From CPAP to APAP to ASV, and vitamin D

This is my first post here. I'll try to make it as compact as possible.

I'm 62, male. I was diagnosed with OSA about ten years ago. They told me my sleep study AHI was 42/hour. I got a CPAP machine with nasal mask and used it faithfully for over nine years. I never went back for any followup, and they never called. I felt fine and believed the CPAP had fixed the problem. A couple of years ago, I noticed I was feeling a little ragged, but nothing extreme; and my blood pressure was up. But so was my weight, so I didn't think too much about it. Last summer, I decided I should get a new CPAP, hoping for a more compact one, for travel purposes. I have no idea what my AHI was, because the old machine had no measuring capability.

I quickly learned that to get a new machine, you need a new prescription, so I called the doc. They had to dig out my file from storage. They said it was amazing I was still using the same machine (a ResMed, I think) all that time, and they usually don't last that long. They also said the machine had probably lost pressure, and that's why I was feeling a little worse. So I went in for an appointment and the pulmonologist told me there was no need for a new sleep study; he'd just upgrade me to an APAP that would adjust automatically to my needs. So, about a month later, a Phillips DreamStation was delivered, with the same kind of nasal mask.

I became infatuated with the digital readout each morning. I was told my AHI should be 5 or lower. The first night it was 9, then it went down to 7, then 6, then a few 5s. Then it started to go up. Soon it was back up to 9, then 12, then 15, and I even got a few 20s. And it was showing a high percentage of "periodic breathing," whatever that meant. I Googled it and learned about central apnea, which I had never even heard of before, and started to get scared. And the more scared I got, the worse my AHI was. I of course called the doctor back. The problem was, the DreamStation was delivered without a modem. They said they didn't have them in stock. So when I went in for my visit to discuss this (I brought the machine), they didn't have the data, and for some reason couldn't get it from the card. So I got no useful info. They advised me to get a cardio checkup, which increased my anxiety. I hadn't been to a cardiologist in a long time, so I was overdue anyway. As you can tell, I'm a bit afraid of doctors.

Soon, they got the modem in and the doctor could see the data, and another sleep study was scheduled. It was confirmed that my apnea was now "complex", with some centrals. The doctor strongly urged me to stop obsessing over the AHI numbers, so I did. But I learned that my average was 15, mostly centrals. I had my cardiologogy visits, echocardiogram, etc. Everything was normal there, except for the hypertension that I already knew about and was taking a medication for.

Then they had to schedule yet another sleep study, for an ASV titration. Apparently this was successful and I was informed that I'd be getting an ASV to replace my DreamStation. In fact, that will be delivered next Tuesday.

In the meantime, however, I started researching things and discovered the web site and videos of Dr. Stasha Gominak, a neurologist in Texas. She found that all of her neuro patients, when tested, had sleep disorders, with a very high percentage having apneas. She came to the opinion that all apnea is autonomic, not just central. She got the idea to start treating her patients with high enough doses of vitamin D to bring their blood levels to the 60-80 ng/ml range. On regular lab tests, 30-100 is considered "normal" and most people are well below 30. She claimed that as her patients approached 60 ng/ml, their sleep improved, sometimes substantially. She's not a "vitamin doctor" so it took her a while to accept this. She also recommends supplementation with B complex.

So, around the end of January, I started taking D supplements. At first, I was cautious, taking only 1,000 or so IU a day. Eventually, I increased to 10,000 IU a day. I didn't get my level checked until a few days ago, but I was using an app (dminder) that estimates. When I got the lab result back, it was 40, almost exactly what the app had estimated.

But here's the interesting part. I started checking my AHIs again, and as of the last couple of weeks, they started to drop from 15 or higher. This week they've been 10 or 9 all week. I wonder if they'll go lower as my D level goes higher. I'm increasing my dose to 20,000 IU, to try to reach 60 asap.

Now I'm wondering whether I should postpone switching to ASV to see where the D supplementation takes me. Any opinions?

Sorry for the long post, especially since it's my first post!

tmoodz wrote:In the meantime, however, I started researching things and discovered the web site and videos of Dr. Stasha Gominak, a neurologist in Texas. She found that all of her neuro patients, when tested, had sleep disorders, with a very high percentage having apneas. She came to the opinion that all apnea is autonomic, not just central. She got the idea to start treating her patients with high enough doses of vitamin D to bring their blood levels to the 60-80 ng/ml range. On regular lab tests, 30-100 is considered "normal" and most people are well below 30. She claimed that as her patients approached 60 ng/ml, their sleep improved, sometimes substantially. She's not a "vitamin doctor" so it took her a while to accept this. She also recommends supplementation with B complex.

Vitamin D3 therapy has been discussed here several times before. Go to the search box under the CPAPtalk logo above and search for Vitamin D3 and Dr. Gominak... both should pop up lots of results. Glad to hear you're sticking with the research and your PAP endeavor. You will also be able to get lots of ASV help here when you get your machine next week.

Thanks for posting. Lots of info. I am sure you will get lots of replies.

I would like to comment from experience. I had low "D" level of 19 and with 7K IU of d3 it is now 65. I did not see any change in my AHI.

However I did experience the increase and decrease of my CA's. My study showed some but when I went on APAP they went way up. Then I went to a bi-level, and they went up to 20+. Now I have very few. Two things happened. First I was having pressure induced CAs and the PS on bi-level and the respiratory relief on the autopap was causing the biggest part of the problem. Secondly, my body started to adjust to the pressure and that caused the CAs to go down also. Hope this gives you something to think about.

I now use my bi-level with a PS of 1. When I try to raise it (PS), my CAs go through the roof

EDIT Took out "like you a bi-level" Replaced with "then" The point I was making was going from a cpap single pressure to using PS on a bi-level or respiratory relief on an APAP was my biggest problem

lilly747 wrote:Thanks for posting. Lots of info. I am sure you will get lots of replies.

I would like to comment from experience. I had low "D" level of 19 and with 7K IU of d3 it is now 65. I did not see any change in my AHI. However I did experience the increase and decrease of my CA's. My study showed some but when I went on APAP they went way up. Like you, I went to a bi-level, and they went up to 20+. Now I have very few. Two things happened. First I was having pressure induced CAs and the PS on bi-level and the respiratory relief on the autopap was causing the biggest part of the problem. Secondly, my body started to adjust to the pressure and that caused the CAs to go down also. Hope this gives you something to think about.

Thank you. I accidentally posted that under the unregistered name "tmoodz", but it's me.

I'm not quite clear on the difference between BiPAP and ASV. When I had my recent ASV titration, I experienced the somewhat annoying phenomenon of the machine "puffing" into my nose when it thought I should inhale, as I just lay there not yet asleep. But I still managed to fall asleep without much difficulty (considering I was in the lab, with 32 wires on me, a camera watching me, a meter on my finger, and a really crappy pillow).

Even though I'm a veteran apneac (apneist?), I'm not fluent in the terminology. What you're calling "pressure-induced CA" is/was...what exactly? The exhalation pressure on your APAP was so low compared to what you were used to on CPAP that you weren't inhaling when you should?

When I went for my sleep study to determine whether I was having CAs, they did a "split" night. That is, for the first several hours I had no PAP at all. This, supposedly, was to satisfy the insurance company that I really have sleep apnea. I'm sure I was a train wreck. Then they put me on a CPAP for the rest of the night, and later said they saw CAs. So those wouldn't be pressure-induced, or would they?

Concerning vitamin D, thanks for sharing your experience. Dr. Gominak doesn't claim that D cures apnea, but she does find that it makes it less severe in most cases. We'll see what happens when my level gets up to where yours is. Of course, if the ASV is effective, I may not be able to discern any effect of the D (if there is an effect). That's why I wonder if I should wait before going to ASV. My current AHI of 10 isn't causing me any great problems.

tmoody wrote: I wonder

You should start using Sleepyhead - https://sleep.tnet.com/resources/sleepyhead .

All the regulars on here do.

tmoody wrote:I'm not quite clear on the difference between BiPAP and ASV.

Well for one thing an ASV will treat CAs and a bi-level does not.

tmoody wrote:Even though I'm a veteran apneac (apneist?), I'm not fluent in the terminology. What you're calling "pressure-induced CA" is/was...what exactly? The exhalation pressure on your APAP was so low compared to what you were used to on CPAP that you weren't inhaling when you should?

No, It was the changing pressure that was causing me to have CAs. Too much simulation.

Also see my edit above. Hopefully a much more experienced board member will chime in and explain the difference between pressure induced and Neuro CAs.

I see you had a 2nd study to check for real CAs so I hope I have not just confused you/the situation...good luck
glad your here

Sir NoddinOff wrote:Vitamin D3 therapy has been discussed here several times before. Go to the search box under the CPAPtalk logo above and search for Vitamin D3 and Dr. Gominak... both should pop up lots of results. Glad to hear you're sticking with the research and your PAP endeavor. You will also be able to get lots of ASV help here when you get your machine next week.

Yes, I found a few discussions of D and added some thoughts to one. I really don't know what to expect from all that, but I take the view that if there's something I can do that might be helpful, with negligible risk, it only makes sense to try it. The link that Dr. Gominak suspects between D levels and sleep disorders is speculative and unconfirmed, except for her own clinical experience, but there are much better documented connections between D and other health concerns, so all the more reason to try it.

When I first discovered the "periodic breathing" at about 25% on my DreamStation display, I had no idea what that meant. I still don't really understand it, but it led me into the topic of CSA, which is itself more than a little baffling and frightening. It's as if I forget how to breathe when I fall asleep. How is that possible? I read articles connecting it with PTSD, obesity, and...everything but the kitchen sink. When I brought all of this up with my pulmonologist, he asked me a bunch of questions and, based on my answers, seemed to be ruling a lot of things out. He then confessed that a lot of CSA that he sees is "idiopathic", and he thinks the 15% that emerges after long CPAP use is an understatement of the reality. Other than having me get my heart function checked by a cardiologist, he wasn't terribly interested in speculating about causes.

At 6'1", 245 lbs., I'm obese. One article I saw said anyone with a BMI over 30 is at risk for complex apnea. My BMI is 32.3, and has been higher. I'm down 20 lbs. since last summer. But I'm pretty sure there's more to it than just obesity.

Having read that playing the didgeridoo is good therapy for OSA, I bought one and learned to play it. It's great fun, and for all I know actually reduced my OAs. That's another one of those things that might help and can't hurt.

I just hope there isn't an iatrogenic component to this, that the ASV will make worse.

Hi tmoody. How did the vitamin d experience go. Did you come to a conclusion whether it helped or not?