how do I adjust?

sleepypirate555 · Post by **sleepypirate555** » Mon Jul 24, 2006 5:22 pm

I am 21 yrs old, 5 years ago my energy level tanked. I went to 8 different docs all of whom told me that I was just lazy, or needed to lose some weight (in that first year I went from a competitive swimmer at 150lbs to a tired girl at 210lbs). Just try harder. My therapist (I'm bipolar as well, luck me lol) realized something was wrong and pressed my current doc to get me into a sleep study clinic (which I had never even heard of). They found moderate sleep apnea but didn't tell me more specifics. Did a second sleep wtudy (with the cpap) got a cpap, now what? I'm having trouble falling asleep w/it. My regular doc gave me xanax to help me relax and sleep (I tend to have panic attacks). Has anyone else had a ton of trouble adjusting?

Hoseboy · Post by **Hoseboy** » Mon Jul 24, 2006 6:12 pm

hey sleepy! welcome to the forum. this is my first post too, so i'm with ya. to answer your question, yeah, i'm having some trouble. i was actually just searching the forums for some help. i got my machine about 2 weeks ago and i'm still having some trouble. at first i felt like i was going to get better, now i feel like i did before my cpap. i've had trouble with my sleep since my freshman year in high school (i'm 29). quite a while now. i'm just exhausted and lethargic all the time. all through high school, 2 different colleges, and now work, plus fighting sleep everytime i drive or go to church. i had the roughest night last night that i've had since i've got my machine! i'm still using a loaner until my help from the state comes through, so i dont know what my readings are, but i do know i dont feel any better than i did before. wish i could help! maybe we'll get a reply by someone other than noobs like us!!

tim

Goofproof · Post by **Goofproof** » Mon Jul 24, 2006 6:14 pm

Many, one of then answers is to accept you are going to do this right, when you do, you will succeed. Also read here, and ask questions, someone can usually point you the right way. Jim

idahogal · Post by **idahogal** » Mon Jul 24, 2006 7:09 pm

Hello and welcome. You will find great info and advice from this board. The people here are awesome. I have been on cpap since Feb. I can tell you that I had a period of about a week where I felt like I was getting worse and not better. It takes a while to pay back your "sleep debt". I can tell you that as long as your are managing any issues like leaks and keep coming back here to get a wealth of infomation it will get better. You may have periods of ups and downs but for the most part it will be more up than down.

birdshell · Post by **birdshell** » Mon Jul 24, 2006 10:06 pm

Congratulations to both of you on finding this forum. It is a wealth of information and support.

Fortunately, I was so eager to sleep that I did not have too much trouble adjusting. The CPAP therapy has helped:

My depression
My desire to eat and overeat
My sleeping time (down to an average of 9 hours per day from 12-14 hours per day)

It has made a subtle but significant difference to me, and I can only hope that the improvements may improve after more than my current 3 months of therapy.

Stick with it; there are so many options and home-grown fixes here that it should be possible to find SOMETHING that will work for you.

linda b · Post by **linda b** » Mon Jul 24, 2006 10:23 pm

I, too, am fairly new (two and a half months) to the wonderful world of hoseheads, but have had a very positive experience so far. I spent allot of time reading this forum before ordering my equipment. A couple of things I've learned that can really affect the quality of your treatment are mouth breathing, mask air leaks, and the right air pressure. Don't give up. If you are not losing air through your mouth or leaks around your mask, you should eventually get used to the feeling of wearing this awkward thing on your face and be able to get to sleep in a normal amount of time.

Spend some time researching posts on this forum and you will receive an encyclopedia's worth of information about sleep apnea, machines, masks, DMEs, sleep doctors, sleep clinics, sleep studies -- just about anything related you could possible need to know. There are a bunch of truly wonderful, smart people on this forum.

rested gal · Post by **rested gal** » Tue Jul 25, 2006 2:50 am

Good advice by all. I'd add that I think finding a mask that suits you is the real key to being able to doing this kind of treatment comfortably enough to be able to actually sleep.

That, and controlling mouth air leaks, if those are happening.

Mask, mask, mask.... gotta have a mask that doesn't cause sleep disruptions in and of itself.

My personal preference is for one of these:

Aeiomed "Headrest" (formerly called the Aura) or Respironics ComfortLite 2. Either of those let me sleep on my side with the side of my face comfortably flat on the pillow -- unlike most masks that have a rim or some part that digs into the face one way or another if you're a side-sleeper.

A soft, stretchy homemade strap, worn like a sweatband around the head but down low over the nasal pillows area of the mask, keeps everything from shifting/leaking.

It's one thing to say "keep trying" with the equipment you were given to start with. But it's easier to keep trying when you find the right mask for you (not necessarily the one that suits me, or anyone else.)

I'm a big believer in having an autopap machine AND the software, if you want to really take as much control as possible of your own treatment. I like the Respironics REMstar Auto with C-flex, or the new smaller Respironics M Auto with C-flex, or the Puritan Bennett 420E autopap.

Check out these links to discussions that can help get some of the basic pieces of the treatment puzzle in place:

LINKS to MASKS - nasal mask, nasal pillows, nasal prongs

LINKS to Hose hangers and methods of managing the air hose

Links to: Mouth leaks - Air Leaks - Tape - DIY Guard

inacpapfog · Post by **inacpapfog** » Tue Jul 25, 2006 5:13 am

Advice so far is right on target. IMHO!

I just want to add that though you may not be able to purchase some of the recommended products you'll read about here,as immediately as you would like, due to insurance/money issues, you can make the most of what you are able to control! The key is to stay informed!
1. Voice your wants/needs to your doctor in a proactive manner.
This may include calling repeatedly, sitting in his office to wait for
copies of your sleep study and cpap prescription. Also, documenting
your statements (specifics and dates) is always helpful as it
conveys determination!
2. If you are working with a local DME, learn the lingo!
By reading here that aspect will naturally fall into place! You will be
able to make informed choices about your masks and machines
rather than simply take what the DME gives you. You know
your needs better than anyone else so why not base your
selections on your needs/wants rather than on the DME's
stocked equipment?
3. Know your rights when it comes to your insurance!
Ask for copies of specific policy protocol and limits concerning
cpap therapy. Finding out that my insurance pays the DME one
huge price to cover personal attention (via office and/or home visits)
machines, masks, chinstraps, filters, hoses, etc... empowered
me to remain diligent in going back to the DME each time
I had a problem with machine issues, replacement or needing
a more suitable mask. Voicing my insurance specifics to the DME
certainly convinced them that I would not settle for less than what I
needed! Otherwise, the DME would just keep telling me to
"just keep trying, everyone has problems" Granted, one should
be willing to adapt and modify to a reasonable degree, but not to the
point of of repeated discomfort and compromised therapy!

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME, Prescription

Hoseboy · Post by **Hoseboy** » Tue Jul 25, 2006 6:53 am

RestedGal, thx for the encouragement!! i actually DO have a comfortlite2, or what i've come to call the Comfort LEAK 2!! i've had so much trouble with pillow leaks!! i read your post about using pantyhose around the center of the face/head to hold the mask in place (the one you posted a pic with), so i tried it with a cloth belt from an old robe.... IT WORKED!! i couldn't believe how much better i feel this morning than i did yesterday!! i also found another little tidbit of joy online last night. my insurance, the dme, and a workforce department here in texas are all working together to get my sleep study deductible and a permanent machine paid for by the state, which is a HUGE blessing (hallelujah!!), but as governmental inquiries go, its taking some time. In the meantime, i'm using a puritan bennett goodknight 420g as a loaner, which in all truth, is a good machine in its own right. its just not sophisticated. however, it has a secret menu that allows you to make changes. otherwise, you are locked out without being able to tweak pressures and whatnot. well, last night online i found the secret...
tweaked my pressure up to 8. it was only 7 before, which surprised me, since i've had so many problems being tired and waking up gasping for air, but thats what the sleep study said i needed. bumped it up to 8 and it worked better. it probably has to do with my prevalent nasal congestion. its always been a problem.
thanks for all the help everyone provides on this board. its great to know i'm not alone in this!!

krousseau · Post by **krousseau** » Tue Jul 25, 2006 9:36 am

You are trying to change years of sleep habits-it takes some time to make new habits that work for you.It seems like a balancing act between experimenting with things to get what is right for you without changing so often you can't settle in and form new habits.

sleepypirate555 · Post by **sleepypirate555** » Tue Jul 25, 2006 4:02 pm

I think this process is just terribly frustrating. The sleep clinic hasn't told me anything! I had a sleep study, the doc called me ,"you have sleep apnea, schedule another sleep study". I did, was told to wait. Apria homecare called me, handed me a cpap and a manual, I picked a mask randomly (I toooootally got lucky), and went home. And couldn't sleep. I was told my "number" was 13. That's pretty much all I know. My regular doc didn't even have the records from the sleep clinic (I called today and they are supposed to be faxing them). What's a DME? I feel so lost! How did ya'll learn so much more info? Ack! PS: thanx for all ur help guys! Even tho my sleep sux, I feel much better about my future

Snoozing Gonzo · Post by **Snoozing Gonzo** » Tue Jul 25, 2006 4:21 pm

I've been on the hose since this past January. Nobody knows this stuff coming in. Few get much information from their Dr.s, sleep clinicians, or Durable Medical Equipment provider. Most start as confused and frustrated as you are right now.

Most of the little I know came from folks on this and other boards. Use the CPAPopedia on this site, use the search functions and sticky notes here and on other boards. I have found that education and background material along with the forums at apneasupport.org to be helpful. This board often provides the most in-depth information on a wide variety of topics as many very experienced and knowledgeable people frequent it.

So, it’s up to you to ask, search, and learn. I think you'll find that after several weeks on CPAP that interest, calmness, and curiosity will start coming back. In return, you should follow the example of the long time members on the boards and try to help the next wave of new folks by sharing what you learn.

Guest · Post by **Guest** » Tue Jul 25, 2006 4:24 pm

sleepypirate555 wrote:I think this process is just terribly frustrating. The sleep clinic hasn't told me anything! I had a sleep study, the doc called me ,"you have sleep apnea, schedule another sleep study". I did, was told to wait. Apria homecare called me, handed me a cpap and a manual, I picked a mask randomly (I toooootally got lucky), and went home. And couldn't sleep. I was told my "number" was 13. That's pretty much all I know. My regular doc didn't even have the records from the sleep clinic (I called today and they are supposed to be faxing them). What's a DME? I feel so lost! How did ya'll learn so much more info? Ack! PS: thanx for all ur help guys! Even tho my sleep sux, I feel much better about my future

_________________

DME stands for "Durable Medical Equipment" Provider. Your 13 stands for I think kilograms per square inch?? (somebody correct me, cuz i dont think that's completely right). Basically its the pressure the air is coming through the hose at. And to answer your question about how any of us know so much? Reading the forums! We all glean loads of knowledge from others who have years of experience with cpap. RestedGal for one has a WEALTH of information available, including some reviews and mask tweaks. Thanks Gal!!

Hoseboy · Post by **Hoseboy** » Tue Jul 25, 2006 4:25 pm

Anonymous wrote:
sleepypirate555 wrote:I think this process is just terribly frustrating. The sleep clinic hasn't told me anything! I had a sleep study, the doc called me ,"you have sleep apnea, schedule another sleep study". I did, was told to wait. Apria homecare called me, handed me a cpap and a manual, I picked a mask randomly (I toooootally got lucky), and went home. And couldn't sleep. I was told my "number" was 13. That's pretty much all I know. My regular doc didn't even have the records from the sleep clinic (I called today and they are supposed to be faxing them). What's a DME? I feel so lost! How did ya'll learn so much more info? Ack! PS: thanx for all ur help guys! Even tho my sleep sux, I feel much better about my future

_________________

DME stands for "Durable Medical Equipment" Provider. Your 13 stands for I think kilograms per square inch?? (somebody correct me, cuz i dont think that's completely right). Basically its the pressure the air is coming through the hose at. And to answer your question about how any of us know so much? Reading the forums! We all glean loads of knowledge from others who have years of experience with cpap. RestedGal for one has a WEALTH of information available, including some reviews and mask tweaks. Thanks Gal!!

_________________

sorry, forgot to sign in.

Snoozing Gonzo · Post by **Snoozing Gonzo** » Tue Jul 25, 2006 4:37 pm

Try this link viewtopic.php?t=1655 or go to the CPAPopedia and look up " manometer ".

how do I adjust?

how do I adjust?

trouble sleeping

Welcome

better last night

ugh

Re: ugh

Re: ugh

Mask

Mask

Additional Comments: cpap pressure: 12

Mask