Help!

Hello all. I'm so glad that I stumbled into this site and all the great info!

I just had a sleep study on 9/7/05. I mentioned to the tech in the 45 minute interview prior to the test that I was a "mouth-breather" and that I snored and stopped breathing. I fell asleep at 11PM and by 12:30AM the tech woke me and said "We need to get you hooked to a machine!" I spent the next 15-20 minutes trying to breath with the "nasal pillows" mask but instead of falling asleep I was getting more and more awake. I was then switched to a full face mask which was much more comfortable to breath with but a lot more claustraphobic. Immediately I felt air in my lungs and it felt INCREDIBLE! I think it woke me up even more. I eventually fell asleep and the next thing I knew the tech was waking me up at 5:30AM. She said that she thought I would never fall asleep. I finally did at 3:30AM. She said I had even gone into deep sleep and that I had done all the things I needed to - whatever that meant. She also mentioned that I had a very low oxygen level?

Now my question is (finally, right?) that I have an appointment with my Doctor on 9/15 and was wondering what should I expect at that appointment and what questions I should be asking?

I'm guessing that he'll go over the sleep test results and prescribe the appropriate equipment for me? How does he determine what machine/mask for me? Can I suggest what might work for me or will the tests objectively determine what would be best?

Do I bring up the fact that I spend many weekends in Flagstaff at an elevation of 7,000 ft as compared to Phx's 1,200?

Even though I felt terrible after the sleep study, I'm truly excited at the prospect of being able to help my tiredness/headaches etc. I can't explain what a great feeling it was to have air in my lungs. (I guess I probably don't need to to this group )

Thanks in advance for any/all help and I'm anticipating getting better soon...

Oh! I forgot (A symptom, I know ) The tech DID NOT wake me up. She had 2 patients and was busy with the other one when I started to have a nightmare.

I was dreaming that I was getting a shave and afterwards I had a clicking noise when I tried to swallow (I'm guessing after the fact that that was the VPAP). Then I couldn't swallow and was choking. I woke up disorientated and in a full-on panic attack. I yelled out for the tech, but got no response. I grabbed at the mask but eventually I calmed down...

Eventually the tech did come and I recounted the entire story. She really didn't seem to care one way or another and seemed in a hurry to get me up and out. Earlier in the evening she said she'd be able to go over the results with me but when I exited the room, she was busy with the other patient and said that she hadn't even printed my results.

I've had "bad dreams" may times (another symptom, I know ) but this one was far worse than anything I've ever had. I'm guessing this is common with a full face mask at first, yes/no???

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

NOzsnAZ,

The situation with the dream is not necessarily a result of what mask you wore, but rather that your brain was probably getting more oxygen than it's had for some time. Vivid dreams are not uncommon when first starting on CPAP therapy. They will probably subside in time.

Due to the altitude differences, you'll want to get a machine that will auto-adjust to altitudes. Most of the newer (higher end) machines have that feature, but do some comparisons of various machines on the CPAP.COM website. For the money (and for the knowledge of how your therapy is working), you should definitely consider a machine that will collect detailed sleep data that can be downloaded into a computer program for analysis. A heated humidifier (whether you use the "heat" or not) is pretty much a necessity for the dry Arizona air. The mask selection, while probably THE most important piece of equipment, will have to be something YOU select.

Definitely get the doctor to give YOU the prescription so you can decide where (if possible) you want to get your equipment. Insurance providers (if applicable) need to be kept informed and you need to know what they will and won't pay for.

As far as what your doctor is going to discuss......that depends on the doctor. Hopefully you've got a good one. If not, you'll fall into the same category that many of us did......and now we rely alot on each other.
Since you said that your test indicated that your oxygen level dropped, be prepared for the fact that he/she may want to put you on an oxygen concentrator as well (depending on how LOW your oxygen went and other factors).

Maybe some of the others have some ideas to add to this, but this is about all that I can think of for the moment......and until you talk to your doctor.

Above all, don't let them put you in equipment you don't want. Do your homework.

Best wishes,

Den

Thanks a lot Den.

I was considering auto-altitude, HH and some sort of analysis software as "must have" features so I'm glad to read your confirmation of them. I think my mouth breathing will also require a FF mask but I don't know. Maybe I'm just not used to nasal pillows?

My insurance is supposed to cover 90% of the cost so I'm not too concerned about the expense - I'm assuming that a proper prescription will dictate what type of machine I'll end up with, CPAP, VPAP, etc. and I'll just be determining what manufacturer-if even that? The doctor came highly recommended so I'm hoping our appointment will answer many questions.

I'm curious about the "get the doctor to give ME the prescription" part of your response. What's the difference? I've been told by someone at his office that my insurance is "very good" and if approved (prior to my sleep study) that the doctor would be able to give me the equipment right there in the office. Is this NOT a good idea? Is this not how it is usually handled?

I also asked the tech if they filmed my sleep study. She said that it's recorded on a CD-Rom and sent to the doctor to review. Can I request a copy of this? (Call me crazy - but I'd like to see it). Will I also get a copy of all the data collected - some of which I've seen posted here?

Thanks again for your response. I was beginning to worry by the lack of responses that my questions might be "silly newbie questions".

I just want to make as an informed decision as possible.

Thanks again.

NOzsnAZ

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CPAPopedia Keywords Contained In This Post (Click For Definition): newbie, CPAP, Nasal Pillows, Prescription, auto

NOzsnAZ,

If you're a mouth-breather (like me), then you are probably a candidate for a full face mask. I think they're probably less hassle than the nasal masks.

The situation with you getting the prescription is so that you can get what you want, and from where you want. What you describe further on in that paragraph ("...the doctor would be able to give me the equipment right there in the office."), tells me that either the doctor is dispensing his own prescription or he's got a cozy relationship with a DME supplier. That type of situation throws up red flags to me.....especially if it's in a large area like Phoenix.
Our local DME suppliers (here) charge somewhere around 300% of what the cost of the same equipment is from CPAP.COM (which is about the typical markup). In my opinion, it's MY money that's being spent (even if it's covered by insurance....I"M paying the premiums....so it's still MY money). This is one reason that insurance is so astronomically high, and EVERYBODY needs to do their part to try to keep it from becoming worse. People say "Well, my insurance will cover it." Well, who's paying the premiums? Everybody else!
Sorry for the "rant", but it's true.

My sleep lab also burned a copy of my sleep study on DVD to send to the main clinic in Billings, MT. I thought I wanted a copy of it until I discovered that it would take some real expensive software to interpret it. Not worth it. The sleep lab tech DID back up the "movie" (and data) on the computer and showed me various parts of the night (replay).....kinda neat. I didn't get a copy of my sleep study, but I would recommend to everyone else that they do (I'm not talking about the DVD thing....just the summary of the study).

Any more questions? Don't be afraid to ask them here.

Best wishes,

Den

Well I just got back from the doctor and I feel sick!

After all the help I've found on here I THOUGHT I was prepared and went with my questions ready. What I found was a doctor who just wanted to push me through as fast as possible! His exact words for me were:

"Well, you have severe sleep apnea. The good news is that we were able, through the use of the cpap, correct the problem. Please see Linda on your way out and she'll be able to get you set up with equipment and will set a follow up appointment for you."

W-H-A-T???? I couldn't believe it. I said wait a minute, I have a few questions but it was like pulling teeth getting any answers and almost all my questions were met with him having to actually look at the paperwork.

1st Question: Could you go through the results with me?
Doctor: Well you had an AHI of 34.7 events per hour. Anything over 30 is severe. But with a CPAP pressure of 7cm of water, you went to zero. So you'll get a CPAP machine and the full face mask that you used in the lab.

2nd Q: What about an APAP machine.
Doctor: Well, realistically at your level of 7, there is no conclusive benefit for an APAP or VPAP. A CPAP is absolutely fine.

3rd Q: What about a heated humidifier?
Doctor: Well most insurance companies don't see any benefit for a heated humidifier in AZ but a humidifier was used in your study so I will prescribe that.

4th Q: How do I go about getting the equipment?
Doctor: Linda will coordinate that between your insurance company and a DME.

5th Q: Can I just get my prescription?
Doctor: Linda will give you a copy.

6th Q: So how do I know what kind of equipment I'll be getting?
Doctor: The equipment is all pretty much the same. It'll just depend on what your insurance company and DME agree upon.

7th Q: Will I have the option of renting the equipment, in case I need to tweak it?
Doctor: As I said the equipment is pretty much all the same. It's a very competitive market. Most DMEs will rent the equipment. Have a nice day!



Linda: Well, I'll call your insurance company and then I'll get ahold of their DME and give them your precription and they'll call you to set up a time to bring the equipment out and show you how to set it up and use it. Have a nice day.

I forgot (I'm tired). I also asked for a copy of my test results. My study was conducted in two parts. Before CPAP and with CPAP. Here's some info off the test results:

Between 10:08 and 12:23, 105 minutes of sleep were recorded, with sleep efficiency at 78%. Stage REM sleep occupied 13%, while Stage I and II occupied 17% and 70% respectively.

Frequent OSA and hypopneas were noted, with a cumulative AHI of 34.7 events per hour. Respiratory disturbance was significantly more pronounced in Stage REM sleep in the supine position with a REM AHI of 97.8 events per hour. Events were associated with frequent arousals and significant oxygen desaturation -about 5% of the time dropping under 90%.

THEN WITH CPAP:

At a CPAP pressure of 7 cm of water, a total of 22 minutes of sleep recorded with robust amounts of sleep noted in stage REM and in the supine position. At this level of CPAP respiratory disturbance was eliminated with an apnea-hypopnea index of zero events per hour.

HELP!!!

Before accepting anything I contacted my insurance company and discussed how much I'd be paying. Then I told my doctor it was cheaper for me to buy it myself online and please just give me the Rx and I'll do the rest. He wanted to know what I wanted to buy, but after that was willing.

If you don't like the answers you are getting, fire your doc and find another.

Thanks WAF. I plan on calling the insurance company first thing tomorrow morning.

I'm also going to call "Linda" back at the doctor's office to verify that I requested (and need) a machine with an automaic altitude adjustment - since I travel from 1,500 ft above sea level to 7,000 often.

Anyone else care to give me an opinion on the above diagnosis and/or my apnea condition or do you need more info??

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CPAPopedia Keywords Contained In This Post (Click For Definition): Altitude, Travel

Well, your titrated pressure has nothing to do with the severity of your condition. So although 7 is on the low end of the pressure scale, it actually is irrelevant.

An AHI of 34.7 is considered by many to be in the severe range which is usually considered to be from 30 on up. Some here have reported double and triple that!

By contrast my AHI was 37 and my titrated pressure was 8. Despite that I had a long list of physical and mental problems which I had described in detail to my doctor even before I ever heard the word "apnea". It turns out I was a textbook case.

Your time with CPAP during your study was short (22 minutes). My concern would be that they are drawing some big conclusions from relatively little data. I had a full-night PSG and then a full-night titration where I was able to sleep almost 7.5 hours. During that time my pressure was taken from 4 to 10 in stages to determine my ideal.

Personally I'd push to get an APAP because of the uncertainties based on only 22 minutes of data!

When you call your insurance company, ask them to give you a list of all approved DME's. You have a choice as to which one you use. YOU have the prescription, you take that prescription anywhere you want just as if this were a medication.

You can call each DME and ask which machine they will give you...keep calling them until you find the best answer.

In my case, the DME I called wanted a copy of my sleep test and a copy of the prescription. I had both, so I just asked for their fax number and sent it all over to them. Then I went in and picked up my machine.

Now.....the bit about calling each DME until you found the right machine didn't come to me until AFTER I picked a DME based on local reputation only. So, I didn't exactly DO that myself, but it sure sounds like a good idea, doesn't it?

You can also buy your equipment from this site. Good luck!

Jan in Colo.

Thanks again WAF. I'm seriously going to use your suggestion of not accepting anything until I'm satisfied and I'll push for the APAP.

Some other data from my results:

My AHI went from relative to CPAP was:

Baseline = 35.3 for 105 minutes
4 cm = 54.0 for 10 minutes
5 cm = 10.0 for 48 minutes
6 cm = 6.2 for 58 minutes
7 cm = 0 for 22 minutes

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, AHI, APAP

I like your suggestion Jan but my prescription says for a Nasal CPAP. (The prescription pad doesn't even have a listing for APAP.

It says: "Nasal CPAP / BiPAP / C-Flex Therapy"

(BiPAP and C-Flex are crossed off)

Then it says: "Pressure: 7 cm H2O"
Mask: "Medium Respironics Comfort Full"

"Heated Humidifier" is circled

"Length of need: 99 Months"

" Diagnosis: OSA (780.53)"

How could I get an APAP without it specifically saying it on the prescription?

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NOzsnAZ,

You are so fortunate! Such a nice low pressure (7) took care of keeping your throat open so you could breathe well during sleep!

As for the prescription... as far as the online store, cpap.com, is concerned, a prescription that calls for "CPAP" is good for buying an autopap. I'm almost 100% sure of that (and of what I'm going to say next) but you can call cpap.com's tollfree number to check.

An autopap IS a cpap machine - an "auto-titrating cpap" machine. Autopaps come preset from the manufacturer with a range of pressure (4 - 20.) Your prescribed pressure of "7" is within that range, so you'd be good to go for ordering an autopap from cpap.com. Where autopaps are concerned, it doesn't matter whether a specific pressure is stated on the prescription itself...or even if no particular pressure or pressure range were mentioned. Again, that's just when buying from some online stores, like cpap.com.

On the other hand, if you have to deal with a local bricks and mortar DME, there are endless bits of red tape. The DME often has "agreements" with insurance companies about how much the insurance company will actually pay for equipment, regardless of the price tag you'll see on a machine or mask. I've heard it's like pulling hens teeth to get a straight answer from either of them - the DME or the insurance company.

There is no separate "billing code" for an autopap machine vs a straight cpap machine -- remember, an autopap IS a cpap machine, so falls into the "cpap" category. Most DME's are very reluctant to let you have an autopap - a more expensive machine than a straight cpap - because the insurance company is not going to pay the DME a penny more for "autopap" than it will for "cpap." There's less profit for the DME if they give you an autopap.

Many people on the message boards have found it's cheaper to simply buy the equipment they want online, out of pocket, than it would be by the time you figure up deductible, co-pays, etc. Some have even found that they can get their insurance company to reimburse them for online purchases, but if reimbursement is extremely important, you'd want to check that out thoroughly with your insurance company.

billmyinsurance.com, which is owned, as far as I know, by the same good people who own cpap.com, might work out well for you to buy what YOU want online, depending on your insurance. I'd contact billmyinsurance.com to find out.

I don't have insurance and never have bought one thing from a local DME. I do ALL my equipment shopping online and pay out of pocket when I buy something, whether it's from an online store, from EBay or Yahoo Auctions, or from another fellow "cpap'er". Have gotten great treatment for the two years I've been using "this stuff."

If you are willing to pay out of pocket (worst case scenario, if your insurance absolutely won't pay for online purchases) you need not be at the mercy of a local DME with the often limited types of machines and masks they'd let you have. Accustomed as I am to buying online exactly what I want, when I want it, I think my nice normal blood pressure would go sky high if I had to deal with a local DME.

It can cost you as little as $428.00 if you bought the excellent 420G straight cpap and heated humidifier online, or $579.00 for the 420S straight cpap and heated humidifier. The G would not give any meaningful data via software. The S, although still a straight cpap, would give interesting overnight data via software. The Silverlining software that the Puritan Bennett machines use is an extra expense - $99 for the software and download cable.

However, rather than a straight cpap machine, I'd recommend an autopap. I'm not a doctor, but at the pressure of 7 you were prescribed, I'd set the autopap at 6 or 7 as the low and 12 as the high. You'd probably never need anything near 12, but it's nice to have that margin up there in case your pressure needs changed from time to time on certain nights, or in the future.

I'd get this autopap package:

Puritan Bennett GoodKnight 420E autopap with heated humidifier and Silverlining software. $799.00
420E shown here

And this mask:
ResMed Ultra Mirage FF full face mask - which I'd suggest instead of the (imho) far less comfortable and far more prone-to-leaks Respironics ComfortFull FF mask that the doctor plans to put on your Rx. Online, the Ultra Mirage FF mask is $139.00
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That's a total of $938.00 - excellent 420E autopap, heated humidifier, software and a better quality full face mask than what the doctor was going to prescribe.
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We spend about a third of our life in "sleep".

Is it worth $1,000 out of pocket to make sure we are getting the best, most comfortable treatment possible during one-third of the remainder of our lives?

Obviously I think so. Hey, I even went so far as to get a Tempur-Pedic bed!! LOL!! Love it!

Rely on a busy sleep doctor who couldn't care less about comfort issues and leaves choice of equipment up to a DME?

Rely on a DME watching their own profit line to tell me what machine and mask they'll let me have?

Rely on insurance companies' bean counters to have one's health interests at heart when deciding what they will or will not reimburse?

Not me!

Get the copy of your presciption, NOzsnAZ, and you can buy what YOU want. Online. No prescription needed for the mask(s) of YOUR choice or for accessories like heated humidifier and software. Only the machine itself needs a prescription. The one word "CPAP" on the Rx is enough for letting you buy an autopap. Easy as pie.

Oh, do stop in at the DME long enough to try on the Ultra Mirage FF if they'll actually let you try it on. Try on several sizes in that mask, including the "shallow" cushion size. Take your pillow along and try the mask out while lying down on the floor if they don't have a bed there. Have them hook up a cpap machine using a pressure of 7. Toss and turn to your favorite sleep positions.

After you've noted which size suits you best (write it down!) waltz out of there, telling them you'll think about it.

I wouldn't feel a bit of guilt about using the DME only to try on some masks. They will MORE than make it up on the many poor unsuspecting souls who have never seen a message board. The masses who are herded like sheep by the doctor and insurance company through the doors and into the so tender hands of the local home health care provider...the "DME."

Thank you so much for your extensive reply Rested Gal!

Since I've already met my deductable (2 months into my insurance!) and BCBS will cover 90%, I'm hardpressed NOT to go through the insurance company.

HOWEVER, now that I'm armed with the wonderful info on this site, I feel empowered to battle with the DMEs in order to get what makes the most sense for me - not them.

I have to agree with all your recommendations! So here is hoping to get a 420E with a HH and software (not counting on that one) and the Ultra Mirage Fullface mask (thanks SO much for pointing out that that DOES NOT require a prescription!).

I'm really excited about FINALLY getting some sleep. Maybe that's just because I haven't battled with the DMEs yet....

Wish me luck!

I'll let you know how things turn out.

NOzsnAZ