new to forum, o2 low of 52, up to 81 events per hour on avrage, how bad is that?

[space45]

had a pro evaluation by a Doc to read their machine, average 40+ events per hour. they classed my as extremely extreme sleep apnea

I bought a RS01 wist monitor
getting lows in o2 of 52 and tons of events
only 46.69 % of the night in normal sleep, average of 81 events per hour

have tried a CPAP for a week as that was all they would loan it to me for
they said it fixed the sleep apnea, but I did not feel any different in the mornings with or with out the machine

$1500 for something you feel no different in the morn was hard to do, not to mention how awful the machine was to wear at night.
is there any other way?
stick tube up your nose or down your throat or both, something to keep airways clear.
this seem to be a obvious fix to keep the airways open, but no one seems to be doing it so was wondering if there was a reason why?

[trish6hundred]

Hi space45,
WELCOME! to the forum.!
Wow, your 02 was pretty low, that's not good.
CPAP therapy can take some getting used to, you weren't on it long enough to notice much improvement.
Hang in there for more responses to your post and best of luck to you.

[justMongo]

I would say that's severe apnea. CPAP therapy takes a while to become accustomed to; and for your body to reap the benefits. One cannot expect to feel better in a night or even a week. Plus, your severe desaturation would likely call for supplemental oxygen from a concentrator to be injected into the CPAP stream.

What you're asking is why not have a tracheotomy -- a hole to breath through. That comes with complications such as risk of infection plus you must close it off to talk. There are some surgical procedures that help some people -- microwave shrinking of the base of the tongue; splinting of the soft palate -- these work with specific pathologies. They are not likely to work on a person with such severe apnea.

Obesity and age both are factors in obstructive sleep apnea. Not that one must be obese to have OSA. Just the likelihood of a person having OSA -- and the severity of it goes up with weight and age.

And, BTW, a tube down the throat where OSA occurs is intubation. It's done during surgery. You cannot swallow while intubated. And, even an expert can mess up an intubation which can result in injury or death of a patient. It's not an appliance one can do on their own.

[herbm]

Welcome. Glad you found us.

First, it is a common report that it takes weeks or even many months to FEEL the improvements of CPAP therapy for many or most people.

Some lucky few improve their life in the first couple of weeks.

However, the HEALING OF YOUR BODY and MIND begins immediately, it just takes time to reverse the damage.

Remember, therapy is NOT JUST about "feeling better" (e.g., fewer headaches, better memory, clear focus, better concentration) but also about avoiding AFIB, heart failure, diabetes, and a host of other ailments which apnea either causes or exacerbates.

Second, most people to through about 7 or 8 mask before they find "The ONE" that is both comfortable and effective for them in providing significant improvement in their comfort and health.

And that "7-8" is probably just among the ones who STICK WITH (the polls I saw wouldn't include those who quit, or never really got started.

Presumably you don't have (good) insurance or you wouldn't be concerned MUCH about the cost of the machine (My machines cost ME, $62 + $11 for 10 months but I have a really good insurance policy, Aetna 80/20.)

I am one of the lucky, fortunate few who found the perfect mask DAY 1, got great advice and support (HERE and on a couple other forums), planned it all out, had a great equipment supplier, and great insurance.

BUT EVEN for me, there is no great improvement in how I FEEL (I didn't feel that bad to start.)

What I do have is the knowledge that the therapy can be comfortable (I would RATHER wear my Airfit P10 nasal pillow mask than NOT, and that is just based on the comfort WITH it on and ignoring long term or other effects during the day.)

I also know the terrible stats for people who don't get treated, high percentages with AFIB and Heart Failure as well as diabetes etc.

Please do yourself and your family a GIANT FAVOR:

Either stick with the treatment now, or keep researching (we'll help) to understand why the treatment is IMPORTANT to you having a much longer and much healthier (and happier) life with your family.

We can help you find better masks (probably) and to figure out how to obtain a cheap machine (perhaps used) as well as to find ways to make MOST of this more or less comfortable to do each and every night.

You didn't say where you are located?

Again: Welcome. Hang in there.

[me50]

had a pro evaluation by a Doc to read their machine, average 40+ events per hour. they classed my as extremely extreme sleep apnea

I bought a RS01 wist monitor
getting lows in o2 of 52 and tons of events
only 46.69 % of the night in normal sleep, average of 81 events per hour

have tried a CPAP for a week as that was all they would loan it to me for
they said it fixed the sleep apnea, but I did not feel any different in the mornings with or with out the machine

$1500 for something you feel no different in the morn was hard to do, not to mention how awful the machine was to wear at night.
is there any other way?
stick tube up your nose or down your throat or both, something to keep airways clear.
this seem to be a obvious fix to keep the airways open, but no one seems to be doing it so was wondering if there was a reason why?

the severity of your apnea and going untreated for probably a very long time, your body is not going to recover in a week. Doctors and the medical world prefer cpap as it is noninvasive and the patient can still work and cpap will make that experience a whole lot better. BUT, WITHOUT TREATMENT, YOUR ORGANS WILL MOST LIKELY BECOME DAMAGED (YOU ONLY HAVE ONE HEART, LIVER, PANCREAS) AND YOU WILL EVENTUALLY DIE IF/WHEN THEY FAIL.

No way I want a tube in my nose and/or throat permanently, especially with better treatment out there. If you are intubated, how are you planning on eating? Have another surgical procedure to place a feeding tube and more risk of infection? Nope, not for me!

Your choice....treatment or death and the least invasive and safest way to treat this is cpap.

EDIT: You say your O2 is low....well, it is no wonder that you have that issue with 81 events per hour but the likelihood of that happening with cpap therapy is much less. And just think of the brain cells that are being damaged!

So, it is up to you whether you want to risk damage to your major organs and neurological system or is it better to spend $1500 and get treatment and enjoy life at the same time! Your life won't be enjoyable with a tube in your nose and/or throat and a feeding tube too. You can check out the supplier list and see if you can find a cpap machine that you like and I betcha you can find one for a lot less than $1500.

[me50]

herbm

that is a lot per month! I thought mine was going to be pretty high per month but after insurance pays, the machine is only $22 per month plus the cost of supplies which is around $9 per month on the months that I get cushions and filters. maybe you can do some investigating to make sure that a mistake hasn't been made. We caught a mistake in my billing where they were going to charge me around $33 per month for the machine alone. doesn't hurt to check.

[justMongo]

@space45 --
I've been on xPAP for 4.5 years. I just bought a top of the line machine from one of the suppliers on the list for $1100 with overnight air express shipping. It's on its way here right now! You can get a basic machine out of pocket for less than half that. Get a written script from that doctor who evaluated you. If insurance won't cover you, then you can go out-of-pocket for less than $1500.

I don't know where you're located -- we have a number of people of the forum from various parts of the world -- it's hard to imagine that you wouldn't have some insurance benefit.

[robysue]

had a pro evaluation by a Doc to read their machine, average 40+ events per hour. they classed my as extremely extreme sleep apnea

I bought a RS01 wist monitor
getting lows in o2 of 52 and tons of events
only 46.69 % of the night in normal sleep, average of 81 events per hour

Severe OSA is defined by an AHI of 30 or more. (AHI = average number of events per hour.)

Any drop in O2 below about 88% is a serious concern. They really want that night time O2 level to stay above 90% and usually well above 90%.

Your OSA needs to be treated since untreated OSA can lead to a whole host of medical problems in addition to causing daytime sleepiness and fatigue.

have tried a CPAP for a week as that was all they would loan it to me for
they said it fixed the sleep apnea, but I did not feel any different in the mornings with or with out the machine

While the CPAP can fix the OSA right away in terms of preventing the vast majority of the events, it takes a while for the average new PAPer to notice much of a positive difference in how they feel.

For most new PAPers, it takes a few weeks to a couple of months to notice much difference in how they feel during the daytime. For new PAPers who run into some pretty common newbie problems, it can take longer.

$1500 for something you feel no different in the morn was hard to do, not to mention how awful the machine was to wear at night.
is there any other way?
stick tube up your nose or down your throat or both, something to keep airways clear.
this seem to be a obvious fix to keep the airways open, but no one seems to be doing it so was wondering if there was a reason why?

Sticking a tube up your nose will NOT fix the problem since the problem in OSA is further down in the upper airway. The usual problem is in the back of the throat.

As for a tube down your throat---have you ever had one?? They make putting on a CPAP mask seem like a very pleasant walk in the park.

For now, CPAP is the gold standard for treating OSA. It is the first thing that is recommended and for people with really severe OSA (like yours), it is well worth putting the time and effort into figuring out how to make CPAP work for you.

That said: Getting CPAP to work comfortably so that you don't mind masking up at night takes time and patience and a lot of work for some of us. Once you make the decision that you intend to really work on making CPAP work for you, you'll get a lot of help here on how to solve all the pesky issues that make CPAP so incredibly uncomfortable at the beginning.

And what about the alternatives to CPAP? For genuinely severe OSA like yours, the only real alternatives are either an early death from any of a host of OSA-related causes or a tracheotomy.

[Sleepster]

have tried a CPAP for a week as that was all they would loan it to me for
they said it fixed the sleep apnea, but I did not feel any different in the mornings with or with out the machine

Did you spend all night every night with the mask on?

$1500 for something you feel no different in the morn was hard to do, not to mention how awful the machine was to wear at night.
is there any other way?

You can get one for a lot less than that, but making you feel better is not the issue. Saving your life is. Without the CPAP machine you're putting all kinds of stress on your cardiovascular system. That's going to lead to stroke and heart attack.

The good news is that the things that bother us about CPAP therapy go away as our bodies adapt. Soon you'll wake with the mask on wondering if the machine has stopped because you won't notice it anymore. It'll just become part of your life.

And, oh yeah, one more thing. You will start to feel a lot better.

[space45]

I am in Canada, so I have to cover cost of machine myself
some one said a top of the line unit cost only $1100, the guys that evaluated me said a simple machine will work, but will a auto one be better?
I like being able to get the stats, I hate being in the dark and relying on others, the local guys want to control info and settings and as far as I know there $1500 one does not have any readout as I had to wear there tester unit to see if the cpac unit was working for me.

any recommendations on mask and machine would be appreciated, and where to get them as well. up here in Canada there is no prescription needed as far as I know, at least I have not got one yet and I did go through their process of evaluation. they said I was the worst case they have ever seen.

I would rather spend more and get a good machine that for sure will do as good as possible job then some mediocre just make the grade one.

thanks
Stan