Newly diagnosed...pretty upset

[John from Brookston]

Hi, I've been at it since February, got off to a good start then for some reason I developed claustrophobia. I had a heart attack in early May and that has added it's own emotional boogey-men to the mix.
I think we all get anxious starting out, but you've come to the right pklace for support and advice. Some of these folks who post here have been "on the hose" for YEARS, and share a lot of experience and knowledge.

You're probably going to have to try several masks before you find the right one. right now, I have a Swift FX nasal pillow mask that just arrived today, i spent some "lights on" time with it, getting it adjusted and taking it for a ride, and I'm looking forward to going to bed with it tonight.
Welcome aboard!

[pootsie]

Are you still there, Writergirl?

[writergirl2002]

The idea of air being blown down my nose and throat freaks me out. But thank you for all this advice! I'm going to read over it again when I hear from the respiratory therapist.

First know that many of us had to go through an adjustment period with the machines and the masks. Here's the good news, those of us who made it out the other end are so happy, we wouldn't think of sleeping without the machine now.

Weight loss helps - so if you lose a lot make sure you let your doctor know as it will affect the amount of air you need at night.

I hated the mask in the beginning and would take it off after first 30 min, then 1 hour. Then one night about 4 nights into using the mask I accidentally slept with it on for 1/2 the night and felt so much better that the next day I got stubborn and kept it on for all night - what a revelation - I felt wonderful. That was something like 15 years ago. No more headaches, no more lurching awake, no more rapid heart beats, leg cramps, etc. I still get up every 2 hours or so to go to the bathroom but that's something I'm working on to address.

Machines and masks are constantly getting better. You can try on masks until you find one that works for you and is comfortable. I've tried 15 or so masks and have stayed for lengths of time with 3. My favorite is Res Med's FX for her but I mouth breathe so use Fischer Paykel Forma Full Face Mask until I can find a way to mouth breathe less. A lot of masks made for men don't fit a woman's face so shop around. Even some women's masks are right up against your eyes. Also if you have a small face go for a small mask. I've been tempted to see if there are child sized masks.

I felt like elephant man or hannibal lecter when I first put on a mask. I didn't like the nasal pillows in those days so had a nose mask which was a bit less likely to generate anxiety due to claustrophobia - now I wear a full face mask because I started to mouth breathe and have now problems with it except that full face masks leak more.

Anyway, my advice from years of experience is to relax as much as you can and commit to using it. Who knows how much of your overall anxiety is exacerbated by your sleep apnea. Could you also tell us what you are anxious about specifically. We can probably put some of that to rest from our experiences and do read the experiences to help new users. Wish I'd had that when I started.

[writergirl2002]

I'm working through reading and responding to all of your encouragement. Thank you. Most days I am pretty alert and not too tired. Today I'm a bit more tired...maybe I'm a little bit down still too...so I'm taking it easy and trying not to focus on it too much. I wish the doctor had had something set up for me to get fitted or set up with the cpap before she told me, but she has an order in to get it set up soon, so I hope I'll have a better time table next week.

[sawinglogz]

Don't worry...once the mask is seated, it doesn't blow much air. The initial blast before you put the mask on can be pretty intimidating, but once the mask is on, it's really not blowing air into your nose, at least not unpleasantly so. For me it just feels like my nose is completely clear, even when it isn't!

[caffeinatedcfo]

I wish the doctor had had something set up for me to get fitted or set up with the cpap before she told me, but she has an order in to get it set up soon, so I hope I'll have a better time table next week.

I did too - at first. However, it actually worked out better that I found this forum before getting my machine because I knew what to ask at my fitting appointment.

[Stormynights]

I hope you come back, WriterGirl, to read all the empathetic and encouraging responses.

Scared, discouraged, severely anxious ... Many of us had similar feelings when we first got the news and began contemplating CPAP therapy. Some of us took to CPAP like the proverbial duck to water; some of us -- well, let's just say we took to it like cats to water.

One of my biggest fears, going into it, was that I was never going to be able to adjust to sleeping with something on my face. I tend towards claustrophobia anyway, and the thought of going to bed with this thing strapped to my face was just horrifying. In fact, for a couple of years I had been suffering nightmares -- typically as I was drifting into sleep -- that something was smothering my face. Sometimes I dreamt that my blankets had mysteriously come to life and were closing over my head; sometimes I dreamed that my cat had thrown herself across my face; still other times I dreamed that objects had fallen on my head and were closing off my air supply. And I would awake, shaking and sweaty, frequently unable to go back to sleep for some hours.

How could someone who had chronic nightmares about things closing over her face ever adjust to CPAP?!?

Won't say it was easy; I had to work up to wearing it through the night. (Wearing it while reading or watching TV was actually a very helpful step in adjusting to the machine.) The ducks in this forum will tell you that they adjusted fairly fast and fairly easily. May you turn out to be one of them! If you are, however, a cat, you may take longer -- a month or so (like me), or several months (like others hereabouts). I was pretty damn tired the first few weeks, and felt as though I was sleeping much more poorly than I had before treatment started. But little by little, I adjusted. And little by little, I began to feel the benefits.

But here's the kicker: from the very first night I strapped my mask on, I never again had one of those awful falling-asleep nightmares in which I was suffocating. Not one. I occasionally wondered whether the cessation of those particular nightmares was somehow a consequence of CPAP therapy or merely a coincidence. And I feel sort of stupid admitting that it took me several months more before I realized that those "nightmares" had actually been appeals from my mind to start breathing again because I was experiencing an apnea!

Sometimes we worry about how we will handle something instead of worrying about what we're not handling already. I was so anxious, in the beginning, about whether I would be able to tolerate CPAP that I couldn't focus clearly on the apnea that was already far more of a threat to my emotional -- and physical -- well-being than the machine.

Good luck, and take advantage of the knowledge, experience, and encouragement you'll find around here.

Well said, I loved the comment about taking to it like a cat to water. I felt like getting my husband to stay on the hose was like herding a flock of cats.

[writergirl2002]

Are you still there, Writergirl?

Sorry...I went off for a bit.

[writergirl2002]

That's good to know I guess...my imagination is sometimes bigger than reality. I have a really hard time remembering "I don't know until I try" and instead jump right to "OMG!!!! I can't DO THIS AND I AM GOING TO FREAK OUT COMPLETELY!" I said the same thing about the sleep study and did fine. :

Don't worry...once the mask is seated, it doesn't blow much air. The initial blast before you put the mask on can be pretty intimidating, but once the mask is on, it's really not blowing air into your nose, at least not unpleasantly so. For me it just feels like my nose is completely clear, even when it isn't!

[pootsie]

That's good to know I guess...my imagination is sometimes bigger than reality. I have a really hard time remembering "I don't know until I try" and instead jump right to "OMG!!!! I can't DO THIS AND I AM GOING TO FREAK OUT COMPLETELY!" I said the same thing about the sleep study and did fine. :

Don't worry...once the mask is seated, it doesn't blow much air. The initial blast before you put the mask on can be pretty intimidating, but once the mask is on, it's really not blowing air into your nose, at least not unpleasantly so. For me it just feels like my nose is completely clear, even when it isn't!

I find it easier to put on the mask before starting the machine. No blast at all.

The air is only blasting if the mask is open--like a balloon, there is pressure but it is not going anywhere.

I also find it helpful to do a little conscious breathing with my mask on before setting off to sleepy-land. Eyes closed, but alert, relaxing, focusing just on feeling and hearing myself breathe. Meditation-like. It helps me a lot.

Keep talking to us. This group has helped me a ton.

[Julie]

Hi - I think we'd all be in a better position to try and help if you'd fill in your profile under User Ctl Panel (below logo). Put in the full name (see machine bottom if necessary) and model #'s etc. of all your equipment and what pressures you're set at, whether you're using the ramp feature, etc. etc. That way we'll all know your info (I know, privacy issues, but we're all in the same boat and no one at all outside of the forum sees it) which will show up when you post under the note.

[BlackSpinner]

That's good to know I guess...my imagination is sometimes bigger than reality. I have a really hard time remembering "I don't know until I try" and instead jump right to "OMG!!!! I can't DO THIS AND I AM GOING TO FREAK OUT COMPLETELY!" I said the same thing about the sleep study and did fine. :

That is ok. Say it while looking in the mirror. Once you have said it and acknowledged it then you can say "I don't know until I try". I always go to the worst case first because once it is out in the open it doesn't seem so bad.

[writergirl2002]

Did you not read any of this? I don't have a cpap, a machine, a pressure or anything. So...what do you want me to do about that? Sorry to be grumpy but I'm not getting sleep until I get a cpap and about 15 people on other boards have told me that and freaked me the hell out already.....

Hi - I think we'd all be in a better position to try and help if you'd fill in your profile under User Ctl Panel (below logo). Put in the full name (see machine bottom if necessary) and model #'s etc. of all your equipment and what pressures you're set at, whether you're using the ramp feature, etc. etc. That way we'll all know your info (I know, privacy issues, but we're all in the same boat and no one at all outside of the forum sees it) which will show up when you post under the note.

[imsleepynomore]

Continue to push your doc to get your CPAP and fitting for your mask hopefully you will have a kind and knowable therapist I was so fortunate to have had one this does help if not do a lot of reading on this site it taught me a lot of tricks to make CPAP comfortable. Please continue to let us know of what is happening . Good times and good health are coming.

[chunkyfrog]

Aren't kids wonderful?, I wish I could give you a hug myself!
I'm sorry they seem to be dragging their feet on getting your equipment.
i suspect in some cases it may even be a ploy to get the patient so desperate that they will walk out the door with a brick;
and the DME happily fondles the extra money he made while chortling gleefully.
DO NOT accept a machine that only gives compliance data.
You will have to live with it for years, or go out and buy the right machine-out of pocket.
I got my second machine that way; and consider it the best money I ever spent.
--But I couldn't get an Autoset first thing due to my doctor's complacence, my ignorance, and my (former) DME's greed.
If I had read this (folow link) earlier, things would have been different.
http://maskarrayed.wordpress.com/