Just got AHI (24), waiting on CPAP

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Billymadison420
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Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Mon Jul 11, 2022 9:06 pm

Hey folks. 34 year old male year. 5,11 and 160 lbs. I had a sleep study last year. I was diagnosed with Narcolepsy/Hypersomnia. I thought, surely other than some other issues at the time that were devastating my life, that that would explain my tiredness. Before last year I was (and technically still am) a highly functioning person. Good jobs, vacations, touring with a band, being a teacher. The whole 9 yards. However over the last year the fatigue got much much worse. Almost crippling to me. A zombie. So a year went by and I basically ignored treatment for it other than Provigil + Nuvigil. But then it occurred to me. I wake up gasping. Sweating in the bed. My chest feels tight, sometimes my BP is high, and I feel anxious and foggy. I feel like I could pass out anytime and anywhere. Again, I thought maybe the Narcolepsy could explain ALL of that. I went back to the Sleep Specialist for the drugs I mentioned above, and were going to think about moving to Xyrem. To do that, I had to do a sleep apnea test. Well wouldn't you know. AHI of 24.

My study results:
AHI 24
Test Duration 9:34
TST: 4:01
ODI (≥3%): 21events per hour
ODI (≥ 4%): 8 events per hour
T90: 0%
Minimum SpO2: 89%
Maximum SpO2: 100%
pAHI (3%rule): 24
pAHI (4%rule) 6
Impression: Moderate Sleep Apnea

I wait now, for my Resmed Airsense 11. Initially when I contacted the third party (not the sleep specialist) that provides it (and approved it with my insurance) they said something crazy like 6 months. But then I got a call back that said it would be less than 2 months, as its coming from a local distributor and not national. In any case, why I am posting here is this: There is obviously no way for me, or any of you, to know whether my fatigue and brain fog is caused by my Narcolepsy, my Sleep Apnea or both. Is it reasonable to think that I will get some relief from the CPAP? In the future I suppose I could combine the Xyrem and CPAP. But I would LOVE if I just did my Mirtazipine at night (for anxiety and depression, and puts me out) and the CPAP, and then could manage with Provigil/Nuvigil as needed. Anyway, I know I can't borrow worries from the future.

In this forum's experience are some of my symptoms (below) things I could find relief from?
  • Moderate high BP at times (normal in morning, sometimes during the day too)
    Chest tightness
    Palpitations (I have had a holter for this many times, and all comes back as less than 1% PVCS, and not harfmul. I work with a cardiologist. He thinks the CPAP could help)
    Fatigue
    Brain fog
    Malaise
I am so anxious to get my CPAP. And I am so anxious to learn how to use it correctly and effectively, so I can get myself healthier first, and hopefully feeling great second.

Thank you all!

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ChicagoGranny
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Re: Just got AHI (24), waiting on CPAP

Post by ChicagoGranny » Tue Jul 12, 2022 3:29 pm

All of the symptoms you list might be caused by untreated sleep apnea. With good CPAP therapy, you might not need drugs.

Obstructive sleep apnea is often the most severe when sleeping on the back. This is because gravity is directly pulling the tongue and soft palate in the airway. If you sleep on your sides and stomach until your CPAP arrives, you might get some relief from apnea. This can be difficult, so think about tactics to keep off your back in the interim.

Going forward, please stick to this one thread so members can easily see your history.

Welcome!

Billymadison420
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Re: Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Wed Jul 13, 2022 6:36 am

Thank you very much for the reply Chicago granny :-). I almost always sleep on my back, I have since I was a kid. I will find that during the early morning hours and I may wake up sleeping on my side, but it’s very difficult for me to get to sleep sleeping on my side. I’ve bought a sleep apnea pillow that’s on the way, I was suggested that by a respiratory therapist that possibly raising my position may help while I wait for my CPAP. I don’t know if anybody has any experience with that here.

She also mentioned, like I have read a bunch here and on other websites, that I have accrued years of sleep debt and that it will take an adjustment period and time even while it is working effectively to begin to feel better. Is that the general experience of people here?

And finally, do people find that they have insomnia with the mask because of getting adjusted to it? And how did people try to deal with that?

Now I wait for the mask. I will keep you guys posted. Thank you so much for your response.

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Pugsy
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Re: Just got AHI (24), waiting on CPAP

Post by Pugsy » Wed Jul 13, 2022 7:01 am

Billymadison420 wrote:
Wed Jul 13, 2022 6:36 am
do people find that they have insomnia with the mask because of getting adjusted to it? And how did people try to deal with that?
Some do and some don't. You are going to find out that everything associated with cpap and/or masks and/or therapy comes with a huge YMMV sticker.
We do usually suggest that people use the mask and machine while awake for prolonged periods of time (reading, watching TV, etc) when not under the pressure of "I need to fall asleep" so that the brain/body has time to get adjusted to the new normal. The brain will adjust if you give it time.
Billymadison420 wrote:
Wed Jul 13, 2022 6:36 am
She also mentioned, like I have read a bunch here and on other websites, that I have accrued years of sleep debt and that it will take an adjustment period and time even while it is working effectively to begin to feel better. Is that the general experience of people here?
I am not so sure that I go along with the "years of sleep debt" thing that needs to be addressed before people can feel positive effects but there is usually an adjustment period in general just from the newness of everything and it does take a while for the body to seem to heal itself after the years of damage from untreated OSA.
While some people do report significant marked improvement immediately or almost immediately...they are actually in the minority. Most people will tell you that it took a while to see much improvement.
Or they tell you that they saw immediate relief in some areas but other areas the improvement took a lot longer.
Again this is another one of those YMMV things.

Your overall attitude is going to be real important. Negatives are easy to find but positives are somewhat elusive...so look for positives and don't target the negatives so much.
My story...I had immediate improvement in 2 typical OSA symptoms...morning killer headaches and nighttime nocturia.
Those went away within a couple of weeks (took me a couple of weeks to get therapy pressures optimized) but the other stuff was a lot slower to see much difference. It took my brain about 3 months to get to be best friends with the mask even though I actually didn't have any problems with the mask. My brain kept waking me up during the night just to alert me to the fact that "hey dudette, do you know that there is an alien on your face blowing air up your nose?"
My brain did that a lot and of course it messed with my overall sleep which in turns will mess with how we feel during the day. Until we sleep soundly for the most part we just aren't going to feel all that better.

I was one of those people who welcomed my diagnosis because I knew there was a fix for my problem...so I had a real positive attitude about things yet other than the 2 initial symptoms going away quickly, the other improvements took a bit longer. I really expected the cpap machine to fix problems that it couldn't fix....I thought it would change me into a "morning person with tons of energy" then I was sad it didn't....then I realized that never in my life have I ever been a morning person and no matter how good a job cpap did with my OSA prevention it couldn't change me into something I never have been. I had some unrealistic expectations. Lots of people have unrealistic expectations and when they don't meet those expectations they think that cpap "isn't working" but in reality they were expecting cpap to do something beyond what it was designed for.

Be patient and look closely at your expectations so that you don't fall into that trap.

Good luck. Just remember that any question or problem you might face isn't going to be brand new. Lots of people have faced the same thing and worked through it. You will too.

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Billymadison420
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Re: Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Wed Jul 13, 2022 9:10 am

Some do and some don't. You are going to find out that everything associated with cpap and/or masks and/or therapy comes with a huge YMMV sticker.
We do usually suggest that people use the mask and machine while awake for prolonged periods of time (reading, watching TV, etc) when not under the pressure of "I need to fall asleep" so that the brain/body has time to get adjusted to the new normal. The brain will adjust if you give it time.
That's a great idea, as far as having it around while I am awake. For sure it seems like a YMMV situation, based on many factors. Does it seem like how severe the apnea is correlates with this? Obviously, there are tons of other factors.

I am not so sure that I go along with the "years of sleep debt" thing that needs to be addressed before people can feel positive effects but there is usually an adjustment period in general just from the newness of everything and it does take a while for the body to seem to heal itself after the years of damage from untreated OSA.
While some people do report significant marked improvement immediately or almost immediately...they are actually in the minority. Most people will tell you that it took a while to see much improvement.
Or they tell you that they saw immediate relief in some areas but other areas the improvement took a lot longer.
Again this is another one of those YMMV things.
For me the thing I would look for the most, or would want to have the most, would be alertness and not feeling like I could fall back asleep at any point in the day. Other things would be a plus.
Your overall attitude is going to be real important. Negatives are easy to find but positives are somewhat elusive...so look for positives and don't target the negatives so much.
My story...I had immediate improvement in 2 typical OSA symptoms...morning killer headaches and nighttime nocturia.
Those went away within a couple of weeks (took me a couple of weeks to get therapy pressures optimized) but the other stuff was a lot slower to see much difference. It took my brain about 3 months to get to be best friends with the mask even though I actually didn't have any problems with the mask. My brain kept waking me up during the night just to alert me to the fact that "hey dudette, do you know that there is an alien on your face blowing air up your nose?"
My brain did that a lot and of course it messed with my overall sleep which in turns will mess with how we feel during the day. Until we sleep soundly for the most part we just aren't going to feel all that better.
It was interesting on my test. I had 24 awakenings per hour. But that's the average. Almost 90% of them came between 4 AM and 7 AM. The last few hours of me sleeping. I'm hoping it will help with those awakenings where I'm gasping for air. In theory that should result in me getting better sleep. Maybe not 100% difference. But enough to make a difference. I hope.
I was one of those people who welcomed my diagnosis because I knew there was a fix for my problem...so I had a real positive attitude about things yet other than the 2 initial symptoms going away quickly, the other improvements took a bit longer. I really expected the cpap machine to fix problems that it couldn't fix....I thought it would change me into a "morning person with tons of energy" then I was sad it didn't....then I realized that never in my life have I ever been a morning person and no matter how good a job cpap did with my OSA prevention it couldn't change me into something I never have been. I had some unrealistic expectations. Lots of people have unrealistic expectations and when they don't meet those expectations they think that cpap "isn't working" but in reality they were expecting cpap to do something beyond what it was designed for.
I am 100% excited about it because it finally explains why I have felt so horrible for the last couple years. I was traditionally a morning person. I used to be able to go to sleep at 10 PM, and wake up at 6 AM very rested. So something changed over the last five or six years and possibly happened very slowly. But I am also wary about a big letdown by setting my expectations too high.

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Pugsy
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Re: Just got AHI (24), waiting on CPAP

Post by Pugsy » Wed Jul 13, 2022 10:39 am

Billymadison420 wrote:
Wed Jul 13, 2022 9:10 am
It was interesting on my test. I had 24 awakenings per hour. But that's the average. Almost 90% of them came between 4 AM and 7 AM. The last few hours of me sleeping.
It's very possible that your OSA is much worse in REM stage sleep.
Google "sleep stages" and look at the normal hypnograms for when REM happens. Typically it starts about 90 minutes after sleep onset and as the night progresses it comes on more frequently and lasts longer with the greatest amount of REM during those wee hours of the morning.

I have this myself....in non REM sleep my OSA was around 14 per hour average but in REM stage sleep it was 53 per hour.
It's quite common in fact.
Billymadison420 wrote:
Wed Jul 13, 2022 9:10 am
Does it seem like how severe the apnea is correlates with this?
You were talking about the adjustment process I think but I don't really think that how severe someone's apnea might be is any predictor of what kind of adjustment process or time frame that a person will end up needing.
I really didn't need to do the awake stuff myself as I was comfortable with the mask and had no issues with the pressure and I didn't have sensory issues or worry issues keeping me from going to sleep. Everyone is different though.
The only real thing I noticed that I had to do some retraining of the brain was that I kept hearing my own breathing which annoyed me. It's an inside the head thing that I had to learn to tune out. It was like Darth Vadar in my ear. :lol:
It's conducted noise though and there are ways to deal with it if it occurs. My husband never heard a thing and in fact he couldn't hear my breathing or my machine being on.

My "experience" with awake using the machine/mask consisted of 2 minutes to make sure it was all working. :lol:
But I do recommend that most people give it a daytime, under no stress to fall asleep, test so there are no unpleasant surprises.

Another one of those YMMV things....everything, and I mean everything, related to cpap, mask, sleep or whatever will come with that sticker. It's probably the only real absolute statement about cpap...EVERYTHING HAS THE YMMV STICKER.

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ChicagoGranny
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Re: Just got AHI (24), waiting on CPAP

Post by ChicagoGranny » Wed Jul 13, 2022 11:07 am

Billymadison420 wrote:
Mon Jul 11, 2022 9:06 pm
I wait now, for my Resmed Airsense 11.
I overlooked this in my reply. ResMed AirSense 11 is a product series that includes three different models: AutoSet, CPAP and Elite.

I hope you are getting the AutoSet. Personally, I would refuse delivery if it were the CPAP or Elite. Those two models are fixed pressure machines. Auto machines are much more popular and useful for experienced users.

Billymadison420
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Re: Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Wed Jul 13, 2022 11:23 am

It's very possible that your OSA is much worse in REM stage sleep.
Google "sleep stages" and look at the normal hypnograms for when REM happens. Typically it starts about 90 minutes after sleep onset and as the night progresses it comes on more frequently and lasts longer with the greatest amount of REM during those wee hours of the morning.
That is very interesting! Narcolepsy is too much REM. My sleep doctors and I haven't treated that yet (at least the root cause, we have used daytime stimulants). Xyrem/Xywave would be the treatment for that. But its a super serious drug. But knowing, that maybe the extended REM in combination with the Sleep Apnea could be causing the major EDS symptoms is encouraging.

I am hoping that just the CPAP treatment + maybe daytime stimulants when needed are enough to make me feel well, but it may take more (the Narcolepsy treatment). Looks like this is alllll going to be a trial and error process.Thanks for the info!

You were talking about the adjustment process I think but I don't really think that how severe someone's apnea might be is any predictor of what kind of adjustment process or time frame that a person will end up needing.
I really didn't need to do the awake stuff myself as I was comfortable with the mask and had no issues with the pressure and I didn't have sensory issues or worry issues keeping me from going to sleep. Everyone is different though.
The only real thing I noticed that I had to do some retraining of the brain was that I kept hearing my own breathing which annoyed me. It's an inside the head thing that I had to learn to tune out. It was like Darth Vadar in my ear. :lol:
It's conducted noise though and there are ways to deal with it if it occurs. My husband never heard a thing and in fact he couldn't hear my breathing or my machine being on.
Oh! I Misspoke. I was referencing was the level of apnea analogous to the level of relief. i.e severe folks would see major relief, moderate some relief, etc etc...


Thank you so much for taking the time to write a reply. This is all new to me. I am very frustrated with this process and feeling horrible all the time. But I am also excited that I am close to getting some help.

Billymadison420
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Re: Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Wed Jul 13, 2022 11:26 am

ChicagoGranny wrote:
Wed Jul 13, 2022 11:07 am
Billymadison420 wrote:
Mon Jul 11, 2022 9:06 pm
I wait now, for my Resmed Airsense 11.
I overlooked this in my reply. ResMed AirSense 11 is a product series that includes three different models: AutoSet, CPAP and Elite.

I hope you are getting the AutoSet. Personally, I would refuse delivery if it were the CPAP or Elite. Those two models are fixed pressure machines. Auto machines are much more popular and useful for experienced users.
This is great info, thank you! I believe its the Autoset. I will triple-check. Thank you!

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Re: Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Thu Jul 14, 2022 6:56 am

So I spoke this morning with my Sleep Specialist.

He felt that I should be using a BiPAP, not a CPAP. He felt that I should be using a Res Med air sense 11 BiPAP. Additionally they won't be available with my insurance for months and said that the only way to get them immediately would be to buy them outright. I technically could afford it. But I don't know what you guys think. He also felt that the BiPAP may help but it's more than likely that the narcolepsy is what needs the treatment to get me feeling better.

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ChicagoGranny
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Re: Just got AHI (24), waiting on CPAP

Post by ChicagoGranny » Thu Jul 14, 2022 7:17 am

Billymadison420 wrote:
Thu Jul 14, 2022 6:56 am
He felt that I should be using a BiPAP, not a CPAP.
Why? What was your diagnosis? What are your prescribed pressure settings?

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Pugsy
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Re: Just got AHI (24), waiting on CPAP

Post by Pugsy » Thu Jul 14, 2022 7:19 am

I don't understand the reasoning behind the "bipap" thing at this time but you can look for a DME with the ResMed AirCurve 10 VAuto....that's the current ResMed bilevel machine. ResMed hasn't come out with the AirCurve 11 yet...and it's unknown when it will be available. ResMed is still making the AirCurve 10 VAuto. When ResMed finally does start making the AirCurve 11 VAuto....it will be essentially the same machine as the AirCurve 10.

BTW the term "bipap" is actually a Respironics marketing term for machine that will do bilevel pressures though it sort has become a "generic" term for all brands and models of bilevel machines.
So you won't see the term "bipap" on any model machine except a Respironics machine....and you don't want a Respironics machine brand machine at all. Long story there but multiple reasons why I don't advise people to use that brand anymore.

Did you have a sleep study done using the mask and machine to determine optimal pressures?
Did they explain why they thought you needed a bilevel capable machine?

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Re: Just got AHI (24), waiting on CPAP

Post by Dog Slobber » Thu Jul 14, 2022 7:22 am

Billymadison420 wrote:
Thu Jul 14, 2022 6:56 am
So I spoke this morning with my Sleep Specialist.

He felt that I should be using a BiPAP, not a CPAP. He felt that I should be using a Res Med air sense 11 BiPAP. Additionally they won't be available with my insurance for months and said that the only way to get them immediately would be to buy them outright. I technically could afford it. But I don't know what you guys think. He also felt that the BiPAP may help but it's more than likely that the narcolepsy is what needs the treatment to get me feeling better.
Either you misunderstood your Sleep Specialist, or he doesn't know what he's talking about

The ResMed series of BiLevels (BiPAPs) are not AirSenses, they are AirCurves. Secondly, the AirCurve 11s haven't even been released yet, there hasn't even been an announcement.

Why does paying for the machine instead of using insurance, impact availability? It shouldn't. But you know what it does impact, how much money ends up in their pockets.

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Re: Just got AHI (24), waiting on CPAP

Post by Billymadison420 » Thu Jul 14, 2022 8:22 am

Thank you all. Trust me. I am just as confused as you all are.

The way he explained why I should be using a bi-pap vs. a Cpap was not really understandable, based on my knowledge of sleep apnea and anatomy. I am simply not qualified to understand at this moment. I have an AHI of 24/25 and was diagnosed simply with Sleep Apnea (in addition to Narcolepsy, which is neurological and a separate issue).

As far as availability I was told that with the CPAP shortage, insurance-based coverage has been pushed to the back of the line. He said if I wanted to get immediate treatment I would have to buy it at a third-party facility that has it in stock. He didn't suggest a place to buy it, so I don't think it's a kickback for him. Just the reality of the situation. He said find it wherever you can.

He also said that if he had to guess, it would be the narcolepsy more than the sleep apnea that would be causing my fatigue issues. He said that he had severe apnea patients with minimal symptoms. But he said ultimately that Xyrem/Xywav + CPAP would be the best treatment for me. But to get access to the Xyrem/Xywav I have to try CPAP first. All of it is an insurance song and dance process. He is going to prescribe me Adderall as a band-aid solution (not long term, because I of course don't want to be redlining my body over and over)

And I agree, he misspoke as another poster mentioned it seems like the Resmed 10 series has Bi-Pap (which I now know really means Bi-Level), but not the 11. Finally, no I did not have a sleep test WITH a machine. Only without at home.

Christ I am so frustrated.

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Re: Just got AHI (24), waiting on CPAP

Post by Pugsy » Thu Jul 14, 2022 8:58 am

Who exactly is this person who is telling you all this hogwash?
Sleep tech, DME, doctor, NP, someone else?????

Insurance is certainly paying for machines now and I can't imagine why filing insurance is on the "back burner".
They would have to medically justify to the insurance company the need for a bilevel device though...don't need to prove need with self pay.
And another thing...since you haven't even had a sleep study done with cpap and mask you have no idea what pressures you are going to need so we can't blame the "you need bilevel" on pressure needs.
And another other thing....the AutoSet machine...it can function like a limited bilevel machine simply by using EPR.
It's limited bilevel but it's bilevel.

Now I got no real problem with someone getting a bilevel and maybe not technically need it....I have one myself just because I like it.....the AirCurve 10 VAuto will do everything the AirSense 10 (or 11) Autoset will do and more.
I just hate for people to be led astray and not understand what all is involved and be pushed to buy something out of pocket when they have insurance to pay for it. There are actually some "pros" to buying something yourself but people need to make sure they are making the best decision for them.
Pros....no one to answer to for "compliance usage crap"...no hassle factor which means no dealing with insurance hassles or headaches.
You can still use a DME and insurance for masks and other accessories if you wish.

I just get a bit leery when I see people being told stuff that I know is either not true or incomplete.
Makes me wonder what else they are telling someone that could be misleading or untrue.

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