Frustrated with seeming OSA misdiagnosis. Can I ask them to re-read my study?

[radler]

That seems to be the best course of action.
Do that--and please let us know how it goes. (In THIS thread)

Sorry, which post is the best course of action?

[chunkyfrog]

This one.>>>>>

It’s all a process you won’t get a Bipap or some other high end machine until you have uses an APAP that’s the way these things work. Get tha APAP prescribed use the machine and see how it goes, if it doesn’t work move on to the next one.

The process is pretty much set in stone.
Trying to change it or get around it will only waste your time.
Just color inside the lines, and you should be OK.

[ChicagoGranny]

Strange. Everyone I’ve ever mentioned it to has acted like I’m insane.

Maybe it would help if you define more carefully what you mean.

Here is an example. Beginning weightlifters have to be taught how to breathe. To properly breathe during strength training, inhale on the eccentric phase and exhale during the concentric phase. The tendency for a beginner is to hold his breath on the concentric phase, and, in general, breathe irregularly. Irregular breathing and holding of one's breath are common in mundane tasks like house cleaning and working at a desk.

People doing cardio training also need to develop regular breathing patterns which become a habit over time.

Now, when sleeping, you should breathe rhythmically because your conscious mind is not interfering with your autonomous system. Not breathing rhythmically during sleep is abnormal.

[radler]

Strange. Everyone I’ve ever mentioned it to has acted like I’m insane.

Maybe it would help if you define more carefully what you mean.

Here is an example. Beginning weightlifters have to be taught how to breathe. To properly breathe during strength training, inhale on the eccentric phase and exhale during the concentric phase. The tendency for a beginner is to hold his breath on the concentric phase, and, in general, breathe irregularly. Irregular breathing and holding of one's breath are common in mundane tasks like house cleaning and working at a desk.

People doing cardio training also need to develop regular breathing patterns which become a habit over time.

Now, when sleeping, you should breathe rhythmically because your conscious mind is not interfering with your autonomous system. Not breathing rhythmically during sleep is abnormal.

I used to run and lift weights when I was healthier so I know a bit about that. I don’t know anyone who forgets to breathe for so long while awake that they suddenly gasp for air because they realize they’re getting dizzy and grey-visioned. Definitely not several times a day most days, I don’t think. Not sure how else you want me to describe it.

[chunkyfrog]

I suspect the sudden gasp is not always conscious; as if it were, you would need a ventilator 24-7.
Sometimes, we tend to hold our breath when conscious, but breathing is regular during sleep.
If your autonomic breathing reflex is deteriorating, it would be noted in any sleep study.

[kteague]

I may have missed this already being covered, but just in case, it will be to your advantage if your insurance does rentals for a while and not an outright purchase. In theory it should be easier to get a change approved and to move up the machine delivery modes if needed. I would support getting an in-lab study if feasible. Now, if that is a lot of expense or effort for you, you could always get a recommended machine and see if the data indicates the need for further study then make that decision. Right now you're making decisions without many hard facts, which puts you at a disadvantage. In the deep dark recesses of my memory from when awareness of this all started for me, it seemed to me even my daytime breathing was disordered. After some time on therapeutic CPAP treatment things leveled off - less shallow breathing, less prolonged breathing holding. You may indeed have central sleep apnea, and that would merit investigation. Or it may be things are so out of whack they need some time to normalize. Seems your path of least resistance is to get a machine and see what the data looks like. Same end goal, just less hassle than fighting for something you don't really know that you need. I can see why you don't have much confidence in your home study reports when documentation seems standardized rather than specific to your study. Hopefully going forward you can, one way or another, get some data you can have more confidence in.

[ChicagoGranny]

I don’t know anyone who forgets to breathe for so long while awake that they suddenly gasp for air because they realize they’re getting dizzy and grey-visioned. Definitely not several times a day most days, I don’t think.

I don't know anyone like that either. The closest that comes to it is asthma or emphysema.

Also, it contradicts your test results:

Nerdy stats: I had 0 apneas, 74 total hypopneas

What is your BMI?

[radler]

I don’t know anyone who forgets to breathe for so long while awake that they suddenly gasp for air because they realize they’re getting dizzy and grey-visioned. Definitely not several times a day most days, I don’t think.

I don't know anyone like that either. The closest that comes to it is asthma or emphysema.

Also, it contradicts your test results:

Nerdy stats: I had 0 apneas, 74 total hypopneas

What is your BMI?

Like I said, I don't seem to have the apneas while taking a high enough dose of temazepam. It just switches to hypopneas (without snoring). As far as I understand it, temazepam should do the opposite if I had OSA or OHS.

My BMI is 32 right now, but like I said before, I have had issues with this at almost every weight I have ever been, including a BMI of around 17-19 my whole childhood. My BMI was around 23 when I started having the worst sleep problems of my life, and unsurprisingly I gained weight soon after. I had a temporary reprieve for a few years (at least from what my body felt like and my partner told me I slept like) when my BMI was at its highest, around 35-38, so IMO I don't see a clear connection between my BMI and the symptoms.

I won't lie: lot of my frustration is that I feel like this doctor I have never met just saw my current BMI and decided to ignore my PCP's notes/requests and instead give me substandard care, because BMI over 30 = obviously just OSA. I understand Occam's razor and all that, but that doctor's job was to rule out all the other things, not decide before even looking at my sleep study that I must have OSA. My weight probably doesn't *help* my breathing, but I've slowly been losing weight over the years for unrelated reasons anyway. This is a lifelong problem for me that doesn't seem to correlate with my BMI, just my overall physical health. It usually happens a lot right before or around the same time I get hospitalized with unrelated(?) issues.

Honestly, posting here is just making me more frustrated. I have suffered for decades because doctors (or occasionally other laypeople) convinced me I totally had [insert completely wrong but more common diagnosis] or that everyone experiences that, to the point where I started doubting my ability to interpret sensations from my body. I almost died from a terrible NP convincing me I was exaggerating how much pain I was in. If I hadn't trusted my gut and been stubborn and seen a different provider, I would have probably died within 24 hours. So all I'm going to say is that I have kept track of my sleep/breathing symptoms for years, I know what I'm experiencing, and I know OSA is the wrong diagnosis. I guess I'm just going to have to be stubborn again and get a referral to a neurologist.

[radler]

I may have missed this already being covered, but just in case, it will be to your advantage if your insurance does rentals for a while and not an outright purchase. In theory it should be easier to get a change approved and to move up the machine delivery modes if needed. I would support getting an in-lab study if feasible. Now, if that is a lot of expense or effort for you, you could always get a recommended machine and see if the data indicates the need for further study then make that decision. Right now you're making decisions without many hard facts, which puts you at a disadvantage. In the deep dark recesses of my memory from when awareness of this all started for me, it seemed to me even my daytime breathing was disordered. After some time on therapeutic CPAP treatment things leveled off - less shallow breathing, less prolonged breathing holding. You may indeed have central sleep apnea, and that would merit investigation. Or it may be things are so out of whack they need some time to normalize. Seems your path of least resistance is to get a machine and see what the data looks like. Same end goal, just less hassle than fighting for something you don't really know that you need. I can see why you don't have much confidence in your home study reports when documentation seems standardized rather than specific to your study. Hopefully going forward you can, one way or another, get some data you can have more confidence in.

Thank you. My issue is that it takes a minimum of 3-4 weeks just to get any kind of DME, and much longer than that to get a sleep lab study scheduled—especially because right now they're not even scheduling those until the pandemic situation calms down. (As they should! It's just frustrating.) A lab study would probably be good at some point! It should theoretically be free right now if they don't pull similar stunts as this home study lab did! But I'll take any kind of data right now.

I am hoping to get some kind of machine, preferably this weekend. But if my prescription says I can get an "auto CPAP/BPAP" machine, and if I'm planning to buy a used unit out of pocket anyway, why am I being discouraged from starting with an affordable used auto BPAP machine? I know there are potential health issues with ASV if you have specific conditions, but I'm not aware of any issues with BPAP itself—am I missing something?

[Pugsy]

if my prescription says I can get an "auto CPAP/BPAP" machine, and if I'm planning to buy a used unit out of pocket anyway, why am I being discouraged from starting with an affordable used auto BPAP machine? I know there are potential health issues with ASV if you have specific conditions, but I'm not aware of any issues with BPAP itself—am I missing something?

If your pocketbook can afford it there's absolutely nothing wrong with getting one of the regular auto bilevel machines.
They aren't anything more than cpap/apap machines with more exhale relief, ability to use higher pressures if needed and have a few little custom tweaks that can maybe help with some comfort issues breathing.

I am using one of them myself just because I like a little more exhale relief than I can get with regular apap. I found a good deal on one privately and I bought it. Yes, I could get by with the regular apap but I waited until I could find the auto bilevel that fit my pocketbook and I bought it.

BTW....the term "bipap" is actually a Respironics trademark term that has sort of become an industry generic term for bilevel machines but the only machine that is actually called "BiPap" is a Respironics bilevel machine.
ResMed calls their current model bilevel machines AirCurve 10....and if you are going to get an auto bilevel...I strongly urge you to get one like I am using...the ResMed AirCurve 10 VAuto. I own (back up machine) a Respironics auto bilevel machine but I prefer to use the ResMed auto bilevel for a number of reasons.

Now if you really do have an issue with central apneas it won't fix those issues but it will tell you if you do and then you can decide what you want to do about them.

[radler]

if my prescription says I can get an "auto CPAP/BPAP" machine, and if I'm planning to buy a used unit out of pocket anyway, why am I being discouraged from starting with an affordable used auto BPAP machine? I know there are potential health issues with ASV if you have specific conditions, but I'm not aware of any issues with BPAP itself—am I missing something?

If your pocketbook can afford it there's absolutely nothing wrong with getting one of the regular auto bilevel machines.
They aren't anything more than cpap/apap machines with more exhale relief, ability to use higher pressures if needed and have a few little custom tweaks that can maybe help with some comfort issues breathing.

I am using one of them myself just because I like a little more exhale relief than I can get with regular apap. I found a good deal on one privately and I bought it. Yes, I could get by with the regular apap but I waited until I could find the auto bilevel that fit my pocketbook and I bought it.

BTW....the term "bipap" is actually a Respironics trademark term that has sort of become an industry generic term for bilevel machines but the only machine that is actually called "BiPap" is a Respironics bilevel machine.
ResMed calls their current model bilevel machines AirCurve 10....and if you are going to get an auto bilevel...I strongly urge you to get one like I am using...the ResMed AirCurve 10 VAuto. I own (back up machine) a Respironics auto bilevel machine but I prefer to use the ResMed auto bilevel for a number of reasons.

Now if you really do have an issue with central apneas it won't fix those issues but it will tell you if you do and then you can decide what you want to do about them.

Thanks! I’ll probably go with an s9 or system one bilevel for my pocketbook’s sake. It looks like they have about the same level of data as the newest models, right? It appears the s8 and M series don’t detect centrals, so I will avoid going that far back. And yes, I know bipap is technically a trademarked term, but that’s what my prescription says and that’s what people commonly call it.

Are there any non-ASV VPAP machines with auto settings? I’ve been shying away because the settings look complicated, but it looks like they provide tidal data? I feel like having tidal data and SPO2 data would be helpful. I have a pulse oximeter.

[Pugsy]

I think the older auto bilevel auto machines have tidal volume data but let me go back and look at my software reports just to make sure.

The settings aren't really that complicated. Don't let Ti max or Ti min or trigger stuff scare you....most people will do very well with the factory defaults in those settings.

The older bilevels will be a little less costly.
Respironics PR System One Auto bilevel....make sure you get the model 760 and not the 750.
The S9 version would be the ResMed S9 VAuto

I have a PR System One Auto BiPap model 760 that has already been heated hose converted that I don't really need and I would be willing to sell it if you decided that you wanted to try it.
Complete unit including humidifier and heated hose, travel case....around 1600 hours of use.
$250 and that includes shipping within the USA.
Send me a PM if you are interested and I will give you all the details on its history and I can check actual hours.

[zonker]

I have a PR System One Auto BiPap model 760 that has already been heated hose converted that I don't really need and I would be willing to sell it if you decided that you wanted to try it.
Complete unit including humidifier and heated hose, travel case....around 1600 hours of use.
$250 and that includes shipping within the USA.
Send me a PM if you are interested and I will give you all the details on its history and I can check actual hours.

ladies and gentlemen, our esteemed moderator.

standingO.gif

pugsy, you are one in a million.

[chunkyfrog]

Just wondering how long you have been taking temazepam.
Side effects of such a powerful drug need to be examined thoroughly.
If your doctor is incompetent, perhaps a referral to someone more attentive is in order.

[radler]

Just wondering how long you have been taking temazepam.
Side effects of such a powerful drug need to be examined thoroughly.
If your doctor is incompetent, perhaps a referral to someone more attentive is in order.

I was put on it about 9 months ago as needed (which is most but not all nights) after 6 weeks of constant waking up both while falling asleep and about 2 hours into the limited sleep I did get due to "forgetting to breathe." This coincided with being hospitalized several times for complications related to other health issues, just like my last bad round of episodes, so it's probably related.

I don't doubt the temazepam contributes to the hypopneas, but it seems to reduce or eliminate the total forgetting to breathe at night. And I only started taking it after six weeks of having the symptoms. I didn't get a sleep study at the time because I didn't get insurance until January.