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[Symptoms] HELP FROM ANYONE PLEASE
08-15-2014, 09:47 PM
Because your doctor is convinced that a mere patient can't understand this stuff. Your doctor is incorrect...
08-15-2014, 09:53 PM
You haven't told me about your mask yet. I'm concerned about that because you're a long time user of the machine, and I want to know the Doc has been taking care of you "mask wise." You should change your mask every 90 days or so.
You mentioned it's a nasal mask. What brand?
08-15-2014, 11:58 PM
(08-15-2014, 09:43 PM)ctolstad Wrote: You guys seem very knowledgeable. If you know all this stuff, why doesn't my doctor help me??????
The medical mafia is focused on keeping the patients ignorant to protect their profit margins. Even if your own doctor doesn't deliberately act that way, the system tends to make them work that way. Also many doctors are flat out ignorant about what CPAP machines can do and how to fix the problems. They tend to pass all that off to the DME, who is focused on his profit margin. The DME's now are often part of big corporate chains that further try to squeeze the maximum bucks out with the minimum amount of customer service.
08-16-2014, 06:07 AM
(08-15-2014, 09:31 PM)ctolstad Wrote: Do I obtain all this info off a printout from from doctor when he runs the card???? To provide you with info u need to help me??????
Hi ctolstad, welcome to the forum!
I don't have experience with Respironics machines, so I can't help with how to get data from your machine.
It would be helpful for you to tell us the exact model number of your machine.
In the "Important Threads" section at the top of the forum, there are threads to help you identify your machine and to download or request by email the clinician setup manual for your machine.
The clinician setup manual/guide is your partner/friend in finding out how your machine works and what the various settings are, so you can be more knowledgable about your machine's capabilities and how the various settings affect your therapy, so your doctor will be able to discuss your therapy with you in greater detail.
In particular, I am wondering what are your pressure settings. These will include:
Therapy Mode (fixed pressure CPAP mode, or ASV mode, or whatever)
Min EPAP (which is the minimum pressure delivered during exhalation)
Max EPAP (which is the maximum pressure delivered during exhalation)
(Note that your machine will automatically adjust the pressure it delivers while you are exhaling to be somewhere between Min EPAP and Max EPAP, at the level needed to avoid obstructive events like obstructive apneas, hypopneas, airflow limitations and snoring.)
Min Pressure Support (Min PS)
(Note that PS is the amount of pressure boost added while you are inhaling. For example, if EPAP is 5 and PS is 3 then the pressure delivered while you are inhaling, which is called the IPAP, will be 5 + 3 = 8.)
Max Pressure Support (Max PS)
Max Pressure or perhaps called Max IPAP
(IPAP is the pressure delivered during inhalation.)
The way your machine treats obstructive events is to raise the EPAP pressure.
The IPAP pressure is always the EPAP pressure plus Pressure Support.
The way your machine treats central apneas (which is when your airway is clear but you are not breathing, so your central nervous system is failing to try to breathe) is to quickly increase Pressure Support as high as it needs to be to keep you ventilated at least 90% of your recent amount of breathing (to keep the average volume of air inhaled or exhaled per minute, which is called the Minute Ventillation or Minute Vent, at a target value which is 90% of its recent average value just before you stopped breathing).
For example, if your EPAP is 5 and PS rapidly increases to 10 then the pressure would periodically alternate between 5 and 15. The period if the oscillation is called the backup respiration rate, and can be set to a fixed value (such as 10 or 12 breaths per minute) or perhaps can be set to automatic (which will be whatever your recent normal breath rate has been).
When Pressure Support is around 10 or higher the machine will be doing all the work of breathing for you. And when you eventually start to exert effort to breath on your own the machine will rapidly reduce PS back to a lower level now that less Pressure Support is needed.
By looking at the plots of the data your machine reports, you will be able to see if the Max EPAP is appropriate or is keeping the EPAP pressure too low. And you will be able to see if either the Max PS or the Max Pressure (Max IPAP) settings are keeping the PS from being able to increase as much as needed to keep you adequately ventilated during apnea or hypopnea events.
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
08-17-2014, 09:19 AM
I can't help you at all with the technical stuff because I am new to all of this BUT from a medical viewpoint you need to take command of your situation. YOU are the patient and you have every right to pursue a fix for your problem. Just like any other condition, if you are unhappy with the way things are going with your current doctor go and get a second opinion. Sometimes that second opinion can be a life saver. There are times when doctors get too "comfortable" with patients... they listen to their woes but because they have preconceived notions about you they sometimes don't listen. My father complained to our family GP for years that he felt tired and thirsty all the time and all the doctor did was to reassure him he was okay...basically patted him on the head and told him to go home and stop worrying. One day while on holiday he felt so bad we had to take him to see a doctor in the ER. Within half an hour the ER doctor had diagnosed (correctly) that my father had developed type II diabetes and had probably had it for some time. So there's an illustration of the benefit of a second, unbiased opinion.
The second anecdote I will relate to you concerning second opinions relates to my poor mum. She had seen a GP over a course of year with back pain. He diagnosed osteoporosis without actually doing any scans and put her on NSAIDs to treat the pain. My father wasn't happy with this because my mum kept complaining that the pain was coming back. So he went and talked to the doctor and the doctor told my dad that my mum was overly dramatising the situation and that she'd be fine. Yeah...sure! My father told the doctor that he wanted a CT scan done on my mum and the the doctor reluctantly agreed...saying that he was only doing so for the sake of calming everyone down. So off mum goes for the scan. Whilst at the radiography rooms the senior radiographer comes out and tells my father that he is ordering an ambulance for my mum. My father is taken aback and asks why. No answer. But once at the ER the answer is provided...not a good one. My mother had cancer in her bones from the tips of her toes to the clavarium in her skull. It had probably been growing for over a year...the year my mum had been complaining to the original GP.
So my attitude to medical help is ALWAYS ask questions and ALWAYS get a second opinion if you aren't happy with the first doctor. That might just save your life.
08-18-2014, 01:11 PM
ctolstad, welcome to the forum.
I'm another who isn't as well versed on Respironics machines or BiPAP/ASV machines...but it sounds like some of the more knowledgeable members in those areas are starting to chime in.
I would agree, though, that you need to find out some more about your treatment and have the ability to look at what is going on while you sleep. To be that tired after sleeping is a pretty strong indicator that something isn't right with your therapy. Hang in there....most of us started in the same position....not knowing much about CPAPs or our treatments, but we've learned (in most cases much for the better), and you can too
08-18-2014, 06:11 PM
Ctolstad, sad but I think it must be common for the sleep doctors to not get very involved in our followup. They do the sleep study, then leave you to the wolves.
I'm lucky, my DME is owned and operated by a private individual who is also a CPAP user. He has helped me more that the doctor ever did. Hopefully someone on this forum will guide you to getting the data you need to understand what is happening and why you feel so bad. I am sure the key is within your data. Stay in close touch with this forum. People on this forum will help you through this tough time.
08-18-2014, 06:35 PM
(08-15-2014, 09:47 PM)NickDanger Wrote: Because your doctor is convinced that a mere patient can't understand this stuff. Your doctor is incorrect...
AND the sleep techs are VERY suspicious of anyone who wants to know about their therapy, they feel like we are stupid and should be in the dark. If it wasn't for this board, I would still be blithely thinking all was well, meanwhile my mask was leaking like a sieve and I did not know it. Also, my pressure was WAAAAAAY too high, the sleep lab guy made me sleep on my back and Apnea is so much worse when you sleep on your back. Side sleepers have much less Apnea. When all was said and done, I went from pressure 18 DOWN to 6, and now sleep much better. At 18 I was fighting all night.
I am not sure if that is your issue, but I can tell you that if you can post your stats from the card on this forum, you will get answers. Hang in there!!!
08-18-2014, 06:47 PM
(08-17-2014, 09:19 AM)Stroppy Wrote: I can't help you at all with the technical stuff because I am new to all of this BUT from a medical viewpoint you need to take command of your situation. YOU are the patient and you have every right to pursue a fix for your problem. Just like any other condition, if you are unhappy with the way things are going with your current doctor go and get a second opinion. Sometimes that second opinion can be a life saver. There are times when doctors get too "comfortable" with patients... they listen to their woes but because they have preconceived notions about you they sometimes don't listen. My father complained to our family GP for years that he felt tired and thirsty all the time and all the doctor did was to reassure him he was okay...basically patted him on the head and told him to go home and stop worrying. One day while on holiday he felt so bad we had to take him to see a doctor in the ER. Within half an hour the ER doctor had diagnosed (correctly) that my father had developed type II diabetes and had probably had it for some time. So there's an illustration of the benefit of a second, unbiased opinion.
Sounds like a couple of GPs need to be waterboarded!
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.