will find help specifically for that there. Or start another thread asking for help.

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.
08-24-2012 03:41 PM
Visit this user's website Find all posts by this user
dakota Offline

Members

Posts: 14
Joined: Aug 2012

Machine: None
Mask Type: Not using mask
Mask Make & Model:
Humidifier: None
CPAP Pressure: None
CPAP Software: Not using software

Other Comments: I am a registered sleep technologist

Sex: Male
Location: Ann Arbor, MI

Post: #7
RE: SURVEY RESULTS SHOCKING
As a sleep technologist, I felt I should address this. AHI has to be less than 5 in a clinical setting. However, there are some exceptions that can be made for people who are super severe. An AHI of 15% from the total AHI (ie. AHI 100. Down to 15 is ok) would be sufficient, according to the PAP Titration League for the American Associate for Sleep Medicine, if the patient is unable to tolerate higher pressures. I think an overnight recording of oxygen is ridiculous on an all night every night basis. I would love to see your references in regards to your data though.
08-24-2012 04:14 PM
Find all posts by this user
Dawei Offline

Advisory Members

Posts: 261
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Respironics "FitLife"
Humidifier: H5i
CPAP Pressure: 10-20
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Western North Carolina

Post: #8
RE: SURVEY RESULTS SHOCKING
Murray, my reading of your comments is that your intention is a very good one, but I believe you are, as they say, preaching to the choir. The idea behind this board is for those of us who care about apnea to compare notes with one another and in the process learn and solve our apnea treatment issues.
As Paula wrote, an AHI of 0 is a wonderful idea, but it's not one that all of us have been able to reach.
And TomR1, this includes the use of an APAP (AutoSet) machine that has the capability of adjusting pressure within the range that it's set to operate.
For close to three months now, my leak rate has been down to zero most nights and only in the single digits on occasional nights. Yet, my AHI is still 5 point something. And my AutoSet currently has a range up to 19! I believe that's near the top end of what's possible pressure-wise.
I'm going to ask my doc what he thinks about setting my top end pressure a tad higher when I see him next month. But earlier I recall him telling me that my apnea has proved to be difficult to control. So, like Paula wrote, I'm tickled that my AHI is now (finally) down close to 5!
08-24-2012 04:17 PM
Find all posts by this user
Dawei Offline

Advisory Members

Posts: 261
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Respironics "FitLife"
Humidifier: H5i
CPAP Pressure: 10-20
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Western North Carolina

Post: #9
RE: SURVEY RESULTS SHOCKING
TomR1---Paula's suggestion including the link to ResScan software use may help. I'm also running Windows 7, 64bit and had no trouble grabbing and using ResScan. So, it sounds like something isn't set up quite right with your computer.
08-24-2012 04:21 PM
Find all posts by this user
zonk Offline

Advisory Members

Posts: 6,946
Joined: Feb 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: H2O
CPAP Pressure: 9/14 - EPR: Off
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010 but diagnosed years earlier

Sex: Male
Location: Australia

Post: #10
RE: SURVEY RESULTS SHOCKING
One of our French forum members said that in France AHI below 10 is normal as opposed to ASAA guidelines below 5
Prof Colin E. Sullivan (inventor of CPAP) say AHI is useless for measuring the severity of sleep-disordered breathing (SDB) and Dr Rapoport is not sure either.
http://www.apneaboard.com/forums/Thread-...or-Useless
08-24-2012 04:40 PM
Find all posts by this user
Thread Closed 


Possibly Related Threads...
Thread: Author Replies: Views: Last Post
  [CPAP] Interpretation of ResMed S9 Autoset results welshmike 22 454 11-20-2014 05:15 AM
Last Post: PaulaO2
  Reading ResScan Results pmyokhin 2 134 11-18-2014 07:46 PM
Last Post: pmyokhin
  Concerned with results of CPAP Titration study danf183 8 481 10-29-2014 07:58 PM
Last Post: PaytonA
  Survey on Nose pillows/nose cup? CasitaWayne 7 367 10-24-2014 04:06 PM
Last Post: PhyllisBalboa
  [Health] sleep study results and setting pressures MastiffMom 23 1,223 10-03-2014 07:31 PM
Last Post: PhyllisBalboa
  My ResScan Results surferdude2 14 810 10-01-2014 10:27 PM
Last Post: zonk
Arrow Please Help Us - Complete this Survey PollCat 44 16,138 09-14-2014 10:32 AM
Last Post: JWR

Forum Jump:

Who's Online (Complete List)