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Using my CPAP again finally


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I know why I stopped using it, it had to do with my fear that my son would destroy the new mask...So I locked it away for safe keeping. Well I started sleeping real badly as you might imagine, I was diagnosed four years ago this coming April and I asked myself the other day, "Why not pull it out and just make sure it's put awy before he gets up? I can manage that....I think." So far I have and it's working out okay. Though this morning he came in earlier then I was up and used the bathroom so I jumped up and fumbled with getting it put away in the lockbox and he stole my wheelchair while I was standing, so Ih ad to hop over to it before he got it OUT of my room. Some days I can't win for losing, and it just bites. BUT I am sleeping GREAT again. The first night wasn't that good, the second was better for awhile but I ended up taking it off, and then thethird night and last night I've left it on and have felt SO MUCH BETTER I am like WHY did I ever STOP using it? dunce.gif

So I am posting this in hopes that any of you with a CPAP and apnea will give it another go. It's WORTH IT! ;)

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I've been having trouble sleeping, keep waking up, due to hot flashes, I think, but maybe it's apnea? How did you get diagnosed and what tests did you undergo to find out you have it? Does the treatment cost a lot of money? Isn't hard getting used to sleeping with a mask?

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Hi Catnapper, I had a dr write a script for a sleep study to diagnose and treat possible sleep apnea. That is a couple hundred dollars right there, the machine is about 350 or 400 and the masks are expensive too. My 80% copay is close to $40 so it means that they run close to 300 on the masks. It wasn't too bad getting used to it, took maybe three days and I was over the trouble with falling asleep with it. Do you have anyone who can video tape you when you're asleep? That was how I discovered I had it, and what prompted my dr to write the script for me, because I had some evidence of a problem. If you do have someone who can tell you you're snoring bad and even stop breathing that is definitely apnea. I hope you don't have it, it's no fun, but if you do a CPAP is worth it to get proper rest and to help prevent other health problems from developing from untreated apnea. ;)

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Catnapper:

Who knows, maybe it is apnea. Having someone watch you sleep is useful if it's severe, but I don't know if someone is going to catch mild apnea that way. In my case, my s.o. said I stopped breathing for a while when I slept. I'd been working on my gp for ages to do something about my sleep problems, but this convinced him. Then I had to get a sleep study. They wired me up until I looked like a male Medusa with wires glued all over my head and a couple of other places. Then they expected me to sleep. On an anvil that only LOOKED like a bed. (This latter is not part of the official protocol, I think.) I couldn't sleep all that long, but it was long enough for them to tell that I had apnea. Just not long enough to "titrate" to find out how much pressure to use in the CPAP. I came back later for another study for that, and they got rid of the anvil. I slept very well for about 5 hours. If the sleep lab where you are is anything like the one I went to, try to get yourself on early hours beforehand so you can fall asleep at 9 or 10. If you have access to a blood oxygen monitor, which is just a thingy that clips on your finger, that might tell you a lot without the expensive test, because from what I've heard most people with apnea get low blood oxygen. I think mine was down to something like 85 or 90 percent of normal, but I don't really recall anymore. I don't know why they don't use that first, and follow up with the expensive test if it turns out a machine doesn't fix it. (Sometimes there are neurological problems with the breathing, but they can use a fancier machine, I think, to handle those.)

Your insurance probably covers a machine and a new mask every six months. If not, you can mail order these things if you have a prescription. I think the machines are a few hundred dollars, and some masks are under $100, as I recall, at various outfits on the web. You'll want to include a humidifier, most likely, at least in the winter. I forget how much those are.

I didn't have too much trouble sleeping with the mask, though the first type I tried irritated the skin under my nose until I started gluing a piece of paper over my mustache at night and washing it out in the morning! Now I use a mask that covers my nose and mouth, and that works much better. However, a lot of people do have trouble. I'm almost claustrophilic, and I used to scuba dive, so it's pretty comfortable for me. I put a cloth over my head to keep out the light, since I don't have to worry about stale air anymore.

BTW, Baptist sounds pretty scary.

OOPS, make that Baptist sharia. Most Baptists don't scare me.

----------------------

ridiculous additional info:

If you are an engineering type, and handy, you can make your own machine! (Ok, I didn't get around to an effective humidifier before I got the real one and stopped developing mine. I don't really want to give too many details here, as I don't want to get sued, and if you follow these ideas and something goes wrong, don't blame me. I make no claims that this is safe. Use your judgment here, and be sure to consider fire and smoke inhalation potential. I wouldn't use a fan that wasn't rated UL 94 V-0) I used some of those little 40mm ( or is it 45mm?) computer fans I got on eBay that come in counter-rotating pairs, lining them up in series and putting them in an enclosure to catch some of the noise. You should check the specs on the fan to see that the pressure rise is enough that you don't need too many. I still needed a long hose, which needs to be at least, I think, 1.5 inches in diameter, to get the noise away, and also not to start making obnoxious ringing sort of noises. And an enlarged area, in this case just a box, in line with the hose to act as a muffler. Making a comfortable mask was beyond me, but I had one around from a hospital visit. You can test the pressure by seeing how deep it blows bubbles. Again, I don't claim this is safe, it's just what I did, and it worked for me, at least for a while. Cost would probably be well under $100 too, if you scrounge well. Would also probably be a really nice gadget for anyone who works with nasty, volatile chemicals and doesn't want to breath them. Assuming the air near the intake is uncontaminated, anyway.

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ridiculous additional info:

If you are an engineering type, and handy, you can make your own machine! (Ok, I didn't get around to an effective humidifier before I got the real one and stopped developing mine. I don't really want to give too many details here, as I don't want to get sued, and if you follow these ideas and something goes wrong, don't blame me. I make no claims that this is safe. Use your judgment here, and be sure to consider fire and smoke inhalation potential. I wouldn't use a fan that wasn't rated UL 94 V-0) I used some of those little 40mm ( or is it 45mm?) computer fans I got on eBay that come in counter-rotating pairs, lining them up in series and putting them in an enclosure to catch some of the noise. You should check the specs on the fan to see that the pressure rise is enough that you don't need too many. I still needed a long hose, which needs to be at least, I think, 1.5 inches in diameter, to get the noise away, and also not to start making obnoxious ringing sort of noises. And an enlarged area, in this case just a box, in line with the hose to act as a muffler. Making a comfortable mask was beyond me, but I had one around from a hospital visit. You can test the pressure by seeing how deep it blows bubbles. Again, I don't claim this is safe, it's just what I did, and it worked for me, at least for a while. Cost would probably be well under $100 too, if you scrounge well. Would also probably be a really nice gadget for anyone who works with nasty, volatile chemicals and doesn't want to breath them. Assuming the air near the intake is uncontaminated, anyway.

Please DON'T EVER DO THIS. This is not a good idea by any means. If someone needs help figuring out possible ways to work around the cost issues with CPAP treatment, feel free to PM me.

~ May

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I know why I stopped using it, it had to do with my fear that my son would destroy the new mask...So I locked it away for safe keeping. Well I started sleeping real badly as you might imagine, I was diagnosed four years ago this coming April and I asked myself the other day, "Why not pull it out and just make sure it's put awy before he gets up? I can manage that....I think." So far I have and it's working out okay. Though this morning he came in earlier then I was up and used the bathroom so I jumped up and fumbled with getting it put away in the lockbox and he stole my wheelchair while I was standing, so Ih ad to hop over to it before he got it OUT of my room. Some days I can't win for losing, and it just bites. BUT I am sleeping GREAT again. The first night wasn't that good, the second was better for awhile but I ended up taking it off, and then thethird night and last night I've left it on and have felt SO MUCH BETTER I am like WHY did I ever STOP using it? dunce.gif

So I am posting this in hopes that any of you with a CPAP and apnea will give it another go. It's WORTH IT! ;)

BD, I'm so glad to hear that you're using it again. Not treating the apnea can make MI so much worse. It does usually get easier to sleep with if you can be consistent with it.

I don't know if this would help, but would it be possible to get a lock for your door and like keep a key around your neck or something so that you can lock the door behind you to keep him away from things? I can totally understand your concern, since we're talking about medical devices that are not cheap to replace if they get damaged.

~ May

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I mean no disrespect, especially since I think you may have some info I'd like to know, but I wonder if you could give us a specific basis for that statement. Obviously, one must be reasonably competent at engineering stuff to do this right, which is why I tried to keep it pretty vague. What hazards are there that I haven't already mentioned? I'll say right off that the fans I mentioned are not capable of making all that much pressure. The gadget I built isn't even powerful enough to completely inflate an air mattress, except maybe if you doubled the voltage and it didn't burn out right away. However, for all I know there may be something I've neglected, and if so, I'd like to know what it is so that I can delete my instructions and stop using my device for naps in the car.

From my point of view, the biggest hazard is lawyers, which is why I'm not being specific and why I wouldn't build one for someone else.

When I got my machine, a woman at the company told me that several people every day decided they couldn't afford a machine. That's a hazard too. Kind of like airline safety, at least on short haul trips. If the precautions make it too expensive to fly, people will drive, and more of them will die.

Still, I have an impression from an earlier post or two that you know what you're talking about, which may mean that you can tell me the problem that other people claiming a hazard haven't been able to. I suppose one caveat I might have mentioned is that this is probably a bad idea for anyone who, at any point, wouldn't be able to remove the mask if there was a problem.

Please DON'T EVER DO THIS. This is not a good idea by any means. If someone needs help figuring out possible ways to work around the cost issues with CPAP treatment, feel free to PM me.

~ May

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I mean no disrespect, especially since I think you may have some info I'd like to know, but I wonder if you could give us a specific basis for that statement.

Off the top of my head, it's that too much pressure can make your apnea worse. TBH, I need more time to roll it around in my head to give a more in depth answer then that.

That said, I totally understand the issue in how expensive these things are. I've seen the billing. I ran a sleep lab for a few years and I will admit to occasionally pulling some strings and hooking friends up with a test.

And yeah, it's horrible that some people need them and then can't afford it.

It's also really sad when some people can afford them and then don't use the machine. I don't know how many times I've seen someone come in the lab *after* like having a heart attack and watching them go into severe apnea and wondering to myself if any of their heart problems could have been prevented if the apnea had been caught sooner. A sleep test - is annoying. Sleeping with a mask - is annoying. I won't ever argue that. But it's painful that some people don't understand how much damage they are doing to their bodies all night long. It's like... okay... hold your breath for 60 seconds then take a deep breath or two and hold it again. Do this over and over and see how you feel because severe apnea sometimes looks exactly like that.

Yeah, I'm ranting. Sorry. /end rant

Sometimes you can work around the cost a little. Unfortunately sleep is still such a "new" field by medical standards that it's still working to get to a point where there are enough resources and information out there to help everyone that needs to be helped.

The cost issue is a very good point. If I can ever get my addled ADHD brain to remember, there's some things I'd like to add to the pinned topics. Resources on how to navigate the cost of this shit would also be something to sniff around the sleep medicine community and see what I can find out.

~ May

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I know why I stopped using it, it had to do with my fear that my son would destroy the new mask...So I locked it away for safe keeping. Well I started sleeping real badly as you might imagine, I was diagnosed four years ago this coming April and I asked myself the other day, "Why not pull it out and just make sure it's put awy before he gets up? I can manage that....I think." So far I have and it's working out okay. Though this morning he came in earlier then I was up and used the bathroom so I jumped up and fumbled with getting it put away in the lockbox and he stole my wheelchair while I was standing, so Ih ad to hop over to it before he got it OUT of my room. Some days I can't win for losing, and it just bites. BUT I am sleeping GREAT again. The first night wasn't that good, the second was better for awhile but I ended up taking it off, and then thethird night and last night I've left it on and have felt SO MUCH BETTER I am like WHY did I ever STOP using it? dunce.gif

So I am posting this in hopes that any of you with a CPAP and apnea will give it another go. It's WORTH IT! biggrin.gif

BD, I'm so glad to hear that you're using it again. Not treating the apnea can make MI so much worse. It does usually get easier to sleep with if you can be consistent with it.

I don't know if this would help, but would it be possible to get a lock for your door and like keep a key around your neck or something so that you can lock the door behind you to keep him away from things? I can totally understand your concern, since we're talking about medical devices that are not cheap to replace if they get damaged.

~ May

I wish I could May, but the lil man has to get in to my room to use the bathroom, but so far he's only jumped in there once before I was up. I have a laynard wtih my keys all on it because if I kept them in my purse the kiddo would take them and lose them....I am doing okay, it hurts my face a bit around the upper lip but I am already using a size small, Comfort Gel mask. Here is the style of CPAP I have:

http://www.cpap.com/cpap-machine/Remstar-Plus-M-Series-CFlex-CPAP-Machine.html

I love it! I have to get dishes done and get in bed and sleep with it on in the next half hour, because I have an early appt with kiddo and I need to get up at 5:30 am. Thanks for the encouragement May! I am definitely sticking with it because of how GOOOD I feel. ;)

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That's a good point. I don't think anyone should skip the sleep study. Then you know the pressure you need.

It occurs to me that if someone has a machine, they also might want to check to see if it's working right. If you stuff the end of the hose into some water, you can see how deep it goes to make it stop bubbling, and then you know the pressure, which is usually measured in centimeters of water, I think. (an inch is 2.54 centimeters) I know this works with a straight CPAP with fixed pressure, not sure if it's got all those fancy settings to help you breath.

My personal motivation was bureaucratic delay.

snip

Off the top of my head, it's that too much pressure can make your apnea worse. TBH, I need more time to roll it around in my head to give a more in depth answer then that.

That said, I totally understand the issue in how expensive these things are. I've seen the billing. I ran a sleep lab for a few years and I will admit to occasionally pulling some strings and hooking friends up with a test.

snip

~ May

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I had the upper lip problem. I'm wondering if you could just put a small piece of tape there until you get used to it. I understand that pharmacies have some special medical tape which doesn't stick as hard. In my case, I didn't want to lose my mustache, so I came up with something that was more time consuming, but it worked. Basically, I used Elmers white glue to stick a piece of paper there, and then I'd soak it off in the morning. Got the idea because my s.o. tells me the kids at the school she works at use it to do crazy things with their hair. Anyway, it worked for me. I think eventually I got used to it, and then after 6 months I got a "full face" mask. I'd think my eyes were part of my face, but apparently not. ;-)

In your situation, I might be tempted to put up a wall with a door, perhaps temporary. Even if I was renting. I understand that people renting apartments often make up a temporary wall which is just in by friction. Not sure what your resources are or if you actually have room for a little entry in the corner of your bedroom, but I think adults should have some privacy.

Glad your machine is working for you.

snip

I wish I could May, but the lil man has to get in to my room to use the bathroom, but so far he's only jumped in there once before I was up. I have a laynard wtih my keys all on it because if I kept them in my purse the kiddo would take them and lose them....I am doing okay, it hurts my face a bit around the upper lip but I am already using a size small, Comfort Gel mask. snip

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