super young, and super upset

[williexwhip]

ok, so i am 17. i weigh 434. yeah i know, anyways. as of about 3 months ago i found out i had sleep apnea. and 3 months ago i went to a sleep specialist for a sleep study to get a cpap. well i just got it today, 3 months later. i had to go back to the sleep office 4 times. 2 for sleep, and 2 for appointments. everyone else i have spoken to said they went once and got the machine. the first sleep they just hooked me up full of wires and i got like 2 hours of sleep and it was all good. 2 weeks later i go in for a meeting with the actual doctor. this would be the first and only time i would see him, and all he did was look down my throat, tell me i had to do another study. 2 weeks after that i go in for the sleep with the cpap. which btw was the worst experience of my life. i thought i was going to die. i told the women working there that i wasn't comfortable and couldn't catch my breath, and they would move the mask around a little then leave. i think once out of the 4 times i called them in did they change something on the machine. so yeah i spent most of the night gasping for air, trying not to die lol. then i had to wait. they said they would order the day after my study and i should have it in a couple days. fast forward 2 months, and several phone calls asking when it would arrive, they finally tell me to come in and get fitted for a mask and learn how to work it and all that good stuff. that was yesterday. i got the bipap. the mask they gave me is def more comfortable then the one i studied with. its gel or something, ill show a picture at the end. but i mean, im 17 years old. i find out i stop breathing numerous amounts of time in my sleep, i could die. and 3 months later i finally get a solution. im sorry if i sound mean or like a butthead, but its just so frustrating. plus i can barely sleep with it on, i think i got 4 hours of sleep all together. i know its going to take time. when i breath is and the air shoots through, the gel mask moves every time and its pretty annoying. wow i sound evil. im sorry. im done now.

[Snoredog]

FYI: that mask is NOT the ideal mask to have, it leaks like crazy and will leave a nice gouge in the bridge of your nose. The comfortGel would have been better.

Think of using the machine like wearing a cheap pair of tennis shoes to bed, those really cheap ones like from wally's world that have the plastic thingee still holding them together while you try to walk in them.

but the good part is you can take them off in the morning and no one knows any difference.

Yes you are young, but you probably need CPAP because of your weight, sort of a catch 22, don't use the machine your metabolism drops from the fatigue, you gain weight, use the machine metabolism goes up from the extra energy you begin to lose weight.

[williexwhip]

[quote="Snoredog"]FYI: that mask is NOT the ideal mask to have, it leaks like crazy and will leave a nice gouge in the bridge of your nose. The comfortGel would have been better.

Think of using the machine like wearing a cheap pair of tennis shoes to bed, those really cheap ones like from wally's world that have the plastic thingee still holding them together while you try to walk in them.

but the good part is you can take them off in the morning and no one knows any difference.

Yes you are young, but you probably need CPAP because of your weight, sort of a catch 22, don't use the machine your metabolism drops from the fatigue, you gain weight, use the machine metabolism goes up from the extra energy you begin to lose weight.

[kteague]

Yes, going thru the sleep studies and getting the right equipment and mask can be frustrating. Hard to understand why something life threatening can take so long to begin treatment. If that mask isn't working out for you, you can exchange it for another one - just don't wait too long. Once you get things working for you, your frustration level will improve. The goal is for it to become just another part of daily life. Welcome to the board.

[fatfeminist]

hi willie.

i, like you, went into this whole thing feeling like i would go to the doctor, and have a solution soon after. i also visited my doctors office twice and had two different sleep studies (overnight) before i got my machine. the most frustrating for me was that after knowing that i would get more quality sleep with the machine, after the second study, i had to go back to sleeping the same way i had always been.

i am also fairly young (25), and very overweight (320 lb). i just started my home therapy about 3.5 weeks ago and it definitely does take some getting used to. its good that you found the board here, there are a ton of people here who have been doing this a lot longer than us, and they are a wealth of knowledge.

i would definitely call your doctors office back and tell them the mask you have is not working out. you could do some searching on cpap.com for different types of masks, and see what you would like to try. i have the comfortgel, which i think is very comfortable, it is just a nasal mask, but i havent had problems with leaks at all...in any case it is your therapy and they should want you to be the most comfortable you can (even though at this point you probably feel like you will never be comfortable, it will get better!!).

oh, or if you cant take it back, or dont want to, you could always try to do things to modify the way it works yourself, something as simple as a different pillow, putting the hose in a diff position, or wearing your hair in a different way (im not sure what your hair is like but mine is super long so i found i have to pull it up almost to the FRONT of my head so that i can get the mask straps to rest in the ideal position) can help. i also know that some people use different things (pantyhose tights, strips of cloth) to help hold the masks on better.

as for the time period between your study and the receipt of your stuff, i know in my case all the paperwork i had said that the doctor had up to two weeks to even LOOK at the study. now granted, the sleep techs that were there with you overnight are with people every single night, and know exactly what is happening with you, and what you need, but of course they arent the ones with the MD after their name so the doctor has to view the study and sign off on everything. thats probably what happened with that...which is annoying as we are only seeing it from the side that is really in need of the treatment. the doctors usually dont know what its like to actually try to function in our condition, so that is a problem with the speed at which they do things.



anyway sorry to get so long winded, i just wish you very good luck with this treatment. keep reading the forum, search for answers to your questions, and keep calling your doc back to get your treatment to the optimum level!


Deidre

[sharon1965]

williexwhip said:

wow i sound evil. im sorry. im done now.

LOL, willie, you don't sound evil, you sound frustrated...believe me, that is a common thing around here, no need to apologize

not to worry, you've come to the right place...this forum is a wealth of information, support and empathy...stick around, post your questions, click on the collective wisdom yellow lightbulb at the top of the page and learn as much as you can and you'll do well...

if it's ANY consolation, which at this early stage it might not be, you are young and don't have quite as much catching up to do as some of us; many of us have had untreated apnea our whole lives and are of a slightly more advanced age, lol...once you get this therapy going well for you, you've got your whole life ahead of you to feel better and better...it's not always easy, but just try to focus on the positive and think of all the damage OSA hasn't had time to do yet

best of luck, and welcome to the board
sharon1965

[JeffH]

Might try having a grateful attitude about all this. At your age and weight getting a machine might make a HUGE difference in the rest of your probably longer life.

Getting better sleep should help you with at the very least stopping weight gain and possibly the beginning of weight loss.

Keep trying mask until you find one that works for you. I'm a fan of nasal pillows myself.


Good luck and welcome to the forum.


JeffH

[betty303]

Welcome to the board Willie. You can find lots of help here to get you through frustrations, mask tweaks, understanding your equipment, and suggestions to help in all kinds of areas.

The beginning, for most people, can be frustrating to the point of thinking - no way. I will just quit! I was at that point when I got connected with a person (Catnapper) who was very supportive and told me about this board. Between Catnapper keeping my chin up and all the wealth of information here - I am still hanging in there 1 year and 5 days later. I credit the help here with that!!

Now I sleep most nights 6-8 hrs and have got my apneas and hypopneas down into the 0.5-2.0 range. And I am still searching for a better mask, still learning how to breathe better with my machine, still understanding more and more each day about how to manage this condition. It DOES get better.

Don't hesitate to ask for whatever help you need.

[Perchancetodream]

Willie, don't worry about sounding evil, you sound like the rest of us did when we started, just without punctuation.

It does get better, and finding and fitting the right mask will help a lot.

If you are interested, there is a lot of information to be had in the Our Collective Wisdom Section (Yellow Lightbulb) and the CPAP FAQ Section (Red Ball).

Please visit often to ask questions, vent your frustration and let us know how you are doing.

Susan

[KAZ]

Welcome Willie, when one has SA the sleep/O2 deprivation causes a low/nonexistent energy level. So, your body sends the message for you to eat in an attempt to get energy. I got up to 406 lbs before complete respiratory failure. After two months hospital care I came home on a walker with a trachea tube in place. Now the good news, which will be the same for you with treatment. I was diagnosed with severe SA and my pressure was 20, I was lucky in that the Ultra Mirage mask worked for me. Result is that I've lost 135 lbs and walk 5 miles each and every day. The slow,but steady weight loss continues as my energy level is high. Hang in there and accept the help from the great folks on this board. I also ask that you stop beating yourself up, you don't deserve it. You will beat this and enjoy the rest of a long life. Regards

[Perchancetodream]

Forgot to mention, but if you include your machine and mask in your profile it will show up in your posts and people might be able to provide more specific help.

Susan

[Slinky]

I agree, it would be a big help if you looked at the top of your machine and read what manufacturer and model of xPAP you are using and enter it in your profile.

Since you did get that mask comfortable one night you might still be able to make it work for you. Under the Red Ball w/the Question Mark there's a list of helpful hints. Scroll down to Mask Fitting Suggestions. Try some of them out and see if they help you get comfortable w/that mask again. Don't delay more than 30 days in asking to try another mask if you can't get this one to work for you.

And, hey, I gotta tell you, my first 30+ days on CPAP were so rough I was an absolute WITCH! I didn't even like myself. I walked around looking for a fight!! But then things started gradually improving. CPAP was no overnight miracle for me and it seldom is for the majority of xPAPpers.

[deerslayer]

Might try having a grateful attitude about all this. At your age and weight getting a machine might make a HUGE difference in the rest of your probably longer life.

Getting better sleep should help you with at the very least stopping weight gain and possibly the beginning of weight loss.

Keep trying mask until you find one that works for you. I'm a fan of nasal pillows myself.


Good luck and welcome to the forum.


JeffH_______________

CPAPopedia Keywords Contained In This Post (Click For Definition): Nasal Pillows

DITTO ! i hate that freakin gel mask!!! gave me a below the nose blister -Oops, sorry if i sounded evil hang in there cuz

[williexwhip]

i put up all the info. the mask seems to be working, i can get it on properly without any major leaks.

[RosemaryB]

Others have said it, but don't worry about sounding evil. It's very hard at first, and for a while, to get everything working right. The cpap/medical system isn't doing the job they should, and that's for sure. (With some exceptions). But we are doing that job on this board and will be glad to help. Being frustrated is normal. But the good news is that this can radically change your life. While the change is slow, it's definitely worth it to do all the steps and to get the help you need.

Welcome!