newbie question (long)

Hello all, (and sorry about the length)

I received a diagnosis of apnea a few days ago, and figured I should introduce myself, and ask for advice on an issue which just came up. My insurance company has denied my doctor's request for an in-house sleep study (I had the take-home one to get the diagnosis), and is trying to give me an APAP machine, instead of a CPAP. My question is: given my overall situation, should I push the insurance company, or is their recommendation good enough? I guess I should provide some background.

I am a 48 yr. old male. I have never slept well. I always had difficulty falling asleep, and would wake too early, and too frequently. About 15 yrs ago, my sleep took a major turn southward. I started getting strange "sensations" whenever I tried to sleep. Some of it was RLS, but the rest was more severe. I felt a strange vibration throughout my body. I would get pins-and-needles, intense itching, sharp stabbing pains, bugs crawling, and muscle spasms. This would occur whenever I tried to sleep (preventing me from doing so, in most cases), would be all over my body, and would often wake me (usually after dreams that I was being attacked by insects, lol). I would usually have 2-4 completely sleepless nights per week, and I would guess that I usually had ~1 night of 4+ hrs. The other nights were 1-3 hrs. However, I could still, at that point, take naps, and I would also get the occasional period where it seemed to go into remission (at least, it wasn't nearly as bad, sometimes for a month or so).

While generally healthy, my total volume of sleep was absurdly low. After a while, I stopped telling doctor's how little I slept, because they simply didn't believe me. I told them I slept about 20 hrs/week, but the truth was that for the last 15 yrs, when it was bad I didn't even come close to that much. And most weeks it was bad. I saw many doctors over the years, and nothing prescribed ever made any difference. The neuro. was useless, all bloodwork normal (until recently), and there were no allergies or derm. issues. I eventually gave up on doctors, at least for the sleep issue. Interestingly, no doctor ever suggested a sleep study, and I didn't think that my problems were coming from sleep itself, but rather there was something else going on.

Fast forward. About 9 months ago, it started to get even worse. Naps were out of the question (actually, it was about 2 yrs ago that I stopped being able to nap). I could no longer even lay down without discomfort, would get more extreme the longer I laid down, and it was often striking while sitting up. Car rides were miserable (the vibration set it off). And I was getting very, very little sleep. The occasional bout of alcohol (to pass out), and 24-hour coffee, was the only way I could function. But it was even waking me a few hours after "passing out". So I made yet another doctor's appointment in Dec. Leading up to the doctor's appt., I had 20 minutes sleep over an 8 day period (I had had similar weeks, but this was qualitatively different). I really was quite worried. The "sensations" were now a 24-hour phenomona, and I just felt like my body was shutting down. When I went to the doctor, he found that my heart was in atrial fibrillation (and the cardiologist believes that I have been in afib persistently for months).

I had read about someone who had had a similar issue as mine, and Gabapentin cured all of his symptoms. The main reason for the doctor's appt was to get a prescription. I have since found out that everyone on my mother's side is on Gabapentin, for a range of issues. And neuro's have never been able to track their problems down, but there is definitely a congenital issue. So I think, and all of my doctor's think (I have good doctors, now), that apnea triggered this congenital issue, that manifested for me in the form of this neural "noise" (my extended family is on another continent, and I've never met/talked to any of them, so I had no real way of knowing all of this up until recently). Gabapentin has been a miracle, for me. Since Dec, I have slept every single night, and I've gotten at least 2 hrs sleep every night (and up to 8!). Those symptoms are all but gone, and I feel so much better (despite the afib, and the side effects of those drugs). All of the other issues I developed over the last 9 months (these issues are irrelevant for this question) have either gone away, or getting better.

Okay, back to my question. I have another cardioversion coming up (the last one held for 3 days). I recently was diagnosed with moderate sleep apnea. While the apnea isn't too bad, I believe that it combined with the chronic sleep deprivation to send my heart into afib. My cardio really wants the apnea issue resolved, ASAP. My insurance company wants me on APAP, not a CPAP. I am waiting to hear back from the sleep doctor, but I will need to make a decision, and am looking for any input from people who are familiar with the differences between the two. I thought that APAP was better, but the sleep doctor (at least from what the sleep center told me) will be pushing for a CPAP (she may have been mistaken on this, but I won't know until they call me back).

Thanks, and I can't wait to get a machine, whichever it is!

at_war_with_bugs wrote:My insurance company has denied my doctor's request for an in-house sleep study (I had the take-home one to get the diagnosis), and is trying to give me an APAP machine, instead of a CPAP.

Take it. APAPs can be run in APAP mode or CPAP mode. CPAPs can only be run in CPAP mode.

Make sure you get a data capable machine.

Data must include pressure, leaks, and a record or your events throughout the night,
specifying if they are obstructive, hypopneas, or open apneas.
The apap you should avoid is the Resmed S9 Escape Auto.
Autoset is good; Escape auto is a brick.
Some DME's are dishonest, and will tell you otherwise. Beware.

ChicagoGranny wrote:

at_war_with_bugs wrote:My insurance company has denied my doctor's request for an in-house sleep study (I had the take-home one to get the diagnosis), and is trying to give me an APAP machine, instead of a CPAP.

Take it. APAPs can be run in APAP mode or CPAP mode. CPAPs can only be run in CPAP mode.

Make sure you get a data capable machine.

Thanks, and that was what I was hoping to hear.

I know that this is an impossible question to answer, but I will ask anyway. If the machine works for me, does anybody know how long it takes for the stress on the heart to diminish. I ask because this is my last attempt at cardioversion, so I want it to count, and I can still reschedule it for later in April.

Afib is common in untreated OSA, but often improves or even goes away once on Cpap, but as you guessed, predicting when, let alone who is impossible, though I imagine it could even be almost immediate if your cardiac status is otherwise good. Definitely get an Apap (can always be run as a Cpap). Definitely get one that gives full data, without Escape or Plus in the name, as the only data they give is for insurance compliance and not therapy info. Once you have a useful machine, you can then download (free) Sleepyhead software and track your progress every night through many parameters. Most of us do it, and get a good picture of what goes on overnight, and are then able to tweak pressures, etc. to optimize treatment.

Julie wrote:Afib is common in untreated OSA, but often improves or even goes away once on Cpap, but as you guessed, predicting when, let alone who is impossible, though I imagine it could even be almost immediate if your cardiac status is otherwise good. Definitely get an Apap (can always be run as a Cpap). Definitely get one that gives full data, without Escape or Plus in the name, as the only data they give is for insurance compliance and not therapy info. Once you have a useful machine, you can then download (free) Sleepyhead software and track your progress every night through many parameters. Most of us do it, and get a good picture of what goes on overnight, and are then able to tweak pressures, etc. to optimize treatment.

I am not counting on it to go away, but it would be a nice early birthday present. So you can take the data and hook into your PC? That would be very helpful. But it sounds like APAP is the winner.

My hearts enlarged, but otherwise good (the cardio expects the heart enlargement to go away now that my resting heartrate is no longer so high).

Thanks.
(Is there a trick to these confirmation codes when posting? I am running well below 50% in trying to differentiate "0" and "O").

Get a data capable apap. Pills are not a long term solution to proper sleep. I'm thinking your heart issue will deminish. I had a lot of issues that went away after receiving good cpap therapy. How long will it take? You'll need to adjust to cpap (start getting proper therapy). Some people take time to adjust . Finding a comfortable mask that doesn't leak...etc... Once you get a bunch of good nights of therapy under your belt, your body will start to heal.

Sheriff

at_war_with_bugs wrote:If the machine works for me, does anybody know how long it takes for the stress on the heart to diminish.

Sure, I know. If the stress you are referring to comes from sleep apnea, the stress on the heart goes away as soon as your CPAP therapy works well.

Think about it. You are choking badly at night and your sleep is constantly interrupted. This is horrible stress on the heart. You use CPAP successfully, the choking stops and your sleep is no longer interrupted. The stress is gone.

at_war_with_bugs wrote:(Is there a trick to these confirmation codes when posting? I am running well below 50% in trying to differentiate "0" and "O").

There is a solution. Register (free) and use the login. Confirmation codes gone.

Most all people need and appreciate a support group. The best use of a support group is by people who are registered.

You need to find out the exact model APAP that is proposed. Then, before you accept delivery, run it by the forum and ask if it is truly data capable.

If you accept delivery and later find out it is not data capable, you may be screwed as far as getting the DME to replace it.

It doesn't seem like you're treating the root cause.

Try an APAP machine (buy it yourself if need be), and figure out the right mask.

I'm ~2 months into this, and finally starting to figure it out.

GL!