first time poster long time victim of apnea

coonface · Post by **coonface** » Sat Jan 05, 2008 9:05 am

I have had apnea symptoms since I was 9 years old, I have had apnea symptoms when I was overweight thin and then overweight again. I am now 27, and the problem is I have just started cpap therapy. Too say ive had bad luck with doctors is an understatement, and to make matters worse I just stopped going to the doctors for about 8 years due to bad experiences. I have come to realize the errors that led to my state while I am to blame for my own negligence in the recent past what I did not expect was the doctors need to say that I was just another antidepressant case so take these and go to therapy.
when all the drugs they could throw at me did nothing then came the assumptions :"he's on drugs", "he's a drinker", or "he's just lazy". I decided to try and do the things that you do to prove that I was not what they thought, so in high school I became a runner and became thin, but youthful energy while plentiful is not without limit, so in turn my classwork suffered do to the fact that I couldn't keep awake in class. I left high school early to pursue a bunch of dead end jobs while at this time I started avoiding the doctors. two years ago I started a good business and things seemed to be looking better, but after about a year of normal business my body basically just crashed. I decided it was time to figure out what was really wrong with me so I went back to the doctor, and being a new doctor and I was now fat he said try a sleep study. I had never considered that I had apnea buy I knew what it was because my grandfather underwent three surgeries to rid himself of it. The day of the sleep study I went to the hospital to pick up the little monitor device that I was supposed to sleep with , the nurse told me sleep with it tonight, bring it back in the morning and we will get back to you in about a week. I used the monitor then dropped it off in the morning, thirty minuets later I received a call informing me that I had bad apnea, so they scheduled me for a follow up test in one month. after two month's I finally had a prescription for a cpap but my VERY expensive insurgence did not cover it, which led me to cpap.com and to my first night of what seems like decent sleep.

I'm sorry if this turned out like venting but it was something I had to share.
I just got my cpap yesterday so Im looking froward to what it can do for me, im glad there is such a large community of people who went though the same thing.

Suz-E-Q · Post by **Suz-E-Q** » Sat Jan 05, 2008 9:18 am

Welcome to the forum.

As you clearly already know there is a great group of folks here that can help with just about anything. Good luck with CPAP, it has changed my life.

Suzanne

jimbassett · Post by **jimbassett** » Sat Jan 05, 2008 10:39 am

Coonface you lucked out and got a very good machine. I hope you will learn to use it to your advantage as you experience the benefits of good breathing. Learn to use the software to monitor your progress. You might also post the pressure your machine is set at. Min and Max. Just because it is an auto means you can adjust it to closer what your titrated pressure was. That way the auto can track your needs a lot quicker I like a difference of about 4 cm. I was titrated at 9.5 so I use 8 min and 12 max. This has served me very well. Remember your health is in your hands so you must be able to make any changes to better yourself. Click on the yellow light bulb and read all the information that you can. It is a great help to understand these things early. Good luck to you and keep on keeping on. jim

coonface · Post by **coonface** » Sat Jan 05, 2008 11:22 am

thanks my doctor basically said I'm on my own so I borrowed money and bought a machine where I can monitor myself, Ive already been messing with the machine I was prescribed a setting of 12, so I set it at 6min 14 high and last night it stayed pretty steady at 14 so tonight ill set it at 20 max and see where it falls

mindy · Post by **mindy** » Sat Jan 05, 2008 11:32 am

Welcome, coonface!

Glad you're here and hope you find the help you need here and that you feel better before too long.

Mindy

Gerald · Post by **Gerald** » Sat Jan 05, 2008 12:47 pm

Coon.....

I can tell that you're going to do what it takes to have successful therapy. You have "taken charge" of your own treatment.....and that's what it takes to get the job done.

Let your doctor "look over your shoulder" so to speak.......and, keep good records......so that you can show your doctor what you're doing and why.

I'd suggest that you make only slight changes when you make them......rather than big jumps.

There are some big variables that you need to consider.

You may (like I do) have sinus drainage that blocks your airway in the middle of the night. Be sure that your "M" has BOTH filters installed. Use the fine white pollen filter under the coarse foam filter. I find that highly filtered air helps me a lot.

Watch out for mask leaks. Conquering this problem takes time....and some "tinker-type" skills. You may have to modify, adjust, change, or replace components that don't work just right for you. I use an Aura "nasal bellows" type mask.....and I use lanolin on my nares every night to help the seal. I've tried about (5) different masks to get to where I am now.

Another "biggie" is "mouth leakage". If your mouth is dry in the morning, you're losing pressure through your mouth. My average pressure runs about 10.2 every night.....and I've found that I have to tape my mouth shut to achieve an AHI "score" of under 1.0. I'm using 3M Blue "Delicate Release" Masking Tape (Lowe's....about $10 for 180 feet)......and it seems to work better for me than medical tape. I'm also using panty hose tights over the tape to aid the adhesive.....so that my pressure doesn't blow the tape off. (The reason for the tights is.....if I use really strong adhesive tape, it's painful to remove it in the morning. If I use delicate adhesive, it's comfortable when removing....but not quite strong enough to resist the pressure. The tights help balance between strength and comfort.)

Finally, because you've suffered for so long.....and have had such miserable help......I suggest that you add an additional tool......if you can possibly swing it. I recommend an SPO 7500 Recording Oximeter.....because, bottom line, what you're trying to do is keep your O2 levels at or above 93% every night....all night. Without a gauge (Recording Oximeter) that you can use whenever you want to do so, you're "flying blind". I believe that a Recording Oximeter is the "missing link" in the therapy for all of us.......and many others are also coming to that same conclusion.

Welcome to our little band of "mavericks". We'll do all that we can to help you.

Gerald

coonface · Post by **coonface** » Sat Jan 05, 2008 2:37 pm

thanks for the advice on the oximeter ill see what I can do to get one, as for my readings they are still all over the place I had one point where my AHI was 13.3 though the average is 3 i still have some bugs to work out with my mask, but I have added an other strap to the headgear and that seems to fix any leaks.

by the way is there any easy way to export the pages on encore to this forum??

Ill see what happens over the next few days to my data, last night was difficult cause I spent so much time before and after sleeping adjusting the mask and machine. Id love to post data and get opinions cause keiser has pretty much cut loose all self pay insured patients with apnea, so my doctor is no help whatsoever.

RAINSUX · Post by **RAINSUX** » Sat Jan 05, 2008 3:47 pm

Coonface, you're going to make it! I can sense that "can-do" attude.

Don't make too many changes at once. There are many pieces to this puzzle, and many will affect others. I recommend concentrating on the mask first. Like the speakers in a stereo system, nothing means anything if the mask isn't working. Once it is comfortable to you and not leaking, work on your pressure. It sounds like you're pretty close already. When I started changing mine I would make very small changes, then wait about a week before changing it again. Sometimes you'll have a "bad" night for no reason at all, and you don't want to change something based on this. You want to work with averages.

Keep in touch here and let us know how you're doing!

Sam

mindy · Post by **mindy** » Sat Jan 05, 2008 4:16 pm

To upload your Encore reports, you can sign up for a free account on http://www.photobucket.com. Upload to there and then you can generate it several formst. If you choose "IMG", then you can paste that output right into a message here. Or you can provide a url link to the image.

Mindy

Suz-E-Q · Post by **Suz-E-Q** » Sat Jan 05, 2008 6:34 pm

Mr. Face,
Where do you live that you are completely on your own? Are there no Pulmonary or Allergy docs around you? It is interesting that he said you are on your own.

RosemaryB · Post by **RosemaryB** » Sat Jan 05, 2008 7:01 pm

Welcome!

You clearly did your homework on what you needed and that you need to work out effective treatment for yourself. Stick around and ask questions, and you will likely get better treatment than 99% of the doctors would give you anyway.

Although your doctor said that you were on your own, I'm wondering about the sleep study. Did you get a sleep study in a sleep lab or just the take home device? In any case, you should get the complete records of your sleep study. If it was in a lab, this would include the complete titration study.

These studies have valuable information that can come in handy later. Don't just settle for the doctor's report but rather get the one with all the graphs and charts. By law, whoever did the sleep studies has to give them to you. Make copies of them and keep them in a safe place. Also keep a copy of your prescription with them.

_________________

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

coonface · Post by **coonface** » Sat Jan 05, 2008 8:41 pm

its not the where that is the problem but my insurance is though kaiser and they just eliminated all durable medical supply policies on self coverage. My problem is this: after my take home sleep test my doctor prescribed me a cpap at which time a friendly customer service rep called me up and said I have been denied for the cpap because I'm not covered, so I went back to my doctor and he said that the only way I can get a cpap is to buy one but they wont support it cause its not theirs, so I asked for surgery at which the doctor said in a round about way that the only reason that I have apnea is I'm overweight so its out of the question, as he totally ignored my 3 inch file with my medical history at which time he told me there was nothing more he could do for me(and this is my third doctor). It seems that kaiser in California has radically changed its policies, and as a result self paying apnea patients are totally out of luck. I looked into hiring a private doctor but it was just cheaper to buy the really expensive monitoring cpap and do things myself.

rwalther · Post by **rwalther** » Sat Jan 05, 2008 8:51 pm

I've been blessed with a great career and the assets to simply do my research, and buy what seemed like the best solution.

I told my doctor I wanted to buy a machine on CPAP.com, and that I needed a prescription. He asked me a few questions, and simply wrote me a prescription for an Auto-Adjusting CPAP, which I used to buy my stuff a week ago.

Since then, I've had the best sleep of my life. No sleep study, no wrestling with doctors, no hassles with insurance. I sent in a claim, and if they pay, they pay. If they don't, they don't.

Like I said ... I'm very blessed to have the means to not really care.

I just know two things ...

(1) I've slept better the last six nights than I have in the last six years

(2) The more I hear about the medical nightmares of others, the more I'm glad my doctor simply scribbled a prescription that allowed me to solve this on my own.

I feel for those of you wrestling with the burocracy of either modern medicine, or health insurance.

It must be a nightmare ... without the REM sleep to go along with it.

RosemaryB · Post by **RosemaryB** » Sat Jan 05, 2008 9:08 pm

[quote="coonface"]its not the where that is the problem but my insurance is though kaiser and they just eliminated all durable medical supply policies on self coverage. My problem is this: after my take home sleep test my doctor prescribed me a cpap at which time a friendly customer service rep called me up and said I have been denied for the cpap because I'm not covered, so I went back to my doctor and he said that the only way I can get a cpap is to buy one but they wont support it cause its not theirs, so I asked for surgery at which the doctor said in a round about way that the only reason that I have apnea is I'm overweight so its out of the question, as he totally ignored my 3 inch file with my medical history at which time he told me there was nothing more he could do for me(and this is my third doctor). It seems that kaiser in California has radically changed its policies, and as a result self paying apnea patients are totally out of luck. I looked into hiring a private doctor but it was just cheaper to buy the really expensive monitoring cpap and do things myself.

RosemaryB · Post by **RosemaryB** » Sat Jan 05, 2008 9:13 pm

rwalther wrote:
I feel for those of you wrestling with the burocracy of either modern medicine, or health insurance.

It must be a nightmare ... without the REM sleep to go along with it.

That's exactly what it feels like. If I had it to do over again, I'd deal only with cpap.com or billmyinsurance.com. The DME I deal with has a very poor delivery system. They continually make mistakes. They are the best DME locally.