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The Beginning of Another Journey
Hello everyone.
So... I was a happy fellow, enjoying life, pip pip, ho ho and all that. Then suddenly, about 5-6 years ago, I started noticing weight gain, which I figured was just a natural metabolism change; fatigue, which I figured was just a result of the weight gain; and some angina/paroxysmal atrial tachycardia, which I figured was the result of the two combined. I simply went along with life as best I could until last summer, when I shared a room with a young man during a gaming convention and upon waking up, he told me, "Dude, do you know you stop breathing when you're asleep?"
I didn't know.
Needless to say, it was somewhat disconcerting to find out, and the missing piece of the puzzle needed to realize that what I was going through was not normal aging in the late 20s/early 30s. I spoke to my doctor about it, and last night, on his orders, I had my first polysomnogram sleep study at the local hospital. I got to try the masks over my face, but without clamps and without air, and then I went to sleep normally and I was studied. At 2AM, I was awakened and they were ready to try a mask on me for the remainder of the night. First one they tried was a nasal pillow, and the sudden influx of air (the lowest setting, apparently!) was so rich that I choked on it, which woke me up completely because I was now afraid the thing was going to kill me. I asked if the pressure could be lowered, my sleep nurse told me that was the lowest setting, so I asked her for one of the larger mouth-and-nose masks, theorizing that the larger volume would translate into less pressure. It did, and I was able to wear this mask for about 15 minutes, but I couldn't get comfortable with it, and after taking it off for a moment, I found that I, who have never really been claustrophobic, couldn't bear the constriction I felt when it was put back on. I experimented with it a lot in those 15 minutes - I knew I could pull the air tube at a moment's notice, and that it was the air, not the mask, that I was finding intimidating. I knew that if, for some reason, the air flow stopped and the small ventilation holes on the mask all plugged up, I could push the plastic in with little effort to let outside air through, so there was no chance of the mask suffocating me. I KNEW these things, logically, and yet I still couldn't psyche myself up to wear it.
That's when the sleep lady said, "Look, you need this. I shouldn't be telling you this at all, but even though I've seen worse in general, you're the most severe case I've ever seen in a 30 year old male. Your O stats drop into the 70s, and you stop breathing more than 50 times per hour. You need this."
I will forever be grateful to her for leveling with me like that, because if she hadn't, I would probably not be as determined as I now am that I have to do SOMETHING about my now-confirmed sleep apnea. But of course, hearing that made what little hope there was of actually going back to sleep last night impossible, mask or no mask.
So here I am. Yesterday I thought I might have a sleep disorder. Today I'm sure that I have a severe one, that I have literally not slept more than two consecutive minutes for the last six years. I need a CPAP treatment, but every time I think about wearing it I become a little nauseous. I browsed your forums this morning, and I became aware of the things they don't talk about when they're trying to talk you into the CPAP - reddened nose, constriction, etc. Surgery's out of the question and I'd probably gag on this oral device, though, which makes CPAP the only option if I don't want to die in my 50s and be tired all the time up until then. The sleep nurse told me that that lowest setting pressure is only for while I'm awake, that she actually makes it MORE pressuring once I'm asleep until she sees best results, and that a CPAP machine at home would do the same automatically based on a time scale, and that thought is frightening to me. A follow up study is being scheduled in a couple of months - I have that long to get over this psychosis and try those masks. I know what I WANT to do - I want to go get a mask now and start wearing it, without the air, both awake and asleep, so that I'm completely used to it by the time the follow up study is done. Apparently not feasible, because insurance won't cover it until it's prescribed and it won't be prescribed until they have their study results.
What have you guys done to get over hurdles like this?
Views: 119
Replies to This Discussion
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Permalink Reply by Jerry on
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Hi Judy. :) I did ask both the lab and several CPAP providers to loan me just a mask to get used to - they were unwilling to do so. Now that I'm a little more familiar with the process and know that these masks apparently get replaced by insurance every three months, I can see what kind of a big deal a 1 month loaner would be.
So I did manage to fall asleep with the mask on for a little while last night. But when I woke up, I wasn't wearing it. According to my roommate, I took off the mask, turned off the machine, went to the bathroom, stumbled back to my bed and fell asleep again, all without ever regaining consciousness since I have NO memory of any of these events. :) That being the case, I have absolutely no idea how long I actually got the treatment for, probably not long. But just knowing that the mask has gotten to the point where I can deal with it subconsciously seems like a victory to me.
And if I feel this good after "probably not long", I'm definitely sold on what a full night with the thing will be like! I feel about 30% more alert and aware than I usually would at this time of day, and I can sense a little bit more of an energy reserve, although sadly life as a tech gives me no time to actually exercise and see exactly how far that new energy can go. Perhaps this weekend I'll get a taste of that. :) If no one minds my ranting and raving, I'll probably give a daily report for the next week or two, just to get feedback on whether anyone else's early experiences were like this, and who knows, maybe helping someone down the road if they read this to know one set of possible circumstances to expect. :)
--Jerry
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Permalink Reply by Judy on
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Congratulatons!!! You've come a long way already! By all means, Jerry, do give us a blow by blow account of how things progress for you. It will be a big help to those who are just starting out and having similar problems.
FYI I've only woke up twice w/my mask off and PAP turned off. The one time I do remember waking, going to the bathroom, going back to bed and promsising myself I'd put the back on "in a minute". I don't remember anything about the other time but am sure it was a similar event.
There were more than a few times in the "early days" of my PAP career that I deliberately took the darn thing off, turned off the PAP and said to heck w/them and went back to sleep. Or not back to sleep. But, fortunately, it was always past the 4 hour mark as best I can remember.
As for as the loaner mask I mentioned: the major mask manufacturers, Resmed, Respironics and Fisher & Paykel, will replace FREE to the local DME provider most all of the masks they manufacture that patients have tried and been unsuccessful with IF the DME provider will fill out a form and return form and mask W/IN 30 DAYS! And most, if not all sleep labs, sterilize and reuse the masks they use during in-lab titrations.
Unfortunately, you are going to find that the sleep "professionals" we must deal w/are not always the most truthful we will ever encounter. Sometimes it is just easier for them to fabricate a little to avoid taking the time to explain a situation or to reveal their ignorance. Always take what they say w/a grain of salt and a bit of skepticism and even go so far as to double and triple check what they tell you if it is something you feel strongly about or are concerned about.
By the way, that free mask replacement was told to me and verified by more than one local DME provider RRT. Its not a tale I made up to make the local DME providers look bad. Far too many do a good enough job of that on their own w/o my help or my embellishing a tale. The same holds true for the sleep labs.
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Permalink Reply by Renee on
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Hello Jerry,
I like your earlier subject line – The Beginning of Another Journey and “pip pip, ho ho and all that” . . . seems to me right off that you’ve got the attitude and spirit to carry you through . . .
You surely have been frightened enough even before getting started . . . not a pretty way to start. And, now it’s amazing how far you’ve come in such a really short period of time - and I so glad for you that you can appreciate your progress as a victory !
I think that you have done a lot of good figuring along the way all by yourself for someone who is so brand new to sleep apnea and CPAP. I am pretty new myself – but, when I was at the very beginning, I was not as clear sighted as you. Also, I see that you have gotten a lot of good posts – I especially like what Mary Z had to say and I heartily concur with everything in Judy’s posts, particularly the part about not keeping your mask on too long and getting stressed . . . 10-15 minutes and take off if necessary and try again, gradually working up the length of time you can use them w/o getting anxious or stressed. And, while I may an awful lot of “Yelps” about this, if I had a night like you described – I tried 17 times, until 5:30 AM. I never got more than 5 minutes of sleep – in the very beginning of adjusting to CPAP – I would have taken the mask off that night rather that getting myself all worked up – and exhausted – and consciously, or unconsciously reinforcing my concerns. I’d have preferred to determine to try again the next night with the idea that not all nights would be like that.
You are doing so well now that air pressure may be a thing of the past but, as I too began with that sort of a problem, I thought I’d mention my beginning problem with air to you . . . Like RL, my titration was, as my doctor described, “very difficult”. I woke up whenever the tech put up or adjusted the air pressure and I wasn’t able to sleep at any air pressure level and, so, no pressure could be diagnosed from the results of titration. So the doctor decided to just start with 9, although, he said that would not control my apnea, and then we would see how it goes. He also suggested that because of my very difficult titration that there was a good possibility that I would not be able to use CPAP treatment because his concern was that no matter how determined I was that my brain just wouldn’t let me sleep with the air pressure.
However, I like you had already realized the seriousness of OSA and I was resolute to use CPAP come hell or high water – and, luckily, I, too, had already discovered the SG forum.
And, by the way – although it was a hard go at first – I have been successful and now use CPAP 7 nights a week ! I tell you that to offer you hope and encouragement ! By the way, I also am using the Quattro mask and I find that, although I don’t put my mask on until I am actually intending to go to sleep, now that I am used to it, I can talk with it on.
Now, I don’t have the experience of others on SG, but as someone who started out with an air problem – which, by the way – good news, something for you to contemplate is actually possible – I no longer have – there’s something I’m wondering . . . you mentioned that – I tried 17 times, until 5:30 AM. I never got more than 5 minutes of sleep . . . I was jolted awake every time the machine tried to compensate . . . and you’ve expressed that that when you have an event that you experience increased air pressure – and that your doctor has set your PAP range for 4 – 10 . . . SO, I am wondering – is your air pressuring ACTUALLY INCREASING as you have an event?
I have had no experience with the “auto” feature of APAP, in case that is what you are using – and others can discuss that with you – because I have used ONLY STRAIGHT CPAP. But, the reason I am asking if you are experiencing increasing pressure at the time of events – well I’m thinking that I, too, would have been CONTINUOUSLY jolted awake – if not consciously – as you are – then, as in my sleep lab study, what I will call “unconsciously” – and, I think, I would, therefore, have been working against myself. And I don’t think I would have found my journey to using CPAP as probable, achievable and successful as I have.
Now, I do use the “ramp” feature of my CPAP unit and in the beginning it was set for 4 – 9 with a 15 minute ramp time. And, once it reaches its highest setting, in that case - 9, it stays there – constantly. So, I am not aware of any air pressure changes at the time of events. I hope for you that you can have a constant pressure so that you are not jolted awake and can get to using CPAP comfortably and successfully.
Also, a side note, something that I have found mentioned a number of times on SG is that, when CPAP pressure is too low it makes people uncomfortable and, as RL mentioned again here, one can have improvement with the pressure being increased. Well, that can seem like a CRAZY idea to you right now – as it did to me – but, I found after I was using CPAP for a few weeks that, when I was ramping from 4 to 9 over 15 minutes – that in the lower of levels around 4, I actually wasn’t getting enough air to feel comfortable and, so, I changed the setting to 5 to 9, then 6 to 9, and then 7 to 9 – still with a ramp – and at 7 to 9 it was much more comfortable.
Also, your idea of, perhaps, using a mini-dose of RX to assist you to relax is medically recommended to help one adjust in the beginning of CPAP treatment. And that is something that you, wisely, thought of yourself.
I think that the way you have dived right in with your treatment, especially considering your formidable, frightening start – and that you got involved with SG – has been a really good way to get going.
Your posts show your determination, resilience, stick-to-ittiveness, good communication with all in your sphere and an enlightened approach. I hope you can also take it a little easy in the process. Allow yourself to take it a little slowly in the beginning if necessary and I think you will be surprised at how your progress can continue to build up. After all, as you know, you’ve had severe OSA for a long while, so now it may take only a little patience in order to get you to consistent, successful CPAP treatment.
And, bravo, continue appreciating your achievements !
You’re probably going to look back and say – Piece of Cake ! – Well, if not that, I still betcha’ you’ll be surprised and really proud of your success – and that you will find that you got there in quicker time than you ever expected especially given your daunting start !
Best and lots of GOOD REST to you,
Renee
Jerry said:Hi Judy. :) I did ask both the lab and several CPAP providers to loan me just a mask to get used to - they were unwilling to do so. Now that I'm a little more familiar with the process and know that these masks apparently get replaced by insurance every three months, I can see what kind of a big deal a 1 month loaner would be.
So I did manage to fall asleep with the mask on for a little while last night. But when I woke up, I wasn't wearing it. According to my roommate, I took off the mask, turned off the machine, went to the bathroom, stumbled back to my bed and fell asleep again, all without ever regaining consciousness since I have NO memory of any of these events. :) That being the case, I have absolutely no idea how long I actually got the treatment for, probably not long. But just knowing that the mask has gotten to the point where I can deal with it subconsciously seems like a victory to me.
And if I feel this good after "probably not long", I'm definitely sold on what a full night with the thing will be like! I feel about 30% more alert and aware than I usually would at this time of day, and I can sense a little bit more of an energy reserve, although sadly life as a tech gives me no time to actually exercise and see exactly how far that new energy can go. Perhaps this weekend I'll get a taste of that. :) If no one minds my ranting and raving, I'll probably give a daily report for the next week or two, just to get feedback on whether anyone else's early experiences were like this, and who knows, maybe helping someone down the road if they read this to know one set of possible circumstances to expect. :)
--Jerry
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Permalink Reply by RL on
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Hi Jerry,
It's great to see you are so motivated to get your CPAP therapy working for you. Can you let us know the specific model of CPAP that you are using? It would say the full name on the operation manual. That would tell you if there is a data card that can be read by your DME and MD, and if there is any software you could get to follow your own therapy results. Does your unit have the heated humidifier also?
I started my therapy with a Respironics Remstar Plus CPAP with a steady pressure of 7. The unit worked o.k. for me, but did not have the "efficacy data", only the "compliance data". Then my pulmonologist ordered an Auto Adjusting PAP unit for me, Respironics Remstar Auto A-Flex which has the efficacy data on the data card so we can tell if the therapy is actually working for me. My setting is similar to yours - 5-12. I recommend that you check which type of unit you have to make sure you get the type that will give you the efficacy data, so you will have access to that once you get adjusted and able to do more hours each night. If your CPAP is being rented to you, this may not be as critical right now, but the sooner you get the efficacy data capable unit, the sooner it can be purchased for you by your insurance, so you will have the right machine for long term therapy monitoring.
In switching from the steady pressure cpap to the auto adjusting cpap, I have found that it can be a little uncomfortable when getting started for the night, as the machine and I adjust to each other's breathing patterns. Once I get a comfortable sleeping position, I focus on relaxing and breathing at a pace that is comfortable for me, and sometimes breathing a little against the machine's pattern which adjusts gradually to me. I have not been awakened by the machine adjusting during the night, but occasionally find I get a little bit of mask leak when, I believe, the pressure is at the higher level, maybe 12. You might find it easier to get used to with a steady pressure instead of an adjusting pressure, but they won't know what pressure to use for you until you get a titration sleep study. Your Auto Adjusting machine can be set to a steady pressure by the DME, per MD Rx.
Also, check if your cpap has a "ramp button". You can use this to force the machine to start and stay at the lower pressure for a specified period of time, gradually increasing, hopefully, as you fall asleep. (check for this in the manual). You can also use this each time you start during the night if you need to start over, by just turning the cpap off, then back on, and press the ramp button. This way, you can relax and get into a regular breathing pattern without the cpap hitting you with a stronger pressure that can make it harder to fully relax.
Another suggestion: check out your local A.W.A.K.E group for additional info and in person support. Here is a link for your area:
http://www.sleepapnea.org/cgi-bin/databasenew.pl?NH&&State
Good luck! Don't give up!
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Ah well, another day, another weird experience to report. Taking Judy's earlier advice, I put it on two hours before bed and spent some time doing regular things. The biggest problem with that approach was that I couldn't get the mask into a comfortable, non-leaking position while sitting up straight... definitely designed for someone lying down. :) My mask is one of those that has the twisty thing on top to control how much pressure is on the bridge of my nose versus forehead, so I tweaked that until I found a result I could live with while awake and went with that. I got to the point where I could ignore the thing, which was great, and I was just starting to dose off naturally... when sure enough, suddenly I see flashing blue lights in all my windows because New Hampshire's finest are having problems with my neighbors. That was distracting, and of course I had to take the mask off to do the nosy neighbor thing and see who/what was going on. Eventually I put the mask back on and, again, had a nice successful two hours. :) Woke up at 2AM, spent some time chatting with my roommate (it's worth mentioning that my roommate is noctural, which is why he's always up and able to observe my shenanigans during the night), had a snack, went back to bed. I'm pretty sure I put the mask back on, but when my alarm went off at 8AM, the mask was off my face and lying next to me again - with the machine still active and blowing air. I'm sure /that's/ gonna look like leak city on the report. :)
I'm thinking I may share this "journal"/thread with my therapist when we have my one-month appointment, so she can match logs to the descriptions of the night. This, of course, will mean being honest with her about the fact that I'm accessing the SD card regularly, which, last night I copied all of the data off of it and I have gotten my hands on a copy of Encore Pro for my work computer, so I'm going to actually look at and try to interpret some of the data today. Do therapists usually get, how shall we say, "cranky" about patients having unrestricted access to the data? It's worth noting that, according to her, my insurance isn't really concerned about compliance so it's not like I would /have/ any reason to tamper with what's there.
In fact... I'm including the data in an attachment to this entry. :) I'm going to put it on a virtual SD card (my work computer doesn't have a real SD card reader) and give it to Encore that way, anyone else who wants is welcome to do the same and see what it says. :)
To respond to everyone's comments:
Judy: Thanks for letting me know this "mask off in my sleep" thing is normal and that apparently it won't keep happening forever, since you only had the two experiences. As for sleep "professionals", I know what you mean, but I actually like my respiratory therapist a lot, we established a rapport I think (and I'm not just saying that because she might read this! Heheh. :) Actually, the fact that I'd be interested in having her read it probably says enough about whether I think she's a useful/valuable colleague in the quest to get me better sleep. A "guide on the journey" as it were).
Renee: Thank you for your words of praise and encouragement, they are definitely appreciated. :) The person who wrote the original post could never say this, but now I've almost reached a point where I might ask the therapist to bottom out the pressure at 5 or 6... I can see how 4 might be making me a little uncomfortable in terms of how much air I get on a typical breath. I'm definitely not afraid of the machine or the pressure anymore. The trick now is just to figure out how to get a full night's sleep with the darned thing. ;)
RL: Sup buddy. ;) Up the thread a bit there's a link to the exact CPAP machine I have, I believe it's the same as yours. :) Does that make us CPAP brothers? ;) The CPAP does have a ramp button, but it's useless in my case as the pressure is set to 4 anyway. I think I'm always going to want it to be an adjustable pressure, but yes, as I was saying to Renee, I can see the value of a slightly higher base number now. It's way too early to be sure, but I think next month I'll probably request the machine be set to 5-14 or 6-14, which my doctor is cool enough that he'll sign off on just about anything I ask for in this regard.
And on that note, it's on with the day. See y'all tomorrow. ;) - Attachments:
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20100422pm.rar, 119 KB
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Permalink Reply by Mary Z on
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Jerry sounds like things are going a bit better for you. If the neighbors often have problems involving the police department it might be helpul to have some light blocking shades.
I don't think any doctor would have a problem with you accessing the data. You could ask if they minded if you tweaked things a bit. Not every doctor likes that, and you didn't mention doing it, just your idea of what your pressure should be. It's got to be fun having a roommate awake during the night who can report on your activities. Most of us would need a video cam which would be pretty boring most of the time. I would like to watch those times when the mask goes off for unknown reasons.
Hang in there, it sure sounds like you're on the right track. You may feel a special kinship with someone with the same machine, but I think we're all part of a brother/sisterhood of XPAP users, dental appliance users, and surgical intervention folks. I don't know if we ever decided on one -good collective name for our group, but I think "Apneans" is good. Or night non- breathers
Keep up the good work, I'm glad your seeing it does get better, and that you have good support.
Jerry said:Ah well, another day, another weird experience to report. Taking Judy's earlier advice, I put it on two hours
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I'm so delighted to hear about your improvements!!! Rome wasn't built in a day and you've REALLY come a long way in a short time giving all the problems you were having at the start. How refreshing to hear you have a good RRT to work with!! So many don't.
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Permalink Reply by 99 on
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rome was not built in a day, i was not on that job
Judy said:I'm so delighted to hear about your improvements!!! Rome wasn't built in a day and you've REALLY come a long way in a short time giving all the problems you were having at the start. How refreshing to hear you have a good RRT to work with!! So many don't.
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Hey Jerry,
Sounds like a lot of good news!
You sound like you are finding your way to adjusting to Quattro . . . you would be amazed to read on SG about people having to try as many as 10 masks before they can adapt . . . so you are really coming along fantastically! By the way, if you’re just getting up briefly to check something out at night, you can simply turn off your xPAP unit and unplug the hose from your mask and – and then reattach the hose and restart the machine – which I find a LOT EASIER than taking the mask off and putting it on again.
I find it amazing how you are already acclimating to the nuances of air pressures and are considering the possible changes that you might request with your doctor next month.
In connection with that, although I surely concur with raising your lower pressure up from 4, since in earlier post you mentioned how much better you are already feeling, I’m wondering if it might be better for you to at first have an established pattern of steady, continuing nights of at least 4 hrs each night with xPAP, then 5 hours, then 6, then 7, then 8, etc., whatever # hours you sleep – and, especially given that you have no medical requirement to increase your pressure or knowledge that doing so would necessarily have a beneficial effect – I think you could be better off if you are sleeping with xPAP comfortably 7 nights a week over, at least, several weeks or a few months, before you increase your pressure – as you suggested from 10 to 14. I am new to xPAP, so others would, perhaps, be better to weigh in on this, but that seems to be a large increase to be made all at once – and so soon – and without evidence of its purpose. As I understand it and, again, I am new, so others could be best to weigh in, one, generally, has a pressure increase or decrease based on one’s requirements or necessities – I suppose based on how one “feels”. And, so far you are already starting to feel better as you mentioned – feel this good after “probably not long”, I’m definitely sold on what a full night with the thing will be like: I feel about 30% more alert and aware . . . can sense a little bit more of an energy reserve . . .
Regarding your mention that you – have a ramp button, but it's useless in my case as the pressure is set to 4 anyway. . . I think you may have a different of idea about the benefit of the ramp feature. Here’s how I use it . . . First off – I use CPAP – CONTINUOUS vs AUTO positive air pressure. And my CPAP pressure is 12. BUT, I “ramp” from 9.
That means that all night I have a CONTINUOUS pressure of 12 – and, I think “continuous” is best because, especially in the higher pressure areas, I’ll say 12 and above, I think “auto” air pressure gusting or bursting forth to quell each event would be too disruptive for me. If I had lower pressure and / or few events, then I would probably prefer “auto” but, in my situation, I have enough apnea events waking me up (even though I’m not aware of them) – without having bursts of air pressure waking me up on top of it.
Now back to the ramp feature . . .if your xPAP is set at 4 – 10 then with the “ramp” ON – the air pressure starts out at 4 and over the length of time at which you set the ramp (say 15 minutes) – your air pressure would smoothly “ramp” up to 10. In that way, you do not experience a first blast of pressure at your highest level.
HOWEVER – I am only familiar with CPAP and it may be that the “ramp” feature is used ONLY in conjunction with CPAP – since with APAP one’s pressure gusts or blasts – as needed – and, therefore, the ramp may not be of use with APAP – but, I don’t know . . .
But, all in all, it really does sound like you are doing very, very well and I do wish you continued nights of more restful hours of sleep – and restful DAYS as well.
Renee
Jerry said:Ah well, another day, another weird experience to report. Taking Judy's earlier advice, I put it on two hours before bed and spent some time doing regular things. The biggest problem with that approach was that I couldn't get the mask into a comfortable, non-leaking position while sitting up straight... definitely designed for someone lying down. :) My mask is one of those that has the twisty thing on top to control how much pressure is on the bridge of my nose versus forehead, so I tweaked that until I found a result I could live with while awake and went with that. I got to the point where I could ignore the thing, which was great, and I was just starting to dose off naturally... when sure enough, suddenly I see flashing blue lights in all my windows because New Hampshire's finest are having problems with my neighbors. That was distracting, and of course I had to take the mask off to do the nosy neighbor thing and see who/what was going on. Eventually I put the mask back on and, again, had a nice successful two hours. :) Woke up at 2AM, spent some time chatting with my roommate (it's worth mentioning that my roommate is noctural, which is why he's always up and able to observe my shenanigans during the night), had a snack, went back to bed. I'm pretty sure I put the mask back on, but when my alarm went off at 8AM, the mask was off my face and lying next to me again - with the machine still active and blowing air. I'm sure /that's/ gonna look like leak city on the report. :)
I'm thinking I may share this "journal"/thread with my therapist when we have my one-month appointment, so she can match logs to the descriptions of the night. This, of course, will mean being honest with her about the fact that I'm accessing the SD card regularly, which, last night I copied all of the data off of it and I have gotten my hands on a copy of Encore Pro for my work computer, so I'm going to actually look at and try to interpret some of the data today. Do therapists usually get, how shall we say, "cranky" about patients having unrestricted access to the data? It's worth noting that, according to her, my insurance isn't really concerned about compliance so it's not like I would /have/ any reason to tamper with what's there.
In fact... I'm including the data in an attachment to this entry. :) I'm going to put it on a virtual SD card (my work computer doesn't have a real SD card reader) and give it to Encore that way, anyone else who wants is welcome to do the same and see what it says. :)
To respond to everyone's comments:
Judy: Thanks for letting me know this "mask off in my sleep" thing is normal and that apparently it won't keep happening forever, since you only had the two experiences. As for sleep "professionals", I know what you mean, but I actually like my respiratory therapist a lot, we established a rapport I think (and I'm not just saying that because she might read this! Heheh. :) Actually, the fact that I'd be interested in having her read it probably says enough about whether I think she's a useful/valuable colleague in the quest to get me better sleep. A "guide on the journey" as it were).
Renee: Thank you for your words of praise and encouragement, they are definitely appreciated. :) The person who wrote the original post could never say this, but now I've almost reached a point where I might ask the therapist to bottom out the pressure at 5 or 6... I can see how 4 might be making me a little uncomfortable in terms of how much air I get on a typical breath. I'm definitely not afraid of the machine or the pressure anymore. The trick now is just to figure out how to get a full night's sleep with the darned thing. ;)
RL: Sup buddy. ;) Up the thread a bit there's a link to the exact CPAP machine I have, I believe it's the same as yours. :) Does that make us CPAP brothers? ;) The CPAP does have a ramp button, but it's useless in my case as the pressure is set to 4 anyway. I think I'm always going to want it to be an adjustable pressure, but yes, as I was saying to Renee, I can see the value of a slightly higher base number now. It's way too early to be sure, but I think next month I'll probably request the machine be set to 5-14 or 6-14, which my doctor is cool enough that he'll sign off on just about anything I ask for in this regard.
And on that note, it's on with the day. See y'all tomorrow. ;)
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Hmph. Wouldn't let me download the .rar I uploaded here. Something weird with the filesystem, I guess. I'll have to try again next week.
Mary Z: Apneans. I like it. :) Yeah, my roommate enjoys my shenanigans, night owl that he is.
Judy: Yeah, she's cool. Or at least seemed so on first meeting.
99: Well why not! I bet Rome could've been built in a day if they'd had CPAPs the night before for a good night's sleep. ;)
Renee: I'll try just taking the hose off next time, but I think it's easier for me at this point to work with the mask. But I'll try it, who knows. :) The thing with APAPs, my max pressure could be 10 or 20, it really doesn't matter, it never goes there unless it detects a need. Kinda makes me wonder why they don't just set them to 20 and get it over with, if the machine stops at the pressure it thinks you need what's the point? :)
So in my case, being at 4-10, the only pressure I ever /experience/ is 4, because when I'm awake and breathing normally there's never an incident for the machine to respond to. My ramp button is therefore useless only because there's noplace to go down to. If my minimum pressure was set to 6, and I didn't like it for some reason, THEN I could hit the ramp button and have it drop to 4 for 20 minutes and slowly move me up towards 6. The only reason I think I might like 5 or 6 as the minimum is because I think the increased air flow will stop me from having too much CO2 intake, at 4 I can feel myself rebreathing my exhaled air sometimes and it's that taste of exhaled air that makes the mask feel claustrophobic to me. I really don't think the minimum would have any impact on my actual OSA at all.
New question for you guys: Do you find that a stuffy nose is a bigger problem with these things on? I've always had a fair amount of mucous buildup in my nose, maybe a mild allergy or something, never bad enough to bother me so I've never done anything about it, but now that I'm wearing the CPAP I find myself taking the mask off to blow my nose frequently and just generally wishing my nose was a lot clearer than it is. Any thoughts?
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Well GOOD MORNING ALL! :) You know what's REALLY nice about Saturday mornings?
SLEEPING IN! :)
None of that "crap, it's 8:30, guess I can't try to sleep with this dumb mask anymore, I've gotta get to work". Nosiree, instead it's, "I'm GOING to get 4 hours of sleep with this thing on if I have to keep trying until SUNDAY to do it!"
Thankfully I didn't have to wait /quite/ that long. ;) I got my 4 hours between 5-9AM this morning, along with a couple of 1 hour stints and, yes, 3 hours of old-fashioned stop-breathing sleep on top of it (this time I'd apparently removed the HOSE in my sleep. Meh. Morning breath in a mask with no airflow to it is horrible.) For those worried about my waking so much in the middle of the night, last night's cause was somewhat mundane by comparison to the usual OSA issues - a toothache. My dental hygiene has been somewhat lax over the years and I think the extra air may have made my need for a couple of fillings more, shall we say, "pronounced". I'm one of those no-medicine-unless-absolutely-necessary types, so I haven't taken (and won't take) any pain medication for it, so, sadly, the occasional wake-with-a-throb sensation is the price I pay, at least until I can drag myself to the dentist.
Anyway, no dumb toothache is going to ruin the moment of hours of uninterrupted sleep. :) I can definitely feel the difference, and I get another guaranteed night of it tonight before the work grind kicks in on Monday. I continue to get acclimated to the mask so, with any luck, by Monday I won't have any issues falling asleep with it on anyway.
Happy weekend, guys!
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Last night I gave up on the device for the first time. Ironically this was because I felt like I just wasn't getting enough air from it while awake. :/ I'm now feeling more certain that 4 is just too low for me. If anyone had told me I'd believe that last month, I'd have thought they were insane. ;) But my RRT let me experience 10 for a minute during my interview with her, and it certainly wasn't anywhere near the bad experience I thought it would be, and last night I just felt myself gasping for breath at 4. I'm going to call her tomorrow and request that it be ramped up, and I'm going to get my doctor on board for it as well. 6-12 should be a nice range to try next.
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