Attempt at re diagnosis

Hi all, just wanted to ask for some feedback on my situation. I was diagnosed in 2003 with OSA & setup on a Remstar Plus at 11cm with 1 lpm supplemental o2. I have used the cpap faithfully since with the exception of a couple times when I've had inner ear infections. My machine now has 30,356 hours on it (yes you read that right, a little over 30k hours)

In the last couple years I have felt that it hasn't been as effective (and I've gained about 20 pounds) so I asked my PCP if I could be referred for a new study to see if I need changes to pressure etc. The PCP sent me to a new pulmonologist for a rediagnosis. The original test results from 2003 have been lost and no longer on record so the new Dr decided to start from scratch.

This is the report from the first night back in January of this year:
"Overall 399.5 minutes of time was recorded. Sleep efficiency was reduced at 77.1% Sleep latency was normal at 15.5 minutes. Sleep architecture showed that sleep was severely fragmented. Sleep fragmentation was seen due to largely spontaneous events. REM sleep was not seen. Delta sleep was seen in diminished amounts. The apnea/hypopnea index was 0.4 events per hour. Oxygen saturations dropped as low as 85.0%. Limb movements were seen with a periodic limb movement index of 7.6 events per hour and a periodic limb movement arousal index of 3.3 events per hour. EKG showed normal sinus rhythm. EEG showed no evidence of epileptiform activity"

The doctors recommendations page:
"It is unclear whether the patient held his CPAP for any period of time prior to this study. He should return to the office for a follow-up. If he did not hold the CPAP for 4 days or longer prior to polysomnography, perhaps he should repeat the diagnostic polysomnography after having held the CPAP for an appropriate period of time. Home sleep testing with repeated nights may be more effective at discovering his existing sleep apnea" Note: my insurance will not cover home testing at all.

Two days ago the office called me and asked if I could be back in the lab for another study the following night (last night now). I went back in and I slept worse than I did the first time, the tech said that he only recorded a couple hours of sleep, none of which were REM sleep, he said other than that he can't say much until the study is scored. He asked me my opinion on why I feel that I don't sleep in the lab, I told him it was because 1)it was too warm in the room and 2) I have a hard time falling asleep and staying asleep without the mask on. The tech then proceded to ask if I had been wearing the CPAP up until the night of the study, I told him yes, nobody (including the Dr) had told me to stop wearing it prior to going in.

Now I feel like a complete and utter dumb-bell because reading the Dr's recommendations I realize that when he states "held his CPAP" means that I should have not worn it for at least 4 nights before going for the test, I was thinking that when he said "held" he meant held, as in owned Now I will note that neither the Dr, the respiratory therapist, or the office staff told me to not wear it for any length of time before going to the lab, so maybe it's not completely my fault (that and they gave me a 1 day notice out of the blue to come back in for a 2nd study lol)

Do you really think that not using the CPAP for a few nights before another study will make a difference in the study? Should I request that if I go back for a 3rd night that I be placed on CPAP during the study to attempt a re-titration? I'm kind of at a loss here and wonder if I should just give up and keep using what I have?

The is some thought that there is a leftover residual holding open of the airways from long term cpap use and I have heard about some doctors advising to not use the cpap machine for a few nights prior to the sleep study just in case it should happen.....but I don't think it is something that is very commonly seen. Most of us don't have any leftover benefit to help us out should we go without the machine...I know I sure don't. Found that out when I had to go without my machine just one night because I forgot to pack the long hose when on a trip. Spent one night without the machine until I could find another hose and it was a horrible night.

With the lack of REM and low AHI and the mention of a lot of spontaneous arousals and the fact that I assume that when you use the machine that you sleep better and feel better....if the AHI is indeed so low... if maybe you have some sort of UARS component going on. Upper Airway Resistance Syndrome...google it.
CPAP is still the preferred treatment for UARS but AHI is always remarkable.
The sleep lab may or may not have been looking at UARS as a possibility. They aren't always on the alert for it.

Oh...do you take any meds of any kind? Some meds will cause sleep architecture problems like decreased REM.

Hi, Pugsy and I don't always agree on things , though she's certainly much more of a tech wiz than I am re machines, etc., but I do believe it's quite possible to have holdover effects of Cpap after 1-2 nights... but whether or not it's relevant to you is not clear. It's too bad you've been using the Plus, because it gives no data beyond compliance, and if you had access to a newer machine that does give more data, you could download SleepyHead (free from link in her signature) and we could get a real look at what's going on, especially when you're sleeping at home. What are the chances of that happening - how's your relationship with local DME's who'd be willing to e.g. rent you a better Apap machine for a few nights?

I don't think it is impossible for there to be some sort of holdover effect...but I don't think it is very common. If it were common then we should be able to take a nap without the machine.

Pugsy wrote:Oh...do you take any meds of any kind? Some meds will cause sleep architecture problems like decreased REM.

Glad you asked this Pugsy as I should have mentioned meds in my OP. I have had 2 back surgeries & take Cymbalta 30 mg 2x day, Gabapentin 800mg 3x a day &Hydrocodone/APAP 10/325 3x a day as needed. My pharmacology knowledge is somewhat limited as I only took a couple semesters of it in nursing school, but I do know that all 3 meds can cause sleep disturbances.

Julie wrote:What are the chances of that happening - how's your relationship with local DME's who'd be willing to e.g. rent you a better Apap machine for a few nights?

That is an idea Julie, I will ask the Dr if he can speak to one of the local DME's about renting me an APAP. The DME that I got my original equipment from is no longer in buisness so I'll have to see if I can sweet talk one of the other companies in town

If your prior OSA diagnosis was for mainly events found in REM sleep then the absence of REM sleep could possibly explain the low AHI this time.

I don't know off hand if your meds (especially the Cymbalta) are known REM suppression meds.

Without the diagnosis it is unlikely that insurance will pay for a new machine.
Now if you feel that using the machine makes a huge improvement in your sleep quality and how you feel and you want to continue therapy anyway...there are ways to buy a machine out of pocket and not have it be horribly expensive.

Pugsy wrote:Without the diagnosis it is unlikely that insurance will pay for a new machine.
Now if you feel that using the machine makes a huge improvement in your sleep quality and how you feel and you want to continue therapy anyway...there are ways to buy a machine out of pocket and not have it be horribly expensive.

No, I'm 100% sure insurance will not cover a new machine as I can't seem to get diagnosed again. Please tell me more on how I can buy a machine out of pocket without having to give up an arm & a leg I really don't think I'll be going back to either the Dr or another lab after this. I'm just incredibly frustrated by both not being told to discontinue using CPAP for a period of time before the study & not understanding what the Dr meant by "holding the CPAP", I just feel like a complete idiot and don't want to keep wasting the insurance companies money.......

this is a full data auto cpap :

I can ship for the listed price

http://sfbay.craigslist.org/eby/hab/4936782832.html

or this one with heated hose and humidifier for $600:

http://sfbay.craigslist.org/eby/hab/4939611371.html

or if you want a Vpap (bipap) this one for $800

http://sfbay.craigslist.org/eby/hab/4934732745.html

twotired wrote: Please tell me more on how I can buy a machine out of pocket without having to give up an arm & a leg

Private part purchase like from grayghost14 or one of the other forum members who might have a machine to sell depending on what you want and what your pocketbook will bear. Sometimes hot deals on craigslist can be found.
I have bought probably 8 machines (actually lost count) over the past 6 years and not one was done through insurance and I have a RX because my diagnostic AHI was 53 per hour.

Even my very first machine...private purchase Craigslist ad and I drove a couple of hours to get it and I paid just $20 more than what my copay using my insurance would have cost me....and I got exactly what I wanted instead of the bare bones piece of crap the first DME wanted to supply me for the same money. I fired that DME totally and I use another for masks and misc supplies so I can get a little bit of my insurance premiums back. Usually 1 mask every 6 months and maybe a replacement nasal pillow once every 3 or 4 months but I haven't even seen them since I think last Sept.

There are ways to get masks too and not need a RX...EBay or Amazon...just watch what is offered. Replacement parts don't require a RX (even from online suppliers like cpap.com) so you can easily just buy the parts and build your own mask or sometimes find Amazon or EBay deals that include all parts with carefully worded listings.

I just a couple of weeks ago got a complete brand new totally sealed (from Resmed) AirFit P10 nasal pillow mask setup with 3 pillows, headgear and hose/frame for $40 and that included shipping. My insurance co pay will cost me more than that.

For private purchase...if you can't afford what grayghost (or the others) might need for a brand new machine there is always the option of getting a gently used machine for less money. Might take a bit of shopping around but it can be done.
I once got a PR S1 BiPap Pro with 800 hours on it for $100...deals are out there if a person knows what they want and can move on the deal quickly because hot deals won't last long.

I have a PR450p that I can sell for $225 shipped

Pugsy wrote:For private purchase...if you can't afford what grayghost (or the others) might need for a brand new machine there is always the option of getting a gently used machine for less money. Might take a bit of shopping around but it can be done.
I once got a PR S1 BiPap Pro with 800 hours on it for $100...deals are out there if a person knows what they want and can move on the deal quickly because hot deals won't last long.

Thanks for the advice again Pugsy, I have bought masks before from cpapplus.com and they never asked for an RX, just shipped me what I ordered. As for machines I will take your advice and keep an eye on Craigslist, I would need to get one heck of a deal to be able to afford one out of pocket.

grayghost4 wrote:I have a PR450p that I can sell for $225 shipped

Thank you for the offers GG but currently everything is out of my price range, I'm still on workers comp for a back injury & things are pretty tight money wise, thank god I qualified for low cost health insurance through the ACA..........

Frustrating place to be. Sounds like you could benefit from being medicated for a sleep study to increase your chances of actually sleeping. I really feel that in view of the previous diagnosis, the insurance should accept a doctor's diagnosis independent of the sleep study and in consideration that this study did not prove you don't have sleep apnea. It could only have proved that with substantial deep and REM sleep reported, and while supine. This seems to be a gap between insurance requirements and diagnostic abilities. Can you talk to your insurance company and ask them what the next step is in a case like this? You can't be the only one. Is there a possibility for one more sleep study, with a few days off the machine, and with sleep meds? Also wondering if a limb movement problems might be emerging. Do you normally have restless sleep? Certainly not enough info to back that up at this point. Just wondering how many apnea events those limb movements might have preempted - enough to give you a diagnosis maybe? At any rate, I think the bottom line for me is 1) you have been diagnosed 2) the current tests did not disprove that diagnosis. Sorry you have to go through this.

twotired wrote: Thank you for the offers GG but currently everything is out of my price range, I'm still on workers comp for a back injury & things are pretty tight money wise, thank god I qualified for low cost health insurance through the ACA.....

I will keep my eyes out for a suitable low cost option. If you spot something on your local craigslist and don't know exactly which model it is just post the link here and someone will clue you in on what it is and what it will or won't do.

twotired wrote: Thank you for the offers GG but currently everything is out of my price range, I'm still on workers comp for a back injury & things are pretty tight money wise, thank god I qualified for low cost health insurance through the ACA..........

Keep an eye on craigslist, and consider barter as well, or selling something if you have something to offer. Also consider any kind of service you can do. Perhaps you have computer skills, or something else that might work as a barter option. Also, look in the gigs etc section. There are mock juries and marketing surveys that pay money. I have done two mock juries, a marketing thing for dog chews, and a political discussion group. All paid in cash, and paid pretty well. $75 for an hour, $125 for 4 hours, etc. You might find a couple of those that would pay for a good machine.

I got my backup Resmed S9 autoset for $200. And I have seen other similar deals. You might get lucky and find one at a good price or find somebody willing to barter.

Kteague; You have some great points, I'm going to call the Dr tomorrow & ask if there's the possibility of giving more than one days notice to go in for another study so I can spend a few nights off the machine to see if we can get better results. I believe that based on a total of 13 minutes at 85% saturation proves that there is evidence of OSA or UARS that isn't being diagnosed.