young new user-wishes to hear tips from experts

[Pugsy]

Check the model number on your machine. It will be on a silver sticker on the bottom and may start with DS..something..
look for DS 550 or 560...those are the APAP model numbers. If you have a 550 you can use SleepyHead software and I have all the links in my signature to get you started. If you see a 560 number...send me a private message and I will get you some information about the software needed for that model machine. SleepyHead doesn't work with it yet.

In your equipment list in your profile if you wish to add your humidifier...the grouping of names that have PR System One.... the humidifier is the PR System One Heated Humidifier.

If you don't see a 550 or 560 number...might be 450 or something else...let us know if it is something else.

[lilbean95]

Last night wasn't that great unfortunately. I wasn't one of the lucky few to have instant results the first night. I didn't really expect it though so I wasn't suprised at all. I woke up continuously through the night because I was uncomfortable and ended up taking the mask off at 3 in the morning. I plan on using it everynight no matter what, but if I continue to sleep like that every night, I fear it'll really drain me. But we'll see how it goes considering it was the first night. Just thought I'd let everyone know because everyone on here seems genuinely interested in how I'm doing. Thank you!

[Janknitz]

Hang in there, Lilbean! It takes persistence.

If there's something particularly bothering you, let us know because we can help.

[joe26]

Thanks for letting us know. I was about to send u a msg.

Please don't give up. Its only the first night. Its gonna become a lot better.

Good luck for tonight.



Joe

[archangle]

Welcome. Be VERY careful about UPPP. Read the horror stories on the internet from other UPPP patients.

Watch out for chop-happy surgeons, even if they seem genuinely concerned and have a good bedside manner.

Personally, I think UPPP is very rarely preferable over CPAP. You can suffer from eating and other problems for the rest of your life.

Try CPAP really hard before having UPPP.

Also be sure you really need the tonsillectomy before getting it done, too.

[Pugsy]

It took me a while to learn to sleep with the alien stuck on my face even after I tweaked my pressures because initially they weren't quite enough to do a good job. Kept waking up touching it even though it was quite comfortable. The brain just doesn't know what to think about that thing stuck on the face.

If you are having problems, comfort, fit or leaks that just makes it worse but even a totally comfortable, leak free mask can take some adjusting to. The body will adjust though. For some people it takes longer than others though.

Use the software I suggested to make sure that leaks aren't a hidden culprit and that the pressure is sufficient to reduce any events down to acceptable levels.

[CatButler]

Hi littlebean,

The also recommend the mask liner. The mask on generally makes me sweat a bit and that seems to make all sorts of leaks. The little weird leaks blowing in my eye were causing quite a few wrestles with the mask in the middle of the night trying to get it to seal right. I got the http://www.padacheek.com/PAC_Maskliners.html liner for mine and have had consistent AHI < 5.0 since. It just feels more comfortable. Good luck and keep checking in.

[lilbean95]

Hi everyone! Last night was much better. I figured out if I sleep on my back, which I don't normally do, was much more comfortable and I could sleep a lot more comfortable than I had the night before. Thanks everyone!

[lilbean95]

I had to take my machine with me to a couple places and everything went without a hitch. I've had one problem though. I woke up one morning and had a sore under my nose where my upper lip connects to my nose. Has anyone else had this problem?

[lilbean95]

Hi I haven't check in in a while. I had my tonsillectomy and adenoidectomy last Wednesday. I'm pretty much back to normal but super sore in my jaw and ears. My doctor told me not to use my cpap until I'm fully recovered so that I don't irritate the surgery site. I haven't been sleeping well at all I'm pretty sure it's partly because of the lack of cpap use. I'm. It really sure if anyone actually still reads this thread or not but it helps me to just write on here anyway.

[old64mb]

Glad to hear you're doing ok, and recovery is a pain. Trust your body and let it tell you when to resume the CPAP, and don't push yourself. The soreness may be contributing to your problems sleeping just as much as not using the CPAP.

One thing that hasn't been discussed - members of this forum really don't like surgery (for good reason, a lot of doctors will push it to make money when it's not an effective treatment) but for someone of your age it's actually very appropriate.

Getting your adenoids out and recovering is a very different process at your age than it is say 5 years later, and there's been some work done that suggests that apnea can be permanently nipped in the bud for younger patients if you do it right.

So, let's hope you're on the right track here, and the next sleep study should be a very interesting one. Good luck!

[lilbean95]

Thank you! I seemed to get a very negative response when I first mentioned surgery. I thought it was a good idea because of maybe and the tonsils and adenoids were causing issues with other things anyway. I can already breathe a little better through my nose already so I hope for good things to come.

[Uncle_Bob]

I agree with the advice regarding the surgery and second opinions.
You mentioned a sleep study and getting a machine but did you get titrated at all on a night following the sleep study or did you have a split study?
Just curious as the what pressure the doctor has you using?

~UB

[BlackSpinner]

Thank you! I seemed to get a very negative response when I first mentioned surgery. I thought it was a good idea because of maybe and the tonsils and adenoids were causing issues with other things anyway. I can already breathe a little better through my nose already so I hope for good things to come.

The reason for the negative responses is that it should be the last resort and people wanted to make sure you had evaluated all the options. Surgery is always risky and the concept of "success" is never the same between doctors and patients. Getting the tonsils dealt with now was a good idea, one of my exs had them out in his 30's because they were causing constant strep throats and his recovery took 3 weeks or more (of course it didn't help that they scheduled it on the day we were moving)

[Janknitz]

Lilbean, are you going to have a follow-up sleep study to see if you even still need the machine? I know you're going to have to heal a little more as there is probably still some swelling, but you should ask about that.

If you still need the machine and they are talking other surgeries (Pillar procedures, UPP, jaw advancement), that's when surgery becomes less of an attractive option--real success rates (in terms of actually getting off a machine permenantly) are low, pain is high, lifelong side effects are common, and recovery is lengthy . The T&A was appropriate at your age, but these other surgeries give more cause for concern.

Please know that there are orthodontia solutions that MAY help without surgery. My daughter (age 11) is about to get the Herbst appliance (you can look it up) that will bring her lower jaw forward a little bit and hopefully open up her narrow airway.