All hooked up

[gnmwilliams]

So I just got the results of my sleep study back and I have severe sleep apnea. They are rushing my equipment order through insurance and I should have a machine sometime next week. Anyone on here have to use a machine and if so, any tips you can give me on which type of machine to request? I got to try the mask that just has the nostril tubes the night of my study but am wondering if the whole nose cover or even the whole face cover would feel better. I just didn't know if they would let you pick more than one or if you're stuck with what they order for you. Thanks!

[McAllyn]

I have slept 3 nights in the last 4 years without my machine. They shut off the lights at 10:00 to start my sleep study. At 10:45 they came running in, turned on all the lights, and put me on a machine immediately. Picked up my machine the next day. I use a Fisher Paykel machine. I tried the cannula nose only thing, and it couldn't push enough air to keep me breathing. Been using the full nose-cover headpiece with the swivel connector so you can lay on either side.

My machine has traveled all over the US and most of western Europe with me. It changed my life... and definitely saved it. I wish there was a way I could get back to sleeping without it, but until that time, I'll never voluntarily be without it.

Mac

Edited January 24, 2012 by McAllyn
I R spelling Champion!

[UncleJak]

My wife recently got the nostril version. She likes it pretty well and is sleeping better than she ever did. It took her about 2 nights to get used to and hasn't had a problem since. Good luck!

[runningfree]

The mask depends on how you sleep. I am a mouth breather so a full face mask is best.

I tried the one that only covers the nose and a chin strap. Did not work for me.

My insurance only allows one mask a year and costs me over $200.00 for a mask.

I have a Resmed S9 machine. It adjusts the air as needed and has a memory card in it so the doctor can download sleep data and adjust as needed. Being on a cpap machine has really helped. I was having 109 occurrants an hour of deminished or stopped breathing. The doctor said I was getting more rest being awake than sleeping.

[Guest Lester Weevils]

I have no reason to suspect that any of the medically approved cpap machines are inadequate to the task.

Have had two cpap machines in maybe 14 or 16 years use. Can't recall exactly when starting the cpap. Both of them still function fine. They seem well-made.

After some years they said the first cpap machine had run long enough to reach its MTBF, though it still works and I keep it for a spare. The first machine is big and crude compared to the newer ones but basically works the same.

The current cpap is a Respironics that still seems to work fine and is at least 5 years old, maybe a few years older than 5 years. Can't recall the date the Respironics was put into service. They probably all work fine, but have not been displeased with the Respironics.

There may still be some units that do not have a built-in humidifier. Maybe not everybody needs a humidifier but is useful for me. The old one didn't have a humidifier and later on had to get a crude external humidifier attachment after dry-sinus and stuffy nose problems. The old external humidifier was not very convenient. A built in humidifier is much better.

The Respironics humidifier is a little plastic water tank that plugs into the cpap body. The air blows thru the tank and there is a thermostatically controlled heater that can be adjusted from 0 (off) to an arbitrary 5 at the top of the dial. So if the nose still gets stuffy with the knob set low, keep nudging up the heater setting each night till it works. If you run it too high, you can get condensation in the air hose in the winter if the bedroom air is cold.

====

I started the first few years with the tiny mask that fits over the nose. It worked fine but had to be tightened enough to squeeze yer head in half to stop all leaking. That is too tight of course so just had to put up with a little air leaking out and blowing over the eyes all night, which can cause really bad dry eye. It depends on the shape of your face. They make many shapes for many faces, but it is always a slight compromise.

Then switched to a "nasal pillows" design that is considered old fashioned nowadays but I still like it. There are several versions and this is the only one I've used which works fine for me.

CPAP.com - Breeze SleepGear CPAP Mask with ONE set of Nasal Pillows

In the early days that style had "slight" problems that a couple of the plastic pieces wanted to break too easy and you had to be careful with them. But the last few years they must use better plastic because the design is the same but I've not noticed breakage.

Had a followup sleep test a couple of years ago (for narcolepsy/hypersomnia rather than the apnea in particular). Asked the test staff to let me try out several other mask designs to see if anything worked better, which they did. One design combination mouth and nasal pillows just totally sucked and couldn't be matched to my face. It leaked like a seive everywhere.

Also tried a mouth+nose mask that went from between the eyes down almost to the chin, which worked fine but not any better than the nasal pillows. At the end of the night, they gave me both the tested masks. If I had known they give you the masks I would have tested several other brands. At least in that lab, they can't or won't re-use masks between patients, so you get to take home whatever equipment you used and got your cooties on. I wondered about the expense and the lab worker said that patients have to pay thru the nose but the lab gets as many masks as they want from all the manufacturers either free or nearly free. Guess if yer going thru maybe 10 masks a night for a year, 3650 masks...

====

Anyway, will probably try a full face mask next time I need one. Started getting another problem a few years ago, that didn't happen in the past. I used to be able to sleep all night and keep my mouth closed, but lately the mouth can drop open in deep sleep, which doesn't work at all with a nose mask. So if wearing the mask wasn't ugly enough, started wearing a chinstrap to keep the dern mouth shut.

Maybe you won't see that problem, or maybe it will takes years to become apparent as it did with me.

So a few months ago got out the nose+mouth mask from the last sleep test to see if that would avoid needing the chinstrap. It did prevent loss of pressure if my mouth flopped open, but exposed a new problem-- If you sleep for several hours with yer mouth open talk about a case of morning dry-mouth! Sahara Desert!

So am still using the nose+mouth mask, but also with the chinstrap to avoid dry mouth.

Maybe a full-face mask, if it hooks under the chin a little, would keep the mouth closed and not have to wear a chin strap.

Edited January 24, 2012 by Lester Weevils

[laktrash]

I went with the nostril version with a chin strap. After a little while I got rid of the chin strap and had no problems. It wouldn't hurt to star there and move up til find the one tht works best. My case was considered mild and after a year a gave it up because I couldn't tell the difference. It is not as bad as you would think its pretty easy to get use to.

[Guest mustangdave]

I can not imagine what you guys go through...but god bless ya'll...

[Ranger305]

Finding the right mask or apparatus is a little trial/error, but a good supplier can guide you to the right ones. I have found the gel type masks work best for me so far, but will probably try the nasal pillows next. Also, with my allergies, I have a prescription for a mild nasal steroid like Nasonex to keep my nose clear. Before I got that, I stayed stuffed up. If you have this problem, Afrin is good for a day or two, but not a long term solution. It will start making the problem worse. Getting the humidity right is also a big help. After you get used to it, you don't think much about it.

Best advice I can give is to stay in communication with the Dr. What you start with may/may not be what you find works for you + If you lose or gain weight, you may need to get the pressure adjusted. I started with a standard CPAP 3-4 years ago and gave up after two weeks of frustration. I couldn't stand the constant pressure and just assumed that was the only option. Machine ended up in the closet. Fast forward to last summer. Started feeling drug out and knew it was my apnea acting up. Lost my Dad to a sudden heart attack and decided I better try to take care of this. Talked it over with the Dr. and he suggested we try again with a Res-Med S9 Bi-PAP. Much easier for me to deal with.

If your spouse says you snore, get checked. Age is irrelevant- I was diagnosed in my early 30's. Apnea can be hard on the heart and it's much more common than you would think. Until I got it back under control, there were morning I drove to work fighting sleep after just getting 8 hours. As I was told, it's one of the few things that can be treated without medications with a great success rate.

Edited January 25, 2012 by Ranger305

[Guest Lester Weevils]

I like it and liked it from the first night. Maybe had something to do with being able to sleep and also breathe.

Probably had apnea most of adult life. Dr says my hypersomnia (excessive daytime sleepiness) is most likely long term damage from apnea. I don't think they used cpaps much earlier than when I started. Maybe if had started 30 years ago rather than about 15 years ago, would be able to stay awake better in the daytime. The cpap solves the apnea problem and I sleep fine at night, but apparently it took its toll in years before the cpap.

[Glenn]

I have been using cpap about 12 years. I could never get a mask that would seal at the bridge of my nose,so switched to nasel pillows. Much better. I found that i can buy the equipment online at cpap.com for less than my copay at a local supplier.

I had a similar experience as McAllyn. The tech woke me up and mede me breath oxygen. He said if my O2 level got that low while I was in the hospital they would have taken me to intensive care. I don't sleep without my machine unless the power is out.

Glenn

[hipower]

Good to see some of your comments, guys. Have been diagnosed with it as well. Been thru several nighttime sessions and having a real hard time with the machines in general. It seems that after the last few years of medical problems, I have become, or at least now noticed; that I'm getting very claustrophobic. Masks and respiratory equipment of any kind just seems to send me into a spiral toward a screaming fit. The full face mask is a terror. Nasal pillows and a chin strap only slightly less so.

The respiratory dept and doctor are working with me, but I don't know if I'm going to be able to stand this.

[Ranger305]

Don't give up on it yet hipower. It can be a process. I'm fortunate that I don't need the chin strap, but the nasal mask I use took some time. I had some nights with the CPAP that 10 minutes starting, I would rip the mask off, unable to breathe, feeling like my lungs were exhausted and just crowded in. In the grand scheme for me, the constant CPAP pressure was the biggest culprit. My BiPAP is a breeze in comparison. If you aren't familiar with the differences: CPAP is constant pressure. Most folks seem to do well with these. BiPAP is "Bi'-level. It has two pressures, inhale and exhale. It senses or times your breathing and cuts the pressure down as you exhale. I find it much more tolerable. If your Dr. hasn't mentioned them yet, it might be worth a discussion.

[gnmwilliams]

Wow! Thanks for all the great information! It's good to know that I have a group of folks to come to that have long term experience with this stuff. Now that I read the comments about the CPAP vs. BPAP i'm wondering what machine I was on during my study since I could notice a difference in pressure during exhalation vs. inhalation. As to keeping the masks that I tried that night I only slept with the nasal pillars but was given the whole nasal mask as a demonstration of what to expect. I wonder if they will include that one as well? Oh well, I got the call from the supplier yesterday afternoon so I am going tomorrow to get my stuff! Woot!

Edited January 25, 2012 by gnmwilliams

[usnbud]

Ive been using a cpap for 9 years, Ive always used the mask that just covers your nose. My pressure was set at 17.5 and to keep the mask from blowing off I had to keep it pretty tight! Ive got a small callus? on the bridge of my nose from the mask tightness. But I had rather have that than feel like I did before the cpap!. Since my original study 9 years ago, Ive lost 110 lbs and was having problems tolerating the high pressure. I had another sleep study done a few months ago and my pressure is now at 11, so thats a big improvement. I still need the machine and to be honest, I cant sleep without it now. One of the best things I found to help with getting used to it, especially if you sleep on your side is a pillow made for use with a cpap. The company that provided my machine didnt try to sell me on it, I just happened to see one in their office one day when I was getting a new filter and mask, It cost about $65 and is made of memory foam. It made a HUGE difference for me. Good Luck with it and stick with it, being able to get REAL sleep is a life changer!

[hipower]

Ranger, thanks for the comments. I wasn't aware of a different type machine. But you pegged my problem. Aside from the claustrophobia, the constant pressure was causing me to panic trying to exhale against it. I'll have a talk with the doc next visit.

[Capbyrd]

Has anyone ever gone in for the test and been told that they don't have apnea?

[Ranger305]

No problem hipower. Hopefully, like me, you find the pressure is the real culprit and not the mask itself. The mask is annoying, but you get used to it quickly. The best analogy I can conjure is the feeling is like trying to blow up a balloon with every exhale, then try to relax for the inhale. It just feels backwards to my body, and after 10 minutes or so, it was like a mild claustrophobic attack and the feeling that you have a 200lb weight on your chest keeping you from breathing. All you want to do is get that mask off, at which point your lungs feel tired and heavy.

In my case, going from CPAP to BI-PAP required an addition an additional sleep study because you now have two pressures to set, so they have to figure out the exhale pressure you can work with. My "pressure" is 14, while my Exhale is an 8. When I put my mask on and turn the machine on, it takes it about a dozen normal breaths to get in sync and I'm good to go. To help even more, most machines also have a ramp-up timer that slowly builds the pressure. I used it with my CPAP on the longest timer possible. I think the ramp on my Bi-PAP is set to 30 seconds or so, just long enough to get it in sync. The Bi-PAP action is a bit odd the first couple nights, but I'll never go back if I can help it. My Wife tells me I don't open my mouth with the Bi-PAP like I did with the CPAP, so no chinstrap needed.

Feel free to PM or ask if I can help.

[Ranger305]

Sorry, that last line didn't come out quite right. Let me know if I can answer any questions, either here or via PM.

I'd urge you to call that Doc up and ask ASAP. No need to fight this stuff. It's like firearms, not everyone likes the same one.

[Guest Lester Weevils]

Dunno if all sleep labs always use bi-pap, but the two I have gone to did. Maybe not all scuba rigs are the same, but the few times I went scuba diving, on inhale it would trigger the regulator and "assist" the inhale. Slightly more pressure on the inhale than ordinary breathing in the atmosphere, but no extra pressure on exhale. Maybe a better quality scuba regulator wouldn't feel thataway. Anyway, that is what the sleep lab machines felt like to me.

My cpap machine has adjustments for that. It is supposed to be locked so customers can't mess up the settings, but I figgered if I paid money for the thing I should be able to experiment with it, and located the reset code. Its my machine, not the doctor's machine. Am not recommending anything like that would be a good idea, but what the hey...

Anyway was curious if bi-pap would feel preferable and tried some of those settings. For my taste, the constant pressure felt better. Individual taste and physiology.

In apnea forums, read that some machines are supposed to be intelligent enough to monitor breathing patterns and automatically adjust pressure and other params to dynamically enhance the sleeper's breathing according to changing conditions over the night. Some folks with such machines claimed to like them.

Apparently there is a minority of doctors (most likely frowned upon by the majority of specialists) who, if a patient seems to be having apnea symptoms, will get em to try one of the automatic machines awhile and see if it helps, rather than doing a sleep study. Maybe that is a crazy way to do it. On the other hand, the sleep studies are dang expensive. It would certainly be less expensive if it might be the case that success/failure on an automatic machine would give the same end result as a sleep study?

[KahrMan]

Has anyone ever gone in for the test and been told that they don't have apnea?

Probably not. A doc usually will not make a patient go thru the time and expense of a sleep study unless he/she is pretty sure you have sleep apnea.

It took a lot of nagging from from my wife before I went to a doc. She kept telling me that I would continuously stop breathing through out the night.

Once you start using the cpap machine, it is amazing how much better you feel. Your body is actually able to fall into a deep sleep. Before I started using a cpap, I would sleep 6-8 hours and wake up tired. The apnea does not let your body ever get any rest because it keeps you in a shallow sleep state. This si the mask I use:

Works pretty good for me.

[Ranger305]

Tongue firmly in cheek, Sleep Study is a unique term. When I go, I get there at 9-10pm, get 20-30 electrodes and monitors glued to your head, face, chest, legs/feet, and fingers (pulse-ox on the finger is most annoying for me), get put in a room that resembles a normal household bedroom with cameras and mics in each corner, and told to try to get some sleep. You finally pass out from exhaustion about midnight,and get woken up at 4:30am to get unhooked, debriefed, and sent home. Not much sleep involved.

It's not really a horrible experience, but how much sleep do they expect you to get?

[Guest Lester Weevils]

I was told I didn't have apnea on the first sleep study. That lab and doctor would schedule for two nights. The first night was observation alone, wired up to ecg, eeg, blood oxy meter, blood pressure, whatever. If they didn't see evidence of apnea on the first night they would cancel the second night. If they saw apnea evidence the first night, they would calibrate pressure on the second night.

I sleep fine at home. Can't sleep away from home, at least at night. Can't sleep in a hotel but can't stay awake sitting in a doctor's waiting room. Another factor-- Considering the high cost of sleep studies you would think the labs could afford to buy beds at least slightly more comfortable than a box of rocks.

So the first night of the study I only slept about 2 hours and no deep sleep. Spent all night bored as the dickens trying to locate the least lumpy section of the mattress. With no deep sleep they didn't see any apnea.

Wife kept complaining about the breathing so I set up a video camera, left the bedroom light on, and recorded a night's worth of sleep. Showed the doctor a few breathing incidents on the tape.

So the doc gave me a recording oxymeter to take home, which confirmed periodic blood oxygen problems. And they scheduled another sleep study, for the calibration night.

They can't give sleep study patients sleeping pills because it messes up the results. So I stayed up 24 hours ahead of the test trying to get tired enough to fall asleep away from home laying on a box of rocks. That delivered enough deep sleep so they could calibrate.

[gnmwilliams]

I went in at 8pm, got hooked up around 9:30, laid down at 10:30, couldn't get to sleep so they gave me half of a Lunesta pill, fell asleep, got woken up around 3am, got hooked up to the machine, and got woken up at 7 with a really really nasty taste in my mouth from the pill. Was told I got around 3 good hours of deep sleep after I put on the mask but still felt better off of that measly 3 hours of deep sleep than I ever felt off of 8-10 hours of restless, light sleep.

Edited January 25, 2012 by gnmwilliams

[hipower]

Yeah, pretty much in line with all your comments, guys. We are scheduling another nightime session and I'm going to go in during the day and try to aclimate to one of the forms of masks. The therapist in charge said I would probably do better if I came in and just sat in one of the chairs for a couple of hours and try to relax. Once we get a style settled and I don't run screaming like a raving mainic from the room, we'll go thru the ecectrode set=up and try again.

Thanks for the words of encouragement. I need it.

The whole thing really doesn't make sense actually. With all I've gone thru and had done to me in the last 4 years; you'd think a grown man would accept putting on a mask without all this drama.

[gnmwilliams]

Yeah, pretty much in line with all your comments, guys. We are scheduling another nightime session and I'm going to go in during the day and try to aclimate to one of the forms of masks. The therapist in charge said I would probably do better if I came in and just sat in one of the chairs for a couple of hours and try to relax. Once we get a style settled and I don't run screaming like a raving mainic from the room, we'll go thru the ecectrode set=up and try again.

Thanks for the words of encouragement. I need it.

The whole thing really doesn't make sense actually. With all I've gone thru and had done to me in the last 4 years; you'd think a grown man would accept putting on a mask without all this drama.

Well there's always shock therapy!