NEED HELP FROM EXPERTS PLEASE

[daddycoop]

Ok, I was diagnosed with sleep apnea over 1 year ago, started with resperonics pre set cpap then changed to resperonics mirage auto series m type, I USED it 6 months everynight with NO results other than bad, I had distended stomach, gas for 3+ hours eyes swollen and tearing and still FATIGUED! So I quit the therapy! Other day had a blood gas test and was 64% on PO2, BAD suppose to be 80-90% saying I am deprived of oxygen at night!
GO to a new doc he says lets try to resolve apnea and sets me up LAST NIGHT with BIPAP study WOWWWWWWWWWWWW, way worst than my 1st cpap experience!
Used my mask, fell asleep rather fast, hit 1 rem for about an hour he said then all hell broke loose. Was AWAKEN by severe airflow, my mouth was literally forced wide open in an O shape, tried to close it but slightest crack it opened back up wide again, mouth was dry as could be, lips dry as could be HAD a humidifier, tongue so dry could NOT wet lips, tried different laying positions to rectify this, BUT finally had enough, 5 hours into study I called tech and QUIT! I felt actually worst than CPAP experience, ask TECH if he saw anything out of bounds he replied NO, all looked like you were doing ok! MOUTH WIDE open that is ok? AWAKE eyes open that is OK?

I went home very disgusted here folks DO NOT KNOW WHERE TO TURN, seems like no one knows or cares all for the MONEY it seems! I own now 6 mask from 1st CPAP, everyone thought oh change the mask must not fit right, got full face to nose!

BOTTOM LINE I do have sleep apnea, what do I do now folks?

[Hawthorne]

What machine do you have? It will say on the top of the machine. If it's a M Series it will say just below the little flip up door. Tell us exactly what it says.

What mask are you using?

Do you know your titrated pressure?

It's easier to try to help you with this information.

[alnhwrd]

Welcome to the forum! I am not a doctor, and if I was I would not try to make a diagnosis via internet forum, but your symptoms seem consistent with Sleep apnea. You say you were diagnosed with sleep apnea a year ago, so if that diagnosis was based on a sleep study at sleep lab conducted by trained professionals, then yes you have sleep apnea. You state you are fatigued and that your O2 levels drop while sleeping, and these are both indicators of sleep apnea.

Sleep apnea is a serious medical condition, but can be very effectively treated. The treatment often needs to be personalized, meaning that your pressure, mask and equipment will need to be tuned to your particular needs. You state that your mouth is coming open, so you will need to use a full face mask and maybe a chinstrap or some means to keep your mouth closed. If your mouth comes open it defeats the purpose of CPAP, which is to keep your airway open while you sleep with pressurized air.

Try to stick with it and find what works for you to get proper treatment. If you have sleep apnea you need it. Get a machine that will provide nightly data on how you are doing each night. Find a mask you like and that works or you can make work for you. Keep working on finding the proper pressure. These are the keys to successful treatment. Good Luck.

[Slinky]

It sounds like you had a very inexperienced RPSGT (sleep tech) doing your last titration study (the bi-level titration). It sounds like the tech got you ramped up at way too high a pressure w/o coming in to resolve the mouth leak problem - or caused the mouth leak problem w/the too high pressure and should have reduced it.

I'd be inclined to contact the sleep lab, request a copy of the full scored data summary report w/condensed graphs (5+ pages)from this bi-level titration, the doctor's dictated results (1-2 pages) AND a consultation w/the sleep doctor or the sleep lab manager (after I got a copy of those two reports). I would then explain my total and utter dismay w/this bi-level titration and question its veracity and accuracy. I would ask to see the accrediation of the sleep tech who did the study. I would ask if they had an EXPERIENCED, ACCREDITED RPSGT and if so I would suggest that this sleep lab OWED me another bi-level titration by their QUALIFIED, ACCREDITED RPSGT at no cost.

It also sounds like you have another health problem than just OSA if you had a daytime ABG 64% reading. Do you have asthma? COPD? Some other lung condition? Chest muscle weakness?

Just my impressions from what you've posted in this thread. Mind you, I am NOT a sleep or medical professinal, just an OSA patient. I'd also be inclined to use my CPAP as faithfully as possible by reducing the pressure to say 6 cms to start and build up every 7 days depending on my data.

[daddycoop]

I will look into each of your request thank you, I DO NOT HAVE a report from my 1st study over a year ago or the one last night, it was at a hospital sleep lab I know the tech said he was there for 8 years all I know, I did not know I had to ask anything else , BUT I WILL DO SO as you have stated. I know my machine CPAP, and know the mask name in fact I own 6 now, BUT cannot tell anyone anything else for I have nothing else, do i get this from the actual sleep study?

I have a card but cannot read it?
I know I have now an auto cpap reperonics cflex m series i believe that is fully auto meaning it will ONLY increase when it feels an obstruction in the airway.
YOU SAY with full face I should NOT breath through mouth, I thought that was the purpose to either breath mouth or nose or both, if so NEVER knew this, so that could be a problem, thought air went into airway via nose or mouth? These may be some dam dumb ?s here but I am 52 a professional powerlifter /world strongman, and I NEED MY AIR AND ENERGY, yes I was diagnosed the 1st time at a sleep study of having sleep apnea and BAD as they stated, it seems I have ALL DUMB ASSES HERE WORKING FOR ME, I cannot get any relief and they either want more test or more mask! Thats why I have 6 now. No ONE ever looked to see why it may be going into stomach instead or lungs, and after last nights treatment I had gas for 6 hours today alone a sign of bypass to me and I am just a patient. I WILL GIVE YOU ANY INFORMATION YOU ASK FOR JUST TELL ME WHERE TO FIND IT, AND I WILL WORK FOR YOU TO FIND MY PROBLEMS AND MAYBE GET RELIEF JUST ASK I WILL NOT GET OFFENDED IN ANYWAY!! You people are MY LAST RESORTS I FEEL! I want to in advance thank each and every one of you for this input.................

[daddycoop]

also I have now shortness of breath NOTHING else you ask do I have, they have done pul function all ok, ct scans all ok, heart caths all ok, liver kidney blood all ok? NO ONE can tell me WHY I CANNOT BREATH NORMALLY and have legs swelling with pitted edema for 4 years NOW and YES all those studys as mentioned NO RESULTS for me of why.........................
IF I did not see the leg swelling I would tend to believe i was maybe NUTS! BUT my wife is a nurse of 24 years and she to is very frustrated at the docs and NO RESULTS, I am now seeing UPMC lung center in pittsburgh, it is the new doc that ordered the study as i TOLD him I had one and explained the NO RESULTS from the CPAP at all he said he again wanted to start there BUT with a BIPAP, worst sleep last night at that study I HAVE EVER HAD, even without a machine!
I was suppose to have test 10-6am I woke up at 3 am and QUIT! With all symptoms as explained in 1st post! All the tech said is you want some water WHICH I NEVER GOT!
I ask him did you see I was not doing well he said NO it looked to me as you were in 1 rem for 1 hour and all was well, I said BULLSHIT! Left the hospital.

[grandmma]

Daddycoop, so sorry to hear of your "difficulties" (which I realise is understating it, to say the least). You've come to the right place for assistance, and there are many experienced folk here who can offer sound advice which will definitely help. Sounds like the sleep tech was either an idiot, or just lazy. I'm betting the latter. (Was he even on the job through those hours? Missing in action? You have to wonder! What were the nurses like?!! )

I can't offer you any advice which will help, but you've obviously got the right attitude and will power, so go you! I look forward to reading of your progress.

[daddycoop]

ok what I know, i have a respironics remstar m series plus with respironics humidifier and the mask I am using now is a resmed full face mirage quattro the setup gave me this software version V.4.03 c flex setting 2 autoramp 4.0cmh2o and a compliance number? All I have access to on it that I know of it is an auto cpap, do not know if it has a high setting but they said it was suppose to start low and AS NEEDED go up to clear the obstruction. OK FOLKS IN YOUR COURT NOW, TELL ME OR ASK ME.....................

[alnhwrd]

Ok, the machine that you are describing is not an auto. Is this your machine?

https://www.cpap.com/cpap-machine/respi ... nformation

And can you tell us what pressure your machine is set at?

[daddycoop]

it is the auto c pap for 759 the 3 button one on that web page m series auto cpap with c-flex sorry............

[daddycoop]

thought auto was auto no pressures? I do not know then or know how to find out but it is the machine I specified above for sure not the one you ask me about 3 buttons on front not 2 as the one you showed me thank you................

[ozij]

daddycoop,
The machine you put in your profile - a Plus - is not the machine you describe - so one of them is wrong. I assume it's the one in the profile which you have to change.

The experience of most of us on this forum is that even on a self adjusting machine, the minimum pressure must not be set too low if you want good therapy. The reason is simple: the automatic machines are often not as good at preempting breathing obstructions as they need to be. With the minimum pressure set too low you will have obstructive events, the machine will raise the pressure after the fact, and then, when your pressure stabilizes, drop it again. So you get into a vicious cycle of having far too many breathing interruptions.

Try to find get the PSG (sleep study) data and prescription, because you will have to use them as an indication of where to set the minimum pressure: about 2 cms less than what they recommended. The people who set up your machine have been reading manufacturer blurbs - but have never slept with it, which is why they think they can set you up with a minimum of 4 and trust the machine to respond.

Mouth breathing with a full face mask (FFM) does not compromise your therapy.

O.

[rested gal]

daddycoop, to be sure we understand the full name of your machine, please look at the top surface of the machine. The full name of the machine will be written on top of the machine.

Which one of these words is part of the name on top of the machine?

Plus

Pro

Auto (without the word "A-Flex")

Auto A-Flex

[daddycoop]

OK how about that did have wrong one sorry newbie here and many choices, was close LOL

[ozij]

No problem about being either a newbie or wrong (we all were newbies, and all of us get some things wrong) - the only reason we insist so much is that our advice varies, based on the type of machine you have.

Encore Viewer is a program, created by Respironics for patients, and it will let you read important data from your card. You can also get data from the LCD screen -- and if you can't someone who knows the machine will tell you how to enable that.

The data - apnea and hypopnea indexes (that's average per hour) and information about leaks are important to help you understand when your machine works better for you and when it does not.

Welcome to the forum - and good luck!
O.