Lori's 3000th, is 4000 soon to follow?

do you get paid for the time you are home on your computer doing the transcribeing? does it pay well?

Anonymous wrote:do you get paid for the time you are home on your computer doing the transcribeing? does it pay well?

You actually don't get paid until you turn in the transcript and it's paid by the page, with a small appearance fee if you're on the job for the AM seesion and/or the PM session (two if you're there for both). So all the work you do leads up to the final product for which you are paid. The problem is, you can go in one day and take 20 pages, but then go in the next and take 250. 20 is great since it takes no time on the job or to transcribe and proofread, but it doesn't pay as well as the 250 pages that takes a long time taking down the job and to do the work to get it out. Pros and cons, like with every other job.

OK Lori,

I admit I have been a working fool and have not had the time to read many posts of late, but what's with you getting off the hose? You just find the right interface, the Aura and now you are off? How is this so?

You have gained so much knowledge in such a short time, and you have a gift for helping and writing, I for ine sure hope you don't fade away

R&R,

I'm surprised you didn't get a glimpse of one of the millions of posts I left on this subject as I didn't spare anyone any details (you know me). I will send you a link that will hopefully fill you in on most of it. That way, I won't bore everyone again with this info. viewtopic.php?t=5455&highlight=upset

I won't fade away. At first I thought no one would want to hear from me anymore since I was no longer sharing the same problems, but I still am finding a lot I want to contribute. So you're all stuck with me for now.


This is a link to the conclusion, actually, after doing an overnight pulse oximetry test. Maybe this will fill you in, if you care to read it. Thanks for caring. viewtopic.php?t=5519&highlight=upset

Dang, I need to keep losing weight. I am down from 254 to 228 since June. Got a ways to go, but theres hope.

R&R,

That's great news!!! You are doing really well with the weight loss. Just keep in mind, though, that my AHI was low to start with at my study, no apnea, just 4 hypop., and I think it was my oxygen that caused them to put me on the therapy, along with being symptomatic and having 14+ PLMs per hour. I think they figured they could fix all these problem in one fell swoop by putting me on CPAP.

Now ask me if I feel great being off the machine and you won't want to hear what I have to say. No, I don't feel great. I feel okay, but not great. But remember that I wasn't feeling great to begin with in the past month or so which was the impetus to look into if the machine was causing me more harm than good. So why am I feeling this way? Who knows. I know when I first started therapy, I felt great and did for months. Then slowly I started to decline, until here I am not feeling great. I am no where near what I was pre-therapy, with no more migraines and no extreme exhaustion or fatigue, but I don't feel as great as I did when the therapy kicked in.

So who knows, maybe I'll give it a try if things don't improve and go back on. I just don't know if I should being that from all the tests I've done, I really don't rate as being a candidate for CPAP - well, at least not in the eyes of insurance companies, which may be a bit different as far as criteria goes of really needing it or being allowed to have it.

You said you lost 20 lbs Lori, I wonder if your feeling bad might be related to not eating enough and your blood sugar being too low? Can cause just the feeling you are having. Have you had a blood test recently?

Oh, I know I will never be off. Even with weight loss. I have a deviated septum which cpap helps and I have always snored, even when I was young and an athlete and very fit. Just a pipe dream. Other bthan having to lug it around and setting it up and taking it down all the time while I travel, I really don't mind it. And I feel so much better than I did a couple of years ago.

Lori, I'm so glad you stressed this, about your sleep study:

Just keep in mind, though, that my AHI was low to start with at my study, no apnea, just 4 hypop.

Really, from everything you've written about some of the low pressure tests you did at home using your machine at minimum pressure and getting extremely low AHI's (same as any normal person without OSA would get), as well as your wonderful results with the recording pulse oximeter during a night of no cpap at home, everything seems to point to a mistake on the part of the doctor in putting you on any kind of cpap machine in the first place. Or at least that's the way your saga looks to me, but I'm sure not a doctor.

If that's so, then...my gosh! What a thing for you to have been put through (mask and machine issues which can be disruptive to sleep in and of themselves!) when you never had anything that needed this particular kind of treatment at all!!

I'm an easy-going person, but it really makes me angry on your behalf, Lori, to think of your having had to go through struggling with mask issues all those months when you didn't even have OSA. You're certainly a kind person to not be furious with the doctor who caused you to go through months of trying to adapt to a treatment that you didn't even need.

If that's the case....that you really have never had OSA and shouldn't have been prescribed CPAP in the first place... then it's not a matter of your weight loss of 20 or 25 lbs that has allowed you to "get off" cpap. If you shouldn't have been on CPAP from the start, then there was nothing you had to do to "get off" it.

Weight loss is a good thing for overall health, but for people to think losing weight will give them much real chance of "getting off cpap", well, that's pretty unrealistic. Again, I'm glad you put in the reminder, Lori, that with 0 apneas and only 4 hypopneas, your sleep study did not show you to have OSA at all.

Did you ever send your sleep study reports to Dave... deltadave (sleepydave on the ASAA board) to get his take on whatever 02 desats that were noted in your study?

Thank goodness you had software and the determination to monitor and question your own treatment yourself, Lori. Thanks to your own lab-ratting (and no thanks to the doctor) you've figured out that a cpap machine was not a treatment you've ever needed at all.

There are so many variables that could have an impact on good sleep and feeling rested -- perhaps the PLMs that your study turned up are really what were always affecting your sleep, and still are? If they are worse some nights than others, that could account for some good, some not so good nights of sleep.

Did the doctor ever put you on any meds for the PLMs? If not, have you thought about pursuing the PLM angle?

At any rate, the good side, if there can be a "good side" to what you've been through, Lori, is that it at least gave you the opportunity to encourage and help so many other people so many times.

You know, Lori, I think Rested Gal's idea to see what deltadave has to say on you sleep study results is great.

We might all learn something from it.

Sleepless on LI wrote:"I am no where near what I was pre-therapy, with no more migraines and no extreme exhaustion or fatigue, but I don't feel as great as I did when the therapy kicked in. "

*Before CPAP therapy started you had extreme exhaustion, and migranes.

*Apparently during your first sleep study you had few events, but high desats.

Additionaly, you wrote:

I was diagnosed with a lot of PLM's per hour at my study (14+) and it seemed to be under control after going on therapy. I never knew I had PLMD before the PSG, by the way, but they said it was responsible for significantly fragmenting my "sleep architecture."

During therapy
*You changed your eating and physical activity habits
*Your blood pressure rose, and you were give a diuretic that made you lose a huge amount of fluid. (Are you still taking any of it?)
* You lost weight which the ENT said might help your - apparently - very mild apnea.

Despite the very low numbers you had pretty bad symptoms, which the CPAP relieved immediately. Could the low number in the first study have been a fluke? (Research shows the variability between nights is big Standard Diagnostic Test For Sleep Apnea Does Not Detect Condition In Many Patients-)
Could it have been irrelevant? Some researchers do think the Apena Hypopnea index is not the most important, or useful measure THE APNEA-HYPOPNEA INDEX USEFUL OR USELESS -


Maybe your slight overweight caused -> UARS, which caused -> desats which resulted in -> PLMs which caused -> arousals, and ->fragmented sleep architechture -> migraines and exhaustion?
Of course it would be wrong to say "the only reason for sleep apnea is overweight" - but it would be just as wrong to say "nobody get's apnea because they're overweight".

O.

RG & Ozij,
Thanks so much for that very thought out/through posts. I have spoken with Dave and he was kind enough to look at studies from both nights. He said I definitely was on it for desats and that the cpap did exactly what they wanted it to do, which was cure/eliminate everything that showed up on the study (paraphrasing-it was months ago). And Ozij may have something because somewhere along the way, someone, maybe it was Dave, told me to look into UARS.

All I know is, you can't be upset over something that helped; and it did, which is what drives me crazy whenever I think it may have been an error to put me on CPAP. I was a zombie, mild OSA or not. I would wake up just about every day with migraines and have them almost every day of my life. I would wake up feeling like I hadn't sleep, and I actually never did. Like I've written before, I was the goldfish out of her bowl, flopping back and forth all night in bed, never really getting good sleep and feeling that way every morning, not to mention heavy snoring (which I know could be UARS).

The therapy did make a huge improvement in how I felt. It did correct the desaturation problem while I was on it, I'm sure. No more migraines being the evidence. It wasn't a waste since I really started to get restful sleep, so I am not angry. PLUS it brought me to this site where I've met some of the nicest people on earth. So, all in all, it wasn't a bad thing.

R&R,
I agree, a blood test is in order, especially since being tired again was the main impetus for the research in getting off the machine. I was tired on it, too.

And thank you, all, for your great input and your caring. I agree, losing a little weight is rarely a way to stop having OSA. I was an exception.

Lori,

Forgive me, but I'm confused.
(I'm confused by many things in life)
I'm confused, mostly because I haven't been doing the reading. I've not followed all or even many of your posts (and I'm not about to go search through all of those!), so this may all be old news.

But did your doctor, when explaining the results of the sleep study, tell you what your AHI was? Did the doc explain whether that was low, moderate, etc? Did your doc recommend against the cpap? Or was it said: hey you have some apneas, it's a toss up, it might help, it might not.
I mean, did the doc say you NEED cpap? Or that it might help.
Sorry, I'm just a little (ok, a lot) confused.
(be gentle with me)


Linda

Linda,

Lazy, not wanting to go back through all of my posts (LOL). I had no sleep specialist working with me, so please understand that at the outset. I was the one suggesting to my PCP that I wanted a study as per the prodding of my son who thought I sounded like I had apnea. She agreed, sent me and went on the report recommendations that the sleep study made, which was to put me on CPAP at 10 cms., which, according to the RRT who did the titration study and wrote the report, said eliminated my problems.

When I was given my results, they were given to me as my having mild apnea and moderate oxygen desaturations, with 14+ PLMs per hour, which they claimed was responsible for drastically fragmenting my sleep architecture. I was not given a choice or told there were any other options but to be put on CPAP to treat what they called my "mild apnea" and my other situations. And realize, being told this after feeling like there was something fatally wrong with me and no one ever finding it, I felt not only relieved that they found something that wasn't seriously life-threatening, but vindicated that I truly wasn't a lazy hypochondriac.

That is when my normal personality kicked back in and I found this site, found out little by little all about the illness and what it involves, why people are diagnosed, etc., and here I am today, off therapy. The therapy DID help, which is wonderful, but I don't know why I wasn't given an option of perhaps being put on oxygen therapy when I slept, unless being I had events almost close to the 5 AHI level AND PLMs which are supposed to be helped and sometimes eliminated by CPAP, they chose to go that route.

I feel that had I known back in May what I know now, I may not ever have even entertained CPAP. But in a way, I'm glad I did because I did get my energy restored for some time and that, in turn, gave me the ability to get myself back in shape and feel human again.

Hope this helps clear some of it up.

Lori,

I'm not sure I completely understand. But thanks.

Have you ever posted the details of your sleep study here or on any of the boards? Over at the ASAA forum site people often post their study results and the information is always an education. I know people do that here from time to time. People learn a lot from seeing the actual statistics.

And a lot of people view these sites who never post, they come to learn. And that's what these boards are all about, learning about our condition, our diagnoses and our therapies. We're people with sleep apnea. These online support boards are wonderful. They enable people with the same health condition and problems to compare notes and support each other.

It's like being part of a club. Maybe not a club we'd prefer to be a part of, but one we need. And especially the boards about sleep apnea, I think. It is such a misunderstood serious life-threatening condition. It's all the more important to give as much accurate information as possible, and NOT discourage people with false hope from getting good quality treatment.


Linda

LDuyer wrote:Lori,I'm not sure I completely understand. But thanks.

I'm not sure what it is you're still unclear about. If you want to PM me, we can discuss it. I don't think anybody else will find this very informative and I don't see it as being a help to anyone.

And, yes, let us pray that people never get discouraged from continuing with a treatment that can be life saving and, at the very least, health restorative. Nothing to fool around with when it comes to OSA as it can and eventually will affect every aspect of your life if you allow it to go untreated or stop your treatment for wrong "reasons." I really believe that there is a very slim chance of stopping treatment once diagnosed PROPERLY. Maybe obesity and anatomical correction, and even that won't always keep someone off the therapy for good.

:twis ted: