Newly Diagnosed. Not Happy. Need Equipment Advice.

Hello from another newcomer!

This forum has many knowledgeable, informed members who are willing to generously share their time with those of trying to learn about apnea and cpap. I hope you'll recognize what a treasure trove this place is and hang around awhile.

I use the ResMed S9 Autoset machine and it's very quiet - when I wake up during the night I sometimes have to check to confirm for myself it's even running. And it's capable of capturing the data needed to follow my progress and make adjustments to my treatment if needed.

I'd suggest looking at this mask if you (like me) don't like the idea of all the headgear, etc. Several members here have this same mask among their favorites, also. It's almost like not having anything on. https://www.cpap.com/productpage/resmed ... -cpap.html

Good luck and please keep us updated on your progress,
Bonny

Here are my 2 favorite masks:

F&P Piliaro
https://www.cpap.com/productpage/pilair ... k-f-p.html

SleepWeaver Elan
https://www.cpap.com/productpage/sleepw ... -mask.html

Take a look at these too,
Jen

I was goin' to post a reply earlier this morning and I am glad I didn't. I logged on now, ready to vent, and I see the direction the "later-in-the -day" posts were going, and I feel somewhat better. To hear you say "you are not going to wear headgear" is like saying "I want a car without wheels". In my humble opinion you are not going to be successful unless you are determined to find a mask that is comfortable and doesn't leak. My "mask-journey" was challenging, and I see people here (and others that I helped) really struggle with their masks. There are a few blessed people that have adapted to the first mask they were given. You have to accept that you will wear it for someone in your life ( family, friends, your dog... someone), if not for yourself I encourage folks to work every issue here because one issue can frustrate you to the point of eventually quitting therapy. My attitude this morning was that you wanted to boo-hoo here without putting any effort to your therapy. There are folks that have been here a long time that can truly help you, but you have to wear the mask every night and make it work. So... do you want help?

Sheriff

When I read your post this morning, I though " hmmmm.....somebody is pissed off at having to do the cpap thing" , so you got a kick in the pants for being pissed off instead of asking questions and accepting the fact that you must now wear a machine to bed EVERY night. Whoop di doo to you...I had cancer when I was in my mid twentys, with three kids under the age of 7 at home........and since then I've had 3 heart attacks....SEE, you are not alone with health problems. I know for a fact that my story is mild compared to others on the forum . If you would take a deep breath, sit down and relax......then come back with some specific questions that we can answer for you...we can't answer questions when none are asked. As to a machine and mask.... as long as you get a data capable machine, you are good to go....and as to a mask...sorry, but none of us have the same facial features or problems with fitting. I have gone through 12 of those nasty things and have found 2 that I will put up with. Most of us have come to the realization that our health is far more important to us than the fact that we have to use a stupid machine and wear an uncomfortable mask every night. But you know what....that stupid machine and that uncomfortable mask are keeping us from ending up on the garbage heap. So to repeat my advice I gave you this morning, read and read some more on this site, and educate yourself on how to get on with this therapy....that is the only way you will win. Patience and persistance are the ONLY way to get yourself on to a better road to an acceptable life . Being crabby and mad at the world are indeed symptoms of this disease, and the only way you will get better is to embrace the therapy.
Cheers
Nan

Kims,

Welcome. Another PM for you to check.

49er

I sort of doubt she'll be back.

Have you ever had a frank talk with an addict? Same programming and thin, easily scratched case, and same keypad with all the same buttons that are so easily pushed:

Don't judge me!
Don't speak harshly to me!
Don't confront me with the truth!
I know I have a problem, but I'll get straight after the weekend . . .

I'm not sure it increases compliance to tell someone who is overwhelmed by the THOUGHT of using CPAP that they will have to use it every night for the rest of their life. I wonder if compliance could be increased by suggesting they just try it for X period of time and they can make a decision after that. Most people don't like being in a situation of not having choices, and the truth is that they do have a choice, as evidenced by the many OSAers who don't use CPAP.

Kims I hope we didn't make you mad enough to stay away forever!

https://www.cpap.com/productpage/fisher ... -Mask.html
This is my favorite headgear. Notice the hose on the gear goes up to the top of the head. The hose from the machine attaches at the top. If you don't have a head board on your bed, pull the bed away from the wall a little. The hose will lay over the top of your bed pillow and fall down nicely in that space to go under the edge of the bed to your machine, if you put it on the floor.
There! You won't get tangled up in a hose that's not laying all over your body.

Other people like the Pilario headgear. https://www.cpap.com/productpage/pilair ... k-f-p.html because it's light weight and very little on the face. The Swift FX https://www.cpap.com/productpage/resmed ... dgear.html they gave me (my first mask) kept coming off because I kept rolling over on the hose and pulling the head gear off when I moved. Gee... there's a solution for nearly everything!

What every you try be sure to ask if the DME has a 30 day trial for masks. That way you can return one if it won't do for you and try another.

As for quiet machines: the only one I have experience with is the ResMed S9 Autoset. It's so quiet I sometimes have to check to see that it's on. When I do hear it, it sounds like a person quietly breathing next to me. My husband's Respironics M Series cpap moans and groans. I'm so glad he has it under the bed on his side. That kinda blocks the noise. Foam Ear plugs helped me out the first year he had his machine.

Wishing you the best!
Cindy

Welcome Kims, I'm glad you found this forum, we're all here to help you and you've gotten some heartfelt responses already. My only thought is that once you were given the ultimate cancer diagnosis and faced that treatment bravely, you can certainly do this too. There's nothing invasive or painful about this therapy, it's air opening your airway and allowing you to have restorative,restful sleep and not causing further damage to your body. Of course there's a period of adjustment and making sure you have the best equipment and pressure settings for your situation and finding the right mask is sometimes frustrating and requires patience, but it's nothing compared to what you must have endured. I hope you'll read everything you can here to become educated and come back and ask lots of questions, there are so many "experts" here to help you along the way. Good luck.

Thank you for all of the kind replies and I am back (for whoever threw in that little jibe and seemed proud of the fact that you had probably driven me off). For those of you with the snarky attitudes who are criticizing me for having a bad attitude, I won't apologize for being upset and angry at my predicament. You really need to look at how you respond to people who come here for the first time. I thought that a dental device and losing a little weight would take care of this problem. Much to my shock and dismay, it won't because of my anatomy. I am on a cancer forum and a dear member who was a treasure trove of information treated newcomers the same way I was treated here. Newcomers to the cancer forum are angry and scared and don't know what to expect. This member I speak of had been batteling cancer for 8 years. A 29 year old woman came for the first time with questions about harvesting and freezing her eggs before the chemo made her infertile. She had been married 6 months and had been diagnosed the week prior with stage IV cancer. Our member blasted her and told her she had no business even thinking about getting pregnant with stage IV cancer because she would be dead before her kids reachyed their teens. Probably true, but the woman was devastated and never came back (and lost out on a lot of help and support). I saw a posting from her on a different forum and she was very understandably upset. So, while what you have to say is probably true, please skip the judgements. I have a thick skin and need the information you all have to offer. Not everyone is like me, so your nasty replies may end up turning off people who could really use your help. I'm just sayin.....something to think about.

Go to the lightbulb at the top of the page and start reading the links - lots and lots of info, but take it easy on the people here as they're all on the hose and have all gone through who knows what to get here (many more things than 'just' apnea, same as you), because the thing is that cpap has had such a bad rep for so long with tons of misinformation spread around - mostly by doctors! They call everyone 'noncompliant' instead of learning how to help with our problems (completely mis-fitted masks pawned off by DME's going for cheap instead of effective), people sure we're all fat (and whatever else goes with that), patients trying to make it work but getting all the wrong help, and so much of it incredibly condescending - e.g. we should never adjust our machines on our own as if we were idiots - diabetics take care of their own therapy to a large extent, so why not us?

In any case, of course we understand, but are afraid to commiserate in case people read it as getting 'permission' not to use cpap, and that's a shame...

There is so much help available that you can't yet foresee, so if you'll give us another chance, we'll calm down.

kims... I'm glad you have "thick skin" and came back. I'm stuck, like you in the anatomy department with narrow jaw and all the rest. I snored like a chainsaw even as a kid. And when an adult that only weighed 135 lbs. and ran 5Ks in my 40's.
Read, Read, Read all you can about apnea like others have said. You can go to cpap.com and look at their machines and read the specs about them. There are a lot of choices out there, but some are better than others.
If you have a DME near you consider dropping in to look at their stuff. Go on an "educational field trip". Somehow a photo just doesn't give me enough "feel" for an object. I have to hold it, really look at it. Understand how it works...I'm a closet tech at heart.
No question is too silly or stupid to be asked here... there is a mountain of stuff to learn if you want to be in charge of your health. Knowledge will help you get through this, improve how you do it and how it feels.
Once you settle on headgear, Padacheek sells nice cloth pads that cover up the plastic and straps. There is a lot to be said about how physical comfort adds (or lack of it detracts) from people getting through this. There is one headgear with the mask part made of cloth, that people have mentioned in other posts.
I'm glad you came back...and wish you all the best!
Cindy

Welcome to the group. Many people can be blunt, but they mean well.

I did all of my bad attitude before I got my official diagnosis. I knew for years that I had sleep apnea. I have snored for at least 10 years, and I wake myself up with that snorting and choking. My mom has sleep apnea, so I am familiar with the diagnosis and the cpap machine. Most of my reasons for ignoring it was that I hated her machine (it was loud), and I hated her mask (I thought all masks were nasal only, and I can barely breathe through my nose when lying down). And i thought that sleep apnea was just messed up sleep that caused sleep deprivation. I'm a sever night owl. I'm used to lack of sleep. No biggie.

About 4 years ago, I had an irregular heartbeat after a bad asthma attack. I was on medication for awhile, and it cleared up. Ever since, though, my blood pressure was always a little high, usually 140 something. Eventually, it went higher, and my doctor was getting concerned. She would mention that she didn't want to see me at risk of a stroke. I blew it off. I was only 30 something. That's something to worry about later.

A year ago September, my blood pressure was up in the 160s over 100-105. My doctor was very serious and said I was at a high risk of stroke. That bothered me, and I grudgingly started taking medication. Less than a week later, I had the scare of my life. I was traveling, and woke up in the hotel room with severe vertigo. The room was spinning, and I couldn't even walk or keep a sip of water down. I had to go to the emergency room. In the ambulance, my blood pressure was 197 over something. And I remember the doctor saying it was NOT a stroke. What hit me was that he CONSIDERED it. I was 39, and most people think I am only 30. I look very young. So, this doctor was considering stroke in somebody who looked 30. Yikes.

When I got home, I looked up vertigo online, and it can be a symptom of a stroke. A couple days later, it started again, and I had to go to the local emergency room. Again, the doctor ruled out stroke, but did a cat scan to make sure it was not something really serious. This really scared me. During the next few months, my primary doctor doubled my blood pressure medication, then added another, then doubled it, and added another. It was down a little, but not into the normal range. Then I saw something on the news. Sleep apnea causes high blood pressure, heart attacks, and stroke. And then at work, I saw a regular customer who had suffered a stroke. She had gone from an overweight woman to a very thin and frail lady, who looked ghostly, and could barely speak. It was sad, and I really disliked this lade before. Now, I pity her. And I fear that I could be like that someday. I had another appointment in a couple weeks, so I decided to confess that I have sleep apnea. It was time to deal with it and solve it.

That was last March. I had my sleep study in APril and got my machine on April 30th. It was so much better than I expected.I got the Resmed S9 autoset. It is very quiet, and travels well (I travel a lot). They had several options for full face masks, and I am very happy with mine. Most nights are okay to good. A few are really awesome, and a few are really bad. I have not completely mastered it yet, but I feel better overall. My blood pressure is better, even normal if I have multiple nights in a row that are good.

For me, it really did take some scary warnings from my doctor and scary symptoms that matched those warnings to get me to move forward with mastering my fear of the cpap machine. Now I just can't believe I waited so long. I could have felt better so many years ago. And while I wish I didn't have to use a machine, it's not nearly as bad (in my opinion) as the medication I have to take. I am praying that I can get off those eventually. I have trouble taking pills due to my small throat, so I struggle to keep up with the medication. I am only making a decent effort at it because I keep seeing the lady who had a stroke, and that scares me.

I'm not sure what to tell you about headgear. There seems to be only one mask without headgear, and that doesn't seem to be well tolerated. I would recommend using a the liners and padding if you have trouble with the materials of the mask and headgear. I highly recommend the Quattro FX (no forehead piece and quite comfortable) and the two hybrid masks. They use nasal pillows so less on the face, and still have a mouth area so that you can breath through your mouth.