Part 2 can be found here: http://tinyurl.com/s5rr2
My last reply is:
Love Texas – at 19:57, I had a second person recommend the sleep center beds. It is so far 2–2 for sleep center and tempurpedic beds. I guess I need to find local resellers and try them out, so to speak. I had hoped to do some investigation this week but caught a cold. Try using a nasal mask when you have a cold. I finally gave up last night.
Dennis in Colorado – at 20:11, I suspected as much. The situation is probably the same in California. If “I can’t get no satisfaction” with the MD or RT I will check cpap.com for alternative masks.
Thanks again folks. I have no intention on giving up on this and appreciate the help.
Mike
Oops, the above was from me.
Reply from PBQ – at 20:42
CAM- If you go through an insurance co. you will need a prescription. If you want to buy a mask you don’t. At least that is the way it works here with my ins. co. My doctor wrote a script for my lifetime- so I can get any mask every 6 months (and never have to see MD again) for my lifetime! Cool huh? If you want to go through CPAP dot com I don’t think you need a script. Check with them.
PBQ, thanks for the tip. I suspect that the insurance company won’t pay for a second mask so soon but we will see.
I will check with the MD about getting a lifetime script, though I may wait awhile. I have only been at this for a couple of weeks and he and the RT are not properly trained.
Mike
I feel like I am talking to myself. This is the first time I have tried to start a continuation thread.
Mike
CAMike - I have purchased a mask from cpap.com without a prescription. They just need one for the machine. now here’s the thing to realize-the folks that deal with insurance companies pad the prices mercilessly. As an example, the mask that I use (and like) will in no way last the 6 months between insurance paid replacements. When I called the “Official” supplier, they took three days coming up with a price for a mask purchased by a customer for cash. They quoted a price of $185. Only thing was, I had already ordered the same one from cpap.com two days previous for $68. Also, when I asked them for the DC power cord for my machine, the insurance based supplier said “Huh?”. cpap.com sold me one for $24.
By the way, the mask that I currently use and find to be comfortable and which stays sealed (I am a side sleeper) can be seen HERE
By the way, about that mask. There are three replaceable parts to it which wear and may need replacement over time. If you price them out, they come to $79 for a set. The whole new mask is now $64. Do the math, and just stock a spare.
Spooky. Eccles and I have the same mask.
It is the best one I’ve found. Only problem I’ve had is that I get leaks at the bridge of my nose unless I adjust it so tight there that the bridge of my nose gets sore the next day. THAT, however, I can live with. This baby doesn’t get knocked off no matter what.
bump for BB.
bump
Eccles, now that is a scary mask but if it works then great. At least I will have my Halloween costume ready. I decided to try the large size of nasal pillow. No, I do not have a big nose (well, maybe I do). Anyway, it seems to fit better. If it does not work then I will call the medical supply company tonorrow and see what they can do. Not much I expect.
Thanks for the tip about the unholy alliance between the medical supply company and the insurance company (I think you mentioned it before). It is good to know that I can get different masks and supplies at a more reasonable price. As an example, the manual for the device says to replace one type of filter every 30 days but the insurance company will pay to replace them every 3 months. Major disconnect. If I have to pay for the various sundries I would rather bypass the insurance company and get the better price.
Mike
CAMike - Another example is the fact that insurance Co. is still paying like $200/mo in “Rental” for my machine (now 4 months into this one) after an initial “rental” payment of about $400 the first month. I just checked at cpap.com and get the whole mess for about $500 finished and done with.
However, you will not find anyone at the Ins. Co. who is overjoyed to have this pointed out, as they would rather keep doing it thier way.
Eccles, I hear you. The system is broke.
By the way, the larger nasal pillows seem to be working better. It will be interesting to see if that was just a fluke.
Mike
My ins. co. bought the machine for me. No rental -silly stuff. Eccles and PH I think I might try your mask next time I order. How long has it lasted for you?
PBQ- I am on the 4th month on this mask, and it is getting to the point where it needs to be replaced (I already own the replacement, keep it for spare parts). This mask has a neat cushion of blue “Gummy-Bear” material, and then the actual seal to the skin is made by a membrane of silicone that inflates under the pressure of the cpap to effect the seal to your face.
When I first got it, I was afraid to do the procedure they recommend for fitting it to your face individually, and so there was undue pressure on some of the gummy-bear stuff nightly. Also, when cleaning it, I was afraid to disassemble it (till I got a spare) which also resulted in alot of flexure of the blue stuff. What happens is that over time, the blue stuff stiffens with repeated flexing, and so the mask very, very gradually loses its ability to keep a perfect seal. (I suspect that the silicone membrane also is getting a little less pliable). Along the way, I performed the fitting procedure (which is easy and makes alot of sense once you have used the mask for a while). it involves boiling the blue stuff in water, cooling it a little, and then quickly re-assembling the mask and allowing the straps to press it into your face. this re-contours the padding to fit your face very nicely.
So this first one of the series for me has lasted about 4 months, and I’m still using it and going to give it about anohter month, if I can.
My personal experience with this mask has been very positive. I would be interested to hear from PH whether he did the fitting procedure, as this might make a difference in the pressure needed at the bridge of the nose. Also, are you using the variable pressure gizmo at the top of the nose?
I would be afraid of boiling it too! Sounds interesting. Thanks.
PBQ- trust me. It is really easy to do, and it makes a world of difference in the fit, from “off the rack” to custom.
Thanks Eccles, I write a fashion column for a monthly mag. I know what a difference better and best make. Can’t wait to try it!
Eccles—first I need to thank you for all your info. I have recently decided to go back to the old CPAP (rx’d one 10 years ago) I have for last 8 years used a custom-made mouthguard which really has not done the job for years(but I hated the CPAP). During my trial last week I used an APAP which I loved but, only used for 5 nights. Of course my DME won’t let me have one of those as they were for testing only—you know the line. Anyway may just pay out of pocket for one off cpap.com.
My point: I wanted you to know how grateful for this thread,for your wealth of knowledge and all the help it has provided me these last few weeks. I was so pleased to find cpap.com . I would have never figured out why my DME was making me so nuts if I had not seen this thread or did the research on cpap.com.
I also wanted to add that I have a similiar mask—I have the one with the gel stuff on top. That mask has been super compared to mask I used many years ago. I did not realize we were to boil them (DME did not mention it!) after reading this thread last night (and checking out the info on cpap.com) I timidly tried to do so by putting it briefly in boiling water but not for very long. I did worry that it would “cook the gel” by boiling it!! The fit was much better but I have developed a stuffed nose and could not use the cpap last night. I will keep playing with it and hope to work out the situation with getting a new machine soon.
My DME first told me I could only get what she had the most in stock but, after reading up on it I went back and told her I thought I needed an APAP because I am swallowing so much air with my regular CPAP. She said I could get an older version of the Remstar auto (before the c-flex) but my insurance would not cover the difference and it would cost me at least $800 (without heating unit and she implied it might be one of the used ones!) Thanks to you I now know that I get the newest Remstar auto w/c-flex w/heating at cpap.com for $700--why wouldn’t I do that??
I understand that the system is definitly broken. I think it is an excellent example of how crazy our health care system is. That the insurance company says—you can only get $1500 a machine no matter which machine. Then the DME works out deals with cpap makers to get good deals by buying in bulk…why would a DME sell me a machine they have to special order and not make much profit on?? They are not going to do it.But most folks do not understand this and take whatever the DME says they are to take (both my husband and I have two cpaps that don’t meet our needs but we have paid out over $800 in copays for them because we did not know there were choices or that we had a say!)
Sorry for the long post but wanted to thank you for this thread:o)
Soxandshoes-
That’s the beauty of this forum. We all learn from each other. Each and every one of us brings our own experience to the table, and in so doing we generate a knowledge base that the scoundrels and wastrels of the world cannot stand before.
I have been absolutely astonished by what I have encountered in the health care system s I age, as people develop serious conditions such as diabetes and Sleep Apnea, they are just thrown into a single fix without much guidance, and without the support of others who have trod the same ground. Not all that many avail themselves of support groups, or forums such as this, and thus they receive less than optimal treatment for much higher prices than need to be paid.
But at least, if I can’t fix the whole world, I can participate here and be a member of a community that helps some, if not all.
bump
I have another question (as I am thinking of purchasing new cpap on-line) what is the best way to make sure we are doing business with a reputable company? I think this pertains to a number of our prep purchases as well—is there a way to track on-line companys?
There is really no clear cut way except referrals from folks on things like Fluwikie who have dealt with a site before. For many sites, you may find customer reviews in reselleratings.com, but that has traditionally been for tech type of stuff. but I have found that when they have a site covered with sufficient feedback, you know which ones to avoid.
Eccles: I have had “positive vibes” from cpap.com but now, finally deciding to go ahead and make the big purchase their phone number does not work…those vibes are getting a bit shaky. I am usually good judge of folks—in person but internet is a different story:o) I have e-mailed them so I will wait to see what’s up.thanks for your thoughts!
Folks, I have a basic question. I use the “nasal pillow” kind of mask. I switched to the large size from the medium that the RT fitted me with. The large size seems to fit better and I have gotten used to it (although I may have a pug nose if I keep on using it but that is something I can live with if the CPAP is working - I have always been nosy).
Anyway, how do I tell if the CPAP is doing its thing? I seem to wake up less during the night and my initial sleep interval is longer and deeper then before. I also sleep longer time-wise (8–9 hours, though half of that is more of a doze, versus 3–5 hours). However, when I finally stop sleeping, I am more groggy then before in the morning and more alert (to an extent) in the afternoon.
So, I would like to hear how the CPAP improved your lives and how long did it take (am I just being impatient?).
Any input would be appreciated.
Mike
Mike, I too slept longer but not well at first. Better than before my CPAP but not to my liking. It just takes a while to adjust to the new you. Keep at it. Keep tweaking the system. After a couple of months and a new mask I started sleeping like I used to- deeply, Even better after 6 months! The reason you may be groggy in the morning is that when you wake up you were in a deep sleep when awakened. Does this happen on weekends when you do not set your alarm? If it does not then I would suggest you go to sleep earlier than you are used to to try to get to deeper sleep earlier. Your body is adjusting to your changing sleep patterens so just be patient. Soon you fall asleep as soon as you put on your mask and wake up feeling refreshed!
PBQ, thanks. I am still adapting to the mask. Last night was awful. The mask kept slipping and the air blowing across my face would wake me up. However, I am now beginning to recognize when this happens (there is a difference in the sound when the mask is working correctly, so I adjust the mask and go back to sleep. From here and other sites I am beginning to understand this may be a long slow process. This morning I actually slept until 10:30am. That has not happened in years.
My sleeping patterns are generally not that different on weekends but I do tend to sleep better after I have been on vacation for a few days. I can’t use an alarm as my mind goes into this weird state where it anticpates the alarm going off so I am usually awake hours before it does. I sleep better without an alarm. The same mechanism that prevents me from using an alarm also assures that I am always awake hours before I need to be. Not sure if there is a medical term for this but hopefully the CPAP machine will help with that over time.
I will have patience. Thanks for the response.
Mike
My sweetie and one son has that alarm clock problem. Set a clock to alarm and they watch it go off. I’ve not been bothered by that problem.
My doctor said that men have a more difficult time learning to sleep with the mask than women do. Yes just have patience.
PBQ, thanks trying to be patient. There is definitely a change in my sleep patterns. I suspect that a change in mask may be in order, eventually.
I have another question and this may sound weird. After using the CPAP my front teeth hurt. I discovered last night that at times my lower jaw protrudes farther then normal and pushes against my upper teeth. Has anyone heard of this? I suspect that it is a variant of teeth-grinding and that I did not notice before because I did not sleep long enough for it to be a problem. With the CPAP, I think I may be sleeping longer and deeper so thus I am now aware of it.
I am not asking for medical advice as I plan on calling my Dentist on Tuesday. I was just wondering if any one out there had a similiar experience.
Thanks in advance, Mike
Yep Mike, The first couple of nights my upper lip and teeth were sore. Just getting used to the mask. However, since you have the nasal pillows, I don’t know. Do they lie on your upper lip? Could you be pressing them into your lip when you are on your side? Think about it.
Mike- my teeth and upper lip also hurt initially. This was due to the lower cross cushion of my nasal mask (think triangle encompassing the nose area). Proper fitting and adjustment did alot to alleviate this, and I think I just adjusted to it. In my style of mask, there is an inflating membrane that effects the seal to the face, and excessive pressure is not needed. Took a while to learn this.
I also found initially that I was clenching my teeth as a reaction to the pressure in the nasal cavities trying to make it down and out through the mouth. Again, learning that I didn’t have to do this made a difference.
Thanks. I do use the “nasal pillows” (nasal torture device would be a more appropriate description) and it does lie on my upper lip. I am still adjusting to the mask so each day there is a small improvement. The pain in my teeth is recent (the last few days). This has coincided with my finally figuring out how to use the mask so they are likely related.
PBQ, I did notice that I was not having the same problem when I slept on my back so you may be onto something.
Eccles, I had not thought about it being a reaction to the pressure. Makes sense though.
I guess more experimentation is required. Good to know that others have experienced something similiar. I guess I am not a mutant after all.
Mike
Mike I just got a great deal of help over at the cpap.com talk form for my various cpap questions. The navigation over there is a bit rough (someone suggested that you open a topic in another window so you don’t lose your place and have to keep doing the search). There is also a heated discussion on how to power a cpap for camping. Wonder if I should send them over here…they were a bit testy when I last left so not sure I want them around:o)
Also, Eccles, I have renewed faith in the cpap.com folk (turns out just a clitch in their phone system that made the 800 number not work. ) When I called it I got someone else who was peeved at all the calls that they were getting by mistake looking for cpap.com.The folks were rude and blamed the cpap.com folks for posting wrong number. I guess I was a bit nervous about spending that much money on an internet site and that added to my anxiety but they were great and I highly recommend them! I really love my remstar auto w/c-flex and h2o. Guess I need to figure out if the c-flex is going to require more energy. I do need to know focus on trying to get some sort of battery rig for loss of power days…
Soxandshoes- For what it’s worth, my measurement of my RemStar running in C-Flex mode shows that when it drops the pressure on the exhalation cycle, the power consumption goes down. In other words, it actually consumes less power if you use C-Flex.
This is easy to understand because the main consumption of power by the unit is the air compressor which blows air up the hose at you. During exhalation, the pressure drops, and therefore so does the power required by the unit.
Check if your RemStar has the 12V (little round) power connector on the back between where it connects to the humidifier and the larger round data jack. If it can run on 12V, all you will need is to buy the 12V vehicle cord from cpap.com, and then you can buy a 12V automobile jumper/power pack for about $50. That will hold you for a single night. beyond that, now we’re into the alternative power arena.
Yes, the manual states that I can use the machine with a 12 volt dc power source—if I buy the cord you were talking about. One of my ports is covered over. I wonder is that the data jack? I ahve a smart card but did not buy the “card reader” do you know if I can download info into my computer without buying all the other stuff? Also the folks over on cpap.com talk were thinking of camping for a up to 4 days. I remember reading something about that here. They will need to get 4 jumper/power packs:o) Do you mind if I take your last paragraph over to the folks on cpap? Thanks
soxandshoes - The amount of time a pack will hold you really depends on two variables. The first is what pressure your machine is set to. The higher the pressure, the more power it consumes. And that consumption rises pretty fast with pressure.
The second variable is what the battery capacity of the pack is. There are some cheaper packs with really wimpy batteries in them. The numbers I gave you are just a rough estimate. Also, for camping, if they will be near a vehicle, then they may not need an aux pack at all, they may be able to just pull power from the vehicle. Or else recharge the pack every day from the vehicle. If they are backpacking in, then you should know that the weight of the battery pack will equal the weight of everything else they are carrying, give or take.
Wow. Nobody ever told me to boil the blue gel to get a custom fit. Thanks Eccles, I’ll give it a try.
Power hungry - it’s not exactly boiling. There is an instruction sheet that comes with the mask that describes the procedure in detail. if you don’t have it, I’ll try to post the specific steps.
Folks, it has been very interesting following the give and take and I appreciate the time spent in responding.
I think I might be finally adapting to the “nasal pillow” mask but time will tell. I will be on vacation starting Thursday and won’t be back until Augist 6th. So, keep this topic acive and when I return I will share my experiences.
I am particularly interested in what will happen when I try to get my CPAP machine through airport security. I have been told that it is not a problem but it should be interesting.
Keep on prepping.
Mike
Eccles—Got the instructions here. Thanks again.
CAMike – at 02:31 I am particularly interested in what will happen when I try to get my CPAP machine through airport security. I have been told that it is not a problem but it should be interesting.
Mike, I’ve always put mine in my checked baggage, and have never had any problem (yes, I know, not having it in my carry-on baggage is a risk re: lost baggage). If you do carry it as part of your in-cabin baggage, I suggest packing the instruction manual with it, so the security officials can see exactly what that weird machine really is.
Dennis, thanks for the advice. I will likely not put it in my checked luggage and will instead carry it on. It is an expensive piece of machinery (although thanks to Eccles, I know that I can use cpap.com to get a cheap replacement if needed) and I would just as soon that it not be broken due to luggage-tossing or misplaced baggage.
I plan on bringing all the paperwork with me (including script) and we will see what happens. My mother had the same problem and got into many countries in Europe without major hassles so I am not expecting that I will be turned back. A full strip search I am not sure about. Mike shouts: “it is only a CPAP machine”.
Mike
Bump, sort of. My trip was cancelled due to an illness in the family. I received word the night before we were to leave. I left the CPAP behind because I just did not have time to deal with it. Now I am back so I will start reusing it again.
I do have a question. I watched my father napping and he appeared to have sleep apnea (periodically, he would stop breathing, then his body would sort of convulse and he would be fine until the next episode). I told him about it and he basically said he could not be bothered with it (he is 78). The question is have any of you had to deal with this kind of thing? If so, do you have any suggestions?
As a note, my father is as bull-headed as they come (hi Dad if you find this) so I guess I come by it naturally.
No need to respond. This is partly a bump and partly a question.
Thanks, Mike
To (slightly) paraphrase my Mother in law:
“The Older they get, the stubborner they get.”
Someone who is stopping breathing periodically, as you describe, is a candidate for all of the internal damages that are known to occur as a result of sleep apnea. he is alos more likely to fall asleep at the wheel, or anywhere else for that matter.
Lots of luck. You’ll need it.
Eccles, thanks. He has always been stubborn and as you say “the older…”. I had not thought about the sleeping at the wheel issue. Might be a good point to pursue.
My parents take multiple naps each day then wonder why they can’t sleep at night. Since they have no pressing obligations and have developed this “rut” I have not made an issue of it.
:sigh, love them both but they are getting older and are becoming caricatures of themselves. Sonetimes they drive me crazy but I am grateful that they are still with us.
Sorry for going off-topic. Back on the CPAP tonight. It has been 5 nights. Hopefully the readjustment will not be a problem.
Mike
That was me at 03:22. My handle got lost somehow.
Just bumping before it sinks into the quicksand of BB-land.
Eccles, ditto.
Thanks BB for your diligence in keeping the forum lively.
Mike
Eccles and group:
I have a RemStar (Model 1005961) that has a 12 v input jack. It looks like a standard sized jack. Question: can I rig a “RadioShack” jack and wire straight to 12 v deep cycle battery, or is there other electronics incorporated into the store-bought $22 cable?
Bump.
Strider, I think the answer is yes but I would like confirmation from the pros. Eccles and others?
Mike
Strider and CAMike - I’ll look into it and get back. I’d rather take just a little longer and get it right.
Thanks CAMike and Eccles. I can’t afford to risk the machine with incorrect input, and I can’t afford a fancy storebought cable when a “roll your own” will work just as well. But most of all, I can’t afford to risk my DW, whe’s my “better half”!
Strider, wait for Eccles or one of the other experts to reply before commiting. I am strictly an amateur in this area.
Mike
I know that the discussion about alternate power was over a month ago but I wanted to share my experience. I bought a Yamaha 1000 generator to go to a non electric island for two weeks. It was just what I needed. Only 27 lbs., used four gallons of gas for the stay running a BiPapAuto an average of eight hours a night. Extremely quiet running at its lowest power level, about like a distant small motor boat hum. Purchased from Wise in IL. Check Yamaha generator on Ebay and then call. $650 with shipping. I could not be happier, except to not not need it at all. michael.
jondough – at 15:07
Thanks for the info! There is no better testament than a report from an actual user in the field.
Strider - I just wanted to report back to you on the power cable thingee. I have the fancy store bought cable. It has a heavy molded cylindrical assembly an inch or two back from each end. I assumed that these were RF chokes, but they could also contain other circuitry.
I did a couple of ohm meter checks on the cable. First, there is essentially no resistance from the center pin of the cigarette lighter plug to the center connector of the cylindrical plug, and essentially no resistance from the ground connection of the cigarette lighter plug to the outer cylinder of the cylindrical connection.
This implies that the plug is set up to convey full voltage from the cigarette lighter plug, with the positive appearing in the center pin of the coaxial power connector and negative in the outer cylinder.
However, when I did a check between the power and ground pins, I found approximately 28 megohms with one polarity of ohm meter and 34 megohms when it was reversed. If this was strictly due to leakage in the cable insulation, these should have been symmetrical. Also, there is a slow drift in the ohm meter response implying a small amount of capacitance in the system.
(Aren’t you sorry you asked?)
Now, 30+ megohms is beyond the ability of most home isntruments to measure, so this is very subtle stuff. What I am surmising is that what we are seing is possibly a filter network or perhaps a zener diode spike protection network.
Either way, I would suspect that if you feed the correct voltage down a homemade cable, you would probably have no problems.
On the other hand, the presence of what appears to be a protective diode arrangement in the cable suggests that the manufacturer is concerned that spikes appearing in the DC power cable could jeopardize the electronics of the CPAP.
Therefore, what I will say is, in this case, unless you are absolutely without means, it would be best to purchase the factory power cable for $24. Then you can feed it with your own DC source. I wouldn’t recommend just plugging a cylindrical power connector and cable into the unit as I cannot guarantee that there isn’t some protective function built into the factory power cable that you would be better off having.
One final point. The cigarette lighter plug contains an in-line fuse. When you get the factory issued unit, it comes with several fuses, and a sheet which tells you which fuse to use based on what pressure your machine runs, ranging from 2 Amp fuse for 8 cm up to 7 Amp fuse for 20 cm. So you need to have an in-line fuse and you need to have the right one.
Eccles: I know you were giving the info to someone else but I appreciate it too and I am going to trot over to CPAP.com right now:o) BTW you sound like my father when I was growing up (electrical engineer who helped create “wireless radio phones”) I always wanted to really understand what he was saying and I keep thinking that if I just took the time to think it through….and get some basic books on the subject:o)
Soxandshoes-
You are welcome to the information, that’s why we are all here, to help each other along.
I am somewhat younger than the generation that developed “wirelessradio phones”, but those guys were my mentors.
understanding only requires a good basic book and some time to work through it. If you have any questions about any of that stuff, please fell free to ask.
Eccles,
Thanks for the info. Will post better reply later, It’s my 29th anniversary :)) today.
Thread getting long, so closing and continuing ‘’‘here