Diagnosed with sleep apnea
- Thread starter AuntPeggy
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Matthew
Touchdown! Greaser!
Cost will be between you, your insurance company (check your durable-medical-equipment deductible), and medical device supplier. Just ask the supplier straight out how much it'll cost. There are ways to mail-order the equipment, but you sacrifice some ability to get local follow-up service (like checking the calibration every now and then). If you go local, you can either get in-home fitting or just drop by their office.
I don't know anything about that mask that you were asking about. But, most mask fittings suggest that the upper section not be tight but just making contact.
An advantage of using a local supplier is that they might be able to let you test different masks without incurring extra return/replacement costs. Later, after you find one that works for you, you can just mail order replacements as needed.
I don't know what's average - I'm at 7.
Don't know, I don't have a humidifier. I think that some folks have covered the hose to keep it warm in an attempt to minimize condensation.
Doggtyred
En-Route
"normal" is "Not needing CPAP"
They start at 5cm, and when we use the equivalent of CPAP in hospital ventilators, 5 cm tends to be pretty common for a minimum setting.
My study had me in Bi-Pap once we got to 12-13 cm (the tech showed me the raw data after my study, since I could interpret it..) but the prescription came for a CPAP rather than BiPap (cheaper machine).
As for condensation, you can route the hose so that rainout drains into the machine's reservoir, you can cover the hose to prevent cooling, you can put a moisture trap in a low point between you and the machine (requires two hoses with a trap in between)
bbchien
Touchdown! Greaser!
FAA doesn't like CPAP above 12 as there is definitely a reduced compliance (pt.s have problems and use it less) as it gets higher. 8 is the most common setting.
However, if you are at 12 and the reports are good, and are unequivocal (the chip says you're using it >95% of the time) they won't flinch.
However, if you are at 12 and the reports are good, and are unequivocal (the chip says you're using it >95% of the time) they won't flinch.
gkainz
Final Approach
http://www.cpapdiscountstore.com/catalog/
http://www.CPAP.com
http://www.cpap-supply.com/
and a number of others, but seriously, start with your DME provider - mine is Apria Healthcare. They have folks trained in fitting, adjusting, etc and will get you started without buying your way thru a number of masks (some how they all seem to be about 1 AMU)
http://www.CPAP.com
http://www.cpap-supply.com/
and a number of others, but seriously, start with your DME provider - mine is Apria Healthcare. They have folks trained in fitting, adjusting, etc and will get you started without buying your way thru a number of masks (some how they all seem to be about 1 AMU)
AggieMike88
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The original "I don't know it all" of aviation.
For me... Setting is 10 (but last visit with sleep doc got a suggestion that a reduced amount could be permitted if compliance and some weight loss continues)
Nasal Mask, the Opus 360. Tried the Breeze, but came back to the Opus with the "Medium" mask.
Humidifier in use, with a "SnuggleHose" fleece sleeve. Used to have frequent rain out when the humidity was set to highest point. But slowly weaned back to the middle setting. Still get a gurgle on colder nights, but not much. Only get water on/in the nose when removing the mask for a midnight liquid offload run.
Hose positioning can be a chore to figure out the most comfortable point. Keep experimenting with what works for you.
It will take a week or three getting used to sleeping with the mask and the air pressure. But the additional energy and no fatigue during the day makes it worth it.
Nasal Mask, the Opus 360. Tried the Breeze, but came back to the Opus with the "Medium" mask.
Humidifier in use, with a "SnuggleHose" fleece sleeve. Used to have frequent rain out when the humidity was set to highest point. But slowly weaned back to the middle setting. Still get a gurgle on colder nights, but not much. Only get water on/in the nose when removing the mask for a midnight liquid offload run.
Hose positioning can be a chore to figure out the most comfortable point. Keep experimenting with what works for you.
It will take a week or three getting used to sleeping with the mask and the air pressure. But the additional energy and no fatigue during the day makes it worth it.
AggieMike88
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The original "I don't know it all" of aviation.
And keep close tabs between what the "retail" price found on the internet, what your insurance company is willing to pay, the deductibles, and what the local DME is charging you and/or insurance company...
I was clueless in these regards after I received the machine and dealt with the billings and recurring statement of benefits. Can't prove it, but strongly am suspicious that between what I paid and what the insurance co. paid, likely 2 to 2.5 machines could have been purchased from an online DME such as CPAP.com
Have had the machine for 2.5 years. And just today I get some letter from the DME that I am past due by $175.00. First letter from them in over 16 months and now they say I'm past due?? I will question this, but it points out some of the flaws in the system.
Keep track and keep them honest.
In regards to replacement supplies, CPAP.com is the one I've used the most and am satisfied with their prices, policies, and shipping times.
Doggtyred
En-Route
'
Thanks for the heads up.. when I go to get my expired medical back, I will make sure I have all my data... I've not spent a night without my new true love since we've been acquainted (Miss Respironics is her name..)
A co-worker has advised against getting the soft gel mask because it tears apart within 3 months. He also warned against getting ball fasteners because they break, too.
Any comments?
BTW, the hospital phoned to schedule another sleep study with a different machine that can be [edit: adjusted] because the last study was not usable.
This isn't really going very quickly.
Also, <cheer> I've lost 10 pounds!!!!
Any comments?
BTW, the hospital phoned to schedule another sleep study with a different machine that can be [edit: adjusted] because the last study was not usable.
This isn't really going very quickly.
Also, <cheer> I've lost 10 pounds!!!!
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I love that one, too.I like tents....
gkainz
Final Approach
Since "most" (based on a very informal reading from just a few people on a sleep apnea discussion group) insurance companies will authorize and reimburse for mask replacement 3-6 times per year, I wouldn't base my decision for a mask based only on that advise.
Congrats!
Doggtyred
En-Route
Mask wise, my vendor had already called to send replacement components at about the 60 day point, billable to insurance. The silicone components of the mask/assembly will slowly absorb skin or hair oils and degrade. Washing or wiping the portions that contact you will delay that.
As for needing another study.. hopefully this one will be a little smoother for you. Dont be afraid to communicate with the tech. If you wake up in the middle of the night and cant sleep because the machine is blowing too hard, let the tech know you cant sleep, and can they back off for a bit before ramping the pressure back up.
My next titration study will be with Adapt SV. If I read correctly, that would indicate Central. Now what do I need to know?
No, I do not use opiates.
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I just found this
At one time, many years ago, a physician told me that I "under breathe" normally. Never followed up on it. But reading up on "Primary hypoventilation syndrome", I wouldn't have survived this long with such a severe breathing problem.
The only one that looks remotely like me is "Severe obesity".
At one time, many years ago, a physician told me that I "under breathe" normally. Never followed up on it. But reading up on "Primary hypoventilation syndrome", I wouldn't have survived this long with such a severe breathing problem.
Doggtyred
En-Route
The initial sleep study you did should have been able to differentiate between central and obstructive sleep apnea.
Thats why they put the elastic cords around your chest - to measure your efforts to breathe. They would have been able to tell pretty quickly whether you were hypoventilating from obstruction or from lack of effort.
Until someone comes out and puts it on paper that you have a central sleep apnea diagnosis, I'd continue to look at this as a case of obstructive sleep apnea.
Get the sleep tech to show you first and second studies, and explain things to you (or get a copy from your medical records and make an appointment with the sleep doc who's interpreting it to explain it to you).
Maybe you should start?:wink2:
AggieMike88
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The original "I don't know it all" of aviation.
This is one reason I switched sleep docs and really like the one I use now (Dr. John Debus of Plano, TX). It is his routine to sit with you and the printed results and make sure you understand what they mean and what his interpretation is. It's a 30-minute visit, but I walk away with a much better idea of where I stand with this.
Plus he already has lots of pilots as patients and knew what's required for the status report.
I never met the doc that did my first sleep study a few years ago and the results discussion provided by my PCP didn't provide the education that I now know I should have gotten. I was just told to report to this lab, did the study, then go home and wait for the PCP to call.
Peggy, definitely ask for an appointment with the interpreting doc for a thorough review of the results. Your paying them to help you, so you deserve the service.
I went back for the third sleep study the same day that we had a 3-hour presentation on our massively changed benefits package. Among other things, I found out that Cigna has been picking up all of the nearly $6000 for each study this year, but next year I pay 20% after my deductible. Cigna will pay 80% of the $1000+ machine and the $100+ masks that must be replaced every few months.
My third study was better than the second one, but certainly not satisfying. The technician offered an apology to me first thing, before I had a chance to say anything about the previous study. She said that it was necessary to put me through the "torture" (her word) because they had no way of knowing ahead of time that it would be so difficult for me.
It was after 11:00 when she was placing the goo and electrodes in my hair. I know because she had turned on the television and the late news was playing. She brought in their smallest mask and while it fit snugly, the upper head straps once again floated above my head like a halo instead of securing the top of the gadget to my forehead. She told me that the machine would spend around an hour learning my breathing patterns before adapting well.
She was right. Although we fought initially, the machine relented gradually and we reached a compromise where my breathing came naturally. It took at least an hour. I know sleep came because I woke with a scream when the technician came in and tugged on the mask to stop the leak that had occurred. By then the machine was docile and we had come to terms. If it wanted me to breathe and I wasn't ready, all I had to do was open my eyes and it relaxed. Do not ask me how it knew my eyes were open.
Anyway, next morning I asked the technician for the studies and didn't get them. One or both of us forgot. I phoned the doctor yesterday and asked for them, but he wasn't in and would call me when he gets in today. I phoned today and he wasn't in, but he would.............
Doggtyred
En-Route
My bet is the machine didnt know. The tech did. She watched your EEG and muscle movement patterns and could tell when you woke up/aroused. She then ramped the machine back down until you went back to sleep.
If you wake up at home, you may have to punch a button to reset the RAMP feature.
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RogerT
Cleared for Takeoff
Ohhhh ... clear back when I was in Army boot camp they made us go
out and sleep in a tent for a few days. That cured me. Now my idea
of camping would be one of those $200k motor homes.
Just got my VPAP delivered this afternoon. Will let you know how it goes. What's the difference between CPAP and VPAP you may be asking. About $6000. I'll tell you more later tonight because I had to take off a 1/2 day to be there, so I have to get some work done now.
Last night was my third night with the new VPAP machine.
The first night didn't go too well, I went to bed around 10:00 and got the mask adjusted. That is a chore in itself, because the machine senses as soon as you start breathing near the mask that you are using it and it begins to blow even before the straps are tightened and the nosepiece seated around the nose. There are soft plastic parts that need to be adjusted for fit and comfort and every time the nosepiece is fiddled with, the machine starts blowing harder. Once the nosepiece is settled, then the headstraps need to be adjusted so that they are evenly spaced and the back where they are joined is relatively centered. Getting that straightened out pulls the nosepiece away, so it needs to be fiddled with again. Meantime, the machine is madly blowing as hard as it can because it thinks (apparently) that you are not breathing properly and that is its one goal in life. Anyway, I did finally manage to get it settled down.
I watched TV for awhile with the mask on and getting more comfortable before finally settling down to sleep. Whenever I started to doze off, the blowing would get more pronounced. It was not letting me exhale properly. It wanted me to be breathing faster than I was and it wanted me to breathe deeper than I was, so to placate it, I would take three or four quick breaths. Then it would settle down until I started to nod off again. This went on until I finally fell asleep around midnight.
The next night I went to bed around 10:00 again and the ritual started up again. This night I was more sleepy than usual because I hadn't been able to get as much sleep as usual the night before. Odd, since the machine is supposed to allow better sleep. Each time the machine woke me up, I found that the puffing to placate it was causing me to hyperventilate. My heart was thumping away like a rabbit and I was completely wide-awake. A pattern emerged. After about 4 or 5 breaths, I'd need to belch. (Didn't realize I was swallowing air.) The machine would get upset and would begin pushing air before I could exhale. I'd huff and puff to let it get happy and in doing that would hyperventilate and my heart would start jumping. After every second or third burp, the air pressure would be so great that it would blow open my lips, "pffft". And every third blow-out would be accompanied by drool running down my chin.
1 ... 2 ... 3 ... 4 ... burp ... puff ... puff ... 3 ... 4 ... 5 ... burp ... pffft ... puff ... puff ... 3 ... 4 ... burp ... puff ... puff ... 3 ... 4 ... burp ... pfffft ... wipe.
I continued counting breaths, counting blow-outs, and wiping drool from my chin until 2:00 when I took the mask off and turned off the machine. I had watched Keith Olberman and Rachel Maddow twice and was desperate for sleep. Within minutes I was asleep.
Last night, I soldiered on from 10:00 until midnight. Now I am definitely out of compliance. However, the tool that is supposed to prevent me from waking up 100 times a night does it by preventing sleep altogether.
The first night didn't go too well, I went to bed around 10:00 and got the mask adjusted. That is a chore in itself, because the machine senses as soon as you start breathing near the mask that you are using it and it begins to blow even before the straps are tightened and the nosepiece seated around the nose. There are soft plastic parts that need to be adjusted for fit and comfort and every time the nosepiece is fiddled with, the machine starts blowing harder. Once the nosepiece is settled, then the headstraps need to be adjusted so that they are evenly spaced and the back where they are joined is relatively centered. Getting that straightened out pulls the nosepiece away, so it needs to be fiddled with again. Meantime, the machine is madly blowing as hard as it can because it thinks (apparently) that you are not breathing properly and that is its one goal in life. Anyway, I did finally manage to get it settled down.
I watched TV for awhile with the mask on and getting more comfortable before finally settling down to sleep. Whenever I started to doze off, the blowing would get more pronounced. It was not letting me exhale properly. It wanted me to be breathing faster than I was and it wanted me to breathe deeper than I was, so to placate it, I would take three or four quick breaths. Then it would settle down until I started to nod off again. This went on until I finally fell asleep around midnight.
The next night I went to bed around 10:00 again and the ritual started up again. This night I was more sleepy than usual because I hadn't been able to get as much sleep as usual the night before. Odd, since the machine is supposed to allow better sleep. Each time the machine woke me up, I found that the puffing to placate it was causing me to hyperventilate. My heart was thumping away like a rabbit and I was completely wide-awake. A pattern emerged. After about 4 or 5 breaths, I'd need to belch. (Didn't realize I was swallowing air.) The machine would get upset and would begin pushing air before I could exhale. I'd huff and puff to let it get happy and in doing that would hyperventilate and my heart would start jumping. After every second or third burp, the air pressure would be so great that it would blow open my lips, "pffft". And every third blow-out would be accompanied by drool running down my chin.
1 ... 2 ... 3 ... 4 ... burp ... puff ... puff ... 3 ... 4 ... 5 ... burp ... pffft ... puff ... puff ... 3 ... 4 ... burp ... puff ... puff ... 3 ... 4 ... burp ... pfffft ... wipe.
I continued counting breaths, counting blow-outs, and wiping drool from my chin until 2:00 when I took the mask off and turned off the machine. I had watched Keith Olberman and Rachel Maddow twice and was desperate for sleep. Within minutes I was asleep.
Last night, I soldiered on from 10:00 until midnight. Now I am definitely out of compliance. However, the tool that is supposed to prevent me from waking up 100 times a night does it by preventing sleep altogether.
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jesse
Touchdown! Greaser!
I know nothing about it - but there is no way to power it off while you're putting the mask on? If not perhaps unplug it until it's on?
Yes, there is a power switch, but I was told to start the machine first and then put on the mask. The third night I did it the other way around and it was way easier to get the mask adjusted and didn't seem to have any bad consequences.
gkainz
Final Approach
wow - note to self: avoid VPAP at all costs! I guess my simple CPAP ain't so bad ...
RickH
Pre-takeoff checklist
Seems like some folks are spending a lot more on their CPAP systems than I have. My 3-yr old Respironics M was about $900 from the local medical supply and I've since discovered that you can buy online from places like CPAP dot com for about half the retail price. I've only replaced my mask once (I still keep the original one for travel) and the cushions on my current Fisher & Paykel full-face mask a couple of times. If I wake up in the middle of the night and the pressure is uncomfortable I just roll over and swat the ramp button which sets the machine back to the lower pressure level at which it starts when it's first turned on. Come 5 AM when the cats start to get restless I'll probably do that 2 or 3 times and go back to sleep each time.
Doggtyred
En-Route
I bought my "spare" for $300 the day after my study... and the insurance bought one a few weeks later... Plain ol CPAP, not a bi pap or Vpap... Have spare nasal mask and nasal pillows courtesy of the insurance (and the spare machine)... my out of pocket outlay has been light..
Finally got a technician to adjust the machine. Last night I used it for the first time in about a month and the experience was much better. The pressure was adjusted to lighter and the wait time was increased. As a result, I was actually able to get to sleep, albeit after a couple of hours instead of my usual 10 to 15 minutes. I also got the nasal pillows and that was significantly more comfortable. Because it isn't all over my face, I was able to put on and take off my glasses depending upon whether I was reading or watching the TV. On the other hand, my nose starts running a little as soon as it is in place.
So, it took much longer to get to sleep initially and then I woke up about every 30 minutes, whenever I wanted to roll over. Nevertheless, I feel more refreshed this morning than usual. My hope is that as I adjust, it will be easier to get to sleep and stay asleep.
Dr. Bruce, since there is a lapse of over 25 days between the time I got the machine and the time I'm actually using it, it seems like it will take nearly a year of total use to get compliance up to 95%. Right? Or is there a way to reset to clock to last night?
So, it took much longer to get to sleep initially and then I woke up about every 30 minutes, whenever I wanted to roll over. Nevertheless, I feel more refreshed this morning than usual. My hope is that as I adjust, it will be easier to get to sleep and stay asleep.
Dr. Bruce, since there is a lapse of over 25 days between the time I got the machine and the time I'm actually using it, it seems like it will take nearly a year of total use to get compliance up to 95%. Right? Or is there a way to reset to clock to last night?
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bbchien
Touchdown! Greaser!
On most units there's a graphical printout that shows the use curve. if you have three month's 90% comlpiance in the 90 days prior to reapplication, that'll do it for you.
Doggtyred
En-Route
One thing to be careful about, Peggy, is how the machine counts "compliance". I don't know how yours is, but mine only counts hours once its past 4 hours of continuous use (so.. 3.5 hrs and then you wake up, turn it off, and go do something then come back to bed... you get a zero)..
So even if you get 5-6-7 hrs of use in a given 24 hr period, my machine only counts a nights use as >4 hrs continuous.
If your machine turns itself off after a minute or two of being removed, then a potty break in the middle of the night can skew things. Read the manual and understand how these things are calculated with your machine.
I am aware of the 4 hour requirement for compliance. And according to the technician it doesn't turn itself off for potty breaks, but I haven't needed to find out.
Just to keep up to date on how its working for me, I have found that a half-dose of Nyquil helps with two things.
1. I can get to sleep within an hour.
2. The sniffles are abated.
So, that's what I'm doing now, and already cutting back a little each night in the expectation that less help will be needed as I get used to the machine.
At first, there was considerable irritation in one nostril. That is the one that has always had some restriction. The little cannula nosepiece felt like it was covered in prickles when in my nose, but upon examination, it is quite smooth and flexible. Anyway, the first couple of nights, there were the sniffles and I awoke with a bloody crust in that nostril. That is also getting better. I expect it won't be long before I toughen up.
I still wake up several times a night whenever it is time to roll over, but getting back to sleep quicker. The apparatus is managable, but annoying, so each night when I put it on, I note the time and decide I won't take it off until the four hours have passed. Last night, I went to bed late because we were wrapping presents. So, it was nearly 11:00. When I awoke at 4:30, I took it off and slept until around 6:00. I am feeling just slightly fresher during the day. No doubt it will take a long time to feel really rested in the morning.
Oh, and I've lost a total of 18 lb.
Doggtyred
En-Route
Restorative sleep tends to happen later, rather than earlier, in the sleeping cycle. You may be short changing yourself by removing the machine for the last few hours. You might find yourself feeling much fresher by using it for any attempts at sleep. That includes naps, as well as bedtime.
Think of this.. Your sleep is disordered without the machine's assistance. Whatever sleep you are getting without the machine is not really helping you any, and may be harmful. The apnea, hypoxic spells, the CO2 buildup.. all of that happens when you try sleeping without the device.
After two nights use of my machine, I was feeling much better.
Just thought it is time for an update. I have not gotten accustomed to the CPAP. I might have been able to get one hour of sleep using it since the day it first arrived. The rest of the time that I have used it, I endured being kept awake until in desperation I took off the mask and turned it off. I don't even try any more.
I spoke to my regular doctor about it and about how difficult it is to get a chance to speak to the doctor who ordered the CPAP. He left a note with the referred doctor to call and offered to be my advocate in resolving the issues. Among the things he said was that since my waking blood oxygen is always OK, there is little reason to believe I have central apnea. (His assistant always takes and records an oxymeter reading when I visit.) Anyway, that is good news. I made the appointment and will be able to get in in two weeks.
In the meantime, my weight reduction is proceeding well. Current weight loss is 27 lb. It was a major milestone when my weight dipped below morbidly obese. I am now merely obese. The next achievement was 10% of body mass lost. After that, my next goal is to become overweight instead of obese. My eventual goal is to celebrate my 25th wedding anniversary in the same dress I was married in. The good news is that clothes that were getting too tight are starting to be baggy.
If you are wondering, I am on a bariatric diet without undergoing the surgery. I was originally prescribed pills to help curb my appetite, but rejected them and have been able to continue the food plan without them. At about a rate of 3 lb per month. In addition, I have been exercising by simply walking. It was difficult to maintain the walking through the winter, but with spring coming on, it should be easier again.
My energy levels have increased and my next increase in activity will be to add yoga to the mix. I think I'm sleeping better since I'm not nearly so tired during the day and I wake up an hour earlier than I was before. Still not dreaming yet.
I spoke to my regular doctor about it and about how difficult it is to get a chance to speak to the doctor who ordered the CPAP. He left a note with the referred doctor to call and offered to be my advocate in resolving the issues. Among the things he said was that since my waking blood oxygen is always OK, there is little reason to believe I have central apnea. (His assistant always takes and records an oxymeter reading when I visit.) Anyway, that is good news. I made the appointment and will be able to get in in two weeks.
In the meantime, my weight reduction is proceeding well. Current weight loss is 27 lb. It was a major milestone when my weight dipped below morbidly obese. I am now merely obese. The next achievement was 10% of body mass lost. After that, my next goal is to become overweight instead of obese. My eventual goal is to celebrate my 25th wedding anniversary in the same dress I was married in. The good news is that clothes that were getting too tight are starting to be baggy.
If you are wondering, I am on a bariatric diet without undergoing the surgery. I was originally prescribed pills to help curb my appetite, but rejected them and have been able to continue the food plan without them. At about a rate of 3 lb per month. In addition, I have been exercising by simply walking. It was difficult to maintain the walking through the winter, but with spring coming on, it should be easier again.
My energy levels have increased and my next increase in activity will be to add yoga to the mix. I think I'm sleeping better since I'm not nearly so tired during the day and I wake up an hour earlier than I was before. Still not dreaming yet.
Gary F
Final Approach
A good sleep specialist will make adjustments in machine settings and masks or other hardware to make the treatment work effectively for any given patient. It is not uncommon to have problems with BiPAP or CPAP at first. Weight loss can be an effective treatment for sleep disordered breathing. I wish I could be successful as you have been in my attempts to loose weight.
http://www.sciencedaily.com/releases/2009/12/091203222145.htm
http://www.bmj.com/content/339/bmj.b4363.extract
http://www.sciencedaily.com/releases/2009/12/091203222145.htm
http://www.bmj.com/content/339/bmj.b4363.extract
gprellwitz
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Grant Prellwitz
Congratulations on the weight loss! It's good to have stepped goals like that. As I know you know, weight loss can help with so many aspects of everyday life, including sleep apnea, hypertension, diabetes, etc. I'm definitely trying to follow in your footsteps as far as weight loss goes. This was interesting: http://www.laparoscopy.com/pleatman/am-i-morbidly-obese.htm