Second Guessing My Purchase

[Cassandra]

My APAP machine is out for delivery as we speak. It could be here any moment now. I was so sure it was just what I needed and so excited to get it. But as with everything I buy that I spend more than eight dollars on, I'm beating myself up over it now. Was it really a necessary expenditure. We could have bought a lot of groceries or paid for a lot of electricity with all of that money.

As a little back ground, I never had a sleep study. Rather than pay the thousands of dollars for a sleep study (no insurance), in light of my overwhelming symptoms, my doc & I decided to get the APAP. Even if I don't have sleep apnea, buying the machine will save me enormously over having the study done. Anyway...

I decided to video myself last night while I was sleeping. It was really hard for me to go to sleep. I didn't until around two thirty this morning. I set up my computer to record me for a couple of hours. For whatever reason, it recorded for only an hour and a half. I was actually asleep for about an hour of that time. (While I was just lying awake, I would touch my face if I made a weird movement as a signal to myself that I was still awake.)

I started out the video laying on my back. Each time I would drift off, I could feel myself stop breathing and wake up. This happened every several seconds for about half an hour. I obviously wasn't going to go to sleep that way. So I rolled over on my stomach and went to sleep. I have an hour of video of me laying on my stomach doing absolutely nothing. LOL I apparently slept like a rock. I woke up a little after five this morning and watched it. (Not all of it, really and I will study it more closely when I have an hour and a half to bore myself to tears watching myself sleep.) I didn't even move. My hands were folded beside my pillow and they didn't move. Near the end of the footage, I turned my face a little. That was it.

So, now it has me wondering, "Instead of spending all that money, why don't you just sleep on your stomach all the time?" **sigh**

The answer is, "Because you do sleep on your stomach all the time and you still wake up feeling like someone has been standing in your chest all night."

It would be easier to think and make rational decisions if I was better rested, don't you think?

Cassandra

[TerryB]

Don't beat yourself up too bad.
An APAP is a good way to determine what is going on IF you have the tools and ability to recover the information it can provide.
I'm sorry that I don't know enough about the machine to tell you what you will be able to determine from the machine alone.
I'm sure there are others who know what's up with your chosen equipment.
Best of luck,
TerryB

[BleepingBeauty]

It would be easier to think and make rational decisions if I was better rested, don't you think?

Cassandra

No doubt about that, yes. Now, stop beating yourself up over your purchase. I think you made a wise decision to self-titrate at home, since you can't afford a sleep study. With guidance from your doctor and the experienced members of this forum, you're on your way.

If you find out that you DON'T have sleep apnea, you can always sell the machine. But since you're not getting a good night's sleep and feel like someone's been standing on your chest when you wake up, it's likely that you DO have sleep apnea, and you'll be able to get treatment with your new machine.

You made a good decision, Cass. Stop bumming out about it and look forward to diagnosing and treating your sleep issues. Even if it takes a long time to "get there" with effective treatment, it's definitely worth the effort.

What kind of machine did you order? And did you (or will you) purchase the software and a card reader to go with it? My machine's readout offers only basic information; the software and card reader give me much more data to go by, and I'm glad to have it.

[jnk]

In my opinion, if you have documented that you wake yourself up from not breathing when you are on your back, you are very likely to benefit from the machine in other positions too.

You could always sell the machine if you had to. But I think you will benefit. So just think about all the money you will save in medical bills in the future as you lose weight (if you need to), lower blood pressure (if you need to), allow your organs to get oxygen all night, etc!

If it was me, once I was used to using the machine all night, I might record myself sleeping again to see if I had periodic limb movements.

[Muse-Inc]

Cassandra, welcome aboard! Great place for answers. I'm relatively new to xPAP therapy (almost 2 years) and sadly didn't discover this place until a few weeks ago. There's a vast amount of information here -- check out "New Users" and "Our Wisdom" links at the top of the page and ask questions. Reading current and past threads is very informative and often amusing...some of the posters are hilarious both in personality and how they deal with their apnea. Remember, we're all just people like you dealing with a serious condition, I haven't read a doc (that I'm aware of) posting now but there are some older posts and articles from doc. So, take suggestions you read here with a grain of salt and run it/them by your doc.

You won't know if the purchase is a good investment until you try it out, are able to analyze the data (someone else with have to supply info, I'm clueless ), determine your optimal settings, get the right mask, and -- most importantly -- get rested! As long as you're exhausted, your thinking as well as your health is compromised -- we know because we've all been there. Some of us are still recovering from our years of untreated apnea.

I applaud your initiative in seeking treatment. You might research getting a grant for a free sleep study: I googled "free sleep study" and got 351 hits -- I'd guess a lot are scams of one sort or another but I know I've read that one of the sleep organizations (AWAKE maybe?) does sponsor free studies for those of limited means. Might try calling your local Sleep Labs and see if they have sponsored (free) sleep studies; also, you might qualify for an research study that includes a free sleep study.

My CPAP therapy has been working well for me until I started having mouth leaks & incidents at night that appear to be events. Because I was laid off in March, there's no $ for another Sleep Study; however, my sleep doc has me on a waiting list for an APAP loaner (his are all out with other patients) that I'll use to get to get data that can be analyzed to:

• Determine if I'm really having events at night with my current mask and setting (will help make a case for my insurance) or point us in a different direction for resolution
  
  Identify (with the help of folks here using an APAP) my optimal pressure & settings now (I've lost a lot of wt that could affect these)
  
  Determine I need a different mask if my mouth leaks are large enough to justify moving from nasal pillows.

The above is what an APAP can do. The only thing that would add a lot to this is use a recording oximeter and then correlate the APAP data with that of the oximeter to see what happens to your oxygen levels during events.

[alnhwrd]

Cass,

Stop beating yourself up. Its very possible that you are still having events on your stomach, such as Hypopneas or Flow limitations, and even apneas. It would take a sleep study to document these and any other problems that you could be having. If you have "overwhelming" symptons that your doctor believes indicate sleep apnea, then you likely do. In that event, by purchasing the APAP you have bought yourself something more valuable than groceries or electricity; time on this earth with those that you love. Treating sleep apnea is about the equivalent of quitting smoking, and should add years to your life in the same way. BTW, I used to sleep like a rock on my back, then I had to switch to my sides to sleep soundly, then my stomach. By the time I had my sleep study I was having full blown events sleeping on my stomach as well. So even if you are sleeping ok on your stomach now (and I would question that without some evidence) in time, like me, you may reach the point where you stop breathing even when sleeping on your stomach. IMHO your money is well spent.

[LinkC]

In plain dollars and cents, the sleep study alone would have cost several times what the APAP did. And, if it showed OSA, you'd STILL have to buy a machine on top of that.

On the other hand, you can't sell a sleep study report on eBay!

I think, having no insurance to help, you made a very wise "gamble".

1. You "bet" a smaller amount of money.
2. You saved the cost of a machine if the study was positive.
3. You cut your losses (by buying something re-sellable) if it turns out you DON'T have OSA.

Wanna meet me in Vegas? You're one shrewd gambler, girl!

[Cassandra]

I appreciate you all being so supportive. I think I am having a case of first date jitters.

I am as certain as you can possibly be (without the benefit of a sleep study) that I have OSA. Even if I am sitting upright in a recliner and doze off, I am frequently awakened by the sensation that my lungs are imploding (because my diaphragm is pulling downward and no air is getting in.) I think I have some sort of accompanying muscle weakness in my throat because I aspirate on my saliva a lot... just for no reason. And while sleeping on my side, I will wake up gasping and sputtering. Not to mention the constant sleepiness and exhaustion.

So, unless there is some other sleeping disorder that causes you to stop breathing and feel like you aren't getting any sleep, I for sure have it. lol

I also have PCOS (diagnosed ten years ago), diabetes (controlled with diet and metformin), RLS, and miserable insomnia. I feel like I am asking a lot of this little machine! LOL I think if I can just begin to get a some rest, it will have paid for itself many times over.

I didn't get the software yet. In a couple of months when I have emotionally recovered from buying the unit, I'll get the software package. In the mean time, I am not sure how the machine displays data. But if there is anything available for me to access, even just visually, I can put it in the computer myself to make graphs and look for patterns. I got the intellipap auto travel machine. (I think it's listed on my sig)

Cassandra

[Cassandra]

In plain dollars and cents, the sleep study alone would have cost several times what the APAP did. And, if it showed OSA, you'd STILL have to buy a machine on top of that.

On the other hand, you can't sell a sleep study report on eBay!

I think, having no insurance to help, you made a very wise "gamble".

1. You "bet" a smaller amount of money.
2. You saved the cost of a machine if the study was positive.
3. You cut your losses (by buying something re-sellable) if it turns out you DON'T have OSA.

Wanna meet me in Vegas? You're one shrewd gambler, girl!

Hehehehe. Thanks, LinkC. That's a good way to look at it.

[DyannaK]

Welcome Cassandra I dont have any advice, I am too new myself... But what you have described sounds like SA to me.. I hope your new machine works out and you feel lots better real soon

[BeanMeScot]

I am as certain as you can possibly be (without the benefit of a sleep study) that I have OSA. Even if I am sitting upright in a recliner and doze off, I am frequently awakened by the sensation that my lungs are imploding (because my diaphragm is pulling downward and no air is getting in.) I think I have some sort of accompanying muscle weakness in my throat because I aspirate on my saliva a lot... just for no reason. And while sleeping on my side, I will wake up gasping and sputtering. Not to mention the constant sleepiness and exhaustion.

So, unless there is some other sleeping disorder that causes you to stop breathing and feel like you aren't getting any sleep, I for sure have it. lol

I also have PCOS (diagnosed ten years ago), diabetes (controlled with diet and metformin), RLS, and miserable insomnia. I feel like I am asking a lot of this little machine! LOL I think if I can just begin to get a some rest, it will have paid for itself many times over.
Cassandra

You sound like a poster child for SA. I am psychic so I can say with some certainty that you are also getting up during the night more than once to go to the bathroom.

A lot of your symptoms will get better with CPAP treatment. You will probably find that you don't actually have insomnia at all!

[Muse-Inc]

Cassandra, just my take on me: obesity, chronic high stress due to events outside my control & poor adaptation to those changes/events, apnea creating chronic oxygen deficiency lowering my immunity, pneumonia (still have low blood pressure & OK blood glucose at this point), within 2 yrs: hypertension (low oxygen is one of the causes), disorder thinking & poor memory esp short-term (I work in high tech and this has been disasterous for my job performance), high blood glucose (often a result of apnea), plus other annoying symptoms like needing to pee 8-10 times/night. This appears to be a common pathway. As one family member puts it, with apnea I become an impatient meany...I'd say a first class witch . I was as hard on me as I was on other people; sadly, I didn't like me and neither did anyone else. This extrovert became a recluse, angry I couldn't get rest no matter how much I slept, and angry my doc at the time wasn't smart enough to figure out how to help (gee, not that I'm bitter or anything...naw, not me!!!). Being diagnosed was at first terrifying, then when I got over my shock (I was clueless about apnea as I didn't snore), I was grateful there is therapy for this condition -- I hug my new doc for recognizing my apnea every time I see him in thanks because I'm still alive!

It's been a long journey but I'm off 3 of the 4 drugs I was on, I typically wake up refreshed after 8 hrs of uninterrupted sleep, my BP is normal and stable, my stress resilience is back to pre-apnea, and my immunity is much improved. My exhaustion is gone, mood & attitude & energy level mostly back to pre-apnea, I'm exercising, I changed my eating and lifestyle, I've lost 50#s so far, and best of all, I have patience with myself & others again. It remains to be seen how much of my brain function will return as I'm still experiencing improvements after nearly 2 yrs.

I hope your issues will also resolve with xPAP therapy!

[kteague]

Cassandra, my guess is if you had recorded a full night you wouldn't be second guessing yourself like this. An hour is such a limited view of your sleep. For instance, since this was not a sleep study with the brain wired, you can't know what stage(s) of sleep the video time captured, but it would not be expected for you to have reached REM during the first hour of sleep, and OSA is often worse during REM.

You mentioned having RLS and JNK suggested recording yourself again after getting used to the cpap machine. I agree with that. Limb movements can disturb sleep and leave one not feeling rested, and certain types of limb movements of sleep (like with PLMD) can actually worsen once the apneas aren't waking the person and they are sleeping more.

You'll get plenty of support here as you systematically work thru this. You are not the first uninsured person to do this without a sleep study. And your doctor is supporting this. Sounds like you're on your way to feeling better.

Kathy

[MoneyGal]

Cassandra - I don't want to bet against you (because your track record as a gambler is good!) but I am SURE your chronic insomnia is related to your apnea. Your poor body is probably just trying to keep you awake and breathing.

I used to have terrible, terrible, insomnia. Post diagnosis I periodically wake up in the night and cannot fall asleep again but it is infrequent (and kind of welcome, actually) as opposed to an every night thing.

I think your decision path is good and reasonable. We're all cheering you on.

[Cassandra]

I used to have terrible, terrible, insomnia. Post diagnosis I periodically wake up in the night and cannot fall asleep again but it is infrequent (and kind of welcome, actually) as opposed to an every night thing.

MoneyGal, that would be great to be able to sleep!

And to my friendly forum psychic, you are right! I do have spells where I will get up six or eight times a night to pee. LOL Doesn't happen all the time. More like, every night for weeks, then I'll get a break, then back to every night. It is so weird and unpredictable!