New to cpap..feeling discouraged

[loopylooloo]

Hi! I'm new to Cpap and feeling a bit discouraged by it all. I've only had the machine a few days, so I know I shouldn't be, but I am. It doesn't help that I caught a small cold this week so the air is causing my ear to fill up. I have a dysfunctional eustachian tube.

Anyhow, I am testing the machine off an on and doing my best to try it several times a day and at night. It is also causing some chest pains and even anxiety attacks. I'm muddling through.

I am hoping that in the mean time sleeping on my side and propping myself up, plus some other measures will help as I adapt.

I don't have my study results yet, but was told my apnea is severe. I have asked for the summary page, at least, to be sent to me. I'm bothered by the fact a sleep specialist does not meet with patients in our area, but instead sends something to a GP who then says you have it and must have a CPAP. No alternatives were given and nothing was really explained to me. I did ask, at first, not to know how many times I stopped breathing, but now would like to know the full study results. I did ask the respiratory therapist and was told that the majority of my apneas happen while I'm on my back and that I was on my back most of the study (it was the worst experience and I couldn't sleep like I normally do so that was super frustrating for me and I don't know how accurate the test can be that way, but I know the techs were really great with me). I was also told that it is indeed obstructive and not central apneas, and that was also encouraging (as odd as that sounds!)

I have an appointment with an ENT to see if there are any options there but I really don't think I'll be looking at surgery..I haven't heard too much about success with that.

In the mean time I am trying not to beat myself up but keep on keeping on with the CPAP and all other measures as best as I can. I already know the stats of Sleep Apnea, so no need to share the horror stories.

[up4speed]

I know how you feel! I only slept with it for 3 nights so far, and it's torture. It's interesting that you mention about chest pain, and anxiety attacks. On the first two nights, I told my wife that I was having arrhythmias and chest pains from it. Yesterday, my third day, was not too bad. I think the trick is to try to relax and breathe normally and your body will adjust to it. Don't fight the machine, or think about it.
My main problem is that I can't use it more than 3 1/2 hrs or so. I tend to wake up, then I just take it off and finish my sleep. I'm looking forward to getting a straight month of full sleep with it just so I can see if it actually helps me.
Good luck, hang in there and don't give up on it. I'm pretty sure that it will make a huge difference for you since you say that you have bad apnea.

[Janknitz]

It is rough at first, but you must stick with it. One night you'll string many hours of sleep together and wake up more refreshed than you ever thought possible. That's what this is all about, but it takes perseverance until you get your first taste of good sleep. After that, you're hooked, and will want to repeat it.

Meanwhile, tackle the issues one by one. You're doing a good job working on the claustrophobia.

Did your sinus problem start before or after CPAP? If after, you may have to tweak your humidifier settings up or down to see if that relieves some of the sinus issues. Never change more than one thing per night, and you may need to try a new setting for a few nights to see if it's helping or not.

As for seeing the specialist, several things are at play:
1) There's usually poor insurance coverage for follow up visits, so the doctor doesn't care to do them.
2) Some (not all) doctors go into sleep medicine to make money, not to have patient contact.
3) Often specialists send patients back to the GPs for follow-up so that the GP's don't fear that the specialists will "steal" their patients and come to rely on the specialist more than the GP. This tends to be common in some (not all) medical communities.

[Stormynights]

Hi! I'm new to Cpap and feeling a bit discouraged by it all. I've only had the machine a few days, so I know I shouldn't be, but I am. It doesn't help that I caught a small cold this week so the air is causing my ear to fill up. I have a dysfunctional eustachian tube.

Anyhow, I am testing the machine off an on and doing my best to try it several times a day and at night. It is also causing some chest pains and even anxiety attacks. I'm muddling through.

I am hoping that in the mean time sleeping on my side and propping myself up, plus some other measures will help as I adapt.

I don't have my study results yet, but was told my apnea is severe. I have asked for the summary page, at least, to be sent to me. I'm bothered by the fact a sleep specialist does not meet with patients in our area, but instead sends something to a GP who then says you have it and must have a CPAP. No alternatives were given and nothing was really explained to me. I did ask, at first, not to know how many times I stopped breathing, but now would like to know the full study results. I did ask the respiratory therapist and was told that the majority of my apneas happen while I'm on my back and that I was on my back most of the study (it was the worst experience and I couldn't sleep like I normally do so that was super frustrating for me and I don't know how accurate the test can be that way, but I know the techs were really great with me). I was also told that it is indeed obstructive and not central apneas, and that was also encouraging (as odd as that sounds!)

I have an appointment with an ENT to see if there are any options there but I really don't think I'll be looking at surgery..I haven't heard too much about success with that.

In the mean time I am trying not to beat myself up but keep on keeping on with the CPAP and all other measures as best as I can. I already know the stats of Sleep Apnea, so no need to share the horror stories.

I know how you feel! I only slept with it for 3 nights so far, and it's torture. It's interesting that you mention about chest pain, and anxiety attacks. On the first two nights, I told my wife that I was having arrhythmias and chest pains from it. Yesterday, my third day, was not too bad. I think the trick is to try to relax and breathe normally and your body will adjust to it. Don't fight the machine, or think about it.
My main problem is that I can't use it more than 3 1/2 hrs or so. I tend to wake up, then I just take it off and finish my sleep. I'm looking forward to getting a straight month of full sleep with it just so I can see if it actually helps me.
Good luck, hang in there and don't give up on it. I'm pretty sure that it will make a huge difference for you since you say that you have bad apnea.

It is normal to have chest discomfort starting out. When you are fully inflating your lungs with air instead of just shallow breathing it feels a little like sore muscles. This will pass soon.

[purple]

How did you and what did you set the machine if you do not have sleep study results yet?
My first thought is that you might not be getting enough pressure to stent the airway opening, and what you are doing is of less use than what what will happen once you get the correct machine settings.

[johnthomasmacdonald]

Hi, there are devices that will help to keep you on your side through the night - a backpack full of tennis balls ( i just stuff mine with old blankets) and large pillows that wraps around your head and legs to keep you on your side.

As to the machine, you will adjust to it, really, even though it seems impossible. I never thought i wasn't going to ever be able to fall asleep with it, I hated it but I now sleep with an ASV machine ( which is even more intrusive) through the night with little problem. THe key is to just keep at it. Sleep aids in the beginning might not be a bad idea to help get you over the hump. ALso, based on what people have seen here and what my sleep doctor has reported, people with severe apnea do better than those with mild or moderate because they really see a difference in the quality of their sleep after a relatively short time of using it. So good luck and just keep at it - and when in doubt, follow pugsy's advice.

[2 B Sleeping Soundly]

As to the machine, you will adjust to it, really, even though it seems impossible. I never thought i wasn't going to ever be able to fall asleep with it, I hated it but I now sleep with an ASV machine ( which is even more intrusive) through the night with little problem. THe key is to just keep at it.

I just feel compelled to say to all of you new hose heads who are struggling with learning to use your equipment each night, who are dealing with unknown issues that complicate your therapy one night but not the next, who are having to run the whole spectrum of possible XPAP machines and equipment to try to start achieving even a little success in your therapy, and finally to somehow deal with all of these above things long enough to make this PAP stuff work... Listen To This Man! He has been there and he knows!!

Johnthomasmacdonald, I did not know that your therapy had finally turned around and you were now seeing real progress/success. And though you can rightfully say that Pugsy and the other wonderful people here have helped to make it possible to be where you are now, through their compassionate advice and selfless help, you too are someone whose advice should certainly be listened to, because even though it didn't look like you were going to make it, you went through the fire and have survived. Well done!!

John

[elviszappa]

I have been using my cpap machine for 17 days. I am very claustrophobic and I have some trouble exhaling in the first 10-30 minutes after turning the machine on.

It does seem like every day gets a little easier. I've had only three instances of moisture in my mask (all three times on rainy nights).

On my third night with the machine, I slept over 12 hours and then took a 4 hour nap that afternoon. Since that night I look forward to sleeping because I actually feel better when I wake up than I do when I go to bed! This is something that I have never experienced in my entire life.

Don't get discouraged. Just make up your mind and keep a positive frame of mind. I'm one of the few lucky ones who have felt almost immediate positive effects.

[sawinglogz]

I have been using my cpap machine for 17 days. I am very claustrophobic and I have some trouble exhaling in the first 10-30 minutes after turning the machine on.

What machine do you have? Most have a "ramp" function that will start the pressure lower and slowly ramp up to your prescribed pressure. If you set it for a 30-minute ramp, it would ease you into things, and that might be a bit more comfortable!

[Denial Dave]

for the folks asking for help

it really does help everyone if you post your mask, machine and pressure settings onto your profile

that information will guide us to give you better suggestions and support

[loopylooloo]

I can't figure out how to update my profile yet. I have a Philips Respironics and a Quattro FX mask. I started with the Wisp and liked it but couldn't seem to keep my mouth shut. I only gave it a day. I should have given it more I guess.