Other options?

[Bobdillon]

I was diagnosed with mild central apnea and moderate to sivir obstructive sleep apnea. I don't get it.. I'm a 20 year old boy 135 lbs, play ice hockey. Why the hell do I have to go through this crap?? It explains why I have been feeling so damn depressed recently to the past year, no desire to accomplish anything, no motivation, no energy, life feels crappy and useless - like me. My dad has apnea but has had like 5 surgeries for it and this last one is supposed to be it. I CANNOT USE THIS DAMN CPAP MACHINE THEY GAVE ME AND I DON'T WANT SURGERY! My parents care and want me to do whatever it takes and are paying for it, but frankly I'd rather die in my sleep then use this machine for the rest of my life, or have surgery that may or may not work. I can't even make it one night with it on, I've gotten to the point where I just can't sleep with it on, I either take it off before sleeping or in the night. I'm Sick of this world. There has to be some other way. This nose mask is awful.

[Goofproof]

At least you found out before you had time to weaken all your organs. Now all you have to do is climb out of the Hole of De-Nile you have dug, then you will be able to get on with your life. It's only air, if all our problems could fixed with a little air we would be lucky, most of us have real problem from many years of Sleep Apnea. It's simple, use the treatment, make it work, attitude is 99% of success. No one can do it for you, their is no magic pill.

Get a machine that records full data and the software to monitor your treatment, they make many masks even full face ones. Read the knowledge from this site, sing up, fill out your equiptment in TEXT not ICONNY, list your mask and pressure settings, you can get help, but firts you must decide you want to make treatment work. Jim

[zoocrewphoto]

Sorry to hear you got hit with it so young, and you are having so many problems trying to adjust to it.

Some suggestions. Check out the top thread - Especially for newly diagnosed - Dealing with Change

It really helps as it is a huge change, and it is a lot like losing something, so it is very similar to the stages of grief. It is very normal to feel this way. But trust us when you tell that it does get better. And once you get to where it is working for you, you will really feel a lot better, and then you won't want to sleep without it.

First off, it sounds like your mask is NOT the ideal mask for you. There are lots of different masks, so you will want to find one that fits you well and is more comfortable, and without leaks. What kind of mask do you have. And what bothers you the most about it? For example, is it the kind that goes all around your nose? Does it hurt? Does it leak? Do you feel claustrophobic? Or maybe you have the nasal pillows where it just goes inside your nose a little. Tell us what kind and what problems, and people that have used those masks can help you make it work for you better or suggest something better for you.

If you go to the user control panel (just below the search bar), you can add your equipment there, so people can help you with your questions. If you have a machine with data, we can pint you to the software, so you can see the graphs and reports. That will help you to figure how it is working, and if any adjustments need to be made.

I would definitely avoid the surgeries. Most people end up with sleep apnea again anyway, and some of them cause permanent damage. They really don't seem to help people long term.

Welcome to the group. This is a great place to help you.

[kaiasgram]

Bob, you already know that severe sleep apnea causes depression. So now you're trying to deal with this crummy diagnosis and using CPAP while suffering from depression. Totally overwhelming. But, you do not have to repeat your father's experience. Please remember that how you're seeing this whole cpap thing is through the lens of depression, so consider that if you can get the machine and mask stuff figured out and start getting some healthy sleep, your life might start to look different -- and better. Seriously. Even with having to use that machine.

A lot of us on this forum can tell you that we would have quit cpap early on if all we had to rely on was our doctor and medical equipment provider. A lot of people have found the help they needed here on this forum to get the whole thing working for them. And some of the forum members are in their twenties like you.

Question: You mentioned having both central and obstructive apnea. Was your official diagnosis mixed sleep apnea? I'm wondering if you're trying to adjust to a bilevel or ASV machine and not straight CPAP. There are people here who use bilevel (also called BiPAP and VPAP) machines and ASV machines, and they could be a good resource.

The company that sponsors this forum, cpap.com, sells masks with the option to buy return insurance -- you can try a mask for up to 30 days and return it if it doesn't work for you. Most of us have gone through quite a few masks before we've found the one that works best. Will your folks help you out with this if your insurance is limiting you with masks?

I hope your posting here means that you really do want some help with how to deal with your diagnosis and treatment. There is a ton of help available here. Post again and if possible get more specific about your equipment and the particular issues you're having with it.

I think this can get better for you if you'll give it time. For now try not to focus on being sentenced to this for the rest of your life. Take it one day at a time or else it will continue to overwhelm you. I will be honest and tell you that I still hate having to be on CPAP, but after five months I am gradually -- and I do mean gradually -- making my peace with it. Which means I still hate it but it is no longer overwhelming me the way it did in the beginning. It's fading a little more into the background of my life rather than being the intrusive monster it was at first. But you've absolutely got to start getting some good sleep and getting the depression managed before you can really come to terms with it. So please keep trying -- every extra hour that you're able to stay on the machine is going to help get you there.

[nanwilson]

As I see it, you have two choices...
1) Use the machine and get better
2) Don't use the machine, and have more health problems

You are not the youngest nor the thinest person to have to use a cpap machine..............there is an 11 year old boy, a16 year old girl both here on the forum. Plus my neighbours grandaughter age 9 and as skinny as a rail has a machine. I"m am sure that there are MANY more beside you...so put on your big boy panties and make your choices. If you choose number 1, then there are a bunch of folks here on the forum that are willing to help in any way that they can...if you choose number 2......................sorry, you made the wrong choice.
Nan

[49er]

Bobdillon,

Welcome to the forum. Probably a welcome you never wanted.

Sorry, my attempt at lame humor.

Kaisgram and Zoocrewphoto gave you great advice. I agree that it sounds like your mask is a horrible fit and that you need to find the right one. With all the choices out there, there is no reason for you to put up with one that doesn't like a good match.

As far as using the cpap the rest of your life, I agree with Kaisgram's advice about taking it one day at a time. And since you are so young, you might see an invention in your lifetime for sleep apnea that trumps the cpap machine. Never say never.
Or as Zoocrew said, once you work through the problems, you might love your machine.

But meanwhile, this is the situation that you are dealt with and we're here to help you get through it.

Finally, you might find that once you get adjusted to machine, your performance as a hockey player will greatly increase.

Hang in there and keep asking questions so we can help you adjust as quickly as possible.

49er

[Bobdillon]

Honestly I have already decided multiple times I'd rather risk dying in my sleep then have to live with cpap forever or deal with surgery / complications. So saying "put on your big boy panties" makes me want to refuse to use it even more.

As for the others.. thanks for your responses.. I was trying to use it last night and got upset with it threw the mask off and went to sleep after ranting on this forum which is why I was so mad.. Angry tears. I guess just seeing nothing else in my life has worked out the way I wanted it too, this just added on and made it worse. Maybe someday everything will work out, I will take some of your advice.
As for the machine it's just CPAP not bipap tripap quapap penpap. Just cpap. It's a nose mask that has straps around the head which I guess is prob the annoying part is that it pulls it around my nose tight, and I don't like that / makes me very uncomfortable. Unless there is a mask that has no straps around it and nothing that pulls tight around the face, it's unlikely I will use cpap. My doctor gave me sleeping pills to use while getting used to it, I took one, managed to stay awake for an hour (contrary to what he told me would happen after taking one) and ended up like I said, throwing the stupid mask on the ground, only to pretty much instantly fall asleep after posting this.

I don't know the air level, they said they set it higher than what was probably right for now until my next sleep study which is tuesday.. We will see what happens I guess. With all the stuff doctors know and studies done, you'd think they would of figured sleep apnea out.

Yes - I would love to feel better than I have and do. Yes - I would love to feel more energized, be able to accomplish tasks, and hold a job. No - I don't see myself accomplishing that through cpap anytime soon.

To answer the question - it was only like 7 central apneas so they diagnosed with osa, but told me the cpap made my central worse.

The main thing that makes it hard is the mask, and then the air, it feels weird and harder to breath when breathing out, after breathing in through the mask. Almost difficult..

[Bobdillon]

I was also wondering, I don't and have not had a normal sleep schedule.. I realize they are better, but could getting on one fix sleep apnea / more exercise? Do extremely physically fit people with great sleep schedules get sleep apnea? What causes it, how did I get it, why? I'm skinny, young, exercise.

[BlackSpinner]

So how is this different from playing hockey? You wear the equipment to keep you alive so you can win the game. Sure it is annoying to wear that face mask but you do it because otherwise you don't get on the ice. Do you want to sit on the sidelines for the rest of your life? Because it probably won't be a quick "died in his sleep".
It will be slowly becoming a vegetable, maybe a stroke or two. It will be a slow miserable death while your friends zip on the ice and pick up the girls, you will be sitting there turning into a fat, unattractive couch potato with a nasty personality wearing adult diapers. And all you had to do was wear that mask, use the machine, and you could have been a powerhouse with arm candy drooling over your abs.

Investigate the machine and masks, treat it like your equipment, make sure the mask fits like your skates do. Learn how to make it power your life. It is just another game to win.

[Sir NoddinOff]

I was diagnosed with mild central apnea and moderate to sivir obstructive sleep apnea. I don't get it.. I'm a 20 year old boy 135 lbs, play ice hockey. Why the hell do I have to go through this crap?? It explains why I have been feeling so damn depressed recently to the past year, no desire to accomplish anything, no motivation, no energy, life feels crappy and useless - like me. My dad has apnea but has had like 5 surgeries for it and this last one is supposed to be it. I CANNOT USE THIS DAMN CPAP MACHINE THEY GAVE ME AND I DON'T WANT SURGERY! My parents care and want me to do whatever it takes and are paying for it, but frankly I'd rather die in my sleep then use this machine for the rest of my life, or have surgery that may or may not work. I can't even make it one night with it on, I've gotten to the point where I just can't sleep with it on, I either take it off before sleeping or in the night. I'm Sick of this world. There has to be some other way. This nose mask is awful.

The three areas I've highlighted above are depression taking over. I think you should talk to a psychologist, trusted friend or loved one. If in college you can usually find a psychologist to talk to. If you are religious you can perhaps find someone in the clergy to help you. You are young and life seems unfair, but those are the cards you were given. The 'Suck it up Buttercup' crowd here on the forum can be bluntly severe, bordering on cruel, so take it with a grain (big bag?) of salt and get some help discussing your issues. Good luck with your treatment. Edit: I just reread you latest post about masks... maybe try nasal pillows like the Swift FX. Just click down below on my profile for a link to a site that features them.

[Reenee]

Dear Bob,
I feel your frustration. I am sorry. I am a 56 year old woman, not skinny...but the Dr. says I would probably have it anyway due to the shape of my mouth. (I have been extremely frustrated and angry over this but have thank God found a modicum of peace lately) Yours and the responders words about depression has made me realize that aside from dealing with the grief of losing my only son, that not only had I been depressed (maybe due to this) but maybe my precious son did too. He also snored. Everyone and their brother made vicious fun of us. Ha ha ha.... I told his doctors when he was young that he snored but no one said anything. I just thought that it was part of life.

As he grew older (he was never over weight) he became more and more erratic. In hindsight, I knew he was depressed and talked to him about it many many many times, (encouraged him to get help) but he would not listen to a word I said. He developed an addiction to weed that was major. He kept telling me that it helped him function. I kept telling him that it was not healthy to be sucking all that smoke up your lungs and through out your body. It became his constant companion, (he never wanted to see me which broke my heart )along with a string of like minded girlfriends. Two years ago this December he came down with what we thought was a cold. He went to the Dr. one day, was diagnosed with Bronchitis, got antibiotics, went home. The next day he went to the hospital and by the time I got there, the Dr.'s were telling me that it was doubtful he would live. He had some underlying immune problems, and in fact did not. He died from sepsis, which is blood poisoning that he got from pneumonia. He had had a shot for pneumonia, but it was old. I believe that the combination of lots of weed (probably self medicating for depression) (maybe another casualty of undiagnosed sleep apnea) and a week immune system, turns out strong THC in weed is the worst thing for a compromised immune system. It attacks your T cells.

I also thought that after my diagnosis I wished I could have followed him and was angry that I could not have, I just wanted to be with him. (even though I have other kids and grandkids and a nice husband )The machine kept me awake when all I wanted to do was sleep and forget for a while. My nose pillows were too loose, and a little adjusting was very helpful. I was a mess to say the least. I have made baby steps toward acceptance, and have although been originally diagnosed with severe apnea, now after some weight loss and stoppage of anti depressants and lots of vitamins and exercise, a much better diagnosis. They are going to try a dental mouth piece on me in an overnight study. I'm not going to lie, I still don't like it much, but I am finally after about 4 months getting over the shock and some of the anger.
I like the idea of doing it one day at a time. The people on this forum are very helpful, and will help you with anything you ask. I have really told a lot of personal things in the hope of helping you, and saving your parents and you the heart break that I feel every day. I miss my precious son every hour of every day.
All the best to you.

[kaiasgram]

I was also wondering, I don't and have not had a normal sleep schedule.. I realize they are better, but could getting on one fix sleep apnea / more exercise? Do extremely physically fit people with great sleep schedules get sleep apnea? What causes it, how did I get it, why? I'm skinny, young, exercise.

Bob, you got sleep apnea because of anatomical features that predisposed you. And perhaps no surprise to you, it often runs in families -- because you inherit a lot of anatomical features from your parents. Some of those features are the size of your airway, narrowness of jaw, the arch of your soft palate, size of uvula, and tongue, and it goes on. It's nothing you've done, and it's not because of your sleep schedule. There is so much misinformation out there that most people associate sleep apnea with obesity and are shocked to learn that thin, fit, and young people can have it too.

I want to respond to your other post and will shortly -- in the meantime do what SirNoddinOff said about taking the harsh negative replies with a grain of salt -- at most. When I read your first post I was afraid they would start this with you and it has started already. As best you can, let that stuff roll off and pay attention to only that which helps you right now and gives you some hope. SirNoddinOff got focused and rightly so on the significance of your depression and the importance of getting some relief from that. Some of us really do understand that what you need right now is not 'scolding,' sarcasm and scare tactics but a reason to be hopeful and to keep trying. Asking more questions and providing us with more information as you've done today is a really excellent start. Don't go away Bob!

[kaiasgram]

Maybe someday everything will work out, I will take some of your advice.

Hold on to that part of you that thinks there might be even a small chance that you'll get through this. There's the survivor in you, seriously. You're already considering taking some of the advice available here.

Thanks for the info about your diagnosis and your machine and mask. Clearly your mask is not right for you, it should not be too tight and feel that uncomfortable. So just know that you can move on and try some different styles of mask and eventually find a workable one. Here is where you'll find a lot of feedback about peoples' experiences with masks (there are about a million different masks and a good chance you could find one that is at least bearable). When we know more about the particular mask you're using now we might be able to make some suggestions about what you could consider trying next. And when we know what machine you have we can direct you to some software that allows you to look more closely at what's going on with your sleep and your CPAP therapy, assuming your machine records and stores that information.

OK, so your diagnosis is OSA, not central or mixed. And it sounds like your therapy is going to be a balancing act between keeping your pressure up enough to prevent the obstructive events but not so high that it starts causing you to have a lot of centrals. From what you're saying your pressure is not yet optimized for you. Hopefully that will happen at your sleep study on Tuesday. You may also not yet know about what they call the "comfort features" of some of the machines. Exhalation pressure relief is one such feature, allows the pressure to drop a little when you exhale, so breathing out against the incoming air is not as difficult. This is why folks are asking exactly what machine you have so we can begin giving you more targeted help.

It is beyond difficult to tackle something like this (getting fully educated about sleep apnea and cpap therapy) when you're feeling the way you're feeling. One step at a time, one day at a time. I think about what you said about your father, and I wonder how much watching him go through all those surgeries without success and continue struggling has affected you and shaped your perceptions and beliefs about what it means to have sleep apnea and need cpap. You can create a very different experience for yourself, just know that. Come back with more questions.

[jencat824]

Bob,
Count to 10 - now that you've counted to ten that's your PITY PARTY. How I've dealt with the many medical challenges in my life is to look around, you WILL find those who are worse off than you. I'm 52 years old, with multiple medical problems, and I can still find others worse off than me. When the depression & blues creep in, that's how I remind myself how lucky I am to be alive, breathing and able to do as much as I can. I would love to be 135 lbs and athletic, but I'm not. That is not even a goal for me, my goal is to complete my joint replacement surgeries in between lymphoma treatments, while timing treatments for MS. Many of these things could have been avoided if I could have known at your age that I had sleep apnea and had the opportunity to treat it.

Since you suffer from depression, maybe your doc would be willing to try Elavil. Its a rather old antidepressant that will help with sleep. It helped me when I started CPAP 12 yrs ago. Another is Klonopin - be careful with this (could be addictive), but it might take the edge off in the beginning stages of learning to LIVE with CPAP. The wisdom of those on this board will help greatly, starting with your mask. Listen to those who have gone before you. I have 5 masks, recently had to go thru the trying new masks again since my beloved mask changed the headgear and made getting a new mask necessary.

Using the software with you machine is a great way to participate. It can be as much a goal as achieving any athletic goal. Again, listen to the wisdom of those on this board, they will guide you with the software and how to interpret it. But to use the software, you must USE THE MASK & MACHINE. Once you are sleeping a partial nite, then all the nite with the equipment, you can fine tune your treatment to get the best results possible.

We all care & reach out to you. This world & this life is worth working for, worth staying in and life is a wonderful thing when you look at the benefit you have given to be diagnosed as young as you are. You have the chance to have a long & healthy life. Let us help you along that road.
Jen

[chunkyfrog]

Hi, Bob. I agree with others that you may have the wrong mask, or have been incorrectly coached on how to adjust it.
If you would like to see what we wear, just click on the bold type (or picture) at the bottom of one of our posts. My mask is CLOTH.
https://www.cpap.com/productpage/sleepw ... -mask.html
It takes patience to wear my mask, I was lucky to find it when I (finally) had what it takes to use it.
I have also used this mask--(almost like sleeping in the buff).
https://www.cpap.com/productpage/resmed ... dgear.html
There are dozens of choices.