Newly diagnosed...pretty upset

[writergirl2002]

I don't know if this posted....newly diagnosed and scared of it all. Would love some positive responses about cpap, etc. Just seriously discouraged. I just lost 30 lbs, and still dealing with this .. also I have severe anxiety and am really worked up about having a mask over my face.

[DEXSUZ]

WriterGirl2002:

You'd well benefit from "Sound Sleep Sound Mind" which is the book I just reviewed for this forum. The information contained therein would put many aspects of your unease to rest.

[caffeinatedcfo]

Check the top section for new CPAP users and success stories. These helped me accept and adapt quickly.

Also, know that the modern masks and machines make CPAP therapy very comfortable.

I have been using for just over two months now and not only am I sleeping better (more REM and deep sleep), but I'm also falling asleep quicker because CPAP actually relaxes me.

[DreamStalker]

Yep. When I first got diagnosed I remember thinking to myself that there was no way I would ever sleep with a mask on my face.

I surprised myself that not only could I sleep with a mask on my face and connected to a noisy air machine, I actually became addicted to the benefits (ie. feeling 20 years younger).

So just like when you first realize you are going to grow old, you learn to accept it and make the best of it. With CPAP therapy, not only do you learn to accept it, you really do make the best of it for your quality of life.

[DavidCarolina]

Youre right where you should be. Youre not in denial. This therapy will do its job. Stick with it.

The RESMED EPR's CPAPs ive found are the easiest machines to adapt to because it feels like the machine
is helping you breathe in and out.

If youre using humidity consider turning the heater off. Hot air makes you feel claustrophobic.

Keep your room very cool and use blankets, breathing cold air a huge help.

[jilliansue]

Hi, and welcome! One thing to keep in mind is that there are many, many choices out there as far as masks. I started out with the Swift FX nasal pillows mask and it was much more comfortable than I had anticipated. Talk about your pleasant surprises! Very minimal, too. I think you would likely feel less anxious with a smaller mask. I am about to order and try the Wisp, which is also small, but goes just over the tip of the nose instead of having the "pillows" resting at the entrance to each nostril.

I am a mouth breather and use a chinstrap to help keep my mouth closed at night. So if the medical equipment provider (also known as a DME) tries to say you need a full face mask due to mouth breathing, this is not necessarily the case.

Most of all, there are SO many knowledgeable individuals on this list and so many, many helpful tips that the docs either don't know or don't tell you about. This has really helped me more than I can say.

Peace,
Jill

[MagsterMile]

I didn't get a chance to read it yet (posted here on this forum) about the new Mirage Quattro Air mask. I put in call to DME to find out about it. I'm a female and I find most of masks are designed for males (too large). The description on this mask shows both genders will be able to select a size for them. Your selection of mask is the most important thing that you can do IMO. It took me about 8 months to get more involved in my mask selection because I wouldn't give up on the original mask that the DME gave me and didnt' reap a lot of benefits of my therapy. This forum is very encouraging about standing up for your rights. Be open to new ideas and don't be nervous about asking your DME for answers to your questions. Mine always rolls her eyes when I ask something but we've basically reached an understanding (finally) and I'm getting the benefit of that. Get your RX. You're entitled to it. Sometimes, as a woman, it's not so easy to 'make waves' but I'm changing. You will get lots of support here.

[jdm2857]

I think the mask referred is actually the Quattro Air.

ResMed mask names are very confusing.

For example the following are all different ResMed nasal masks:

Ultra Mirage II
Mirage Vista
Mirage Micro
Mirage Activa
Mirage Activa LT
Mirage SoftGel
Mirage FX / Mirage FX for Her

The following are all ResMed full-face masks:

Ultra Mirage
Mirage Quattro
Mirage Liberty (hybrid-type mask)
Quattro FX / Quattro FX for Her
Quattro Air / Quattro Air for Her

So, naturally, it's easy to get confused.

The ResMed marketing folks need better imaginations.

[grace62]

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.

[tuzacat]

I welcomed my diagnosis because I felt so bad; I was glad to find there was a reason for and a solution to my exhaustion. It took me several mask switches before I found one that was comfortable for me. And after some initial success a year into therapy I realized I was right back where I'd started from and had to have a second sleep study. This generated a change from Cpap to Bipap. It certainly was a process, but now after several years I am finally sleeping though the night for the most part and feeling rested. You are lucky you have found this forum so early in your recovery. I have found the advice here to be invaluable. I think I would have had more success with therapy earlier if I had found this forum sooner and had the courage to ask questions. Good luck to you!

[Crazy Eddie]

I don't know if this posted....newly diagnosed and scared of it all. Would love some positive responses about cpap, etc. Just seriously discouraged. I just lost 30 lbs, and still dealing with this .. also I have severe anxiety and am really worked up about having a mask over my face.

I was also just recently diagnosed. My thoughts:

* The mask does take some getting used to but for the most part I have. I also learned a little trick that helps a bit and that is to let the mask leak just a little bit. CPAP still needs to pressurize, but it makes it blow air faster and pushes out the warm, just breathed air better. I'm claustrophobic enough to cause panic attacks, and this trick helps a lot; eventually I hope to work myself out of it to be able to use a fully sealed connection.

* There are a LOT of masks to chose from and I've really only tried two so far. One is absolutely horrible, the other may become my permanent one after I try a couple others.

* Playing withh the CPAP machine is kinda fun. I imagine the novelty runs out, but checking out the various waveforms of my sleep is pretty fascinating.

* I'm still tired and still have horrible sleep habits, but I'm not so exhausted all the time. I've actually started doing actual yard work and not just giving up after 5 minutes of breathing heavy. Not sure if that's the CPAP or that I stopped taking my heart meds. I'll soon find out though as I started taking those again...pressure built back up after a couple weeks.

* My girlfiend gets better rest as well. The CPAP isn't silent, but it's a lot quieter than my constant apnea attacks apparently.


It's not the easiest thing I've done...but it's not the hardest either. It's not as bad as I expected. I'd say calm down a bit and just check it out.

[pootsie]

Embrace it.

I am new to this, too. The good people here have been a tremendous help. But there is no substitute for one's own positive willingness to be a part of one's own therapy.

The mask will take adjustment, but it helps if you can make yourself eager to adjust. You can do it.

<<hugs>>

[Wulfman...]

I don't know if this posted....newly diagnosed and scared of it all. Would love some positive responses about cpap, etc. Just seriously discouraged. I just lost 30 lbs, and still dealing with this .. also I have severe anxiety and am really worked up about having a mask over my face.

Actually, I was relieved to find out what was wrong with me and (after doing some research) that the therapy was going to be "a piece of cake". For all intents and purposes, it has been.
Personally, I prefer the mask on my face every night to a coffin lid.
Attitude is everything.
It's "Baby Steps".
Taking control over your own therapy is also very important.......nobody will care about it as much as you will.


Den

.

[imsleepynomore]

I was so anxious to start Cpap after my sleep study and placed on cpap during the study that was the first time I slept comfortably in years I had gotten to the point of not wanting to go to bed despite the fact I was falling asleep multiple times during the day and spent my waking hours fighting sleep . I was one tired person. After starting I would kiss my hubby goodnight rollover and fall asleep in "my world " no more miserable nights waking up gasping. I know everyone is not as severe as I was but I just waited soo long before diagnose . Look at your mask as comfort and quality sleep. Explore the choices of masks and do not be afraid to learn all about this treatment.

[KylaManhattan]

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.