DME forced to send me an SD card! HA!

Hi, this is a bit off topic but I’d like to ask you about your posts from 2010 regarding extreme alpha intrusions causing spontaneous arousals throughout the night. My sleep and titration studies in late February 2020 indicate mild/moderate OSA controlled with CPAP. This is very good news and I am now in the process of getting set up with equipment. My concern is that my OSA level does not explain the severe fatigue I am dealing with. My studies show 48 and 47 spontaneous arousals (the result of no identifying cause) in 6 - 6 1/2 hours, which seems excessive to me and may account for my over the top fatigue level. I don’t see the sleep doctor again until 5/20 but do have a call into his office to ask about it. Honestly I don’t have high expectations of a good explanation as I’ve found very little information online. I have printed out your old posts from sleepguide.com to share with my functional medical doctor at my appointment tomorrow (CFS connection, RX info, UARS, fructose malabsorption & IBS).

Can you shed any light on the situation 10 years after your research and personal experiences? I understand that this site is primarily dealing with CPAP so you may want to
private message me. Any help is greatly appreciated.

PapMom,

Wow. I am surprised that people are going back that far in the archives. I do know that I am contacted about once a year about my old posts. Humbling.

I'm embarrassed to say I don't remember a lot about this topic. My memory is terrible--likely from the combination of depression and the recent untreated OSA--both can cause damage to the hippocampus. It also runs in my family. Both my parents have terrible memories. Though as a child I had near eidetic memory.

If memory serves, though, my sleep doctor at the time (a pulmonologist) thought the discomfort of CPAP was causing it. I remember him being very dismissive when I brought it up. He did not want to talk about Alpha Intrusion. In fact, when I discontinued CPAP around 2010 (after tonsillectomy, sinus surgery, and braces) they said that my OSA had resolved and that continuing CPAP therapy would do me more harm than good.

My most recent polysomnogram did not mention alpha intrusions at all, but it was in a different state with a different team etc. What they DID find was Periodic Limb Movement Disorder. I have never been diagnosed with that before. I found that shocking and I have to wonder if the alpha intrusions are in any way related to the development of that. Pure speculation, of course. Just a random thought. At any rate, my doctor has told me that the PLMD generally resolves with CPAP therapy because better sleep leads to better sleep. And my experience with (the related problem) intermittent restless legs definitely corroborates that--I only get it when I allow myself to be chronically sleep deprived.

The truth is, I don't know any more than you do. In fact you may know more than me because you've read what Past Me wrote and I haven't. Past Me had a better memory. Gosh that's… mortifying.

I'm sorry you're suffering. You may get more out of a neurologist than a pulmonologist, so I hope that's the type of sleep doctor you're seeing. But there may not be any science on this still. I'm sorry to not be more helpful. I'm finding that a little distressing.

That said, don't discount the power of even mild OSA to make you miserable. When I was first diagnosed in 2007 I had 70+ events per hour and I was less debilitated than my recent diagnosis in 2020 with only 11 events per hour. Of course in the intervening years I developed chronic fatigue syndrome/myalgic encephalomyelitis. I've also had depression for most of my adult life (always treated with mind altering drugs.)

That sparks a memory that I'm unsure of and will have to research… something about antidepressants possibly playing a role in alpha intrusion--maybe that was a theory I had at one time?

As you can see, I'm a mess. LOL. Between the OSA, depression, PLMD, CFS/ME… goodness only knows what in 2010 was happening in my brain to cause the alpha intrusions. I promise to reread my posts about them in the coming days and see if it sparks any insight. I'll be back.

My daughter just bought a Resmed Airsense from Cpap.com and it came with a Resmed memory card. I bought my current Airsense from Apria back in December 2016 and it DID NOT come with a card. The people here couldn't believe it.

Sheriff

socknitster wrote: ↑

Sat Mar 14, 2020 11:39 am

I'm currently in "rent to own" mode via my DME/insurance. They warned me that I have a deductible on my insurance but did not ever give me the total cost of my machine. I don't like the games they play like that.

When it comes time, I will be comparing their end price with cpap.com's price to see which is lower and will buy accordingly--especially since the machine they gave me either wasn't set up correctly (regarding the "modem" inside) or the "modem" is not working.

The "total cost for your machine" is not the cost they will bill, it's the total the insurance will pay, minus your deductibles and co-pays. Don't give them a penny without your EOB from the insurer. And don't get upset about the charge on the DME bill. That's the DME's fantasy pricing, not the actual amount they will receive.

My DME confirmed the fact that Airsense machines are no longer arriving with sd cards,
but they will give me one anyway.
They are preferring to mail my supplies, instead of me picking them up.
OK for supplies, but I may insist on coming to their door for my new machine.
Even just standing outside . . .
It is what it is.
Package delivery is too slow, and thievery abounds.

Thank you for responding socknitster. I apologize for my late reply but just picked up my new CPAP equipment yesterday so a lot going on. By the way, I asked the DME for an SD card for my ResMed Airsense 10 autoset three times before she relented and added it to the bag. She kept explaining that I would not need it because the data is automatically sent to them and the doctor but I persevered thanks to you and others on this site! Now I need to work on loading Oscar, format the reports and send them.

I too suffer from memory loss so I understand your position and 10 years is a long time ago. My sleep doctor is a pulmonologist also so I’ll see how he responds to questions about alpha waves and spontaneous arousals at my appointment in May. I suspect that I have chronic fatigue syndrome but have not actually been diagnosed. Fortunately PLMD is not an issue for me.

As for now, I’m focused on getting used to CPAP while I stay home in hopes of avoiding the CoVid19 virus as my asthma puts me in the higher risk group. I’m hoping better sleep will improve my immune system though I realize this will take time.