not diagnosed yet, many ? brand new here

[rt3773]

First, I have not been diagnosed with OSA but highly suspect that I have this problem. I am in my 30's, busy working mother, and about 50 lbs over wt. I get very little exercise due to my hectic schedule. I snoor, I stay exhausted, I wake many times during the night, and my husband feels I stop breathing.
What all can I do to help myself with being under a dr. care? What can I try without having a sleep study done? I know I NEED to loose wt, but knowing and doing it are 2 different things. Honestly, I am not sure the will power is there right now. OK, be honest, if I dont plan to loose the weight, what are my options.
Like I said I am totally new at this, I am just tired of being SOOOOO tired all of the time.

[LDuyer]

Hi!

Welcome to the forum!

Get tested!!

Sounds like there's a good chance you have sleep apnea, especially given what your husband has described of your breathing during sleep. And losing weight wil not, most likely will not change the situation necessarily. Although most people with sleep apnea are overweight, a few are not, and there is no guarantee that the SA will disappear with weight. No point in even trying, at least not until you've been tested. You definitely need to be tested. It's important, regardless how good or bad your doctor is. The results of the test give the necessary information the doctors need to prescribe the right treatment for you. At the very least, the test will tell you whether or not you have this and how severe or mild it is.

I don't know about you or others, but I found that even when I was being good (before being diagnosed), the pounds would pour on, seemingly unexplained. Of course I was bad, and I wasn't exercising (so exhausted!) but the gain just didn't seem logical. The treatment will actually help you to lose the weight, or at least have the additional energy to do something about it with less effort than it would have been before treatment.

Where are you located? And is your doctor a general practitioner? You might need to be referred to a specialist, perhaps a Pulminory doctor. Or your doctor might be able to schedule the sleep test directly for you.

I urge you to follow up. Other symptoms can be high blood pressure, nodding off at work, or even much worse, nodding off behind the wheel of a car. So, you will find people here will urge you to do something. When you have the test, be sure to ask for a copy of the report. It is your right. Also, some of the numbers may be confusing, and people here can help you undestand them if you need it.

Keep in touch!

Linda

[Guest]

I haven't posted in a while, but I'm in my 3 or 4th month now on a cpap machine. I was a little leary of people saying that they lost weight just by using the cpap.

BUT..... 6 pounds lighter

I'm living proof... and that was even during the holidays, visiting out of town, eating all those goodies for Xmas, etc. I was fully expecting the new year to show my "bad" habits.

BUT.... 6 pounds lighter

and this is just additional proof... I had a flare of my RA just before Xmas. I had worked very hard to get myself down from 25 mg of prednisone a day to 4 mg of prednisone a day over the past year. I thought for sure I'd notice some weight loss due to that alone. Well, when I went to the Dr. with the flare, I had lost 3 pounds! I thought wow... I haven't done anything - exercise or diet... but I mostly attributed it to the lower dose of the steroid.

To get the "flare" in check, we had to ramp up my prednisone again to 10 mg. a day and I've been on that since 12/15 or so. So the weight loss CAN'T be due to the lower dosage. At my checkup in January, the RA Dr. said - you've lost 5 pounds. Are you dieting?

BUT.... 6 pounds lighter

NOPE... I'm SLEEPING!!!! YEA!! And as of last week, I was down one more pound. A total of 6 pounds since I began using the cpap.

NO other changes in my diet or exercise. I WILL say that I feel like I have more energy TOO. Still a little tired in the morning, but once I'm up, I don't feel like I want to lay down again in a few hours! I don't even think about taking a nap which was the norm before.

I've fiddled around with several machines, but have settled on the Remstar Pro II w/C-Flex. I use the breeze with the dreamseal mostly. I still have leaks, but not as often for some reason, (maybe I'm learning how to sleep on my side without disturbing the mask). Also my Dr. prescribed a full face mask for me to try to see if it helped with the leaks. It's a Respironics, and it's "OK", but it seems more work to put on and off than my simple Breeze.

Anyway... I've rambled, but wanted to check in and let people know that I'm definetly seeing a change. I read that a possible loss of 10% of body weight could be attributable to just sleeping and the correct amount of Cortisol being released. (What my Dr. told me in layman's terms was "There's a chemical that's released when you reach a certain level of sleep, and when you're not sleeping, you're not getting this 'chemical' which
tells your body you're "full", so you eat more, and your metabolism is slower.") I guess he didn't think I could understand "big words" like Corticosteroids, etc. Oh well... The message can't be much clearer to me since I'm losing weight. Let's see if I can reach the 10% mark without any other changes in lifestyle.

So my advice to anyone who thinks they have apnea... GET TESTED - GET ON A MACHINE. It's so worth it.

Connie

[rifenbc]

I thought I had logged in before my above post. I'm rifenbc
Connie

[rested gal]

rt3773, sounds like you're on the same path I took over a year ago. Diagnosing yourself as having OSA and planning to treat yourself - without being under a doctor's care. That's what I did. No doctor's supervision. No sleep study.

Despite not being overweight, I have snored terribly all my life.

In the fall of 2003, I "Googled" for info about how to stop snoring. Information about sleep apnea kept jumping out at me. The more I read about snoring/sleep apnea, the more I realized, "That's what I've got."

Although I never had felt the extreme fatigue or exhaustion that others report (could function fine) definite symptoms of at least "mild" OSA were there:

Always got drowsy driving on trips longer than an hour - often had to pull over for a nap. )Almost dozed off a few times - very dangerous!)

Liked to take a nap in the afternoon, but always felt groggy after the nap - never really refreshed by naps.

Was slow getting started in the mornings, no matter how many hours of sleep. Took about an hour of being up and about to feel ok. Always wondered how "morning people" were eager to get up! The "snooze" button was my friend.

Occasionally feel asleep in the daytime while reading or watching tv. Caught myself starting to doze off once or twice while actually sitting at a card table playing bridge with other ladies.

Snoring, snoring, snoring - very loudly, all my life. I never heard it myself, but certainly heard a lot of comments about it. I thought it was just an embarrassing annoyance - had no idea what a strong symptom of OSA snoring can be, or what untreated sleep apnea can do to every organ in the body.

I even did a little self test - while sitting up, wide awake, if I deliberately let my throat relax as much as possible, my throat closes off completely. No air can get through. No wonder I always snored so badly!

So... having decided it was very likely I had Obstructive Sleep Apnea, I immersed myself in the archives of the apnea message boards to learn all I could about what people who have it do about it. I have no insurance, so I wanted to see if there was a way to treat it myself without the expense of a sleep study, doctor's bills, etc.

On the message boards, I read about "CPAP" - ahah! I started asking all my friends, "Do you know anyone who is using a cpap machine for sleep apnea?" Bingo, one of my good friends in town said her husband had been using one for years. He had had several machines and just happened to have a previous one that he wasn't using. I borrowed that old straight cpap (no idea what the pressure was) and an old gel mask he had.

Despite no humidifier, leaky mask, a loud machine, and all the strangeness of trying to sleep with such a set-up, and waking up a bunch of times during the night, I felt the best I'd ever felt in my life upon getting up the next morning. Like a "morning person". I couldn't believe the difference.
I used that old borrowed cpap and uncomfortable mask for the next two months - religiously, every night, leaks and all. I felt great, no longer got the least bit sleepy driving, no longer needed naps, felt like a morning person every morning.

When the mask's gel finally started coming off in chunks, it was time to get my own equipment. All that time I had been been reading everything I could find on the message boards about different brands/types of machines and masks. I had determined I needed an autopap and the software to see how my treatment was going and make tweaks when needed. But here was the dilemma....how was I going to get a doctor's prescription without jumping through all kinds of doctor office visit hoops and without going through a several thousand dollar sleep study to tell me what I already knew - that I had OSA?

Without insurance I wanted to spend my money on the best equipment I could get. I already knew from reading the message boards that I might have to buy quite a few masks before finding the best one for me.

There was an old retired family doctor in town. My parents and grandparents had always gone to him. I'd been healthy all my life, so wasn't a patient of his; but it being a small town, he knew me through the family. I called him up out of the blue, explained what I wanted to do and asked him if he'd write me a prescription for an "autopap". He said, "Sure."

I faxed the Rx to an online cpap supply store, ordered everything I thought I might need...and have never looked back. I've not spent one sleeping moment since the first night with the old borrowed cpap, without turning on the machine. It's been all good, every step of the way. Had the old doctor not been willing to give me the Rx, my next step was going to be to ask my vet for it - no kidding! - and I'm sure he would have written it. That's how determined I was to get the machine I knew I needed.

If I had had the extreme fatigue that others have, or if I had had other health problems, I'd have certainly gone the full "doctor/sleep study" way. But with it as "mild" as I seemed to have it, I felt safe in diagnosing and treating it myself. It's worked out great for me. But an autopap and the software is absolutely essential, if you're going to "do it yourself." What I chose to do is a very unconventional way to go about it, but it has worked perfectly for me....thanks to advice from wonderful people on the message boards, like this board and the one at talkaboutsleep.

Long story longer, rt3773 - if you have insurance get yourself in for a sleep study. If you don't, then you might want to do something about it yourself, as I did. The only hard part will be finding a doctor who is willing to simply give you a prescription with one word written on it: autopap

The doctor doesn't even have to state a pressure or pressure range on the prescription since autopaps are already preset for a range of 4 - 20 cm H20 (which you can change to the range you need based on looking at your nightly data through the software.)

With just that one word on an Rx, you can buy everything you need to treat OSA yourself from online stores. The machine itself is the only thing that requires a prescription when buying online. The other things like masks, humidifier, software, etc., don't need a prescription at all.

The machine I use is the Respironics REMstar Auto with C-Flex, heated humidifier, and Encore Pro software/card reader. I got my machine from cpap.com.

The masks that suit me best are the Breeze/nasal pillows (I use this one almost every night), the Activa (nasal mask, covers the nose - just for a change on some nights), and the ResMed Ultra Mirage FF (full face mask for any stuffy-nose night when I want to breathe through my mouth.) Masks are a very individual preference though, so be prepared to go through several before you find the one you like.

Good luck!

My edit: Two years after successfully using autopap, I had an opportunity to get PSG sleep study:

Nov 19, 2005 subject: First Sleep Study...finally! - rested gal
sleepydave on that board goes by the nicknames deltadave, StillAnotherGuest, Muffy, and NotMuffy here on cpaptalk. Many thanks to him!

The edits are to update my current (July 2011) machine and mask info:
S8 ResMed VPAP Auto 25 (not 'cause I "need" bilevel...I just like the comfort of using a bilevel machine.)
S9 ResMed Autoset with EPR (equally comfy to use and equally effective treatment -- sometimes I use one machine, sometimes the other.)
Aeiomed "Headrest" nasal pillows mask -- my favorite mask since March 2005.
Fisher & Paykel HC 150 heated humidifier -- my favorite humidifier for many, many years -- works great with any brand of machine.

[Poisson]

Dear Rested Gal,

In several ways our situtations are similar, but there are several differences. I did go through a sleep study (but I can certainly understand why you would prefer to avoid the expense especially without health insurance). I just wanted to mention several unanticipated benefits that I received from the sleep study.

First, if I had not gone through the sleep study, I would also "believe" that, at the worst, I had a "mild" case of sleep apnea/hypopnea. I'm also not particularly overweight, and I don't even snore much. Without a sleep study, it would have been quite easy for me to convince myself that I didn't need a cpap, especially after making a few changes like sleeping on my side and so forth. I was pretty much in denial about even having sleep apnea/hypopnea. Much to my surprise, my sleep apnea/hypopnea was classified as severe. Because of that diagnosis, I am far more likely to use my autopap. Granted you use yours even though you suspect your case is mild---I'm not sure I would.

BTW, even the data from the autopap might lead me to believe I have a mild case. On Monday night, my autopap was at the minimum pressure setting of 4, 97% of the night, and creeped up to 5 during the other 3% of the night with no apneas and only a couple hypopneas.

Second, because of the sleep study, I can pretty much rule out of having a bunch of other sleeping disorders.

Third, I used to spend a lot of time in bed thinking while being unable to sleep. Every once in a while, I'd look up to see what time it is, and it would be 20 or 40 minutes later than the last time I looked. I was worried at the sleep study that they wouldn't be getting any data 'cuz it felt the same way (except I didn't have a clock to glance at). In the middle of the night, the sleep technician came in to put me on a cpap for the second half. I told him I was awake and said that I hadn't been able to sleep. He said that I had been sleeping. Now, I believe that I've been quite good at falling asleep, I just kept waking up due to the sleep apnea/hypopnea. So when I was looking at the clock 20 or 40 minutes later, I had fallen asleep in between without realizing it. Now, if I happen to notice that I'm awake at night while turning over or something, I have no worries about falling back asleep.

Third, similarly, the data said I slept while wearing the cpap. It would have been easy for me to convince myself that I wasn't sleeping because of the cumbersome mask and hose, but I was sleeping. Based on that, I figured I'd have no trouble getting used to using a cpap machine.

So even though it appears that little would change in your behavior if you were to have a sleep study (even if your case were also classified as severe), my behavior changed a lot, and for the better I believe, because of my sleep study.

Lastly, I just want to thank you for all the great advice and help that you have given me through your posts to this forum.

--Bob

rt3773, sounds like you're on the same path I took over a year ago. Diagnosing yourself as having OSA and planning to treat yourself - without being under a doctor's care. That's what I did. No doctor's supervision. No sleep study.

Despite not being overweight, I have snored terribly all my life.

<snip>
If I had had the extreme fatigue that others have, or if I had had other health problems, I'd have certainly gone the full "doctor/sleep study" way. But with it as "mild" as I seemed to have it, I felt safe in diagnosing and treating it myself. It's worked out great for me. <snip>
Good luck!

[unclebob]

Hi Rested Gal,

Just wanted to let you know how very much I appreciated your post on this thread.

Been following your posts for some time and this really portrayed the whole of your actions to resolve treatment of your Apnea condition. I wish all undiagnosed Apniacs would read this to see the significance of their condition and take some step towards healing it.

Most people should not have to follow the course of action you took as proper medical diagnoses, I believe, is a better alternative .

In any event, it's obvious you have a gift for written communication (probably already some kind of a professional writer) so I think you have another challenge facing you. Get the word out! Posting here is not enough! I'm sure Reader's Digest would pay you for this post alone. Go ahead, make a few bucks and submit your observations on Apnea to publications who can educate the uninformed masses (doctors) and the public in general.

Off topic - my serious questions to you are:

- is a peek really worth a good finesse?
- do you play a short club?
- ever lead away from kings?
- how many points do you really have to open?
- what is the foolproof way to always know for sure who deals next?

Thanks again!

[rested gal]

LOL, Unclebob,

- is a peek really worth a good finesse?
So I've heard, but I'd never do it...the "peek", that is.
As for the other - "8 ever, 9 never".

- do you play a short club?
Yes, and it's ok with me if everyone, including my partner, passes it and leaves me in 1C... if my partner doesn't have at least 5 points.

- ever lead away from kings?
To my everlasting chagrin, I have done so, and probably still will in the future - despite telling myself, "Never again!"

- how many points do you really have to open?
Depends.
I kinda like the "rule of 20" when I'm looking at 12 points...and wondering....

- what is the foolproof way to always know for sure who deals next?
hmmm..dunno. I play duplicate so the word "dealer" is printed there on the board. A few opening bids out of turn have about convinced me to at least glance at the word! In party bridge, I think the next shuffled deck is placed - ummm, to left or right of next dealer? - can't remember. So many years of untreated OSA does a number on the old memory cells! I think I'd just ask, "Who's the dealer?" LOL

[hton]

S8 ResMed VPAP Auto 25 (not 'cause I "need" bilevel...I just like the comfort of using a bilevel machine.)
S9 ResMed Autoset with EPR (equally comfy to use and equally effective treatment -- sometimes I use one machine, sometimes the other.)

An interesting story to read, RestedGal, thank you for taking the time to post this

Might I ask: what makes you use 2 different machines? Which for what? How do you determine at night which machine you need?

[Julie]

hton - you've pulled up a 2005 thread, and lots of that info has changed since then (including what RG has since done). It might be better to start a new thread.

[Pugsy]

hton...I (like Rested Gal) change to bipap on my own. I do have a fairly recent thread about my experiences that might answer some of your questions. You can see it here if you like and if you have further questions feel free to ask.
viewtopic/t71442/viewtopic.php?f=1&t=71 ... e#p656179(

Rested Gal is taking some time off from the forum (busy at home with stuff) and may not see your post for a while.

[Uncle_Bob]

Long story longer, rt3773 - if you have insurance get yourself in for a sleep study. If you don't, then you might want to do something about it yourself, as I did. The only hard part will be finding a doctor who is willing to simply give you a prescription with one word written on it: autopap

It is my understanding that you can get a APAP with an Rx for CPAP. You can at cpap.com.