Kind of scared, split sleep study again after almost 20 years on PAP

[Gryphon]

What do you all think aboout having to do a "Split sleep study" to determin new 'Baselines" after having been on XPAP for almost 20 years?

This isn't to determin if I still have apnea (it's assumed I still have it and it hasn't gone anywhere) this is more as an insurance formality, i'm setting up with a new sleep med provider. Other then having to do the study, all my interactions with them have been positive.



Have any of you had to do this?

What was it like sleeping with out your machine?



I've had micro naps in office chairs, or fallen asleep for a little bit sitting upright in a chair, even then I'd usualy wake up feeling stressed or short of breath, but...

Reason for my axiety about sleeping with out my machine even for a little bit, The last time I full on fell asleep with out my machine on my back in a bed, I had a full on sleep terror/panic attack - lucid dream were I was in a crouded place franticly tugging on people pleading with them for help because I couldn't breath, my heart rate went nuts, I ended the dream surouned by people trying to "help" it felt like I was drowning as I slowly blacked out with my ears ringing, transitioning into waking up in real life, gasping for air with my ears still ringing and with a massive headache. I could still feel the pure panic physiicaly in my body like the dream was real.

So needless to say I've been very compliant patient when it comes to using my machine and the thought of falling asleep with out it is kind of terifying.

I know that if I'm going to "Sleep with out my machine" best place to do it is in sleep lab, but I'm just hoping that I don't have a repeat of the last time.

I thought about sharing my experiance with the doctor and asking them if they are able to determin that I'm in some kind of distress can they please just wake me up and say "to heck with the baseline data" I'd really rather not re-live a similerly horrible dream or have that sufocation feeling happen all over again just to check a box off on an insurance form.

i'm just trying to feel out what I might expect, has anyone else with profoundly bad apnea had to do this sort of "re-test" with out your machine and have you had similer experiances with panic or stress from apnea like I did.

when I was originaly tested my apnea didn't get realy scary till I went into REM so my above experiance might just be my worse case senario and maybe it'll be no big deal, still the thought of re-living my last experiance has me really worried.

Any advice you all could give or any info you can share would be great.

Thanks as always for everything.

Rest well,

Gryphon

[ChicagoGranny]

insurance formality, i'm setting up with a new sleep med provider.

Who is telling you that a new study is required? Talk to your insurance company. This sounds like a trick by the new sleep doctor to get billings for his sleep lab.

I will never do a new study. My doctor gives me a letter once per year that says I use CPAP and benefit from it. This serves as an authorization for my DME to file Medicare claims for supplies. And since my sleep doc retired, my GP does the letter for me.

If someone ever insists I have to have a new sleep study, they are going to have one of the worst days of their life.

[McSleepy]

Funny enough, that was also my experience: when I got my last machine, my sleep doctor (whom I've used for years), said "you're lucky, it's almost 10 years since your last sleep study, but next time you need a new CPAP machine, you'll need a new sleep study for the insurance to approve it". So just last week, I called my insurance (Blue Cross Blue Shield) and asked multiple reps and they all said that there is no such requirement on their end!? I figured that maybe some insurances do and my doctor might have run into that a few too many times, but now I see that may not be the case. I can get a new machine covered by insurance next summer, so if my sleep doctor makes those claims again, after I explain to her that my insurance doesn't have that requirement, I'll just move on and ask my PCP to prescribe it (she's cool). I'm not having another sleep study for administrative purposes. I'm not afraid - with all those sensors you're hooked up to, they won't let you suffer or be hurt; I just won't sleep and be tired. I just don't want to do useless things.

McSleepy

[chunkyfrog]

I would ask Medicare if this stunt is LEGAL.

[vandownbytheriver]

Neither Medicare nor UHC PPO required a study, it's up to your doctor... doing another bare-knuckle study is torture for someone that's been years on the hose. My doctor wanted it, so I thought I could take three Benadryl and get it done... no way Jose`. One Ambien would not have been enough either. You've felt it, the panic that snaps you awake as your O2 desats? Training your body to hate sleep!

They will discontinue the study if you reach some outrageous level... something like into the 70's. No way my body will let me get that bad, I'm bolt upright awake panting hard.... I 'failed' the study. They claimed they barely got enough data to give me an AHI of 27! My original AHI was 104, 14 years and 100lbs ago... ludicrous.

Demand a titration instead of a study... might as well get bi-level while you're at it. Demand an Ambien for it... I got one and it helped some... I go to bed late and laying around for an hour to get to sleep just wastes time.

[Gryphon]

A little background:

My childhood and early adulthood is full of sleep-related shenanigans, from sleep terrors, sleepwalking (go to bed in my room, wake up downstairs on the sofa), really bad RLS (not just legs but everywhere), to lucid nightmares the likes of which could provide fodder for horror and dark torture fantasy writers, also really amazing dreams that felt almost like I was getting to see heaven. I think I was high as a kite on endorphins, think of it like riding on a nightmare teeter totter, were I was being dipped into torture then bouncing up into nirvana, then back into torture all night. How I remembered the night depended on what state I was in when I woke up. (These dream events were fairly common)

I feel this is one of the big reasons my sleep hygiene is still so messed up even 20+ years later as I get anxiety before I'm supposed to sleep. Something I stubbornly learned to suffer through and live with, but I’m trying to change that, hence the new sleep center.

I’m on insurance provided by my employer, that’s really good.

I'm 46 years old now. I was diagnosed in my mid-20s, though I had an inconclusive test done when I was about 19, in a hospital that was a mess, beginning with missing my diagnosis. I knew I had it when I was first tested (family members were already on PAP at the time) but didn't know how to advocate for myself then. I’m good at getting what I want now, at least as far as equipment to treat my condition, but maybe I still need to work on that (self advocacy) when it comes to my relationship with doctors or service providers.

When I got my official diagnosis, "second sleep test" my doctor said it was “profoundly severe” obstructive sleep apnea. During my test, when I went into REM, my oximetry briefly dropped into the 50s, and I had apneas lasting longer than 2 minutes with no air movement at all. They came in and put me on PAP, and that changed my life. Most of the problems I listed above just went away. No more sleep terrors, dreams mellowed out, more normal or went away, etc.

Since that diagnosis, I've had another "Titration study" for my Bi-level machine that I had to fight to get so I could have a higher pressure threshold as my APAP at the time was hitting its limit and hanging out there most of the night.

The average AHI on my old APAP was 4 to 5, and on bad nights, it could go as high as 11 or 12, so I wanted a bilevel.

The lab titration study sent me home with a shiny new AirCurve, with the weirdest settings the sleep tech must have pulled out of the sky, or maybe switched my script for another patient, I was having multiple central apnea events (which I get if my pressure levels are set too low to start, that was noted in my official diagnosis study they had a copy of). I almost never have central apneas otherwise. My AHI for obstructive apneas was worse (with their settings) on my new Bi-level than on the APAP I was already using.

However, I was a "good little complaint patient" and soldiered on for a week just to give the crazy a chance, then went in and changed the settings to what I had on my APAP but with a higher threshold. (also so I could have a weeks worth of data I could throw in their faces if they gave me trouble for doing it my way)

My numbers right now on my almost 6-year-old AirCurve are AHI of 1 or less most days 0 on good days and maybe 2 or 3 on bad days.

My goal with this new sleep center honestly is to work on all the other “Not Sleep Apnea” sleep issues I still have, and while I’m at it, a script and order for a new machine
[maybe an AirCurve 11, let me know if this is a bad idea, seams like I should just get a brand new Air Curve 10 as the 11 doesn't seam to have the blessing of the forum]

This new place seems to be willing to help with my other sleep related problems that my current sleep doctor didn’t want to bother with. I think the disconnect is they’re treating me like I'm a brand new patient and they want to re-diagnose me. I think it's fair to ask them to skip that part and just assume I still have really horrible sleep apnea going in, and I'd really rather not "F Around and find out," even if it's in a sleep lab with wires and sensors connected to me. I'm not in my mid-20s anymore, and my BP is not properly controlled. I'd prefer not to have a stroke, worse case, or relive my panic nightmare from before, not good for my anxiety ether way.

I just don't see the diagnostic benefit unless someone with more experience can step in and offer a reason. I don't mind the sleep test; I just don't want to sleep without the support of PAP. From what I’ve already heard as responses to my first posting, I’m going to be following up with them and make it clear that I don’t mind a new study, if they think it will discover something but I’m not ok with spending any time “asleep” without the support of my machine so they can experiment.

If they insist because of insurance compliance, I’ll contact my insurance company to confirm, and if they persist I’ll dump them all together and find someone else who will give me an updated script for a replacement machine, and keep looking for someone to help with the rest of my sleep issues.

PS: before any one suggests it, my GP doesn't want to touch any of my sleep apnea stuff, I've brought up the issue with him before, he just tells me I need to work with my sleep provider.

Rest well, Gryphon

[vandownbytheriver]

My goal with this new sleep center honestly is to work on all the other “Not Sleep Apnea” sleep issues I still have, and while I’m at it, a script and order for a new machine
[maybe an AirCurve 11, let me know if this is a bad idea, seams like I should just get a brand new Air Curve 10 as the 11 doesn't seam to have the blessing of the forum]

IMO get a 10 while you still can, the 11 is a tarted-up AirMini with lots of issues. BTW your old 10 is a good candidate for a replacement motor, 130USD on Amazon/Baidu.

I'd be interested in your prescription/actual pressures difference. Choice in labs is good, use Yelp to choose if they make you go in for a SS/titration. Sorry to hear of your sleep problems, make mine seem lame, good luck.

[ChicagoGranny]

When I got my official diagnosis, "second sleep test" my doctor said it was “profoundly severe” obstructive sleep apnea.

I’m not ok with spending any time “asleep” without the support of my machine so they can experiment.

For insurance purposes, you need to make sure your diagnosis of sleep apnea stays intact. You should get a copy of the summary page of the study where you were diagnosed and a copy of the script. Keep them permanently.

[Janknitz]

I have a couple of thoughts on this:

First: Is a sleep study REALLY required by your insurer?
If you are Medicare, it is not. If Medicare doesn't require it, most likely a supplement/Medi-gap plan will not either.
If you are under a private insurer, ASK. You can also check the Evidence of Coverage (EOC) to see if it's required. In most cases, once your sleep apnea diagnosis is established, it's unlikely that the insurer will require a new sleep study, if only because they are EXPENSIVE.

If your sleep apnea is not well treated with your current set up, then a new test makes sense, even if not required by insurance.

But if your sleep apnea is well-treated by your PAP machine--meaning you have a very low treated AHI and no sleep apnea symptoms--WHY is your doctor insisting? Ask your doctor. Does the doctor have a reasonable suspicion that something needs assessment? Or does your doctor own the sleep lab and is looking at this from a revenue perspective? Another recent post where a doctor claimed insurance required a new sleep study was a Kaiser Senior Advantage member, so the doctor was getting no additional remuneration from ordering a sleep study. That one was a head-scratcher.

IF there is good reason to do a new study, keep in mind that you will be monitored, and they will be there to intervene if your apneas are truly bad. But it's hard to imagine a scenario where it's really required unless you are complaining of issues not being resolved by your current treatment. Assuming your insurance is not requiring a new sleep study to pay for equipment or supplies, you always have the right to refuse. And if your doctor is refusing to prescribe unless you do a new study, despite the lack of an insurance requirement, run--don't walk--to a new doctor.